I’m No Angel

I admit my life is very busy and very difficult. I also admit I manage it pretty well, but just because I have to do some pretty difficult tasks day after day and I keep doing them, doesn’t make me an angel. I realize that most people who are not full-time caregivers are amazed at what I do and how I manage but that just means I know stuff and I have abilities and that God blessed me with a servant’s heart that allows me to meet these challenges without quitting. It does not make me an angel.

I bet if you’re a caregiver, you’ve been called an angel a time or two, also. It’s a compliment that is intended to reward you for all your hard work, and I admit, it sounds nice, but when someone tells me I’m an angel, I’m embarrassed and I feel guilty because I’m far from being an angel.

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Cheesecake Makes it All Worthwhile

English: Orthodox Christmas decoration Српски ...
Nativity  (Photo credit: Wikipedia)

I love Christmas.  I’m sure I’m not alone when I say it’s my favorite time of year.  I love the excitement, the beauty, and especially the meaning….but it IS a lot of work.
The reason I did not write a blog last week is that I was busy decorating for Christmas.  You see, I must have about 2o tubs of Christmas decorations.  I have stuff for the inside and stuff for the outside and although it takes a long time and my poor arthritic joints are crying the blues, I enjoy every minute of decorating. However, now it’s a bit more challenging to get all that decorating done and it takes twice as long as it used to do.
Once upon a time, I used to get all my decorating done the day after Thanksgiving. I would start early in the morning and keep at it till it was all done. Now, I always have the first three hours of any day devoted to Lynn’s morning routine of hygiene, toileting, and exercise. Then he rests in bed for 30-60 minutes depending on how restless his legs become.  During that time I eat breakfast and start cooking whatever is in low supply for his diet.  Then I get him up, connect him to his peddler, work to get him comfortable, and head back to the kitchen to finish cooking. Shortly after this he’s ready to eat breakfast.  All and all I usually start being able to decorate about 2-3:00 p.m.
Though he really does try not to bother me too often, on average I get a “call” from him every 45 minutes to an hour.  When I answer the call, I’m usually involved with him from 15-20 minutes depending on what he can think to ask me to do.  (He stores up his requests so that he won’t bother me as often).
On advantage to decorating now is that once Lynn goes to his room after his morning exercise, he does not venture out again till the next day. Therefore, I can spread out whatever I’m using as much as I need to do.  I don’t have to worry about him running over debris with his wheelchair or moving things to where I can’t find them.  All decisions related to how or what I decorate are totally mine.  His participation is very limited.
While Lynn has never been one to go all out and decorate like I do, he has always enjoyed the season’s festivities as well.  We both were involved in choir at church and so we had rehearsals and get-togethers we enjoyed as we prepared for the Christmas cantata.  There were family and friend get-togethers where we socialized with those we may not have seen all year.  And Lynn loved to cook.  He loved to invite family and friends over and provided them a feast.
Now all that has changed.
Lynn still wants to have family and friends over for get-togethers but now I do all the cooking (and I’m not a gourmet cook like he was; nor do I especially like the challenge of cooking for a group).  If we have people in, I have to split my time between making sure all the food is prepared and everything is available and running smoothly and taking care of Lynn’s needs.  I get to do very little socializing. I stay near Lynn all the time; watching for signs of fatigue or getting overheated.  We often have to excuse ourselves so he can bet cathed. He doesn’t like to be fed in front of others so I get him finger foods to nibble on and later I feed him something when he goes back to his room. All too often he feels miserable when others are having fun and that becomes very depressing when it happens so often.
But there is one bright spot for him that he always looks forward to.  Lynn always “cheats” on his diet at holidays and gets a big slice of cheesecake.  He loves cheesecake and he looks forward to it with excitement every holiday.  Somehow that slice of cheesecake seems to make it all worth while.
Even with all the challenges and disappointments, Christmas is a special time of joy, love, and sharing.  It’s more difficult than it used to be, true; but it has never lost that special place in our hearts. We still recognize the meaning of Christmas as a time of newness and birth. Christ’s arrival brought hope and promise of a better tomorrow. It was a time of celebration and love. It’s still that for us.  It’s a time of joy, remembering that there are possibilities of a better tomorrow in the year ahead. There is the love of family and friends which is renewed when we gather together.  There is the promise that thought we struggle with Lynn’s condition each day, there will come a time when we join Jesus in heaven and Lynn will walk again without any fatigue or stiffness and with lots of energy and strength.   It’s no wonder I like Christmas.

