Caregiver

Someone who provides care and assistance to someone else

Just Say "No"?

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I have never been one to find it easy to say, “no.”  I’m a people pleaser, I guess, but I find delight in making others happy and I enjoy helping people.  However, I guess for my own sake, and, maybe sometimes even for theirs, I should learn to say ‘no’ but how do you know when it’s the right time to do that?  Here’s some examples of times I’ve found it hard to say ‘no’ to Lynn.
When Lynn got his “back pay” from Social Security.
As is true for everyone, it took us long time to get social security benefits.  We had to wait until we could go before a judge who could see for himself that Lynn was totally disabled. So when he got his check, it was rather sizable.  At that time, he had not been in a wheelchair very long and still had good use of both arms.  Lynn loves to surf fish and he was looking ahead to vacation.  He wanted a way to still be able to surf fish and wondered if there was such a thing as a 4-wheel drive wheelchair.  He did some research and found just what he was looking for…in South Africa.  It could go over sand, climb steps, elevate his seat so he could look over things, had headlights, a horn, ahh…it was cool.  It gave him hope that he could continue to do what he enjoyed most in life for leisure time–fish.  But it was VERY expensive!  It would wipe out all the back pay if he bought it.  He really wanted it. To him it was a symbol that his disability would not wipe out his ability to have fun.  It represented freedom and gave him the feeling of being in control and out-smarting MS.  However, he felt guilty about using all that money for a toy.  He looked to me for permission to buy it.  What did I say?  “Yes,” of course.  How could I take away his hope? It was, after all, his money and not money we had already been counting on to pay bills (though secretly, I had several credit cards I wanted to pay off that I had run up with costs associated with his care). But, the main reason was I just could not take away his hope.
Was that the right decision? Yes for his mental health; no for our finances.  To this day, that machine has not worked.  We took it on one vacation and it would not move in the sand. We  sent the motor back to South Africa in March of this year and have yet to get it back.  Right now it’s a huge obstacle in my living room that has no motor and cannot function at all.  Had I known this, I would have said ‘no’ but not knowing this, his hope was more important to me than the cost.  Therefore, I still think it was the right decision because having hope when you are disabled is essential to life.
Purchasing a New Lift Device
Once again I’m faced with whether to say ‘no’ or participate in hope and once again, I’m going with hope.  Lynn wants very much to stand and if possible to walk, again.  Who wouldn’t want that?  He’s convinced that if he works his muscles well enough that he will be able to do so and that it is not the MS that has caused him not to be able to stand but the deconditioning he experienced when he was hospitalized two years ago for so long.  The doctors can’t say for sure though they believe that progression of his MS is the reason for his immobility.  However, with the change in his diet to following the Terry Wahl MS diet and his dedication to exercise, he truly is moving more than he has in years. Who’s  to say that he could not eventually stand if he was able to recondition all the necessary muscles?
The problem with reconditioning muscles necessary for standing is that there are so many of them.  Doing exercises to isolate one muscle group at a time requires considerably more energy than he has available.  Therefore, once again he has done his research and identified a device that will help him stand with assistance.  It’s called a Rifton TRAM. It allows the caregiver to put a saddle under the hips of the patient and gradually lift them to a standing position.  With the saddle in place, they have support in the amount needed to bear weight.  The advantage of this is that by bearing weight, he can activate more muscle groups plus the stress on the bones, makes the bones stronger.  Osteoporosis sets in when there is no stress to the bone and that causes bone deterioration which makes the person more susceptible to fractures.  So by using the TRAM not only could he strengthen muscles to stand on his own but could help prevent future bone fractures. 
We are in the process now of getting the information necessary to the insurance company.  However, even if they do not approve it, he still wants to buy it because he’s convinced of what he can achieve with it…and who am I to say he can’t?
What’s going through my head though?  Will he be crushed if he cannot stand and go into a deep depression?  Can we afford to pay the full price at a time when year-end bills are coming?  His son’s wedding is in four weeks and we have to prepare and pay for the rehearsal dinner as well as Lynn’s clothing and get their wedding present.  Christmas is coming which means presents.  And of course, there are the multiple bills that need to be paid.  Knowledge of all these needs causes me a lot of stress as I agree to buy the TRAM even if the insurance won’t pay. 
I really want it to work for him but I keep remembering that behemoth wheelchair in my living room and don’t want another useless device in my house so agreeing to this takes a lot of faith on my part.  I know however, that God will take us through whatever lies ahead and if it doesn’t work, He will help us both deal with that.  If it does work, then He will be gloried in helping us to get the device through faith. 
So, once again, I just say, “Yes.”

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Supporting Lynn in his Work

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One of the many challenges I face each day is how to devote the time needed to meet the obligations of my employment and give Lynn the care and attention he needs.  I’ve found that whenever he calls me back to his room for assistance during the day, if he’s tired (and what MS patient is not tired most of the time), he will say, “while you’re here, would you ….” Often that request is related to typing an email response for him or copying something off a web address.  Therefore, I find that in addition to my own job, I often am assisting him with his.  Recently, though that has gotten better.
My daughter has decided to be a stay-at-home mom.  That’s great news and I’m pleased that she wants to do that.  I think it’s the best possible world when Mom can stay home with the children.  That being said, in this economy, it also frightens me that she and her husband will not be able to make ends meet.  I pray for them often that they will find a way to be successful in what they have chosen.  While it’s nice for them, I’ve also discovered it’s going to be nice for me. 
Currently, Lynn’s son comes on Mondays and Fridays for a few hours to help him work out and he’s occasionally been helping him, as well, with typing.  On Thursday’s Suzie comes for a few hours and helps him with his marketing and typing.  Now Sarah will also be available a few hours a day on the days he does not have anyone else coming.  That means that he will now have a secretary, so to speak, five days a week who can help him with his manuscripts, internet research, marketing, and email responses. Isn’t that great? It really takes a burden off me to have this available.
There are still some things though that I do for him that he doesn’t want others to do.  For example, Harper Voyager is accepting unsolicited manuscripts during the first two weeks in October.  What an opportunity for Lynn!  As a new author it’s very difficult to get published because many publishing houses will not accept unsolicited manuscripts.  They want them to come through an agent but an agent is difficult to get if you have not been published.  That’s why you hear of more people being self-published these days.  Lynn’s first novel, Rising Tide, was published by Tate Publishing and they were great but Harper Voyager specializes in fantasy/Sci-Fi/supernatural fiction which is his genre.  If they selected his manuscript for publication, they would already have a built-in audience to market the book to.  (all prayer support on that front would be appreciated)
When he learned of this opportunity, he immediately dusted off the manuscript for this second book.  Though his second book had been written, it had been a while since he had looked at it.  When this opportunity came up, he, of course, wanted to take advantage of it, so he began tweaking the manuscript.  Though he writes the books, I edit them, so this adventure was a project for both of us.  Last weekend I stayed up nightly till 3 a.m. editing the book (that’s why I had no blog last week).  We submitted it on Tuesday and I must say, it’s a good book.  He’s done an awesome job with it.  Originally, I thought it was a little weak in some areas but now it’s action packed and flows well. I really hope they choose it as one of their selections because it really is good.  
Though he’s the writer and the books he creates are his projects, I’m blessed to be able to be part of it.  God opened a door for him when he became disabled to allow him a new career.  It’s certainly not an easy career but it’s one that he can do from home when he has the energy to do it and now He has provided Lynn (and me) with the resources to help him participate in his career choice on a regular basis.  It’s so important for someone with MS who is totally disabled to feel productive and useful and to have a job to get up for each day as well as goals to pursue. I think that without that drive to produce, the person is more likely to decline in his/her health and abilities.  God gave us work because we need to feel productive and I am so glad that Lynn has found his new career and has a job to do. 
So keep your fingers crossed that his manuscript for Eden’s Wake is selected for publication.  We might not know for two-three months.  We were told if no news by three months, it was not chosen so we could learn the status by default.  If you like adventure fantasy, take a look at Rising Tide.  It’s a very good read and even was selected as a finalist in the National Indie Excellence Book Award for 2012.  Keep your fingers crossed for us!

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Working from Home

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Someone asked me recently about working from home.  They, like me, had someone they wanted to care for but needed a full-time income.  Knowing that I worked from home, they asked me what type of jobs would allow that option. 
I’ve done a lot of research into telework or telecommuting.  Having worked full-time from home for the past year, I want to say it’s not as easy as it would seem.  If you are thinking about working from home, consider the following.
What Jobs can be Performed from Home?
The first consideration is the amount of interaction you need with others to be able to do your job well.  Do you need to be able to talk to people face-to-face or could you accomplish as much using a phone, email, or maybe a webcam?  I’m fortunate in that my office was already located offsite from the main facility.  People who wanted to interact with me were used to calling or emailing me but I still participated in a lot of meetings where I went to see my “customer.”  A lot of people want that face-to-face interaction with you so even if you work from home, there may be times you need to go on site to be “seen.”  Therefore, you have to decide if the position you are considering can be done strictly from home or do you need to split your time between the on site office and your home office.
What Will your Hours of Work be?
When you work from home, you’re always at your office.  Lynn interrupts me a lot during my “workday” so I tend to work from the time I get up until I go to bed plus I work seven days a week.  This allows me to make up lost time from his interruptions and to keep up with my work load (which is significant.) I can do this in my job because I do a lot of independent project work and I’m exempt (meaning I don’t earn overtime). However, if you have customers who expect you to be available 8-5, you would not have that flexibility.  Plus if you earn overtime, you would have to clock in and out multiple times to keep accurate hours.
How would you handle it if your job needed you at the same time the person you are caring for needed you?  It’s difficult.  I do it all the time so it can be done but it’s not easy and it’s often frustrating.  I have both a speaker phone and a bluetooth device so I can carry on conversations while caring for Lynn.  However, it’s also very distracting to do that and you can miss things both from the person who is speaking and the one you’re caring for.
The other thing about working every day, all day, is that it’s very tiring. You never get away from work. I check my email every time I walk by my computer. I have a Blackberry, a cell phone, a house phone and my computer mail that I check on a regular basis keeping up with my job. I’ve often been on my cell phone when my house phone rang–both calls being work related.  Some people have all three numbers because they know me well.  Others, I do not want to know my personal numbers so they only have my Blackberry number. Privacy therefore, is another issue to consider–both your own and the confidentiality of customer information that you may have.
What about Equipment and Resources?
Will your employer give you equipment to use?  What about the cost of internet service, long-distance phone calls, office supplies, fax machines?  I have a phone line and a fax line that I pay for as well as my internet service.  What happens if one of my lines goes down?  I can’t work at home.  That may mean taking the day off or finding a way to go into work.  If I have to go into work, then I have to find a sitter for Lynn.  That’s not easy to do in the middle of the day.
Do you Need Social Interaction?
As a caregiver, your world is often limited to the person you are caring for.  Most of your time, energy, and social life resolves around that person.  If you also work from home, you almost become totally isolated.  I miss the people I work with.  I’m an introvert but I liked being able to talk to others and share in conversations with other adults.  It was fun to catch a lunch out on occasion and see the pictures of new grandchildren or hear about vacations.  You miss all that when you work from home.  People forget about you. They forget to share their news with you and assume you know about changes happening in the office or company that are discussed in meetings you can’t attend or in hallway conversations.  It’s difficult to feel a part of the group when you no longer share in the daily challenges.  Working from home is very isolating.
The Advantages of Working from Home
Now there’s the good side, too.  I never put on make up.  I don’t fix my hair and I wear comfortable clothes and slippers. The trip to my office is less than 30 seconds away.  I save gas, rarely need new clothes, and no one can see my expression when I’m attending a meeting through air wave connections (which I admit is sometimes a really good thing).  I also don’t catch the latest cold or virus going around so I stay healthier. 
I can give Lynn the care and support he needs.  I can make sure his needs are met in the way he wants them met. I can provide both his physical and emotional support.  But just as those are good things, they are also bad things because it also means I never am free from those responsibilities.  I save a ton of money by caring for him myself.  I don’t, in fact, know how I could afford to get someone to care for him if I could not work from home.  
Conclusion
You might consider working from home if:

  • You don’t need a lot of social interaction
  • Your job can be done primarily by telephone or electronically
  • Your hours can be flexible
  • You have back-up care in case you need to go into the office
  • You can handle not being away from your caregiving responsibilities–EVER
  • You are extremely good at multi-tasking and keeping two trains of though going at the same time all the time

I have to say it’s not for everyone. It’s been a blessing for me.  I’m very thankful I have this option and I fear the day that I might not have it.  That’s the other thing…your employer can always pull the plug on your being able to work from home.  So always, somewhere in the back of your mind, you’re wondering how long you’ll be able to keep everyone happy so nothing changes.  It’s a lot of stress.  It’s a really good option but keep in mind that most people who work from home, just work from home–they are not also trying to care for someone.  I would say that doing so is VERY rare; not impossible, but unusual.
Good luck if you’re considering this option.  Let me know if you have any questions for me.

