Ms Journey

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.

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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.

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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….

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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

Reaching my Saturation Point – at least today Read More »

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

Live in the Moment Read More »

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.

The Blessings of Children Read More »

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

Virtual Support Group Update Read More »

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?

Time or Just One Continuous Move Forward? Read More »

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.

Sometimes I Feel Like I will Explode Read More »

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?

Virtual Support Group by Skype? Read More »

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?

Financial Support for Home Care Read More »

Patient Advocate

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Out of the blue today, Lynn asked me to write about advocacy. He said, “please stress to your readers the importance of having an advocate or being one for yourself,” so here goes.
When Lynn and I first got married, we were both VERY independent.  Both of us had been married before and both of us had learned to survive as single parents and single individuals. Therefore, unless we needed someone to drive us home after a procedure, we never accompanied one another to medical appointments. That was fine at first but then I became very frustrated with that approach because Lynn’s approach to health care is “the less I know the better” or “ignore it and it will go away.”  Mine, on the other hand, is “tell me absolutely everything, give me a copy of every medical report you receive, and where can I get more information?”  Therefore, as I began to notice more and more often, symptoms that, to me, signaled MS, I began to ask more and more, “what did your doctor say?”  The answer was always the same, “I’m fine.”
Finally after one intense discussion around this factor, I announced that the next time he went to ANY doctor, I was going, too.  I’m glad I did.  I sat silently to the side and listened as the doctor asked Lynn how he was doing.  His response, “Fine, if I was any better I could not stand myself.” Knowing that doctors do not have x-ray eyes and cannot read minds, I spoke up and said that wasn’t exactly correct. So began, my role as MS Caregiver, and patient advocate.
Initially Lynn continued to have a hands-off attitude.  He told me he didn’t want to know anything other than what he had to know to get by day by day. When I would be reading about MS or looking at something on the internet about it, he would turn his head as he walked by.  This attitude continued until his second admission to the hospital.
Lynn’s first hospital admission was pretty serious.  His body temperature dropped so low it could not have sustained his life for long.  That was due to aspiration pneumonia which occurred when he coughed up a nasogastric tube through which he was getting a tubefeeding and the feeding went into his lungs. He was actually too sick during this admission to participate in his own decision-making so I stayed with him 24/7 and did it for him.  I was present whenever the medical team visited and I asked hundreds of questions to make sure I understood what was going on and what it all meant.
Then on his second hospital admission, he learned for himself that he needed to speak up on his own behalf.  Lynn’s diaphragm was weak; whether from an MS exacerbation or the intrathecal baclofen dose being too high and making the muscle weak. There was a period where I expected him to be put on a ventilator at any moment.  Thanks to prayer and a good medical team, we avoided that but when he became more alert, he started taking a more active role in the decision-making.  He was convinced he was NOT having an exacerbation so he refused the IV steroids.  There was one doctor in particular who kept insisting he had to go on steroids and he flatly refused to do so.  He insisted the baclofen dosage be adjusted and that, along with some aggressive pulmonary care, helped him to overcome the respiratory depression he was having and be able to leave the hospital. 
During that admission, he had difficulty talking because he had limited oxygen and had to wear an oxygen face mask all the time.  Often the doctors would assume he was going to go along with what they wanted and would not wait to hear him out.  However, I learned to read his signals and would at times, block the doorway and say, “he wants to say something to you, listen.”  They would apologize and indeed listen.  Sometimes they just get too busy to slow down and listen to the patient and you have to force the issue.
That’s what patient advocacy is all about…making sure your opinions are known and heard.  Healthcare professionals can be intimidating.  They are trained to be very confident in their decisions and in deciding what is best for someone; they have to be so that they will have the courage to do what has to be done. However, sometimes they have a hard time turning that off.  That’s when you have to speak up.  You know your own body and how your body reacts to situations.  In much the same way, you know the body and the reactions of the person you care for. 
As a caregiver, you can often spot changes that even the patient doesn’t notice.  I’ve intervened in Lynn’s care several times and having done so, prevent a great deal of pain and suffering for him. You won’t always know the answers but listen to your gut instinct when you feel something’s wrong. 
…and be a pest if that’s what it takes.  Don’t be abrasive or rude; that will backfire.  No one likes to be bullied or threatened so don’t go there but be persistent.  Keep asking for an explanation and pointing out discrepancies until you’re satisfied that what you know is being considered. I’m not saying to always disagree with the medical team or to insist for the sake of insisting, but just make sure you’re heard and your opinion is considered.  Get a second or third opinion if necessary, but always look out for your loved one like a mother bear watches over her cubs.  It’s just one more essential role of being a caregiver.