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I Didn't Say That

I’ve discovered that a lot of people who have never been caregivers just don’t get what it really means to be a caregiver and they make a lot of bad assumptions that sometimes cause us hurt.  I had an example of that this week.
On Friday, I received an email from my former sister-in-law.  She was “outraged” by something she believed I had endorsed and proceeded to accuse me of being thoughtless, uncaring, unappreciative, heartless, and a Christian who did not live what I believed.  She said some very hurtful things based on a rumor she had apparently heard from someone who was uninformed and absolutely wrong in what they shared.  Not only did she hurt me but she hurt my daughter who she was really trying to get to through me in the first place. It was an unprovoked attack and unfortunately, one that will certainly taint any future interactions I may have with her (though hopefully there will be no more).
She had heard that my daughter would not bring her child to visit his great-grandmother due to fear of MRSA (Methicillin Resistant Staph Aureus– a very difficult to treat infectious condition) in the rehab facility where she was staying.  Her assertion was that my daughter should bring her child for a visit regardless and since she was a stay-at-home mom, she certainly had the time to be able to visit. She conceded that she realized I had my hands full but she felt I should have insisted that my daughter visit instead of encouraging her to stay away.
I was stunned by her assumptions and accusations.  First off, I didn’t even know that my former mother-in-law was even in a rehab facility much less that she was asking to see Eli. Second, I couldn’t imagine that if Sarah (my daughter) knew about the request that she would refuse unless there was a very good reason. The truth of the matter was that she did know that her grandmother was in rehab and had in fact, already planned with her to take Eli there to visit when her husband was available to assist her with the toddler.  Eli is a special needs child.  In almost every way he’s as normal as any other 16-month old toddler; full of energy, into everything and wanting to put everything in his mouth still. However, he does not eat.  He refuses to drink almost anything and he eats only 2-3 tablespoons of food at any sitting. He does not take in enough food to survive on his own so he has a feeding tube.  Therefore, to take him anywhere means taking all the supplies for his tube feeding and replacement materials in case the tube comes out or gets dislodged.  On top of that, this tube that goes through his nose into his stomach, hangs out of his nose and goes down his back.  The tubing provides a direct passageway from whatever it touches outside his body to his stomach.  Therefore, letting this tube come in contact with MRSA is a very big deal. But the biggest insult was the assumption that since she stayed at home, it was no big deal to go for a visit.
That’s the part that people just do not understand.  Going out is a very big deal.  Though our challenges are different, my daughter and I both have the same issues when leaving home with our charges.  You have to pack supplies (for me its catheter supplies; for her it’s tube feeding), food (Lynn can’t eat out due to his special diet; Eli will only eat very specific things), and comfort items (clothing, water, medications, etc). Lynn fatigues very easily and his spasticity causes him a lot of discomfort if he can’t get on his peddlar that will rotate his legs and relieve the spasms.
I know people wonder why we don’t go anywhere but it’s so difficult to do so and it causes so much discomfort for us both that the enjoyment of a visit is not enough incentive to make up for the problems to address in getting there.  It’s not that we don’t care about other people or that we wouldn’t enjoy a visit but its high risk and often takes more time for recovery afterwards than the amount of time we were gone. So we don’t go.
Bottom line, I wish people would stop making assumptions about what they think is our reason for not participating or not doing what they think we should be doing.  Just like that saying goes, “don’t judge until you have walked a mile in that person’s shoes.”

