Caregiver

Someone who provides care and assistance to someone else

Will 2012 be any different?

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Christmas decorations

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

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Christmas Eve

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Fixing Christmas dinner

It’s 12:12 a.m. Christmas Eve.  In a few hours I’ll be back up getting ready for my kids to come over for our Christmas Eve time together.  I love having them come over but as with all things, MS gets in the way it seems.
I had a call from my son earlier saying he feels stuffy so he might not come for dinner Christmas Eve night because he doesn’t want to expose Lynn to anything.  All our family is very thoughtful regarding exposing him to anything. They know how fragile his health is and how difficult it is for him to recover. But I really want my son to come.  It just won’t be Christmas if  all the kids can’t be here.
Lynn has felt miserable all day.  He’s been very testy and hard to get along with. He’s so tired and uncomfortable and needs constant attention.  I wonder if he will even be able to enjoy the family time together.  Every night for the past two weeks he’s needed a hot shower to make him feel better.  The kids are coming over around 6:30 so that means he can’t have one.  How will that go?  Will he just suffer through?  I expect he will but I’ll see it and know he’s miserable.  Why can’t he feel good anymore?
He and I were not going to exchange gifts this year because we can’t go shopping but I had a chance to do so Thursday and picked up a couple of things for him.  I hope he won’t be upset that I bought him something but I love to give presents and it’s just not Christmas if you can’t give things to people you love.  I know he can’t shop; plus if he shops on-line he has to use my credit card so I know anyway.   It’s just the way it is. I’m okay with no gifts for me but I really want to give to others.
I admit I haven’t had too much Christmas spirit this year.  I used to do so much at church for Christmas and that really represented Christmas to me as much as anything did.  We haven’t been able to go to church in over a year now so a huge chunk of what makes Christmas special for me is missing.
So ready or not, Christmas is here.  No need to decorate anymore.  If presents aren’t bought by now, it’s basically too late…and in two days, it’s over till next year.  I need more time!  I want more celebration… and I want Lynn to be well enough to enjoy it.
It’s time to go feed him dinner then it’s off to bed for the night.  Tomorrow will be busy with a few errands to run and a roast to prepare for dinner and some last-minute wrapping.  I’m looking forward to it but afraid to get excited as well for fear that something will happen to keep us from getting together.  I sure hope we ALL get to enjoy it.
Here’s hoping you get to enjoy yours too.  After all, we are here, and alive, and loved, and Christ gave up everything to give us hope of eternal life by coming as a baby, totally vulnerable in the world.  What more could we ask for?  Whatever happens, we are blessed.
Merry Christmas.

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Family Gatherings

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Helping Lynn during family gathering

This past weekend, my parents and siblings as well as our children and theirs, came to our house to celebrate Christmas.  It was a wonderful time; lots of laughing and sharing…as well as good food.  We rarely get to see most of them since Lynn has become wheelchair dependent so these times together are especially precious. 
Changing where and how you do things is one of the adjustments that comes with being a caregiver. Since most homes are not designed for access and steps or narrow doors make it difficult to negotiate around most homes, the places a wheelchair dependent person can go are rather limited. The result is that you either become isolated from your former friends and family or you open your open to them coming to you.  That’s what we do; we have everyone to come our house.  It’s funny but before Lynn became disabled, I used to really stress out and have to have the house clean and neat with everything looking great.  Now, I’m just glad they are coming and have learned to let it go…somewhat.  I still like to make it look nice but I’ve also learned that if I don’t get the chance to do that; everyone understands and it’s no big deal.
Lynn was really looking forward to this year’s get-together.  He has not been able to participate in our  family get-togethers for the last two years due to some aspect of living with MS. This year he thought would be different, but it didn’t turn out as well as he had hoped. He realized shortly after he got up yesterday that it was not going to be a great day.  After breakfast he had to lie down because he was already exhausted.  He rested about an hour and he got up just before everyone got here so that he managed to great everyone and participate through lunch.
He was there for the welcoming greetings and for my daughter’s big announcement.  You
Baby's Ultrasound (profile shot)