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Keeping up with the Paper Work

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If you are a full-time caregiver, or even part-time but the primary person responsible for someone else’s care, then you know all about paper work.  It’s another one of the unpleasant aspects of caregiving that we have to endure but are all too often unprepared for or unfamiliar with.  I’m very fortunate in that I have a healthcare background.  I understand the reason behind all that information “they” gather and why it has to be reviewed every visit.  I also know about insurance to a limited degree but more about that from personal experience than professional.  All that being true; however, it still is difficult to keep up with all the paper (virtual or hardcopy) and still quite frustrating at times.
One of the things I did early in my caregiving “career” was to get a journal where I recorded all the events that happened in Lynn’s medical journey.  I wrote down every doctor’s appointment, who he saw and for what and any changes to his medical regime.  That has come in very handy when one of his many specialists asks me when something happened.  Lynn has a mind for dates and events and can tell you right down to the exact date, and often the day of the week, when something happened…and he’s rarely wrong. Me, I can’t remember if my wedding anniversary is on October 10th or the 11th.  When asked when something happened, I can give a general time frame (such as, when the kids were in grade school, high school, or college; before or after we were married…) but I do NOT remember dates; therefore, I have to write them down. 
I also try to keep a running list of all his medications on my computer.  I update it with any change and make sure it’s accurate before any medical appointment.  I update the “current as of” date and always take it with me to give to the doctor.  This saves time when the doctor or nurse is doing a “medication reconciliation” which is a Joint Commission requirement for hospitals and physician practices to be accreditated.
Knowing how important and helpful this information can be, I readily agreed when I was contacted by Tory Zellick to review an advanced copy of her book, “The Medical Day Planner: The Guide to Help Navigate the Medical Maze.”  Tory, herself was one of the caregivers for her mother, who had a six-year struggle with cancer which she was unsuccessful in winning. This book arose from Tory’s struggle to help organize her mother’s care and help everyone who participated in the caregiving to stay up to date. Maybe, if you are the sole caregiver, you would not find it as helpful as those who have multiple people helping out, but I think that even if you are the primary caregiver, you would find this Medical Planner to be a handy tool to help keep all the essential information about your loved one in one place. 
The book is well-organized, sectioned into categories of responsiblity like medications, appointments, important phone numbers, etc. Within each section are worksheets for recording pertinent information on that topic as well as narratives related to the information being gathered.  The narratives are basic and to the point, written in a common-sense approach without too much formal interpretation–just what she found she needed to understand to be able to accurately understand the information needed.
The Medical Day Planner is a spiral notebook type presentation but hard cover so it’s durable.  My only constructive criticism, which isn’t a criticism at all but a personal preference, is that I would have preferred it be in a three-ring binder instead of a spiral binding so the 52-week planner at the end could be replaced annually with new sheets.  Being in a spiral binder, it renders the planner limited to one year and as we all know, if you’re caring for someone with MS, you’re looking at years instead of weeks of caregiving. Therefore, that section is not as useful to me but the rest of the Planner is excellent.  It would also have been helpful to have a “pocket” inside the back or front cover to insert documents that you might want to take with you to appointments.
I’m not sure when the book will be available for purchase but you can check it out further if you are interested by checking out her website, http://allthingscaregiver.com/.  The advanced copy I received also had a sticker that states, “for wholesale information contact, Michele Farrington – mfarrington@tuttlepublishing.com.  It’s worth taking a look to see if you might find it helpful.
Thanks, Tory, for sharing what you learned and for letting me review your work. 
Good luck,
Donna

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Why is Getting Help so Hard to do?