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Pass It On

One of the hats I wear as the caregiver support for Lynn is to help him promote his book.  As I have mentioned before, when he no longer was able to work, he began to write. His first book, “Rising Tide,” was published a couple of years ago.  Those who are not in the publishing industry assume that the publisher promotes the book.  Not so these days as the only books that are advertised or extensively promoted are those from already known authors. Therefore, Lynn spends a great deal of his day contacting book clubs who might be interested in reading his book and offering them a free promotional copy.  He also writes a blog about writing and interacts with book sellers.
One of his contacts who writes a blog about authors is featuring him and his book this week.  Check it out!   This is a link,, to a feature article which includes a short interview with him as well as an except from the book, the official trailer, and a short bio about Lynn.  Due to the limitations he has from MS, Lynn is limited in marketing his book to the use of social media.  He is trying to start a grassroots movement to promote his book, “Rising Tide.”  I hope you will check out the article and pass it on to others who enjoy reading.

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"I Know Someone With MS…"

When I tell friends, family, acquaintances, etc. what I’m up to these days (i.e., being a full-time caregiver for my husband while working full-time from home) it’s amazing how many people either have someone with MS in their family or know of someone with MS. What’s even more amazing, however, is how different each of their stories are.  Often how someone views the condition is directly related to who they know that has it.  For example:
“My friend’s sister has MS but they’re fine”
In this situation, they really have very limited information about MS because as we know, no one who has MS is “fine.”  Each MS victim struggles with something periodically, especially during periods of stress. Often they battle fatigue, heat sensitivity, weaknesses in functioning in some aspect of their lives either full-time or temporarily. So if the person you are talking to only knows someone who is “fine” then they have difficulty comprehending the nature of the condition and the potential restrictions imposed and may even wonder, “what’s the big deal?”  They just don’t get the condition.
“My cousin has MS and has to use a cane.”
If they know someone who has mobility issues, then they seem to have an idea that someone with MS has struggles to overcome on a regular basis.  They understand there are special needs and often associate MS strictly with mobility challenges.  Often they have no idea that MS can affect any function of the body either completely sabotagizing it’s ability to react normally or at the very minimum, creating an annoyance on a regular basis.  They have no idea that a person’s bowels, bladder, eyesight, memory, sensory stimulation, hearing, speech, eating, …you name it… can be affected. There is much they do not know but they at least have some insight.
“My sister has MS. What an awful condition.”
Once it’s in the family though, they realize just how devastating the condition can be.  They understand that the person with MS struggles each day to be “normal” to be able to have a “normal” day and fit in like everyone else. They realize that one minute the person may be fine but the next they are so exhausted they can hardly function and where before they could walk alongside someone, once they hit that point that fatigue takes over, they rarely can keep up. They know that some days they feel like a heavy weight is sitting on their shoulders and other times they are optimistic and hopeful.  They know that each new “odd” sensation raises the question of, “Is this an exacerbation?”  “If it is, how bad will it be this time and will it go away or linger?”
I see one of my roles as an MS Caregiver to be that of educating others. In the grocery store, at work, wherever I meet someone who asks about Lynn and his condition, I try to clear up misperceptions and provide insight into what MS is all about and most importantly, that it’s different for every person they will meet.  No two people with MS seem to be affected the exact same way.  Each MS person knows they are unique in their personal struggles but at the same time they are a member of a larger community who has to learn to cope each day with what that day brings. 
That’s one of the reasons why I write this blog, too.  I want those who read it to know there are common struggles but each person is unique. Don’t look at Lynn if you’ve just been diagnosed with MS and believe you will be wheelchair dependent and unable to fed yourself in less than ten years after being diagnosed because that is probably not the case. I tell anyone who listens that the only way to deal with MS is to take each day and each minute in that day for what it brings in that moment.  Don’t look too far ahead or focus on what was left behind; just do your best with what you have that day and keep the faith (literally) that God will give you the strength to carry on through one more day and one more triumph.