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Rush to RUSH

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Lynn’s favorite band every is RUSH.  For years, him, his son, his son’s friends, and Lynn’s friends have bought tickets to their concert as soon as they went on sale and anxiously awaited the day they could see them live.  It used to be a fairly big production with a group of 5 or 6 guys spending the night at our house after the concert and reliving the experience while they blasted out RUSH songs as if the concert was still in progress.  He always wanted me to go with them but I am not a big fan of concerts and had rather listen to Christian rock or country music so I would just smile and decline.
He finally convinced me to go to RUSH’s 2010 concert.  By that time I had heard their songs so much that I had learned to appreciate their music, though not as much as Lynn did.  The concert that year was during the time that his health was starting to decline.  I remember the day of the concert his being so ill that I really did not want him to go; however, he stubbornly insisted.  We drove two hours to Jiffy Lube Amphitheater in northern Virginia and just left in time to get their before the concert started.  Lynn’s friend from his former job went with us and was going to sit with Lynn while I sat with the rest of the group many rows back.  I could not enjoy the concert at all.  Knowing how sick Lynn was, I constantly was looking for him and checking my phone to see if John needed my help.  At intermission I found them.  They had never made it inside.  Lynn felt too bad to be among the crowd.  I tried to get John, his friend, to go inside and let me stay with Lynn but he’s a very loyal friend, and choose to stay with us.  Shortly though I managed to convince Lynn that we needed to take him home and we left.  That was the beginning of a very long period of illness and hospitalization so for me, a RUSH concert did not bring forth pleasant memories.
Fast forward two years and guess who is back in town?  RUSH.  Guess who is going again?  Me and Lynn.  This time; however, I’m sitting with him and he’s feeling well enough to enjoy the show.  However, he is still fighting the fatigue and irritability that comes from getting adjusted to Rebif so the trip up was not as much fun as expected.  We took the van, of course, and I connected his peddlar to him so he could pedal all the way to northern Virginia but he just could not relax. 
About 45 minutes before show time, we got to the road leading to the entrance of Jiffy Lube park.  Traffic was not moving!  The concert was due to start at 7:30 and i took till 7:30 to move far enough ahead that we could pull into the entrance to the park.  To make matters worse, Lynn was convinced I was going the wrong way to handicapped parking and was “losing his cool” while I was losing mine in trying to maneuver through thousands of cars. (By the way, I was right about the direction I was going.)
We had left early enough to be able to eat a packed lunch I had brought just before the show…or so we thought.  Since we arrived right when the concert was due to start, we sped out of the van and toward our seats.  RUSH always does something unique for the beginning of their shows so Lynn was determined not to miss it and upset because he knew he would.  Well, we made it on time.  Our seats were as good as you could ask for considering he was in a wheelchair.  We were located between the cameras and sound equipment so no one could stand up in front of him!  Perfect! I could not see as well as he could but I didn’t care as long as he got to see the show.
Just as we got to our seats, the show started and Lynn began to relax.  Knowing though that he needed to eat, I got him comfortable and proceeded to pour him soup into the top of a thermos container.  I first poured the liquid and handed it to him to drink.  I should have known better but it was a small, light-weight cup so I thought he could handle it.  I was wrong.  As he took his first sip of hot onion soup, the full cup fell out of his hand and soaked his shirt….We just looked at each other and laughed. I asked him if it was warm enough and he said, “for now, but cooling off fast.”  Fortunately, I had brought in a blanket to help him stay warm because the temperature was supposed to drop to the 50’s that night.  So, since I did not have a spare shirt with me, I took the blanket, covered his legs and stuffed the rest of it under his shirt so that the wet shirt would be able to dry without touching him.  Then I proceeded to feed him his dinner, only this time, I held everything.  We probably looked rather comical. Here I was with a load of supplies feeding him soup from a thermos while a rock concert was blasting away and he’s covered with a blanket stuffed under his shirt. I kept thinking to myself, “a caregiver never takes a holiday or goes on break; you always have to be prepared for the ‘what if’s’ of life.”  
I finished feeding him dinner, got him comfortable again, and went in search of food myself. The rest of the concert was uneventful and enjoyable.  It was actually the first date we have had since he became immobile so it was nice to be out, with just the two of us and several thousand of our closest unknown companions.
When the concert ended, we waited for some of the traffic to head out and then loaded up for the trip back home. We were directed to leave by a different route than we came in.  So needless to say, we got lost. We started heading west to Fort Royal instead of east to Washington. Finally found out way back heading east to the 95-south connection and finally headed for home.  He was exhausted but content.  He fell asleep not long after we got on the road.  Other than a lengthy delay for construction, we made it back without issue.  I woke him up, got him inside and settled, then fixed our dinner (at 3 a.m.) and off to bed at 4.  He was very tired; as was I; but glad we made the trip.  He’s already planning for the 2014 tour!  I think next time I’ll pack finger foods and an extra shirt…..

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The Healing Touch of a Baby's Smile

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Elijah

Shortly after we returned from vacation, my daughter started having a lot of right-sided pain just under her ribcage and nausea. After a week, instead of it getting better, it was getting worse.  She called me to “consult” on what I thought it might be (nurse to nurse).  I ruled out liver problems, thought it might be muscle irritation but knew she needed to get it checked out.  I told her to bring me the baby (2 1/2 month old Elijah, Eli if short) and go get it checked out. Being that it was the weekend, she and her husband went to the emergency room. A quick work up ruled out anything serious but they suggested her gallbladder might be the issue and recommended a follow-up to her primary care doctor.
Her pain was not getting better and was at times worse so she got an appointment the following week.  The doctor immediately scheduled a STAT CT scan.  As she was coming into our house to pick up Eli, she was hanging up her phone, “Mom, I’m going to have to have surgery!” 
Surgery….  Wow. 
I immediately went into “mama” mode, getting what details she had and reassuring her that we would be here to help her out.  Apparently she had multiple gallstones which were periodically blocking her bile duct.  If one lodged there, it would be emergency surgery.  Regardless, she needed surgery as soon as it could be arranged.  He also told her she could not “jiggle, bounce, or do any other jerky movements and could not carry heavy items.” Eli is a fussy baby and we do a LOT of bouncing with him to calm him down.  So, we came up with a way to reduce her risk of bouncing.
After I get Lynn through his morning routine, I run over to her house, about ten minutes away, pick up Eli, and bring him back to our house.  During the day I rotate taking care of Lynn’s needs with Eli’s often while handling requests from work. The first week wasn’t so bad.  My parents came up and totally took over the “Eli” job.  They were awesome and loved every minute of it; however, when they went home to take care of a few things, they found their floors had been flooded by a cracked toilet fixture and there was mold and ruined carpeting to address.  I felt awful.  Had they not been here helping me, their things would not have been ruined.  I also admit though I was very disappointed they could not return here because they had been wonderful with Eli and I really enjoyed their stay with us (they live five hours away from me). But when life throws you a curve ball, you take a swing and see what happens.
Actually, though it’s like Grand Central Station here with everything I’m trying to do, it’s really rather enjoyable.  Eli is a great diversion (in more ways than one).  He’s now three months old and loves to smile.  He recognizes me and my voice, as well, as Lynn and his voice.  Though Lynn can’t do as much with him as he would like, we have developed a way of allowing him to help out with “sitter duty”.  When Lynn is lying down, I put Eli under the arm that has limited movement and wrap it around him.  Eli is then lying with his head and back against Lynn’s side.  Lynn sings and talks to him and Eli coos and talks back.  When Lynn is in his wheelchair, I have a “rocking chair” for the baby that allows me to strap him in and it has a play bar over it.  Lynn keeps the rocker moving when the baby gets fussy and entertains him with songs and stories. I also often lift Eli so he’s eyeball to eyeball with Grand-dad for some heart-to-heart conversations.
Eli is like a drug for Lynn.  Before I go and get the baby, Lynn might be feeling tired and out of sorts.  Once I come back and Eli gives him a few of his famous grins and gurgles, Lynn just lights up!  He laughs with him and forgets for the moment all his frustrations and hardships.  He told me after the first day that we kept Eli that he was the best medicine he had every had.  He calls me to bring the baby back to his room for a visit, often throughout the day and each time, their bond gets stronger.
My daughter’s surgery is now scheduled for September 7.  She will not be allowed to lift Eli at all for three weeks afterwards so his Dad will drop him off here when he goes to work and pick him up when he comes home.  Mom might come initially but I expect it will be easier for her to resist the temptation to pick him up if she stays home. It will certainly be hectic but I’m actually looking forward to it. 
Having a baby around is healing.  He brings joy and the promise of bright tomorrows.  It’s wonderful to watch him discover the world though his hands and feet and see the amazement he experiences over things we take for granted.  It’s really a blessing of healing having him here. … (Though if you want to send up a few prayers for my sanity and stamina for the next four weeks, I wouldn’t object!)