see, he and I had known since October that Sarah (my daughter from my first marriage) was pregnant but she asked that we not tell the family so that she could do it herself.  Boy, was that hard but we managed. It’s been especially hard because she has had a difficult pregnancy so far; excessive nausea with a lot of weight loss and at least two hospitalizations for dehydration.  She was out of work for about six weeks and used up a great deal of their savings so it’s been hard not to share with our family the struggles she’s been having.  She’s better now but still on an infusion pump for nausea. 
We’ve been talking for a couple of weeks about how she would make her big announcement.  Since the pump is rather obvious, she had me call her when everyone was here so she could come in last with her coat on.  Then she presented a special Christmas present to my parents (her grandparents).  It was an oranament that she had affixed a picture of the baby’s ultrasound scan to.  It took them a minute to figure out what it was but when they did, everyone was very excited.  It made the day extra special, and Lynn was able to be there for that. 
He also managed to eat a pizza that was especially made for him by our church friend who cooks his gluten-free diet entrees.  Often when he’s this tired he cannot feed himself but he didn’t want me to feed him in front of everyone.  The pizza was the perfect solution. Because he could hold the slices, he was able to feed himself successfully, plus since everyone else was also eating pizza, he fit right in.  (Besides that, the pizza they made for him was wonderful!)
Right after lunch, the family gets together to play games.  It’s a way for all of us to be together and share in an activity of fun regardless of the age of the players. We divide up into teams and have a lot of good-natured competition.  Once we started the games though, Lynn had to lie down.  He was absolutely exhausted.  I put him to bed and kept the baby monitor close so I could hear him when he needed something.  For the rest of the day, I divided my time between taking care of him and coming back to the party. Even when he woke up, he was feeling too bad to join back in.  I attached him to his peddlar and would come back about every twenty to thirty minutes to make sure he had what he needed, give him either hot tea or cold water depending on what his body temperature was feeling at the moment, and cathing him since he was drinking so much.  He was very disappointed but felt so terrible that there was no way for him to join in. 
Overall this year’s gathering was better for him than last year’s by far but once again he wasn’t able to really fully participate… and neither was I.  I’m fortunate that my family just steps in and picks up the slack.  They put the food together and set everything out.  They also cleaned it all up and I came out of his room to a clean kitchen with everything put away.  They really try to pitch in with whatever they can do.  I really appreciate that because it allows me to also enjoy the time. 
When you are a caregiver, it’s like when you have small children–you never really get time off except that with children, it’s a little easier to get a sitter.  When the person you are caring for is 6 foot tall, weights about 200 lbs, and can only do very limited things for himself, finding a sitter is not so easy.  And while the person is an adult, you find that you watch over them in much the same way that you watch over a child.  You are constantly watching to make sure they do not run into anything with the wheelchair, you anticipate what they need so that it’s within their reach or you go get it for them, you watch for signs of distress…are they warm enough?  comfortable?  do they need to go to the bathroom? did they get enough to eat? and on and on.  I ate my meal standing up next to him so that I would be close in case of a problem.  I also am always looking around to see if he has a pathway that’s big enough for him to get into or out of areas without knocking over something or someone.  As a caregiver, you must always think ahead and plan for the what ifs?
All in all though, our family get-together was great.  I had time with everyone.  I managed to eat and snack and participate in the games.  I managed to be both a part of our family fun and the companion to Lynn that he needed…so it’s all good.  It’s different but it’s good; just like so many other aspects of this condition.  
I have three more celebrations coming up this week.  Thursday someone is staying with Lynn while I go out with my staff for lunch to celebrate the season.  Saturday night our kids and their significant others will be here for dinner and then Sunday, Lynn’s family will be here for lunch.  I am looking forward to it all and hope that you all will be having similar good times and good memories. 
Merry Christmas.