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Going Out Isn't Easy

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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"Cut! Take Two…"

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….”

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The Blessings of Children

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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Sometimes I Feel Like I will Explode

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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When I was trying to decide what to write about this week, I was having a hard time coming up with something unique.  I’ve touched on many of the hardships and challenges associated with being a caregiver but as I look out the window at all the new growth for spring, I am also thinking of all the benefits.
Some of the challenges we ensure also have benefits associated with them.  I realized early in my life of caregiving, actually when I was acting as both a Mom and caregiver for my child who had a chronic health condition too, that God prepares us for the challenges ahead without our realizing it.  It seems in looking back that each difficult road I’ve traveled helped prepare me for something ahead that would have been more difficult if not for the previous experience.  For myself, I find that God led me in a very unique way to prepare for where I need to be now. 
I originally trained to be a nurse.  My first nursing position was evening shift and I worked “the house” training other nurses in new procedures and helping out in all crisis events.  I learned a lot of skills, both nursing and interpersonal.  When my first child was born, my husband at that time wasn’t coping very well with being the one responsible for her care while I worked so I sought a day shift position.  I became trained in Infection Control, Employee Health, and eventually was the Director of Education and Training.  From there, I was asked to train in Human Resources so I could take over that department (this was obviously a small hospital).  I eventually stayed in the area of Human Resources but moved to another hospital and focused on Employee Relations and development of policies.  My role was primarily advisory in nature (over the phone or email consultations) and I learned the role technology could play in communication. 
As you can see, my nursing and HR training, as well as experience in use of technology put me in a position to be able to work from home so that I could provide care for my husband.  I can now consult with contacts by phone or email while I’m simultaneously assisting Lynn.  My job with my company is no longer 8:30 a.m. – 6:00 p.m. but is now 24/7 (24 hours/day seven days a week).  By working from home I access my emails and continue to work on projects between the times Lynn needs my assistance.  I’m a 24/7 employee and a 24/7 caregiver.  When you speak of multitasking…I’m the Queen!
I can be directing the action plan for a crisis while I am cooking spinach for Lynn’s diet and giving him his breakfast, all at the same time.  In fact, I would say it’s pretty rare that I focus on one thing at a time.  I expect that is true for all caregivers.  Multitasking is a talent each of us has to develop in order to get everything done that we need to do. We each need more than 24-hours in a day but God in his wisdom realized that if he gave us any more, we would never get any rest!  I know if I had more time, I would just fill it up with more tasks.
Though multitasking is a requirement for being a caregiver, it’s also a blessing we have been provided.  It allows us to manage our lives and the lives of those to whom we provide care.  It makes us better employees and more talented workers.  We develop greater skill and stronger personalities.  The only down side is we tend to try to do too much at any one time and we forget to take time for ourselves.
I guess every challenge has a benefit if we seek it.  Sometimes we just have to look a little deeper to find it.

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In sickness and in health…till death do us part