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Going Out Isn't Easy

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For most people, deciding to go somewhere is simply a matter of making the decision to go and then going.  For people who are mobilized through the power of a wheelchair, that process is a little more complex.
Lynn and I have not been to church since he was hospitalized almost two years ago.  He is now stronger and he is starting to adapt a bit better to the Rebif shots so we are considering trying to make a trip to church.  However, for us, that takes a lot of planning and foresight.
1.  What will he wear?  Lynn currently dresses for comfort and convenience.  Comfort related to the movement of limbs that need to be positioned, careful selection of where seams occur (since sitting on one for long periods when you cannot shift yourself is very uncomfortable), and something that is not binding, scratchy or constricting.  Usually he wears a long sleeve T-shirt and compression shorts with knee-high toe socks.  Not the most fashionable outfit but very comfortable and functional.  The other consideration is the ease for intermittent catheterization or if he’s using an indwelling foley, location of tubing and bag. Since he wears his same outfit to doctor’s appointments as he wears at home, he has not had on a pair of dress paints since PH (pre-hospitalization).  Does he have a pair that fits and could be comfortable for at least three hours?  Would they easily accommodate catheter needs?  That is yet to be determined.
2.  Bladder needs.  If we are making a trip to the store or doctor’s office, I take catheter supplies and cath him discreetly in the van or public restroom (if the location has a unisex and private restroom available.)  If we go to church, that’s an issue. He can’t leave in the middle of a service to be cathed; that would be disruptive.  However, he hates wearing an indwelling catheter in public with a tube leading to a bag of urine.  It’s embarrassing for him and it grosses some people out to see it–plus it makes him appear sick.  He isn’t sick; he’s mobility challenged, so to speak, but otherwise not ill. He doesn’t want those sympathetic, pity-type looks.  He wants to be viewed as whole and functional.  He doesn’t want to be written off as not being able to contribute or considered a subject of pity.  The urine bag represents that for him so it’s a struggle to make the decision to go somewhere like church with an indwelling catheter in place… though practically speaking, it’s the best option.
3.  Accessibility.  Can we get into the building and once inside navigate to where we need to go?  Before going anywhere, I usually like to do a dry run to look to see where the handicap parking is located, do they have ramps, elevators or stairs, etc. You would be surprised at the locations that you cannot access.  For example, we went to a lawyer’s office that had the required slope to the sidewalk so he could get to the front door; however, the slope was at the end of a sidewalk.  The sidewalk ran in from of parked cars.  On one side were cars and bumpers that extended over the sidewalk; on the other side was loose rocks used in landscaping and a significant dip off the sidewalk into the rock.  As he attempted to negotiate the sidewalk and move around the cars extending over the sidewalk into his path, his wheelchair wheels went over the edge and his chair very nearly toppled over into the rock.  I had to go inside and get the lawyer to help me lift him and his chair back onto the sidewalk.  Then we proceeded to the front door which was a good three inches above the sidewalk.  His chair can’t make it inside so we met in our van.  You would think a lawyer’s office would be better equipped. However, we are often surprised at who is not equipped.
Case in point–when we went to the Social Security Disability hearing in downtown Richmond.  I was amazed that there was no disabled parking available except down a step hill.  There was no curb slopping directly in front of the building.  I had to unload him and his wheelchair (that was before we got the wheelchair van and was using a manual chair) into mid-day traffic!  The entrance doors were not automatic and neither were the bathroom doors in the SS office!  Again, you would think a place that caters to the disabled would be better equipped!
Now back to my plan to go to church.  Our church is an old building.  It has an elevator but it’s small.  To get to the sanctuary, you enter the wheelchair into the elevator through a side door, then it goes up one floor, but the exit is at a 90 degree angle to the entrance door.  It’s nearly impossible to maneuver a manual wheelchair with a large man in it into the elevator and out the door one floor up.  There’s no way to get his powerchair in there with him in it due to the leg supports and foot pedals extending too far out.  So if we go to church, we will have to use a transport wheelchair.  The transport wheelchair is not designed to adjust in the ways he needs to remain comfortable sitting for an extended time.  I’ve considered putting him in the manual chair and trying to send the powerchair up without him in it but even with all limb supports tucked in close to the chair, I’m not sure we could maneuver the chair out of the elevator. If he’s uncomfortable, he will not be able to focus on the sermon or enjoy the fellowship so we have to take that into consideration.
4.  Finally, germs.  He’s very susceptible to infection.  He has an autoimmune condition, after all, so his immune system doesn’t function properly.  If he gets a cold, or heaven forbid, the flu or a GI virus, it could put him in the hospital and all he has gained since his last hospitalization could be lost again.  Therefore, once the cold weather sits in and people start spreading those nasty germs again due to being enclosed in crowded places, we will have to avoid public areas. I’ve jokingly told him I would put a plastic suit on him so he could shake hands and hug people but that might not be the most comfortable solution either.
So, we are not decided about going to church tomorrow.  If we can find clothes today, figure out the catheter question and get the backup plan in place for a wheelchair access, we might get there.  It would be nice to hear the choir and fellowship with the congregation.  We miss seeing them and being a part of worship but we are fortunate that if we can’t work out the process, we have the sermons online to fall back on.  Keep your fingers crossed that we will make it in!

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I DON'T WANT TO BE A MAN!

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As a caregiver, I’m asked to assume many roles–comforter, nurse, counselor, banker, chauffeur, and many others; but the one role that I really hate is being the man-of-the-house.  I’m sure the same holds true for men who are caregivers to women.  I would venture to say that most caregivers are satisfied with their God-given gender.  I know I am.  I like being a woman accepting both the bad with the good.  It’s a role I know how to do since I’ve been this way for 55 years.  On the other hand, I was not born a man and I do not have any desire to become one, compete with one, or assume the responsibilities of one, but that’s what I’m asked to do at times.
What caused me to get on this soap-box you may say?  My car.  I went out to the car while my step-son was here to stay with Lynn so I could go to the grocery store.  When I climbed in and reached up to adjust my rear-view mirror, it was not there.  Instead, there was a cord hanging down with the mirror at its end and a black bar in the seat beside me.  Needing to get to and from the store quickly, I left it all there and took the van instead.  When I got back, I told Lynn that I would need to call our mechanic on Monday to get him to fix the mirror on the Impala.  Lynn’s response was, “You don’t need to get Ronnie to do that, you can handle that yourself.” He then proceeded to tell me how simple it was to take the mirror apart and glue it back in place. 
Now any of you men out there who have ever repaired a mirror that has come unglued will realize this it really does not take a rocket scientist to repair this situation nor do you have to know how to tune an engine or use a lot of tools.  You’re probably shaking your heads saying, “Yeah, it’s a five-minute fix.  Don’t pay a mechanic to do that.” That was Lynn’s opinion, too.  Mine was, “well if it’s so easy, then you go out there and do it.” 
Ouch!  Not very sensitive of me, I admit.  My purpose was not to make him feel bad about not being able to fix the car but to instead emphasize that while it’s easy for some people but not for everyone…including me.   Perhaps it IS so simple a process that even I could do it, but I DON’T WANT TO KNOW HOW TO FIX MY CAR! 
In exasperation, I declared, “why do I need to make a special trip to NAPA (which is next door to our mechanic) to buy glue, then figure out how to disassemble the casing (or whatever) on the mirror mount, glue it and then reassemble it all, probably getting frustrated and stressed in the process when I can take it to Ronnie and he can do it in five minutes, on the first try?”  Sure I could save some money.  I might even feel a sense of accomplishment for repairing it myself BUT I have enough to do with what I have to keep up with every day. I don’t want to learn something new.  I want to go see Ronnie and have him fix it.  He’s a mechanic and a good one; let’s let him have the business, okay?
I do realize, it’s really not about fixing the mirror.  What I’m upset about is having to learn to do things my husband used to take care of so easily.  He was a carpenter.  He was very good at doing repairs to homes and vehicles.  He knows his stuff so well that his first response is to tell me I can fix it myself with him telling me how.  What usually happens instead is that I get stressed and frustrated and he gets stressed and frustrated–for different reasons–and neither of us is happy. I may eventually get the thing fixed but I resent having to do it. 
There…that’s it.  I resent having to do it.
I resent the fact that I have to be both the woman and the man of the house.  I felt that way some when I was divorced because I had been left alone to fend for myself, but now I have my spouse who wants to help but can’t.  He gets frustrated and angry because he’s not able to help me. Then he feels depressed and inadequate because he sees me struggling to do it all.  I’m juggling so many plates in the air at one time that I can barely keep them going before they all fall down.  He hates to ask me to do one more thing but knows that if he could just explain it well enough, then he could still be useful by saving us money on repairs. But then if I take on the new task, nothing gets taken away; it’s just one more thing to do so I debate, “do I try to fix it with his help or call someone else for assistance?” Lately, I’ve been calling more because I realize I just can’t do it all and I don’t want to be the man anyway.
There are times I swallow my fear of failing when something needs to be done and I try to do it myself.  When I succeed, I admit, I feel proud but I’ve learned I have to balance my life.  Sometimes, it’s best just to ask for help, so come Monday morning, I’ll be making that call to Ronnie, “Hey, can you fix my mirror?”

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God's Blessings

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Often my journal entries discuss the challenges of being a caregiver but today I want to share a blessing–my church family.
Before Lynn was diagnosed with MS, he and I were very involved in our church.  We both were in choir; I helped produce drama enactments to support the sermon;  Lynn played drums for the praise band; we both played  hand bells; and we both were in dinner theater productions.  Three years ago, Lynn had to drop out of most of the activities he did due to fatigue and loss of coordination and strength.  Two years ago, I had to drop out due to my need to be home to care for him.  Since December 2010, neither of us have been able to attend church but are blessed to be able to attend through listening to the sermons on the church’s internet site.
Though we were well-known when we attended, there were many people who did not know us when we attended and I am sure that there are many more who have never met us or had any contact with our family since we had to stop attending church.  I share that fact to emphasize that the blessings we receive from our church are not due to a family connection or special relationship.  No, the blessings we receive from our church are due to the outflowing of God’s love for us through them. I think you will agree when you read what they have done for us.
First off, we are on the prayer list regularly and we get uplifting cards for all occasions and sporadically throughout the year telling us that we are being thought of, prayed for and remembered.  That is such a comfort when we live our lives in somewhat of an isolated fashion.

  • When Lynn started having difficulty walking, a group of men put in a ramp on the back of our deck so he could come in and out using the wheelchair instead.  Without that ramp, he would not have been able to leave the house for medical appointments much less any other trip.  The labor and supplies were provided by church members.
  • We asked who in our church could advise up on getting a handicap shower installed.  Within days, a shower had been ordered and two men from church installed it.  Not only was the labor free but the shower was provided by donations from the church members.
  • When Lynn was in the hospital two years ago and I was depressed because I could not decorate for Christmas, a group came over and decorated our home.  Not only did they decorate, but discovered that our refrigerator was on its last ice-cube and they got us a nice second-hand one that works wonderfully (without multiple containers to catch the leaks it produces like my last one.)  Last year several people came over once again to help with putting up decorations AND taking them down.
  • Groups have come over to rake leaves, mow grass, clean up debris after storms, and do all types of yard work.  One group came and tore down an old play house and a fence that was falling down.
  • One of the angels from our church cooks for us each month.  She fixes all of Lynn’s special diet meals and freezes them in individual containers so all I have to do is thaw out a meal when it’s time to feed him.  You can’t image (or maybe you can) how much I appreciate not having to take the time to prepare those meals three times a day.  Several members contribute to the cost of the food she prepares so that most of what he eats, doesn’t cost us a thing.  There is another Sunday school class that brings us bottled water every two weeks.
  • One of the members comes each Thursday to help Lynn with his writing (typing).  She helps him write his blogs or chapters in his book or whatever other correspondence he needs to get out so I can concentrate on my work.

If the church finds out we have a special need, they take care of it or at least help us find a way to meet the need. Every once in a while we even receive donations to help us with some of our expenses (which you know are a lot if you’re caring for someone with special needs.) I know there is much more they have done than I have listed here.
In fact, what lead me to write this was what happened while we were on vacation.  We came home to a house that had a new coat of paint, a newly stained deck, and fresh landscaping for my azalea beds!  A group got together to spend their time off this past week painting our house while we were on vacation!  What a blessing they have given us!
Our church, Gethsemane Church of Christ in Mechanicsville, Virginia, (http://www.gethsemanechristians.org/welcome/) is a God centered place of worship.  Their mission to follow Christ faithfully through word and deed and to demonstrate Christ’s love through action.  The blessings they have provided our family are not unique to us.  They have done the same for many other members.  If a member has a need, they try to help.  They are not a wealthy church or a large church; they are a rural community church made up of average people who love their Lord and each other.  We are truly blessed by their generosity and faith and by the Lord that they (and we) serve. 
I wanted to publicly thank them for their love and support over the years.  As a caregiver, I can’t do it alone.  As a person with MS, Lynn has much he cannot do.  But through the love of Christ demonstrated through these saints of the Lord, we are truly blessed each and every day. 
I hope you are fortunate enough to have such a church family as well.  Their actions are not about religion or a particular faith-based group but are instead a commitment to the Lord Jesus Christ, our savor, and our healer, who never forsakes us and who will be there for anyone who chooses to be his follower.  Thank you, Lord Jesus, for being there for us.