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Ferritin Deficiency

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When Lynn went to the doctor last week, several blood tests were done to find out why he is feeling so tired and run down.  We got the results yesterday and was very surprised to find out that his hemoglobin was greatly improved (now 14) as were his other lab values.  For the most part, everything was within range of what it could be and still be normal.  So why does he feel so awful? I think he has ferritin deficiency.
What’s that you say? Ferritin is a protein produced by the body to store iron. When there is insufficient iron in the blood, the body uses the iron stored in ferritin. Once the iron levels in the body improve, ferritin will again begin to store iron but there needs to be a surplus of iron before that happens.  Lynn’s blood work shows that his iron level is getting much better (his is 66 and the range is 30-165) which is why his hemoglobin has also improved.  However, his ferritin level is only 31 (normal is 30-330).  At this level he has symptoms of ferritin deficiency.
With low ferritin, the person gets tired easily and is unable to tolerate even moderate levels of physical activity. They have almost no stamina and will experience sudden loss of energy even with routine tasks. Their skin is often pale and dry and it’s common for them to have thyroid disorders.  The thyroid gland is unable to produce hormones when ferritin is low.  That may explain way Lynn now has hypothyroidism as well!
What’s the treatment?  Taking iron supplements and eating foods high in iron.  He has been on extra iron since September.  His first lab in September showed his ferritin at 30; in October it was 47, and now it’s back to 31 so he’s not making good progress yet.  We haven’t heard yet if his iron intake will need to be increased even further.
While I’m glad to know what’s wrong with him and relieved that it’s not something like liver failure or cancer, it’s also concerning to not know why this is happening.  He’s on a diet already high in red meat, eggs, greens–all things high in iron; so why is this happening? 
What I can tell you is that it’s exhausting for me.  He gets up in the morning and by the time he has eaten breakfast, he’s done in.  After that, anything he needs to have done, I do. He’s also suffering from being chilled to the bone; one of the side-effects of the condition.  He puts on blankets and we turn up the heat and he’s still cold so he drinks hot tea; and then he is too hot and he drinks a bottle of cold water; and then he’s too cold so he takes more tea; and on and on.  Today, since midnight last night I have catheterized him 17 times!  That’s almost every hour.  The only time it has not been every hour was when he was sleeping. 
Between being called back to cath him every 45-60 minutes, I’m making tea or getting more water for him, handing him things, helping to move his arm that won’t move, and trying to help him get comfortable. I have to admit, I’m lost my patience a few times today because I’ve been called away from what I was doing every few minutes.  But I also know he’s miserable and if he could control his needs, he would. Just one more thing to add to our list of medical challenges.
Did MS have anything to do with this?  Who knows?  A year ago he was in the hospital for not eating or drinking.  Maybe he lost all his stores then and with the other four hospitalizations, it never had a chance to improve.  Plus no one paid any attention to the anemia until this past fall. He was so sick with other things, the focus was on those and not on this so now that the other things are better; it’s ferritin’s turn now.
The blessing is that this is something that can be treated.  The curse is that it takes months to see an improvement.  With all things in life, there is a balance.
I don’t suppose anyone would like a house guest for the next few months???
 If you want more information on ferritin deficiency, I found this website to be informative.   http://www.buzzle.com/articles/ferritin-deficiency-symptoms.html

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Whose life is he living?

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Last night I talked about the fact that I felt that I was not living my own life and that I was lost in the caregiving role.  Tonight I want to explore the other side–his side. 
Lynn sits up at night to sleep so that he will not wake me up to put him on his peddler when his legs get stiff.  He has given up sleeping in a soft bed until he can create a device that will keep his legs moving at night.  Therefore, when he wakes up he decides if he needs to be cathed or if it’s just stiffness that caused him to awaken. I’m sure he looks over at me sleeping comfortably in the bed under my covers and tries to delay waking me as long as possible.  Often when he does, I groan and ask, “are you sure?  I just cathed you at xxx.”  He is dependent on my getting up when he asks so that his bladder can be relieved.  His relief is contingent upon my cooperation and my timeline.
When morning comes, he lies down while I shower and eat breakfast.  Even if he is stiff and needs to move around, he has to wait until I am available to get him up.  His comfort is dependent on what I’m doing and when I can come meet his needs.  If he has an itch or gets cold and needs covers, he can call out for help, but he can’t take care of it himself unless I’m willing to be his hands.
When it’s time to get dressed, I pick out his clothes and dress him.  I often give him the choice of what to wear but putting it on so that it feels comfortable and fits right is up to me.  If the seams aren’t right or something is twisted and I don’t fix it, he has to wear it that way.  Ever worn a twisted garment for very long?  It’s very uncomfortable and annoying, but I can’t feel his discomfort so how do I know?
When he wants to eat, he has to wait for me to fix it.  I season it according to my taste which is nothing like his.  Though I try to match what he likes, I can’t taste through his taste buds so the flavor of his food is through my taste buds.
When he wants entertainment, unless the remote is within reach, he has to watch what is on until I can come change the channel or put in a new CD or DVD. 
If he’s cold or hot, he needs me to change the thermostat or bring/remove blankets to adjust his comfort level.  He’s anemic but I’m often hot, have a fan blowing, or lowering the temperature when he’s got bone-chilling coldness to handle.
I manage his medical appointments, often deciding with the practitioners the course of treatment.  I arrange his living space, take him where he needs to go, or buy what he needs to have–all of which is done according to my taste, my timeline, my skill level.  He cannot use his hands or his legs.  He cannot change his own position.  All his comfort is contingent upon my being able to help, my understanding of what he needs, and my willingness to do it.
As is true with each of us, inside ourselves we are still young, still able-bodied, still filled with the hopes and dreams we have always had only now that he is disabled, he is a prisoner in his own body that will not respond to what his mind still believes it can do.  In order to live his life, he has to live through me. 
So last night I was lamenting about living my life through him but he can lament the same.  We live our lives through each other…but then isn’t that what a married couple does anyway?  What God has joined together….well in our case, we are truly one.