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Ever since Lynn became totally disabled, I’ve had lots of encouragement to get some help.  I know I need help.  My muscles hurt from over use; I get frustrated trying to do everything I need to do; I know that there is a high risk as a caregiver that I will have a shorter lifespan.  So why don’t I just get some help?
I’ve heard from several of you the answer to that question because you have already struggled to make that decision and you encourage me to do the right thing for both myself and Lynn. So why don’t I just get some help?
Protection – Just like a mother lion protects her cub, we caregivers protect the person we give care to.  There is usually a connection with the person both of emotion and responsibility.  As a spouse, I love Lynn and want his every need to be met to his satisfaction, if possible.  As his spouse, I promised to love, honor, and obey in sickness and in health, etc. so I also feel a sense of responsibility.  Rationally, I know that promise does not mean I have to provide the care but there is a commitment and emotional piece that leads me to want to put his needs first before my own.  I also know that I know him better than anyone; what he likes, how he likes it, when he likes it, etc.  I know that any caregiver we hired would not likely be as attentive to him as I am.  Would that person catch signs of distress or illness soon enough to prevent more harm? Lots of “what ifs?”
Selfishness – This is a bazaar one but selfishly I like being recognized for how well I care for him.  Pretty sick, right?  I like to hear compliments about how well he’s cared for and to feel appreciation from family members for “my sacrifices.”  I also have somewhat of a martyr complex for some sick reason.  I find self-worth in sacrificing for others so there is some secondary gain in what I do as well.  Plus I rather like working from home in scrubs rather than putting on makeup and going into work (at least some of the time anyway.)
Financial – This is a big one.  Lynn gets basic social security benefits–hardly more than he took home every two weeks–so my salary is the primary salary.  I make a good salary for the work I do so I’m very blessed in that respect but I’ve run up a lot of credit card bills buying things to make our life easier, medicines, supplies, nutritional supplements, equipment, etc.  All that stuff is expensive and I also had children getting married, unemployed and needing help, going to college, etc.  All that cost adds up.  I don’t have spare money that could cover much in the way of daily care.  I know I need to carve out some income in that direction and over the last year, I’ve managed to pay off some of those bills but buying the wheelchair accessible van and saving to build a new house doesn’t leave much to use. Another consideration is that insurance doesn’t pay for home caregiving, plus I live in a very rural area so resources are limited. 
Lynn’s insecurities – He’s afraid for me to not be here.  He knows that I’ve “saved his life” several times by noticing changes in this condition and getting the help he needed sooner than later.  He knows I will find ways to make what he needs happen and quite frankly, the thought of having a stranger around all the time is not a welcome thought.  What do you do with a paid caregiver when Lynn doesn’t need anything at the time? Do they sit in the room with him and watch TV?  That’s like having a guest around all the time and we’re just not that used to having company.
Then there’s the safety issue.  Criminal background checks, how well does the caregiver know their job, do they lift safely, will they be patient and nice or mean and abusing? 
So much to consider….It’s not easy to take that step even when you know it’s something you really need to do.  I’m getting closer but I’m still not there yet…but it’s only a matter of time.  Pray for me that I’ll get there and find a way to make it work.  Thanks for all the words of encouragement and support.  It really helps.