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Was That a Vacation?

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We were on vacation when I wrote this blog this week. I was not able to post a blog this week because, unknown to us, the condo we use changed their practice this past year and each home owner is now required to provide their own internet service to their renters.  The home-owner for the one we rented, apparently decided internet access was a non-essential amenity for their guests (I found out later that most initially believed that to be the case but most are changing their minds now with all the complaints).  Fortunately, the condo office allows you to come to their lobby and “borrow” access while there. Unfortunately, for some reason, I could not get my computer to work with their service (probably my limited knowledge of computers being the “fault” in this case.)
Every year I look forward to vacation and being at the beach.  Lynn’s son and fiancé, goes with us as well as my daughter, her husband, and this year we have the addition of our new grandson.  The family time is wonderful and something I really look forward to but vacations now are very different from years gone by.
First off, the preparation is different…all preparation, along with all the daily activities of our home-life are my responsibility.  Periodically, Lynn would provide instructions like…”don’t forget my small white fishing rod,” (which I forgot) and “I want to bring the red and blue weights to use to work out…no change that to the small and large gray ones…no I think the red and blue ones will be enough…” By the time I finished packing, I had ½ a suitcase of clothing for myself, my computer, and a few books (none of which I had the opportunity to read other than a few chapters in one) and everything else was about Lynn.  I brought an extra-large cooler for all his specially prepared food; clothes for hot, cool, cold, and warm conditions plus layers for in-between; exercise equipment; shower and toileting equipment; his medication and supplements (which aren’t a few); his peddler (plus a spare in case one broke); his foot massager; catheter supplies; nebulizer and supplies; spare wheelchair; spare cushion for power chair; charges for all aforementioned equipment; a microwave for our room; and many other miscellaneous supplies.  Yes, I packed our house.  I barely had room for us in the van!
Then the drive down is very different.  He used to do all the driving because I get very sleepy when I drive.  Now I do all the driving and just being the passenger is extremely tiring for him.  It’s a debate whether to stop and let him out of the van to rest or to keep going so he can lie down when we get there.  Since we were traveling with a new baby in the car behind us, we stopped a few times for feeding and coffee for me so I could stay awake before we decided to travel separately.  Once we got to the condo, it was time to unpack and arrange everything…no small feat.
It took almost two days for Lynn to recover from the trip.  During that time he needed almost constant attention…and he seems to think I’m the only one who can do anything for him.  By Monday night, I was in tears.  My family vacation was no more than me in a room with the door shut (because Lynn was cold) taking care of Lynn’s every need and him  being unhappy because he didn’t have access to the internet, the cable package in the condo was limited, and he felt lousy, exhausted, and miserable.  Plus he decided he would try standing up with the help of our son and son-in-law…which didn’t work at all, so he was depressed about that.  What a vacation!  
I finally spoke up and shared my depression about spending our entire vacation shut up in a room with our children in the next room but inaccessible to me.  He realized what he was doing and then it got better.  He came out of our room each night after that point for us all to watch a movie together plus I put in an indwelling-catheter two days and managed to go to the pool for an hour (where I slept).  In fact, I’ve spent a lot of time on this trip sleeping.  I think my body is trying to tell me something.
So after a rough start, things got better.  The others put in a lot of effort to make sure I had some “me” time.  I had to remind Lynn periodically that others, besides me, could help him when he needed it but he would better at asking others for help when I reminded him of that fact.  Plus on Thursday when he tried to stand up again, he actually did better.  He could not really stand but he was almost there, so he was more satisfied with his efforts.  We also watched “JAWS” together and had a JAWS breakfast in honor of the meal scene in the movie.  It was a very nice time of family sharing.
One morning we got up at 5 to go fishing but by the time he could get ready, the sun was too hot and that trip was cancelled.   We tried again the next day, skipping some of his morning routine, and he managed to be on the pier for about two hours before he had to come in.  He was too tired to hold his own rod though which was a disappointment.  He tried twice but just didn’t have the strength to control it.
Today is the day after we got home.  I’m exhausted and irritable from the unpacking and trying to get caught up.  He’s exhausted and irritable from the traveling and being very needy but I guess things will settle in soon.  It’s good to be home though where at least he can get on the internet to entertain himself and watch his favorite programs.
So, “Was this vacation?”  Yes, it was…and one was able to enjoy periodically.  Different from the ones in years gone by but one still full of family and love and occasionally relaxation…just different from what we did in the past.
… Just another adaptation that comes with being a family caregiver.

Was That a Vacation? Read More »

There Go the Apples!

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The life of a caregiver and their “caree” is always in such a delicate balance that I think of that old saying, “don’t tip over the apple cart.”  When I hear that analogy, I have a vision of a small cart piled high with apples, holding its own until someone puts one too many apples on the pile, and then the whole stack comes tumbling down…or maybe it’s similar to a house of cards?  Not sure which but I do know that it doesn’t take much to upset the balance.
In our world, balance is the secret to having a good day.  There needs to be a balance of sleep versus awake time; my work and his routine; his needs and my available time.  There also has to be an emotional balance.  We can cope with the routine aches, pains, fatigue, and malaise but throw in more pain, fatigue, frustration, or sleep deprivation than usual then the balance is gone and we have to work toward establishing equilibrium again….whatever that is on that particular day.
What threw us off this week was Lynn’s powerchair.  We’ve known for some time now that the motor was sounding as if it was going to go out at any time.  When we checked with our “chair repair man” however, we found out that insurance would not pay to have it replaced until it actually went bad. I know that motors are expensive (over $1400) so I understand that the insurance company doesn’t want to replace one unless they know it’s essential, but obviously, they have never had to survive a broken wheelchair!
Lynn’s powerchair is the Cadillac version.  It has three speeds, the legs elevate, and the chair tilts, among other things.  He uses the leg lift and the tilt function off and on all day to achieve comfort. When his legs get stiff, he elevates them to different positions.  When he scoots forward after a while and ends up sitting too far forward, he tilts back and gravity helps him slide back so I don’t have to lift him. These are just two of the maneuvers he does with it all day but there are many more.  Suddenly on Wednesday, he goes to tilt back to adjust his position and there is no response!  Fortunately, he was not tilted back like he was being launched into space; he was on the ground; but the impact of losing “tilt” was enormous for his quality of life. 
Since he could no longer tilt, he could no longer help me in shifting his position himself so I had to lift him more; therefore, my back is more sore.  He could not position his chair in the slight tilt needed to keep his knees from hitting the keyboard on his computer when he worked. It interfered with his comfort in sleeping (he sleeps in the chair), his exercising, his moving from place to place with his legs dangling, and so much more…but the worst was that it keep him from being able to shift his weight as he sat for hours.  By not being able to shift slightly ever so many hours, he experienced “butt fatigue” so he could not get comfortable.  His buttock skin stayed compressed longer so it is redder and he now has a couple of top layer skin tears.  There was even more impact than this but that’s enough for now. Let me just say that it was traumatic….for us both.
In our house, “if Lynn ain’t happy, nobody’s happy.”  When he’s uncomfortable, he looks to me to find a way to make him comfortable which means constant interruptions.  At times he gets angry and frustrated but that blows over.  What is worse is the sadness and worry in his eyes.  He wonders how long he will have to suffer and what the impact will be…because when the balance is off in an MS patient, bad things often happen.
Fortunately for us, it didn’t this time.  I cheered with joy today when the doorbell rang and it was the repair man with a new motor. We were both very grateful for his ability and house call.  The chair is now fixed; Lynn is comfortable again; and I should be able to get his poor butt back to health without too much trouble.
So once again, balance is restored.  We both prayed for God to help us during those hours of waiting for the repair man…and he did.  We worked together to make Lynn more comfortable and to reduce the discomfort as much as possible. … and where we could, we joked, or made light of the problem.  Using humor, seems to lighten the load so we try that out when we can.  Sometimes it works and sometimes it falls short, but most of the time we have at least a few minutes of respite to forget the seriousness.
So anyway, watch the apples you put on the chart.  Try to keep a balance.  When the focus shifts to the front, then try to lighten the back and get back the balance.  It helps to make the waiting time go much faster.

There Go the Apples! Read More »

So Many Choices

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Have you ever stopped to think about how many choices you make in a day? Mine start before I open my eyes

  • Wonder if Lynn will know I’m awake if I pretend to still be asleep?
  • What time do I really have to get up to be ready by xxx?
  • Do I want to get up now or just lie here?

Those are simple choices without much consequence.  Then as the day wears on, more difficult choices have to be made

  • Do I take this call that’s probably from work or just let it ring while I put Lynn in the bed?
  • I’m hungry but if I heat my food up now, he’s probably going to need to be cathed soon so it will get cold?
  • I really need to go to the grocery store but he’s so tired and feels so bad can I make it another day without xxx?
  • Do I agree to come in for the meeting or try to arrange it by conference call?

Those type of choices take more thought and calculation so the difficulty level is slightly more, but what I’ve encountered this week in talking with others who are caregivers is that often the choices are much more difficult and have a potential to deeply affect many.
One person I spoke to was trying to decide whether to limit the number of hours they worked in the office by going home at a certain time each day and hopefully finishing up from home.  While that sounds like a simple decision to make, if you’re a manager in an office and a crisis occurs, you have responsibility to see that it gets addressed.  If you say, “I have to go home to feed my xxx,” then you risk being viewed as being unreliable or not caring about your job. 
Those who are not caregivers don’t realize the internal turmoil that we caregivers often go through each day.  Each decision we make impacts not only ourselves but the one we are looking after and sometimes others as well.  For example, in my job I offer guidance to managers on issues often related to conflict or safety.  I often have to choose when to make a call or check for messages as opposed to answering a “call” from “down the hall” related to a comfort need.  While I often try to do both at the same time, there are times that I need to concentrate solely on one or the other.  In those situations, someone has to wait so I have to determine whose need is greater at any given moment and who might be at greater risk of harm if I don’t choose them? Making that decision often produces tension and anxiety into my day. But even when the decisions are not as potentially risky, every time I have to make a decision, it seems something has to be postponed or denied while something else is addressed. 
Do you ever get tired of making all the decisions?  I do.
On the other hand, making the decisions gives the decision maker power.  Poor Lynn is totally at my mercy to make decisions in his best interest.  Our relationship has to be solid so that he can completely trust that I will consider what he wants and do what is best for him, if possible, or as long as no one else is hurt.  I guess that’s one reason why when I make a decision that does not put him first, I have a twinge of guilt.  He doesn’t get to have the choice; I do.
There are times though that the one being cared for gets to have the final say.  I think about someone I know whose husband had to have his larynx (voice box) removed, shortly after suffering a stroke which paralyzed in his writing hand, and affected his eyesight.  He had virtually no way to communicate his wishes.  He made the decision to die.  He stopped all medical treatment.  He was of sound mind.  Faced with a lifetime of not being able to communicate, read or write, he just decided he had had enough and was ready to go home to heaven. His decision…not hers and she had to honor it–that’s tough.
As much as we might get tired of making decisions, it’s one of our most important functions as a caregiver.  We need to know what the person we are caring for values in life; what their personal preferences and choices would be in most situations.  Then we need to respect that choice even if it’s not what we personally would want.  This is especially difficult when you don’t agree with the decision or the decision adversely affects you in some way.  I’m thinking now about a conversation Lynn and I had today.  He’s still feeling lousy from starting Rebif.  I told him I thought that if he wasn’t feeling better by the end of summer, he needed to come off it.  He said he planned to give it a full six months which would be closer to the end of October.  I realize he needs to make that decision even though I, too, have consequences from his taking the medication (he feels worse so he needs more help, he’s depressed and angry at times, and I just hate to see him feel bad every day all day).  So sometimes not making the decision can be just as hard as making it.
One other decision, I recommend you make.  If you haven’t already, ask the one you are caring for to make you his/her medical decision maker in the event he/she can’t make their own decisions.  If you’re the legal next of kin maybe it’s not as important, but I’ve found that even now while Lynn’s perfectly able to make decisions on his own, that document gives me credibility when I’m talking to his medical team about options or trying to obtain information.  I highly recommend you get that signed in advance and give the medical team a copy.  It also wouldn’t hurt to go ahead and designate someone on your behalf as well.  That would be one less decision that has to be made later on….