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Whose life is this I'm living?

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Have you ever wondered whose life it is you are living?  Sometimes I wonder if I exist anymore. Some days it seems that I only exist to be Lynn’s assistant.  I do not have a life of my own anymore.  Sometimes I try to have one but when I do, I just become frustrated with trying so I try not to try.  I also wonder who would I be if I was not providing care to Lynn?
When you are a caregiver, your entire life is wrapped around the person for whom you are caring. You decide what time you have to get up in the morning based on what you have to do for your loved one.  Here’s how today went for example.  I wanted to attend a meeting today, in person, at work.  In order to do that I had to make sure I had someone who could come in to stay with Lynn.  I had to plan for what he would need while I was away and I had to calculate how long I would be gone, what else I might be able to fit in while I was away, and what he would need while I was away.  I set my clock to get up two hours before I had to leave. I  got up and put him to bed while I showered (he sits up to sleep at night so he can peddle if he gets stiff).  Putting him to bed takes about 20 minutes.  I showered, blow-dried my hair and put in hot curlers. I didn’t apply make up or put on my clothes because I knew they would get messed up as I performed his morning care.  I got his medicine ready and part of his breakfast and went to get him up.  I got him dressed, and brought him into the kitchen to take his medicine while I ate breakfast, then I took him to the bathroom, catheterized him, redressed him for being up all day, brought him back to the kitchen, fixed his breakfast.  He fed himself while I brushed my teeth and applied makeup.  Meanwhile he kept calling me to help with things he was doing.  I was supposed to leave at 10 and did so finally at 10:15.  Not bad; I’m often later.
Today I was able to sit through the entire meeting without being called away.  I was actually able to assume my “worker” role and learn something new.  I was able to talk about something other than MS and to do something that did not involve caring for Lynn for an entire 1 1/2 hours. It was refreshing.  Then I left to go home.
On my way home, I had to stop at Walmart to get some things we needed, go to Krogers to get his medicine, look for a movie he wanted to watch at Foodlion, and make two other stops.  He called me as I was leaving Walmart to ask when I could get home.  Knowing that meant he needed something as soon as I could get home, I skipped a few planned things and headed home.  When I got home, I resumed caring for him for the next two hours and then put him to bed.  Then I resumed working till he woke up.  It’s always a balance between what he needs, what I need to care for him, preparing to care for him, cleaning up afterwards, and planning ahead.  Whatever a caregiver does, he or she has to consider the impact on the one being cared for.  No decision is made in isolation and whatever you might want to do, those plans are contingent upon the other one’s needs. 
My office party is next Thursday.  I’m hoping to go but I know that I can’t be counted on to be there.  If I can’t find a sitter or if he’s sick, I can’t go.  His needs have to come first; just like caring for a child.  I often feel like a single Mom again because it’s the same now as when I was caring for two young children on my own.  Usually at my age, you’re able to start living your own life again but not so if you’re a caregiver.  Your life is not your own.  Your life is lived though the life of your partner or “care-ee” and that’s hard to adjust to at times. 
I have chosen to give up my life to care for my husband.  It’s what I want to do and it’s what is best for him but it doesn’t mean that there aren’t times that I want to just escape.  I would love a day off –a day that I’m not rushing to get what I need done; a day to just relax and be away but in order to get that someone else has to be here and everyone else has their lives to live as well.  I have to ask for help so often that to ask for just a day off seems rather selfish; I already ask a lot from them. I have a lot of really great family and friends who are here to help on occasion so I’m very fortunate.  But I admit, that sometimes I would like to just get away and be me for a while…whoever that is.

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We can finally drive the van!