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Going to the Movies

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I have always enjoyed a good movie. It’s one of the things I miss about not being able to get out and go places now.  However, you don’t have to go out to see a movie any more; you can now do it in the comfort on your own home and with the benefit of a “pause” button. 
What would we do without “pause”?  We rented from “the big red box” a movie called, “We Bought a Zoo.”  Fantastic movie!  I highly recommend it.  So after I gave Lynn his shower, got him dressed, took my own shower (which I find necessary every time I give him one), got him settled with his peddler, and gave him his afternoon meds, I put the DVD in to watch. 
About 10 minutes into the movie, I paused to cath him and fix him some tea.  About 20 minutes later, his foot was hitting his wheelchair so I had to fix that (didn’t pause that time), ten minutes after that, he needed nose spray.  I settled back on the bed for about thirty minutes and it’s “pause time” again for another cath.  Clean everything up and back to the movie.  A few minutes later, he needs his arm scratched.  Ten-fifteen minutes later, his foot hurts and his socks need to be pulled up.  (This one takes a pause.)  Got him settled, restarted the movie, and he needed nose spray again (he has chronic sinusitis).  Then another cath (yes that’s three in the space of what should have been a two-hour or so movie.  Ah, yes more tea is needed too. 
I lost count of how many times I was interrupted during the movie.  Seems like at least every 10-15 minutes.  I used to think the kids were tough to watch a movie with.  I think Lynn wins the contest as to who needs more attention.  It’s not always like this but it often is at night.  Late evenings are always bad and this past week has been significantly so.  He just started Rebif so he’s having to get used to that.  His dietician started him on some new supplements that help with removing bad stuff and rebuilding good stuff.  The pollen is heavy which always takes a major toll on his energy level.  So it’s been a hard week for him and it doesn’t seem to be getting any better.
But with all the pauses and the interruptions, we managed to go to the movies and we both really enjoyed it.  Certainly isn’t something we could do at a theater (can you image how irritated our “seat mates” would have been if I had gotten up to help comfort Lynn that often?)  But we adapt to our limitations and we find ways to have fun and get entertained.  Our Friday night date was different but enjoyable for us both.  Hey, and if you haven’t seen that movie yet, it’s a really good “feel good” movie.  I recommend it!

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Multitasking

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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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The Secret Life of a Caregiver

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 I follow the writings of another caregiver, Patrick, (http://caregivinglyyours.blogspot.com) who has been caring for his wife who has MS for 22 years.  Patrick recently discovered he had cancer and one of the comments he made in his blog struck home with me.  Patrick described how he hid the truth of his illness from his wife so that she would not become upset over the news. When I read that, I wanted to reach out and give him a hug and say, “I know.”
Who, as a caregiver, has not been in the position of putting on a smile to hide the true emotions they are feeling?  I have been very fortunate (so far) that I have not had any serious illness to hide, but I have learned that I must be careful what I share. I remember coming home from a medical appointment where my healthcare provider warned me that if I didn’t get some sleep, I was likely to become very ill…and then who would care for Lynn?  More than a concern about my own health, I started taking measures to address the warning so that I would be around to care for him. 
I admit though, I told Lynn what the doctor said.  He initially took it in and encouraged me to follow the doctor’s advise.  Then I started noticing that depression was setting in for him.  He would be on the verge of tears and he was constantly asking me how I was feeling.  I realized that while I felt responsible for him, he felt guilty for the potential harm he was causing me and he was having a very difficult time dealing with it.
In the spirit of full disclosure, I will share that I am sometimes evil.  Sometimes I am so tired of being tired and I’m hurting all over from muscle strain and the burden of doing everything, and I just want to escape…then he calls, “hey, sweetie!” to scratch an itch for the 10th time in an hour or to adjust his clothing…AGAIN… or something else he needs when I’m in the middle of trying to get something done that REALLY needs to be done.  I admit in that moment, I want to make him feel guilty so that he stops needing me so much.  I tell myself that he doesn’t really need that much attention or that he just wants my company so he’s making up reasons to call me, or he’s just being plan unreasonable and impatient…. I’m angry and resentful of the situation so I say something that I think will make him feel sorry for me.  I hope you all will not think too badly of me but at those times, I’m evil and mean.  I don’t like myself after that and when I see I stuck home with what I said to him and he’s feeling guilty then I feel awful and try to make it up to him…but I admit, it happens…especially at night when I’m tired.  It’s embarrassing and I feel guilty that I’m so petty but it’s true unfortunately.
I’ve found that I have many secrets as a caregiver.  I keep my fears a secret (when will he get worse, what do I do about a caregiver, how can I manage repairs, etc.)  I keep my desires secret (I want to escape, I don’t want our life to be this hard, I don’t want to move one day)  I keep concerns about my health a secret (are those just stress palpitations? do I need surgery on my thumb joints?) I keep my “bad” self secret–my grouchiness, my frustrations, my resentment at times.  
I keep all these things secret because I don’t want to hurt Lynn.  Some of it he knows by observation and experience anyway (especially my grouchy nature)  and sometimes I share just enough to prepare him for what may come but not so much as to drive him into a depression.  It’s tough being the strong one though.  Sometimes you just want someone else to carry the burden awhile.  That’s why I wanted to give Patrick a hug and say, “I know.” 
To Patrick:
I’m praying for you, Patrick and wish you the very best. I’m so glad the surgery was successful and you dodged the bullet, but right now, it’s time for someone else to care for the caregiver.  God Bless.