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"Cut! Take Two…"

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In the early days of my journey as an MS Caregiver, Lynn would fall, or we would get into a situation that was difficult and we would look at each other and laugh. We coped with a lot of our hardships by laughing at how bizzare the situation would become as compared to our lives pre-MS.  A friend of mine reminded me this week that when Lynn used to fall, I would pause for just a moment and listen, then call out to the back of the house where he usually hung out and say, “anything broken or bleeding?”  If the answer was, “no,”  I would just keep on with what I was doing and never miss a beat. 
I remember how difficult that was at the time–that is, to just let him fall and not immediately go to help.  That took a lot of will power on my part.  Now I find the opposite happening.  He will let me do almost everything for him if I don’t remind him to try it himself first.  I was wondering when that change occurred and I think it happened when he was in ICU for so long.  He couldn’t do anything for himself and got used to me doing everything for him.  Then when he came home, he was still too  weak to do much on his own so I continued giving maximum care.  Gradually over time it became a habit so that now, we have to consciously stop and determine when should I move his arm for him and when should he do it himself?  That was also when I began to tell myself that he was taking advantage of my being helpful.  Or I would say to myself, “he could do it himself if he would just try”…I think that’s also when we began to laugh less.
For example:
I got upset with Lynn this week over something that was absolutely not his fault. I was trying to take some type of device that cuts circles out of wood out of the electric drill.  It was in there very tight and now that my arthritis is so bad in my thumb joints, I have no strength in my hands.  So as I was struggling to get it out, it cut my finger. Just a small cut–didn’t really hurt much, but when Lynn tried to reassure me that it couldn’t cut me if I held it right, my feelings got hurt and I almost cried. I also got aggravated and curt in my comments and with an edge of hysteria to my voice, threw my hands in the air and said, “I just can’t do it.  Can’t you see that I just can’t do it?  I cut myself!  See? Right here. Why do I even try to do work with tools, etc. etc. etc.”  Lynn’s reaction then was to try to do it himself…which he can’t and I’m annoyed that he feels like he has to try and I know that he’s feeling bad because I’m feeling bad and downward we spiral….
Finally, I stop the spiral and explain.  “All I wanted you to say when I got cut was, ‘I’m sorry. Are you okay?'”  His response to that was, “Oh.  Why didn’t you say so?”  UGH! 
Later, I thought about what happened and why and here’s my insight….
When I got cut, the following thoughts went through my mind in rapid succession.

  • “Oops, I cut myself.
  • Oh, no.  Now I have a cut which will burn when I have to wash clothes and dishes in a few minutes.
  • Why do I have to clean up after his friends when they use his tools?  That’s just more work for me.
  • I’m stupid when it comes to tools. If I knew how to work with tools better, none of this would have happened.  I know how to use a drill.  What’s wrong with me?
  • He (Lynn) just expects me to do everything.  He expects me to do everything he used to do plus everything I need to do for him plus everything that needs to be done around the house and work full-time and do it all perfectly.  He doesn’t ever think about what I need.
  • He doesn’t care that I got hurt.
  • He doesn’t appreciate what I do.
  • My life is miserable and it will never be any better.”

All those thoughts went through my head in a matter of seconds.  Based on what I told myself, I went from a simple, “oops, I cut my finger and need a bandaid,” to, “my life is miserable and it will never be any better.”  Now if I had put the brakes on my internal conversation after the first bullet, I would have gotten the bandaid and moved on.  Instead I sulked for a while and made both myself and Lynn miserable for a while. 
None of those things I said to myself other than, “I cut my finger,” were true.  All the rest was just me feeling sorry for myself and telling myself a story to reinforce my self-pity. What a waste of precious time.  If I had instead just laughed and said, “what a klutz,” or “looks like the drill is working,”  I would have felt better in the long run, Lynn would have felt better, and we could have had a fun moment to share rather than sadness and emotional pain. 
So the morale of this blog is, “watch the stories you tell yourself.” 
I’ve got to get back to looking at the funny side of life more often. “Hey, did you hear the one about….”

"Cut! Take Two…" Read More »

911-Do you do catheters?

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One night this week, just about bedtime, I became very nauseated and started feeling really lousy.  It had the feel of when I’m about to have an allergic reaction to something.  I have lots of food allergies and I often find out about a new one though several hours of agony and being tied to the restroom.  I thought it might be that or food poisoning.  Fortunately, it turned out to be neither but it sure gave me a scare.
I, like most people, hate to be sick.  It’s miserable but usually if I have someone to bring me things, I just stay put in the bathroom, often on the floor on a blanket, till it passes.  As I was contemplating possibly having such a night I went between dread of being sick and panic as to what was I going to do about Lynn?
There were several issues.  The most immediate was that I felt like I couldn’t stay up another minute but still had to finish feeding him, giving him his nebulizer treatment, cathing him, and getting him ready for sleep.  With each request he made, I became more and more cranky and desperate to lie down.  I finally did, lying very still, breathing shallowly, and praying I would not be sick.  Thanks, God for granting that wish….
As I lay there in dread, the other struggle was what was I going to do if I did indeed get sick?
1.  What if I needed help?  Lynn is attached to a peddler at night so he can peddle when his legs get stiff. He could pull out of it but he also doesn’t usually hear me if I yell from the bathroom and he can’t get his wheelchair through the door to bring me anything.  Solution:  Take a phone into the bathroom with me.  Plan:  Get a phone for the bathroom permanently.
2.  He needs to be cathed several times a night.  He cannot urinate on his own. If I was too sick to move, who could cath him?  That’s where my mind went to 9-1-1.  I figure if a rescue squad could put in a catheter in an emergency, not being able to empty one’s bladder can lead to one, so the solution is to call 911 to get them to come put in a foley.  Did you know that if a person cannot empty their bladder that after a while they will go into shock?  The urine backs up to the kidney and then on toward overloading the heart and lungs.  It doesn’t happen immediately but it can cause a lot of pain and the shock comes long before the other parts. So I think 911 is a good option.
3.  If I’m sick for hours, I sure am not going to feel like taking care of him the next day. Lord, give me strength!  I know I would try to push through though.  I would certainly have to call for help I expect but there are so many things family and friends just don’t know how to do and I still don’t have an arrangement yet for intermittent nursing help.  Got to get back into looking for that again.
Just so much more to consider when someone is so dependent on you for everything they need.  I also know that emotionally Lynn would be devastated if I was very sick.  He gets so afraid if I seem to be sick or hurt.  He worries about me but he’s also very afraid of what would happen to him.  He says all the time that he would give up and die if I was no longer around to help him.  Talk about pressure…
Anyway, I dodged the bullet.  Whatever was wrong finally went away.  I felt yucky the next day but functional so it was a false alarm, thank God.  So once again we were blessed to avoid another crisis and managed through what we had.  Aren’t we fortunate to have such a caring God to take care of us that way? 
Yes, we are….

911-Do you do catheters? Read More »

Oh, no. Is that a skin tear?

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For most of us, if we get a cut or scrape or even a deeper laceration, we start to heal immediately and in a few days or weeks, it’s much improved.  Skin has miraculous healing powers.  Immediately after a cut, the body clots the bleeding, sends white cells and special chemicals to the site to fight off infection and within hours new cells start replacing those that were lost.  It’s awesome how God created such an amazing process for regeneration within our own bodies that takes place day after day.
When everything in the body is working properly, skin breakdown is not big deal, but that’s not always the case with an MS patient.   For one thing, MS is an auto-immune condition meaning the body already has it out for itself. Therefore, it’s NOT working properly much of the time.  Then, if there are mobility issues, the circulation to areas that do not move as well is often impaired and that slows down wound healing, too.  On top of that, if you’re taking an interferon like Rebif, then you could suffer from a decrease in the production of replacement cells.  And on top of that if you’re on steroids, your wound healing is REALLY impaired.  So getting a skin tear is a big deal with a wheelchair-bound basically immobile individual.
That being the case, when I give Lynn a bath, I really try to check out his skin and keep a watch on any cuts or scrapes that might be present.  He gets a lot of skinned elbows because he doesn’t pull in his arms as he should when rounding a corner going into a room(and no, he won’t wear elbow pads, I’ve tried).  Usually those heal pretty well because he moves his arms a bit more than his legs.
My greatest worry though are open wounds on his buttocks.  He has two almost pin-head size openings on his buttock near his coccyx.  Not a good place to have one. He can’t sleep in a bed right now because his legs are so uncomfortable so he sits in his wheelchair probably 22-23 hours a day–that’s a lot of time sitting on one part of the body; plus he doesn’t move his core very much.  He can’t really reposition himself in his chair other than to tilt his chair backward so he can slide backward.  Therefore, to get a wound on his coccyx area is a big deal. It’s a risk all the time for more shearing with movement and the pressure makes circulation to the area less. 
He has had buttock wounds before and I’ve tried various types of skin barriers and patches to treat them. Often the patches, even though designed for wounds, tend to tear the skin in other places when they are removed due to the adhesive. I’ve had small areas the size of pin-heads enlarge in a week to wounds the size of a quarter due to removal of bandages or dressings. It’s very discouraging and something to watch very carefully.
I know from when I was working as a nurse that patients who do not manage skin wounds well can die just from the horrible wounds and infections that develop over time.  I also know that at times the layers of tissue under what appears to be a scab are often continuing to deteriorate.  Wound care is very complex.  If the person you’re caring for gets a wound that keeps getting bigger rather than smaller and isn’t in time, showing the nice pink edges of healing, or if the wound starts to smell or drain a lot, see a doctor or wound specialist pronto.  Skin wounds are nothing to ignore.  Take them seriously and don’t wait, too, long to have someone who knows how to treat them properly  take a look.  If you don’t, the results can be tragic.