Donna and Lynn October 11, 1997

Sometimes I catch people looking at me in sympathy and you can read in their eyes that the path I have chosen is too much of a sacrifice but what they don’t seem to understand is that I did in fact choose this life.  No, I did not go out and look for someone who I knew would someday become disabled.  In fact, I was very reluctant to marry anyone after my first marriage ended. 
When my first husband left, he explained he had never loved me but thought I would make a good mother for his children so he married me…then realized that wasn’t enough.  Therefore, after being burned in that fire, I wasn’t so sure marriage was for me. I wanted companionship and I wanted someone who was a man of faith and had strong family values.  I wanted mutual sharing and participation in our marriage. 
The way I met Lynn was through answering his personal ad in the paper.  I screened him as he screened me for two hours during that first phone call.  I prayed about continuing to see him and it seemed that I had the green light.  We dated for about four years before we got married.  Neither of us were in a hurry because both of us had bad experiences the first go round.  I in-fact prayed often to ask God, “are you sure he’s the one I should be with?”  We actually have very little in common except for our faith and family values.  Was that enough?  God seemed to be saying, “yes.”  Even on my wedding day, I kept wondering, “should I really do this?  We are SO very different, how will we ever make this work?” but I took a leap of faith and moved on.
The first few years were very hard as we tried to blend our families and life styles. Those differences I was afraid of were really hard to adapt to.  We really struggled and both of us wondered during that time if we had made a mistake.  We just could not intertwine our lives it seemed.  We each kept ourselves at a distance; I guess both being afraid it would not work.
My biggest issue with our marriage was that he did not need me.  By nature, I “care” for people.  I do things for them; that’s how I show my love.  I couldn’t really do anything for him.  He didn’t need me and I felt shut out.  Then he got MS and though he was still physically able, he needed me.  He needed my support; my reassurance and my understanding. 
I think he had a fear though, at least initially I think he did, that I would get frustrated and leave.  He often talked about how he didn’t want me to get too isolated or fed up with him because he didn’t want me to leave.  I think he finally understands now that I have no intention of leaving.  God gave me a caregivers’ heart.  I don’t mind being a caregiver.  I like being needed in fact.  I don’t mean that I don’t get frustrated and that I never want to escape; no, I feel like that nearly every day.  What I mean though is that we have a bond that we will not break now.
Lynn needs me.  He needs my companionship.  He needs my help.  He needs my participation in his life.  So now I have what I was looking for when I first got married.  I feel wanted and appreciated and needed.  His illness meets my needs in a way.  I guess that sounds sick to some but I don’t think so.  I think God is very wise.  He knew what I needed and he knew what Lynn was going to need, and he put us together.  He gave us both perseverance and commitment to make it through the tough years so that now we both have what he intended us to have.  We are truly one now.  We are each a part of the other. 
I know many marriages break up when one of the partners becomes disabled.  I can see how it could easily happen.  It’s really hard to be the strong one all the time and to dedicate your life to the comfort of someone else, but when I said, “in sickness and in health…till death we do part,”  I meant every word of it.  I’m in it for the long haul whether that’s this year or twenty years from now, he’s stuck with me because I’m not going anywhere.

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Will 2012 be any different?