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Short Trip but Major Planning

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If you are a caregiver for someone who is totally dependent on you for everything, you know that there is no such thing as a “quick run” into anywhere when you take the person you are caring for with you.  Today, Lynn and I had an appointment with an attorney to sign our wills, power of attorney, and medical decision maker documents.  The location was approximately 35 minutes from our home so I estimated we would be gone two maybe two and a half hours.  I also planned to stop at the post-office, return something to the drug store, and stop at the bank.  Here’s how it went…..
The appointment was for 10:30 a.m. so we got up at 7:00 to get ready.  After cathing Lynn and arranging things within his reach, I went to put on clothes and prepare his morning supplements.  Then I returned to unstrap him from his peddlar, put on shoes, etc. and return to the kitchen where he took his supplements and exercised while I ate breakfast.  Then it’s into the bathroom for his morning routine, and to bed to rest while I checked messages at work between answering his calls for assistance.  Then getting him up, dressed, situated into his wheelchair, and groomed for the trip. As he’s waiting, I assemble his “bag” of supplies to go out….saline nose drops, Valium for spasticity, his cell phone, cold water with a straw, a smoothie for a snack, supplies for up to four catheterizations, getting what I needed for the post office, taking it to the van, cathing him one last time, getting the van ready,  securing him into the van and locking up the house. 
Then we’re off to the attorney’s office.  Almost there and he needs to be cathed.  Pull over and take care of that (if you’ve never cathed someone who is in a wheelchair while they’re in a van, you don’t know what you’re missing).  We get to the lawyer’s office, I find a place to park in the shade (it was supposed to be near 80 today) and go in to say, “we’re here.”  Lynn can’t go in because the building is not handicap accessible for wheelchairs (as we found out the hard way the last trip when his wheelchair got stuck in loose rocks when he drove off the sidewalk trying to maneuver around bumpers of cars).  Our lawyer is very nice and he gets everything ready and brings the papers and witnesses to Lynn in the van.  All’s well and we leave.
Next stop is the drugstore.  He stays in the car and I run in to return a mobility table that was supposed to be able to attach to his wheelchair which didn’t.  Fortunately that was a five-minute stop.  Back to the van and he needs to be cathed again but where we are is too public.  I’m craving caffeine so we go to Starbucks where I can park away from viewing eyes.  Another “in van” catheter experience.  Then coffee for me and tea for him after I help him get his smoothie for a snack and strap him in again so we can move on to our next stop. 
The next stop is the bank back near our house.  He needs to get out this time because we are setting up a new account by closing his business account.  That takes about 20 minutes plus we got a safe deposit box for the wills.  The bank was easy to access except doors had to be held for him to drive the wheelchair though since there were no automatic openers.   Back to the van, strap him back in again, and he needs to be cathed again.  I need spinach at Foodlion so we go to the far end of that parking lot, I cath him, again, run inside and return to realize the post office, which is our final stop, would be closed now for lunch. No matter, Lynn is exhausted by now and so we head home for me to feed him and hook him up to his peddlar to help him relax. 
I unload the car, set everything back up for his easy reach, run to the post office alone (which I must say is much easier and quicker alone) and get back in time to, yes, cath him again.  By now it’s 2:30 and I’m ready to begin my day at work….
It’s great to be able to get out of the house now using our van which makes the option to go places actually a possibility.  However, travel is no easy matter.  Supplies must be taken, nourishment must be considered, and comfort must be planned for.  Much like taking a small child somewhere, travel takes significant planning but somehow taking someone who is 6 ft tall and weighs close to 200 lbs is a bit more complicated than taking a 25 pound infant….