Oh, no. Is that a skin tear? Read More »

Reaching my Saturation Point – at least today

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I guess I think that I can do whatever I sit my mind to and that my body and abilities will fall in line to make sure it happens.  So I strive to be the best manager, employee, mother, wife, caregiver, and friend, I can be. I want to take care of everyone’s needs and solve all their problems and still have energy afterwards to take care of our home and personal affairs.  Well, today I reached my saturation point and had a melt down…and so did Lynn….
If you follow my blog, you know that I offered to start an online “virtual” support group.  The plan was for those who were interested to call-in and we would have a conference call support group. I announced that if there was any interest, I would get it started.  I had a few interested responses so I created a Skype account and ordered a webcam.  The only problem is, I didn’t have time to learn how to use them properly.  I got everything loaded in advance but hadn’t had time to do a test drive, so, I was a little nervous about having the conference call today. 
What also didn’t help was that I was up till 2 a.m. after working till midnight on some reports for work and then getting Lynn and I ready for bed. I slept-in till 10 a.m., but I still should have had time plenty of time to see to the test before 2 p.m. when the call was scheduled.
Only it didn’t work out that way.
Each time I would sit down to pull up the program, Lynn would need something.  Then just as I was going to lay him down for  a nap, my son and his girlfriend came over to see him for father’s day. I haven’t seen either of them in a while and my son had been out of work for a week due to eye problems so I wanted to spend time with them.  While they were here, I put Lynn to bed for a short rest.  Suddenly I realized it was getting close to conference call time.  I put my conversation on hold with my son and went to get Lynn up.  Realizing I was most likely going to be late for the call, I sent an email to the other participant (I ended up with only one person interested in attending the conference call) to say I might be running late before going to get him up.  Sure enough, I was about 15 minutes late getting back to my computer after he finished with all his requests. By that point, the other party was not answering the call (I’m sure she had given up by then and if she’s reading this, I apologize for being so late!)
Since I could not get though on the call, I decided to test the connection and see how well the webcam worked.  I called to the computer in the back room where Lynn was and tried to talk to him.  The audio didn’t work well at all and he could not see the video.  So I tried to figure out how to make the equipment work properly for about thirty minutes, getting more and more frustrated as I did because the instruction book was so difficult to figure out.  Before long, I was ready to through the little camera away. 
Then Lynn needed me to turn off his camera because when he closed down Skype, the camera stayed on.  Well, it didn’t have an off button and I couldn’t find an exit menu for his software.  After spending ten minutes pushing more button, I finally decided to just unplug it.
By that point, I was in tears.
When I get upset, Lynn gets upset because he knows I’m so overwhelmed with all I have to do.  He tries to encourage me but all I want to do is cry.  So, I do, and I feel better, but that’s hard for him to understand. 
Then it’s Lynn’s turn to have a melt down…
Afterwards, I get him settled in his peddler, go fix some lunch, and go dig up some tomato plants that grow naturally near our house and transplant them into a pot on the deck.   I come inside and start to cook Lynn’s dinner when I hear something hit the floor hard in the bedroom.  Doesn’t sound big enough to be him but something obviously hit the floor.  I take off for his room and he’s heading my way in an obvious “mood.”  He looks like a thunder-cloud rolling in from the west. (Remember, I left him attached to his peddler which is obviously not attached now.) 
“What’s wrong?” I say.  He bellows back, “This !%##$%$% seat cushion is tearing up my @### and I have to get off it.”  Then he adds, as he rolls over some of the things he has knocked onto the floor, “I’m so #$%^ tired of being sick and feeling like %^&*(!” Then as he pushes his way to the bed so I can take him off the chair, he runs into the bed, knocks it off the blocks it sits on, and out rolls the knob to this wheelchair I knocked off earlier in the week and couldn’t find after searching for an hour! I yell at him, he growls, …. and then we fix the disrupted room …and our tension deflates.
It was bound to happen.  Being sick for long periods and being confined to being with someone who is sick for long periods takes a serious toll on one’s emotional stability.  Our relationship is like a see-saw.  If one is down and the other is up, we keep moving forward and it works. But when both of us are down, we’re not at a standstill, we’re broken.  Something has to give to take away some of the pressure pushing us down.  For me it was tears and for him it was banging into things and cussing. He needs a punching bag but he can’t punch so his chair and his mouth are his only outlets.  All that pent-up energy has to go somewhere!
So right now we both feel better.  We both “blew” in our own way  or got  our pent-up emotions “wrung out” of us by situations so we’re stable again….and everything’s good.
P.S.
Back to the conference call.  I’ll try it again on July 14 at 2 p.m. eastern standard time.  Send me your Skype contact information in advance if you want to be on the call.  I have some concerns about whether this is actually going to work or not.  I realized today that Lynn’s needs can’t be put on hold while I talk on the computer so being able to set aside a particular time might be a challenge.  Plus I’m a little concerned he might over hear my comments and I don’t want him to do that….Just some nagging concerns I’ve been having.  Let me know what you think, too, about it–honestly.
Till next week,
Donna

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Live in the Moment

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One of the greatest challenges of living with MS is how unpredictable each moment of your life becomes.  I’ve shared that frustration before but I keep coming back to it because it’s such a constant struggle.  Adapting to it not only means being prepared for the unexpected and being flexible but also being prepared to accept disappointments and to let go of planning and any sense of control.
This week has been that way.  We found out early in the week that Lynn was a finalist in the National Indie Excellence Book Award contest for his book, Rising Tide.  This contest accepts thousands of entries throughout the year and he submitted Rising Tide in five categories.  He was a finalist in the category for adventure. Though his book is usually found in the “fantasy” section , his stories are primarily an adventure. This recognition was particularly gratifying because writing has become his “career,” his daily work, since his MS has progressed to the stage that he can no longer do anything physical.  He has a friend who comes in weekly to type for him and during the week he uses his slow, hunt and peck typing style to market his book to book clubs.  So the first part of the week was “up.”
…but that was Monday, the rest day before his Rebif shot.  The rest of the week he has felt tired and generally bad from the Rebif. Each morning he has the hope that today will be a good day but after exercising, eating breakfast, and his morning hygiene routine, he is wiped out for the day and his strength, stamina, and outlook steadily go downhill. 
Knowing that is how the week had gone, he optimistically made arrangements for a friend to come by this morning at 10 to repair the hole in the wall his wheelchair handles has made when he turns from the hallway into the bedroom (another challenge of being disabled, repairs that come due to equipment not suited to the size of the house or vise versa).  We got up at 7 (we have to have three hours at least to prepare for the day) so he would be ready by 10.  By 9 he had to call and cancel.  For the third Saturday in a room, he just didn’t have the energy to supervise a construction project. 
From Lynn’s perspective, he’s getting sick and tired of being sick and tired.  It’s very discouraging to think that it might take another three months before he adjusts to the Rebif enough that he does not feel lousy all the time…and then there’s the possibility he won’t adjust and it will always make him feel this way.  From my perspective, I know that my ability to plan for work, for vacation, for trips to the doctor, store, library, wherever… is always hampered by how he feels at any given moment.  For example, I just came back from the library where I picked up several books on tape (that’s how I read now since I no longer have time to sit down and actually ready anything).  In order to go to the library and back–a fifteen minute round trip at most–I had to make sure his bladder was empty, he had his liquids beside him, he was comfortable in his wheelchair, he was connected to his peddler, and his TV channel was set to where he wanted it to be; all before I could consider getting myself ready to walk out the door.  Walking back into the house, I yell, “I’m back,” and of course, I hear, “come here when you can.”  He needed another catheterization, his tea was not hot enough, and he was congested and needed nose spray. It’s always something… 
Lynn noticed a commercial this morning where a caregiver for a patient with prostate cancer was talking about her role as a caregiver.  He looked at me and said, “why does she call herself a caregiver?  She doesn’t do half of what you do everyday for me.”  I explained that each disease has its own unique caregiver needs and often the emotional support and managing the home and appointments for someone can also be very demanding even if you don’t have to physically lift, move, feed, bath, clothe, entertain, etc. 
I understand where he was coming from; however.  There are certainly degrees of caregiving just like degrees of being sick. I subscribe to a caregiver online magazine. I briefly look at articles to see what might be helpful.  I know each person’s situation is very challenging and it’s very difficult to be a long distance caregiver to manager situations for a parent or relative in another city or to live with someone who physically is functional but mentally is dysfunctional.   But caring for an MS patient is uniquely challenging, I think.  For most other conditions, you can get into a routine, know from day-to-day what needs to be done, and plan ahead.  For MS, that’s not true.  MS affects so many systems of the body and can be influenced by the weather, an illness, seasonal changes, the time of day, rest, diet, almost anything and whatever that effect may be will impact their bodies either in how they feel or how they function.  Therefore, as the caregiver/business manager/entertainment arranger/homemaker/etc,  you can’t effectively plan hour to hour sometimes much less day-to-day.  For me,that is perhaps the most challenging.
Next week will be our first virtual support group conference call.  If you, too, have similar challenges and would like a place to air your concerns, frustrations, triumphs, and hopes, please join us.  Contact me through Skype.  My ID is MScaregiverdonna.  Send me your contact information and I’ll add you to the conference call group.  I’ll give participants a call around 2 pm EST (give or take a few minutes in case I’m in the middle of a catheterization or something) on Saturday, June 16. I look forward to getting to know those of you who might want to participate.
Till next week….
Donna

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The Blessings of Children

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Elijah Gregory moments after his birth

May 27 at 3:51 p.m., my daughter gave birth to a beautiful son, Elijah Gregory–Eli for short.  I was fortunate enough to share in the experience with her and her husband and at the moment of Eli’s birth, my daughter weep tears of joy, as did I. 
The decision to have a child was not easy for her.  Though she does not have MS, she has a chronic health condition that has dominated her life (and mine) since she was five years old.  The condition has required multiple medication adjustments, much lost time from school and work, and interfered on more occasions than I can remember, with being able to enjoy plans made.  It made her different from her peers, which created many difficulties for her as a teen.  There have been many tears and many discussions about the quality of her life…but we made it through those times.  Her condition is now controlled on medication that she must take every day for the rest of her life and it still is a factor in all her decisions but she has matured into a beautiful and kind young women, with a deep sense of responsibility, and wisdom beyond her young years.  She is very fortunate in that she also has a very devoted husband who is unbelievably understanding and supportive of her.  Now he has taken over my role as her “rock” and together they face their future.
I share all this as background for her decision to have Eli.  She knew her pregnancy would be difficult and there was a risk that the medications she was on could cause birth defects (thankfully that does not seem to have happened) so she worked with her doctors to prepare her body, her mind, and her spirit to take on the challenge of having a child.  For her that decision was the right one but for some people with chronic health conditions, the prospect of reproducing and sentencing a child to the same possible condition is not something they can do.  Neither decision is wrong; both decisions are right…for those individuals.
As for my daughter, she has a strong faith in God and has learned to rely in Him to help her through the difficulties of this life.  Though she certainly does not want to invite hardship, she also knows that her strength comes from the courage He has given her.  Her life experiences, though very difficult, have prepared her to face what may be ahead since she probably won’t know if Eli has her same condition for several years yet.  However, if he does develop it, who better to help him through it than his mother who can not only empathize but coach him in how to cope with it?  That is true for any person thinking about having a child that might inherit a serious condition.  There are some conditions, that I am sure would cause her (and me, too, if faced with the choice) to decide to adopt.  In fact, she may decide to do that next time.  But it’s okay either way.
My step-son knows that he may very well develop MS as he gets older.  His father and grandfather both had it so his changes are significant. When he asked his girlfriend to marry him, she and I talked about their having children.  They are fully aware of the risk of inheritance and that he may end up as his father but we also know that new medications and treatments are always in development.  BECAUSE of his father, he’s prepared.  He knows what things seem to reduce the risk and what to stay away from; he knows the symptoms and when to seek evaluation; he will know what to do if the time comes that he has to face the prospect.  Plus, like with my daughter, he will know that his father and I are here to help out anyway was can and that God will bless them whatever the decision regarding children may be.
I belive that each challenge we face in our lives prepares us for what lies ahead.  We gain strength, knowledge, and courage with each obstacle we overcome.  Life is hard…no doubt about it.  I truly wish and have prayed often that these burdens be removed from Lynn and from my daughter and that He would protect our other children from them as well. However, I know that we are not alone.  I know that this time on earth for us is like a speck of dust compared to eternity in heaven.  I know that although we have trials and difficulties and get depressed and hurt that I love this life we have.  I feel so blessed to be married to Lynn and to have two wonderful children of my own and an awesome stepson.  I love the partners my children have chosen to share their lives with. I can’t wait to spend time with my grandson and to share with him all we have learned that might be helpful to him on his journey through life.
I am very thankful my parents decided to give me life.  I am very thankful that God blessed my decision to have children.  And now I’m thankful that God has given my daughter the courage to face the unknown and to share her love and commitment to Christ and to her family with a child.
Yes, for me and my family, having children is truly a blessing for which we are thankful.