Christmas decorations

So far, 2012 has not been a significant improvement over 2011.  Yeah, I know it’s only January 3, but to be honest, I’m not looking for a lot of improvement over the days ahead.
In looking back over 2011, I must say, it was not a great year.  Lynn started the year barely functional after having gotten out of the hospital after a month’s stay. Then he returned to the hospital in March, nearly went on a respirator, which wasn’t good, but came home after only a little over a week.  Then he went back to the hospital again in June for three weeks for plasmapheresis.  The last admission had some good results as far as increased function was concerned but ever since that time, he’s been struggling with anemia. 
Christmas was much better this year.  He was able to actually participate in all the family gatherings which was a significant improvement over the past two years which he doesnt’ even remember. However, the low ferritin level has him so wiped out that he’s barely able to do anything for himself.
Every year we have a New Year’s Eve celebration.  His family comes and a few of our friends. We (currently me) usually cook the traditional black-eyed peas, stewed tomatoes, cabbage, neck bones, and we usually add lamb and some desserts.  For the past several weeks, he’s been wiped out by night fall.  I tried to talk him out of the gathering this year, but he really wanted to do it so we did (I have trouble saying “no”, can you tell?), but we did compromise and decide to do it in the afternoon rather than at night.  I cooked most of the afternoon and up till about midnight the day before New Year’s Eve and we had the party from 2 until around 5. It was nice to have every come but it was also a lot of work getting it ready.  Several of the guests helped with the clean up so that was a tremendous help, but it was still very tiring.
Ever since then, Lynn has been exhausted as usual.  He stays cold so he drinks hot tea and then he gets hot so he drinks cold water.   I’m cathing him from 12-19 times a day, every day. I can hardly get anything started before he’s calling me back.  Plus since he’s miserable, he can’t get comfortable.  Honestly, I hear him calling me every half hour for something and often it is to repeat what I did in the previous 30 minutes. 
When I had young children, I was constantly being interrupted but I could get them involved in something or take them with me and still manage to get things done.  Lynn can’t be settled.  He’s so uncomfortable that he needs me constantly.  I can’t even get away to go to the grocery store to do all my shopping. I have to make several short trips because he needs to empty his blader every little bit.  I admit, I’m getting really tired of doing it so often.  I now literally pack a bag if we are going even a short trip because I’m sure to have to cath him at least once if not twice.
The constant attention has also impacted my ability to take down my Christmas decorations.  I managed to bring in the outside items on Sunday and it took ALL day to put them away because I could do such a small amount at any one time.  It may be July before I finish putting away the things inside.  I love the decorations and had help putting them out so I have them everywhere this year.  Needless to say, it’s going to be a while before my house gets back to normal.
The other way I’m impacted is in trying to work from home.  He constantly interrupts so it takes forever for me to finish anything.  I’m rather concerned too because my boss wants me to come in Friday to talk about my team.  She is concerned about them so I’m not sure what this is going to mean for me.  Lynn has become very concerned that I might have to go back into work.  I told him we would just have to face that if it happened because we both know I have to work now.  Hopefully I won’t have to make that transition but if I do, it’s going to take a major adjustment around here and quite frankly, I just don’t know how I would be able to manage it.  But I’m not going to dwell on that until there is no other choice.
I need to go give Lynn a bath now.  It’s the only thing that seems to bring him comfort but it’s such a long process that it eats up all my spare time.  I hate to begrudge him a bath because I know how good it can make you feel but for me, it’s just one more chore.  Oh well, better get to it.
So, maybe the ball dropped at midnight on January 1 and 2012 rolled in but I didn’t see it drop (although I was up) and I haven’t seen anything different…just more of the same challenges.  Wonder what will be ahead???
I hope that for you and yours, 2012 will be filled with many blessings and that the Lord will provide you with whatever strength you need, whenever you need it and a heaping measure of peace and comfort to help you make it though each day.  Happy New Year!

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Happy Anniversary

Donna and Lynn October 11, 1997

On October 11, 1997, Lynn and I got married.  As I stood at the entrance to the sanctuary, with my ten-year old escort (my son), my soon to be husband, was playing his guitar and singing me a song that he wrote just for our wedding.  The theme of the song was, “you’re my best friend.”  How true that was to become.
As I stood there listening, my son kept saying, “you’re not going to cry, are you mama?”  I didn’t.  I was just amazed at his ability to sing to me when I knew how sentimental he was.  He’s much more sentimental than I am.  I’m a realist.  He’s a softy. 
Thinking back to those days, I thought our greatest challenge would be blending the two families and it was indeed a challenge.  There were times in those early years that I was not sure our marriage would make it…but we were committed.  We had said our vows before God and we intended to keep them….no matter how difficult. 
The first years were strained as two very independent people learned to adjust.  I admit my greatest issue with the marriage was that I didn’t feel that Lynn needed me at all.  He did everything himself, he wasn’t one who shared his thoughts very much, and we didn’t really enjoy many of the same entertainments so we lived fairly separate lives.  Realizing that was a major problem we worked on finding commonalities and sharing our lives more.
Fast forward fourteen years….now we share everything and he’s totally dependent on me and we’re closer than we ever could have imagined.  Yes, we even finish each other’s sentences and we often start to mention something we’ve been considering to find out the other one has been thinking the same thing.  We are truly one now.  So while MS has certainly been a major challenge that neither of us really expected back in 1997, in many ways it was an answer to my prayers.  I had often asked God to make us closer–to make us one.  I’ve learned over the years, God has a strange way of answering prayers and I have to say, this one falls into that category, but God took a dreadful condition, MS, and made it an answer to prayer.  How awesome is that?  Because you see, now, we truly are, “best friends.”