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Life Changes

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I’m going to be a grandma for the first time in June!  My daughter is having a little boy and I’ve been more than a little excited since the first moment I heard the news (which was about two days after she knew she was pregnant). She and her husband are going to make great parents and I’m fortunate that they are not that far away so I’ll be able to see them fairly often (I hope).
I’ve thought a lot about this new baby entering into our family.  I day-dream about babysitting and playing with him.  I want to go to their home for his birthday parties, attend his school functions…all the things grandparents love to do.  Then there’s this part of me that thinks about the reality of my ability to do that.  I expect I can babysit here just fine but Lynn can’t get into their house so  I couldn’t go to his birthday parties unless they were somewhere accessible or Lynn didn’t go.  I also wonder as I look ahead, when the little guy actually starts school, what shape will Lynn be in by then.  That’s five years away.  Thinking back five years ago, Lynn was still working and totally independent.  What if the next five years has the same decline of the past five? ….I can’t even go there.
So instead, I’m going to think positively.  I know that there will be grandma time.  I also know that Lynn wants some grandpa time so we’re thinking about getting him one of those things you strap on to hold the baby so he can safely cuddle him, too.  Oh, probably he could not tolerate much time actually holding or playing with the baby but we’ll find a way for him to participate. I already have visions of the two of them racing down the hallway in Lynn’s powerchair!
That’s not our only life change coming up.  Lynn’s son is getting married in November!  Our kids are all great at finding ways to include Lynn so he can fully be a part of their lives.  For instance, Lynn had secretly hoped that his son would ask him to be his best man but he was not going to say anything about it to him because he didn’t want to put any pressure on him.  It’s their wedding and we want them to celebrate as they see fit.  But he didn’t need to worry, he’s going to be the best man.  We’ve been laughing about me getting him dressed in a tux and this should be something to see.  Maybe a youtube moment that would go viral?
The wedding is at 2 pm, early enough that hopefully Lynn won’t have gotten worn out by then and late enough for me to make sure he’s had all his essential daily activities completed in plenty of time.  The other factor is the rehearsal dinner…you know the groom’s family does that.  My concern, though not shared with them, was that between the rehearsal and the dinner, Lynn would become so worn out that he would be barely able to function the next day.  Well, they solved that problem for us.  We’re having a rehearsal luncheon instead.  Everyone will come to our house, I’ll fix something we can serve buffet style and that can be fixed in advance and when he gets tired, he can rest.  I’m hoping he can do the lunch thing, ly down for a while and then go to rehearsal, come home and rest for the remainder of the night and be refreshed for the wedding.
So we have major life changes happening in our family.  I’m excited about them all but as is true for anything, it has it challenges.  When a family member has MS, special consideration and long-range planning is needed. You hear the news, get excited, and then at almost the same time, start thinking about what changes will be needed so that the MS won’t get in the way.  The important thing is to make sure it doesn’t stop you or anyone else in the family from participating and enjoying the new events.  It would be easier in some ways to just “sit this one out” but we intend to keep our lives as normal as possible and to participate in whatever we can whenever we can… and so far it’s working.  I hope the same is working for you and yours.