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Depression

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Have you seen that commercial that asks, “Where do you hurt when you have depression?” and the answer is, “Everywhere.”?  That came on while I was helping do something this week for Lynn and suddenly I realized that maybe I have “misdiagnosed” his symptoms. 
Lynn started on Rebif about two months ago.  Over the past month, he has become more and more tired the day after his shot but even between those times, he feels bad.  It’s not aches and pains but more of a heaviness–the weight of not feeling good.  He has also gotten very irritable, more impatient than usual and, though he controls it well, he gets angry very easily. 
I was talking to his primary care doctor about something else and she asked how he was doing with his new medications.  She was concerned because one of the major side effects of Rebif is suicidal thoughts.  I assured her he was not suicidal but that he was having some emotional effects and might need intervention for them but I would call back if I decided that was the case.
Later I talked to Lynn about it and told him that I thought that was what was going on with him.  He uses an antidepressant already due to struggling with depression associated with just having MS but I think he now needs more.  He thought about it and agreed, but he said to tell the doctor he was not so much suicidal but homicidal (don’t worry, he was joking about that.  He would never actually try to hurt me or anyone who came here.)  What is actually happening though is that his frustration level rises quickly and he throws off weights that he is using to exercise or he shoves things roughly out of his way or his language gets rather colorful–all of which can be signs of depression.
What is depression actually? 
It’s basically a mood disorder that can vary in degrees of severity. 

  • There can be situational depression–you get depressed because you just lost your job and finances are already tight.  That type of depression usually gets better as the situation gets better and once a resolution to the issue is found, the depression goes away. 
  • Then there are depressions caused by a chemical imbalance–the body doesn’t secrete enough of a particular chemical to keep your system in balance and depression occurs.  Antidepressant medications often work to restore the appropriate levels for the person with this type of depression. 
  • Depression can also be due to medications.  Sometimes medications will cause a chemical imbalance and changing the medication will help relieve the symptoms.
  • Then there are the medical disorders that predispose you to depression; like MS.  A significant number of MS patients develop depression either due to the lack of stimulation by the nerves to the organs that control the chemicals noted above or due to the impact of the disease on the person’s life.

When a person has depression, they lose interest in a lot of things.  When I first noticed that Lynn had depression, it was because he had a lot of “hopeless” talk and he lost interest in eating.  He didn’t want to go anywhere or see anybody.  His personality changed.  He used to love to see people but when depression started, he just wanted to stay in his room and didn’t care if anyone came to see him or not; not even his son whom he is very close to or his Mom and sister. After a few weeks of that not changing, I told his neurologist he was depressed and needed medication and he referred him to a psychiatrist.
Lynn didn’t really want to see a psychiatrist because he didn’t want to “sit around and talk about my feelings.”  I told him that wasn’t really the purpose of the appointment.  Psychiatrists  (MD) often treat with medications and psychotherapy techniques while licensed clinical social workers (LCSW) or licensed clinical counselors (LCC) often do those “talking about feelings” therapies.  A psychologist, another type of therapist, uses tests to help determine what is going on with someone and then refers them to either a LCSW/LCC or to an MD depending on the suggested diagnosis from the testing.
Going to the right type of therapist is very important in getting the help you need.  If you possibly have a chemical imbalance or will need medications, the psychologist, LCSW, or LCC, cannot do that so you should get an appointment with a psychiatrist.  If you want group therapy or the typical 50 minute therapy session where you talk about how you feel and what you can do about it, then you could do either the MD or the LCSW/LCC.
Whichever one you think you might need, go see them.  I was depressed when I went through my divorce from my first husband.  I went to a LCSW which really helped. I did need some medication so the LCSW contacted my primary care doctor to discuss what was needed and he prescribed something. So you can see that you don’t always have to have a psychiatrist but like in all fields, psychiatry has a lot of new medications coming out all the time.  I recommend that you talk to someone who knows which medications do what and what will work best in conjunction with your medical condition and any other medications you may be using.  Once you get the right mix, you’ll feel a lot better.  Then the world will start to look sunny again and you can see hope returning.
If you think you or your family member might be depressed, mention it to your doctor.  Depression is truly a miserable feeling and just like the commercial says,  when you have depression, you really do hurt everywhere and everyone around you is affected as well. Don’t wait…Get the help you need.

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Virtual Support Group Instructions

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Great News.  I have Skype set up and we can do conference calls, not group videos (though you could if you have that option in Skype, I just don’t have the bandwidth to do it).  Here’s what you need to do to participate:

  • Set up a Skype to Skype account.  It’s free.  You will need to have the capability to talk through your computer so a webcam with audio capability would be helpful.  Some laptops already have them installed so you’ll need to figure that out on your computer in advance.
  • Once you have your Skype account set up, you need to send me a contact request.  My Skype name is MSCaregiverDonna.  You can just click on “Add Contacts” and type that in as my Skype name.  That will send me a request to accept you as a contact, which of course I will. This has to be done in advance of the group meeting so I can add you to the conference call.
  • The day of the conference call, I’ll have already created a “group” for the session and I’ll send you a call when we’re ready to start.  You just answer the call and we get started.  Hopefully, it’s really that simple; however, I expect we may have a few glitches to work out initially so have patience.

Let’s set the date for our first support group meeting as June 16 and we’ll meet at 2 p.m. Eastern Standard Time.  That means you’ll need to convert the time for whatever time zone you are in.  I’m looking forward to meeting you all and having a real talk.

Virtual Support Group Instructions Read More »

Virtual Support Group Update

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I’m finding out that my internet, which is DSL, does not have enough bandwidth for me to do group video conferencing but I should be able to do group conference calls using Skype.  I’m still working out the details and when I have it figured out, I’ll be back to set up a specific time for our first virtual support group. 
I think we’re still on track for sometime in June. Based on the number of people who expressed interest, I think we’re looking at having a small group 5-8 to start with but if it works, I expect that could get larger.  Keep your fingers crossed that I figure out how to make this work. 
If anyone is interested in being a “co-leader” let me know.  There could be times I would not be able to host it and it would be nice to have someone else be the contact if that should occur.  Think about it and let me know.
Thanks
Donna

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Time or Just One Continuous Move Forward?

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Are you the type of person who keeps a calendar and checks their watch several times a day?  I am.  Since I can remember, I have been a clock watcher. I always had a sense of what time it was and what day.  Not that I was always punctual but I always had my schedule somewhere in my subconscious. 
I’ve found that keeping track of time is one of the things that seems to be “slipping” as a priority now that I’m a full-time caregiver.  I don’t even wear a watch anymore! When I first started taking care of Lynn full-time (meaning doing almost everything for him) I tried having a schedule. I even wrote out a treatment schedule and recorded when I gave certain treatments and when I did catheterizations, breathing treatments, etc. After a few weeks, I found that was a task that was just not necessary. Things would get done when they got done.
Why this change in philosophy?  Mainly because being flexible is essential to survival.  When we get up is contingent on when we go to bed and how often he gets up at night. When we go to bed is determined by how many times I was interrupted by him during my work day which influences whether I stop working at 7 pm or, like tonight, at 11 pm.  When we eat depends on what needs to get done when and how hungry we are.  Sometimes I get up and shower, fix his breakfast and supplements, then fix my breakfast, help him with his exercises and then help him with tolieting.  Other days events happen in the reverse order.  Sometimes it takes two hours; sometimes more than three.  If I try to keep a schedule, it just produces stress and frustration.  I’ve actually started setting a timer if I need to call in for a conference call at work because I often have no concept of what time of day it is.  I guess that happens, too, when you actually, truly, never stop in a twenty-four hour period. 
Work twenty-four hours?  Everyday?  How can that be?  Well, when you think about it, the only time I’m not working at either being a caregiver, employee, or housekeeper, is when I’m asleep but I only sleep two 1/2 hours at a time usually before I have to get up and be a caregiver again.  I take a series of naps instead of sleeping straight through the night–sort of like being a new mom.  Sometimes I’m only up for 15 minutes; other times it’s 30-45 minutes.  Lately it’s usually just 15 or 20 so I’m getting more sleep than I used to but if you can’t go to bed and sleep straight through the night does that count as an actual night’s rest?
I know I get rest but I still feel like I’m on duty all the time.  I guess it’s like being a medical resident.  A medical resident works all day then is on call all night.  How much sleep they get is dependent on how much the patients need them.  They might catnap or they might sleep a couple of hours but they are always “on” and when the next morning rolls around, they are back to work, the same as if they had a full night’s sleep.  That’s me!
So for a caregiver, time is irrelevant.  It doesn’t matter what time of day it is or what day of the week; you are “on duty.”  Weekends are just another day, more or less; and 3 a.m. will often catch you doing what you did at 3 p.m. ….so who needs a watch?

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Sometimes I Feel Like I will Explode

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Pressure.   So much pressure.  …but where does it come from?  Me or “them?”
This has been one of those weeks where I have felt I was under extreme pressure all week.  The week started off with me getting up early on Monday for a conference call that wasn’t actually scheduled till Tuesday.  I needed to get up early anyway in order to have the four hours I need to get ready before I go into work for meetings so it was actually somewhat of a relief to have gotten the date wrong but that meant also getting up early the next day…which I did.  “Issues” started flowing in from work Tuesday afternoon and I haven’t had a break since….
My job can be very intensive.  I coordinate investigations, consult on workplace conflicts, and generally give advise on how to address problems.  Often participants are very emotional and the consultations are intense.  I have to be “on my game,” able to listen for variations of the truth, able to see through smoke screens to the facts, able to determine what laws apply and what solutions might work in a situation based on personalities and behaviors that I rely on others to describe.  Therefore, I need to concentrate on what is being said, how it’s being said, and what is not said to make sure I manage a situation effectively.
Now imagine this…I’m on a speaker phone attending a conference call about some highly emotional issue.  I’m multitasking at my desk, looking up information, referencing reports, taking notes, and planning strategies with the people on the line.  Over the baby monitor on my desk, I hear, “Donna I need to be cathed.”  So I take the speaker phone with me, mute the line, glove up and take care of business, never missing a beat.  Then he mouths, “I need nose spray,”  so I apply the spray, then as I put down the spray, “can you make me some tea?” I continue to carry on my conversation and go make the tea. When I deliver it, his foot has come loose from the stirrups in the peddler so I fix that, his socks need to be pulled up and his shin needs scratching.  I finish all this, still on the phone and go back to my desk.  Fifteen minutes later, “Sweetie, can you come here?” and it starts again.
Some days I do okay with this pace; other days I don’t.  When the issues are intense or the stakes are high, I feel intense internal conflict between who gets my attention at that moment. So far, I’ve managed to juggle it all– I can multitask like you wouldn’t believe, but the pressure is getting to me. Several times this week, I’ve just felt like I could not keep going like this.  I would love to quite the dual role.  I would love to go back to work and have someone else be the caregiver for a while but I can’t afford to do that.  The cost would just be too much so I keep going. I admit there are times I almost wish I would get injured or sick so I would have an excuse to stop for a while.  If that would happen, then insurance would pay for a temporary caregiver at least and the decision to stop being a caregiver, even temporarily, wouldn’t be mine to make.
I am very fearful that eventually I won’t be able to keep up the pace.  What will happen then?  We have a little savings but that would not last long if full-time care was needed.  If we lost most of our resources, then we would be eligible for assistance but I don’t want to lose nearly everything so I can get some help.  If I quite my job and worked part-time, we could not pay our bills.  Lynn could go into a care facility but I couldn’t (not that I ever want him to have to do that) but if that happens, what happens to me, the caregiver, who has burned out, lost their income, lost their home, lost their savings? 
I’m getting morbid and over-dramatic but it’s these type of thoughts that cause the pressure.  I don’t want my worst fears to happen. I don’t want to lose our home or to have to put Lynn in a care facility; nor do I want to lose my job (believe it or not, I really like what I do).  So I feel pressured…pressured to do my best at work so I don’t let down my colleagues; pressure to do my best for Lynn because I love him and am committed to him; pressure to try to be a supportive mother and friend; pressure to make it all work.  Where does this pressure come from?  From me. From my own expectations.  From my own demands to do it all perfectly.
So maybe what I need to do is go find a pin…I think its time to create a small leak.  Just a little leak to reduce some of the pressure; not so much as to make me explode or deflate entirely… just enough to stay afloat like a balloon that has lost its elasticity and becomes almost puncture proof.  That’s my goal. To become a low pressure, rubbery balloon. Sounds good doesn’t it? Or better yet, I guess I just need to turn it over to God and let him handle it because it’s just too much for me right now.  So….God, this is Donna.  Here… it’s yours.  Thanks and Amen.