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I Just Can’t Deal With Another Thing.

Ever felt like you just couldn’t take one more demand on your energy?  I was like that last Monday night.  We got home from vacation Saturday and I stayed up till 3 a.m. putting things away.  Sunday was much of the same except it was catching up on things at home. Again I went to bed at 3 a.m. and Lynn was up several times so even though I didn’t start my day till 10 a.m., I was very tired on Monday.  Monday was back to work.  I work from home so after getting up late, fixing breakfast, getting us both dressed and fed, settling him down on his peddlar because his legs were spasming, I didn’t get to sit at my computer till around noon.  However, I had already been handling work on my phone while I did all the above (I’ve become very good at multi-tasking).

All day was busy with work…many phone calls and 493 emails to go through that had come in while I was on vacation.  I got some of those done on Sunday and most of the rest on Monday.  The house was hot all day but so was outside so I turned the fan on me and figured Lynn had set the thermostat so it would be warmer.  (He has hypothyroidism and anemia so he’s cold most of the time now). Around 7 pm I ran to the grocery store because I hadn’t had time since we got home from vacation.  When I came back, Lynn was complaining about how hot he was. He did indeed look like he was melting so I rechecked the thermostat because I had set the temp to cool off while I was at the store.  Well it was set now at 70 but the house temperature was registering as 80.  We had a problem!

Lynn told me how to check the fuses in the garage and I went outside to hit the reset button on the heat pump. That wasn’t it.  Lynn then told me to crawl under the house (I hate doing that.  I’m afraid of snakes and not crazy about spiders or mice in case they are there either).  I crawled over to the inside unit, checked the fuses there–it wasn’t a fuse issue–pulled out the filter–hmmm, when was the last time I changed that?  obviously not recently–nothing worked.  It was so hot, I was pouring sweat.  Lynn needed help so I’m back inside helping him while he’s telling me to go next door to see if our neighbor can help (he’s an electrician).  Neighbor not home.  Dinner still needs to be picked, the house is so hot we are both sweating and Lynn is getting very weak from the heat but can’t go to bed because of muscle spasms.  He’s giving me instructions on how to check this and that and to be honest, I thought if I had one more thing to do I was just going to lose it!

Maybe it was the heat; maybe the lack of sleep for two days in a row; maybe the fact that I had a message on the phone from Lynn’s doctor to call when we got back because his blood work was still bad on the anemia; maybe because I knew the AC was going to cost a lot to fix; maybe the hunger; maybe the guilt from not being able to handle it all with grace; but whatever was behind it, I just couldn’t take it anymore…..

But, when you are a caregiver, you don’t have the luxury of giving up. Who else is going to handle it if you don’t?  Lot’s of people are helping us and many more are offering to do so but when you are home alone with someone depending on you and it’s night-time and you know that anyone you call will be burdened, the weight of the responsibility seems like a 2-ton boulder. Know what I mean?

I managed to get through it all that night.  I took several deep breaths, ate a bowl of ice cream (that’s why I’m so fat now), and called my angel of a son-in-law who got dressed, came over and worked on the unit.  He couldn’t fix it but his parents had a window unit they were not using and he went and got that for the bedroom so Lynn could get cooled off.  He was our hero and guardian angel all rolled into one.  God took care of our needs again and gave me the strength to carry on.  He sent my son-in-law who is like a son to me to shoulder my burden and help me to keep putting one foot in front of the other. 

Thank goodness when I can’t deal with another thing, God sends me someone to help carry the load and help me to continue on our journey.

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