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Hope or Reality?

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It is Lynn’s belief that if he accepts that he has MS then he is allowing MS to “have” him. He says that he has seen enough people who we struggling along, maybe feeling bad, but still going along until they find out they have a serious condition.  Then as soon as they accept that they have cancer or heart disease or whatever, they give into it and no longer push through it. So what he tells people is that he was diagnosed with MS but that he refuses to accept that he has MS.
Though I understand what he’s saying, I don’t buy it myself.  I’m the type who wants to know as much as I can so I can take control of my options.  I want to choose what I do and when I do it. I want to plan for my future.  I’m a realist. I want to know, within reason, what to expect, good or bad.  I know that knowing can sometimes have a “self-fulfilling prophesy”  component to it but I think that knowing doesn’t mean you have to just accept that nothing can be done but instead it allows you to make intelligent decisions.
When we are expecting test results that may not be good, Lynn usually tells the doctor to tell me the details and he tells me to just take care of it because he doesn’t want to know.  I’ve found that’s not entirely true.  The reality is that he has to ease into the knowledge. He’s more like the person who s-l-o-w-l-y peels off the bandage while I’m the one who ripes it off, sees stars for a moment, and then takes a deep breath and moves on. 
This difference in how we view life and the future has us at odds at times.  For instance, before he found out he had MS, we bought land to build a house.  He wanted to do it all himself so for about five years, he designed the house, researched materials, and found someone to draw the detailed plans.  Then he began to build the house.  We currently have a complete foundation that has been sitting there untouched for 2-3 years.  Last summer, he decided we were going to find subcontractors to start back to work on it.  He has not made much progress on that decision other than he has selected a builder and has some contractors selected and he’s re-designing the house to adapt to being in a wheelchair.
He has changed the design of the master bathroom to make it easier to shower.  He’s figuring out how to put a floor to second-landing ramp in the living room so he can drive his wheelchair to the two lofts that will be at either end of the open living space.  He continues to work on the new home, planning for the future.  He’s looking forward to the day he can oversee it being built and moving in.  He even still wants to add a pond in the back so he can fish….
Me, other the other hand–I’m thinking, “yeah right.”   I have no true belief that we will ever move into that house.  In fact, right now, I can’t say that I even want to.  The house we live in now is wheelchair accessible.  My daughter and son-in-law live ten minutes away.  I have a good neighbor I can call on to look out for the place if I’m away.  It could certainly be designed better for us but if we moved, I would have so much work to do to get the house ready to sell and I had rather burn it down than try to pack everything we have in it! (not really but it will truly be a nightmare to pack up)
If I share that with Lynn, however, then it’s the same as if I’m saying he will never get better.  He works out every day and pushes every day to get stronger so that he may someday be able to walk again.  I have to be so careful with what I say so that I don’t take that hope away from him….but I’m afraid to hope. I know how MS works, especially when it gets to this stage.  It doesn’t go away.  I occasionally hear stories of people who were in wheelchairs who walk again but I’m afraid to hope that that will be him because I don’t want to be disappointed when/if it doesn’t happen.  But I don’t want to stop him from hoping or trying either.  He needs that hope.  He needs something to work toward….and it could happen, couldn’t it?
What if he’s right?  What if the only reason he is unable to do anything for himself is just because he needs to build more strength? What if there is not permanent damage but instead what we see is his de-conditioning from all the set-backs he has had?  What if this new diet continues to make him feel better and by feeling better, he can do more and by doing more, he gets stronger and by getting stronger, he regains his ability to walk?  It could happen, couldn’t it?  If it did, then my reality would totally change and I would be willing to move and pack and whatever else was necessary to start a new life in a new home.
So what do we do?  Hope or live in reality?  I guess I promote hope for him with a strong dose of reality for me.  I still need to plan for “what if” and I still need to make sure his needs, as they are now, are met.  He can hope but I need reality to cope….that’s just the way it is….

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