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Virtual Support Group by Skype?

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  When I first started this blog, my intent was to create a virtual support group; a place on-line that people, like me, who could not get away to attend support group meetings could get together on-line.  While this blog has allowed me to make many new friends and to gain support periodically from each of you, it doesn’t allow for that “personal” touch.  But I have an idea that might just work….let me know what you think.
Have you ever heard of Skype?  Skype is an online phone service that is free and allows you to both talk to and see whom you’re calling. Lynn uses it to speak to book clubs about his book and while it’s not always the best picture (depends on the equipment being used of course), it allows you to meet the people on the other end of the conversation.  Skype also offers an option for video conferencing which enables the subscriber to have multiple pictures of callers up at the same time.  There is a fee for this but it’s only $10/month if someone wanted that option.  See where I’m going with this?
If enough people were interested, we could have a virtual support group of caregivers.  From the location of our own home, we could reach out from across the country or even overseas to meet each other and share a “real time” conversation.  By getting together on-line in this manner we could attend a support group while still caring for our family members.  Many laptops now have webcam capabilities built in but I’ve looked into buying a webcam and you can get some good ones for less than $50.  Skype has some listed as five stars that are around $25. I’m very technology illiterate so I may be missing something that would not make this possible, but I don’t see why not? 
If you’re interested, I was thinking maybe once a month, on a Saturday afternoon, we could designate an hour to talk about whatever is going on that month.  I’m not a therapist or a counselor so this would not be a therapy session; just a group of caregivers who share a common challenge who get together to encourage and support one another.   I don’t know if it would work but I think God put this on my mind as an option to reach out to support people in a more personal way.  I would still do my blog but this would be a separate project.
So, what do you think?  If you’re interested, let me know.  If there’s enough interest, I’ll buy the subscription to Skype for group video conferencing.  I think you could call in and just view me if you only want the free subscription or if you also subscribed to video conferencing, you could see everyone else who calls in. I’m not sure about that though but it makes sense that you could.  So give it some thought and we’ll see if there’s any interest.  I’ll get back to you in about a month to let you know if there’s enough interest and when the first meeting would be.
Be “seeing” you soon?

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Financial Support for Home Care

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I’ve been thinking a lot lately about respite care.  I was asked to participate on a committee to look at creating a voucher program in Virginia for caregivers to obtain a small amount of financial assistance so they could afford respite care. I think the idea is wonderful.  So many of us need a break but don’t have close friends or relatives who can provide relief or don’t have insurance that will pay for it.  Unfortunately, funding will be limited and the need is great so many people will still have needs that will go unmet.
I was a consultant on the Committee, essentially one of the voices of those in need who could offer comment about the direction the plans were going.  As I listened to the experts discuss which resources currently available would be the best to contact as sponsors or how would those who need assistance hear about it, I realized just how lost most of us are in trying to figure out where to go and what to do.
I think of myself as being pretty knowledgeable about healthcare and medical systems.  I have a nursing background, though it’s been years since I practiced, and I work in a hospital so I’m familiar with how healthcare works.  However, I’m totally lost when it comes to knowing what to do about getting financial assistance or respite care.
When Lynn first started having difficulty getting around, we decided it was time to apply for Social Security Disability.  That was a 12-month struggle of filling out forms, getting rejected, researching the rejection reason, applying again, getting rejected again, appealing again, etc. until we could go before a real person.  Once we were able to see a judge, all he did was ask when Lynn got as bad as he was and approved the disability. (by the way, I did this myself without a lawyer so it can be done but it takes a lot of time to do it).
Naive me, I though, “great, he has disability now.  Finally, we will get some help.”  Wrong..though not totally.  He does get a monthly income now, much less than he used to earn when he was working but it certainly helps.  I thought; however, that he would also get medical care immediately.  I had no idea there was a two-year waiting period before he would be eligible for coverage under Medicare.  We were fortunate that I had insurance and had him on my policy.  What does someone who is totally disabled and unable to do any work do for two years without insurance?  Doesn’t the government realize that the cost of self-insurance is outrageous if you have a disability IF, and that’s a big IF, you can even get coverage!  Most people would be denied if they had to start from scratch in getting insurance and if you HAD insurance but lost your job and had to use COBRA to keep it, many people could not afford that cost either. It just doesn’t make sense to me that Medicare has a waiting period once disability is approved.
So we waited somewhat impatiently for Lynn to be approved for Medicare.  Again, naive me, I think, “great, now I can get some home care assistance.”  Wrong again.  Medicare Part A, which is free, only covers inpatient care.  Medicare Part B, cost a monthly premium which is higher than the cost I pay if I keep Lynn on my insurance at work.  So having Medicare does us absolutely no good unless he gets hospitalized. So I’m back at square one, my insurance doesnt’ provide for home care assistance on an ongoing basis so if I want someone to care for Lynn while I go into work, I have to pay for it myself, and from what I can tell, “it ain’t cheap.”
Someone told me I needed to apply for Medicaid for him.  Apparently there is some type of waiver program that provides financial assistance to caregivers who take care of family members at home so that the person does not have to be hospitalized.  So now I’m trying to find out about this waiver program with Medicaid; however, the best I can tell, Lynn doesn’t qualify. I may not be reading this right but it seems like the person has to have a monthly income less than $2000/month, which would qualify him but the person also cannot have any savings greater than $2000 which disqualifies us.  When Lynn lost his job, he had a retirement savings account that is more than $2000 plus all our assets are in joint accounts.  While we don’t have much, we usually do have more than $2000 on hand so that we can handle emergency  repairs and purchases.  These days if a car breaks down, or you need a new well (we spent $5000 putting one of those in) or new appliances, or any number of things, you need to have some money readily available.  Plus if I were to be out of work for an extended time, we would need some money to fall back on.  We just can’t afford to get “poor enough” to qualify for assistance.
It’s basically a catch-22, if you’re already poor, you can qualify for assistance, but if you’re not totally poor and only need help to supplement, rather than totally support your existence, there is nothing available.  Financial concerns is one of the main reasons I’m hesitate to hire someone to stay with Lynn.  I’m sure anyone who can provide the type of care he would need would charge around $20/hour.  There is no way I could afford paying someone 10 hours a day (I work an 8 hour day plus I have an hour travel to and from work) for five days!  That’s $1000/week or $4000/month.  I could probably get someone for half that amount if all they did was served as a companion but that would mean I would have to do all his physical care before or after going to work and have to keep an indwelling catheter in him which would make him prone to urinary track infections and increase his risk of hospitalization.
So until further notice, I’ll keep trying to manage a full-time job at home with help from family, friends, and God who always seems to meet our needs, one day at a time.  Anyone got any better ideas?

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I Don't Know What I Don't Know

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Do you remember when the person you care for was first diagnosed with MS?  You might not have been around them at the time, but I remember it very well.  Those were very confusing days. I was almost sure Lynn had MS.  He didn’t want to talk about it or give the disease any power over him so he refused to acknowledge he “had” it.  He would not read about it, he would not look anything up, he didn’t want to talk about it.  As I’ve mentioned before, he feels that if you give what you have a name, then it tries to take over your life.  If you refuse to allow it to “have” you, then you still have some control.  To me, that was burying his head in the sand. I’m just the opposite.  I think the more you know, the better prepared you can be; so, I started looking up as much as I could “in secret” so I could know what to expect.
I was expecting for Lynn’s first neurological appointment after being diagnosed to be an extensive information session. I figured we would be told what to expect, treatment options, ways to improve his chances of staying healthy, …all kinds of things.  But that didn’t happen.  The doctor came in and took a medical history.  Then he did an examination.  Then he said something about relapsing remitting MS, handed us several booklets on various medications, gave us a handout on a MS study he thought might be a good option for Lynn, and asked if we had any questions???????
Questions?  I had about a million but Lynn had none.  I told myself, “this is his disease and his life.  Let him handle it like he feels he needs to.”  So I didn’t ask any questions but instead went home and read the pamphlets and started checking out information on the National MS Society website. I got an overall understanding of what MS was and some of the treatments, but it was really overwhelming.  There were so many different types and so many different symptoms.  I didn’t know what I needed to know.  Where should I start and what was essential and what was good to know or what might not ever be needed?  That’s when it would have really been nice to know someone who had MS who could have put it all in perspective but although almost everyone we talked to “knew” someone with MS, we didn’t know anyone and we didn’t want to call a stranger to talk.  I was fortunate that shortly after Lynn’s diagnosis, two people I worked with told me their mothers had MS.  That at least gave me someone to question about what was happening.
But you know what I think would have REALLY helped?  It would have really helped if our doctor had decided to treat the person who had MS instead of the symptoms the person had.  I don’t mean to imply that our doctor didn’t do a good job of treating Lynn; he did.  He’s very knowledgeable, he will answer any questions we have, he’s well-respected by his colleagues for his expertise, but unless I asked specifically for some type of referral or information, it wasn’t provided.
I’ve heard about places that have MS Centers.  I think that would be wonderful.  I think that when someone gets diagnosed with MS, they should have a complete physical workup to determine all the potential organs and functions that might be affected.  They need a counselor to discuss their fears, concerns, grief, anger, whatever they’re feeling… and so does their family, both separately and together.  They need to be started on an exercise plan specific to whatever areas of weakness may be present and their caregivers taught how to assist correctly.  There should be a dietician to talk about healthy diets FOR MS PATIENTS; not cardiac healthy eating but what foods are being found to support neuron function.  An appointment with a social worker to talk about planning ahead for applying for Medicare or Medicaid and what resources are in the area to help people with MS.  A pharmacist to talk about the abundance of prescriptions that might help or hinder the symptoms of MS specific to person.  Then wouldn’t it be awesome to have someone to pull it all together and talk about what to expect, handy hints for everyday living, how to handle (fill in the blank)? 
Why can’t a well-rounded approach be used to treat someone with a chronic condition that affects every aspect of their lives and potentially every organ of their body?  When will the medical progression get smart and realize, we don’t know what we don’t know so TELL US! Is that too much to ask?

I Don't Know What I Don't Know Read More »