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After paying the owner the sales price of the van on Nov. 18, we finally have tags and can drive it as of December 3.  This entire experience has been one of frustration and endurance from the beginning but it’s over now, and we have the freedom provided by a wheelchair van. 
Today, after breakfast, I got Lynn dressed, put him in his powerchair, and he drove himself out the door and into the passenger side of the van.  After figuring out how to use the straps to secure the wheelchair to the floor, we were on our way and for the first time in over two years, Lynn actually went into a store and bought something for himself.  What freedom that is!  I no longer have to be his eyes and ears at the hardware store and won’t have to experience the frustration of figuring out what size nail he needs or what type.  He can actually talk nails to the sales person himself and get what he wants.  No more guessing by me and returning it a few times before I get it right.  Yeah!!!
I have to admit however, that I am still considering filing a formal complaint against the lending company.  It’s not that I want them to be in trouble, it’s that they do not have a process for addressing the needs of the disabled. All I want is for them to create a process that they will follow going forward to quickly be able to determine the value of conversion vans or other special needs equipment.  They really should have that in place and I would like reassurance that they will.  I plan to contact the President or someone there to ask them to create such a process and let me have a copy so that I know this won’t happen to anyone else.  I had rather they do that than report them to the Dept. of Justice for an Americans with Disabilities violation.  (I hope I will follow through with what I want to do and won’t become too distracted and forget.) 
So anyway, we have the van and we now have a comfortable and reliable way to get Lynn to destinations.  We have two doctor’s appointments this week and should be able to make both without any trouble.  The one Friday is the important one–it’s where we’ll hopefully get some blood work done to find out if his anemia is improving or getting worse.  Keep the prayers going that it’s getting better.  He still feels really bad but we had to change his blood pressure medicine too this week so it may be the adjustment to that.  Have you noticed that MS patients don’t adjust to change very well?  Any change in medications or routine just knocks the wind right out of them for days…at least it does to Lynn. 
I hope all is well with you and your family. Thanks for your prayers….they really worked….we have our van and we can drive it.  Amen.

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MS or something else?

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Every time Lynn goes through a spell of feeling bad, I wonder, “Is this MS or something else?”  MS is so sneaky.  It affects so many components of the body and mimics so many other things that it’s not always easy to tell.
Like now.  Something is wrong with Lynn. He associates it with when he got his flu shot at the end of October and it’s true that taking a vaccine often does trigger a reaction in MS patients.  As their body attempts to make antibodies against whatever is being introduced, the autoimmune response is often triggered and the body feels the effects of the war.  But it usually doesn’t last this long….
If you recall,  a few blogs back I mentioned his hemoglobin report came back low.  I have been hoping that the result was a mistake. I’m still hoping that but over the last week, he’s getting more and more fatigued.  By 3-4 p.m. he’s exhausted and feeling really rotten.  The only thing that has been giving him any relief is a hot shower so he’s had a hot shower every night this week. I talked to his doctor today about re-ordering the lab work and maybe adding a few other tests.  She wants him to come in first so she can assess him herself.
I understand her perspective but we still don’t have a title or tags for our van so I can’t take him to the doctor yet.  Yes, I could put him in my car but he’s so difficult to get in and out, I don’t want to do that if I can wait.  So, he has an appointment for next Friday.  I’m hoping the title we’re waiting to get from the former owner’s bank will come in this week and maybe I can get the appointment moved up.  I know Lynn is really feeling bad and that he is also concerned about what’s going on because he’s anxious to go to the doctor too and he NEVER wants to voluntarily go to the doctor.
So we wait to find out what’s next.  The doctor mentioned maybe sending him to a hematologist (blood doctor) for an assessment.  Might as well, we haven’t seen one of those yet.  He has a pulmonologist, a neurologist, a cardiologist, endocrinologist, urologist, physiologists, and dermatologist.  Pretty soon he will have a specialist for every body part.  What his primary care doctor (not an -ologist but an internist) thinks is that something is affecting the production of red blood cells in his bone marrow.  That’s rather worrisome for me because having a medical background myself, I think first of cancer.  Sure hope there’s no chemotherapy on the horizon.  His PCP thinks maybe it’s one of his medications causing a problem so if she repeats the lab work and there is still no improvement in the hemoglobin, I guess we try that next.  Let’s hope it will be a simple fix.
So what do we hope for?  If it’s MS pain and discomfort, chances are there is no treatment.  If it’s anemia due to bone marrow being impacted by something, then maybe there is a treatment.  Hopefully he just needs iron shots or something.  So if you’re the praying kind, pray we get that title in tomorrow so I can get tags on the van and be able to take him to the doctor to find out what’s going on.  Until we can get there, we are in a holding pattern and that’s pretty stressful.  Then pray the new lab work will reveal that nothing is wrong and that maybe there is something he can take to feel better. 
Thanks.  We appreciate the prayers and support.

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Who Has It Worse?

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When I run into coworkers, friends, family, people from church, etc., I can see in their eyes that they feel sorry for me.  Many say, “I don’t know how you do it, day in and day out. I don’t think I could.”
I don’t feel comfortable when someone tells me that.  I don’t feel like I need anyone’s pity or that we are a tragic couple.  I know that our lives are really quite good.  We get along very well.  We have wonderful family members both close by and far away who constantly support us and give us encouragement.  We have a church family that really walks the talk that Jesus proclaimed while he walked the earth.  I work for a compassionate supervisor in a job that is challenging and rewarding.  I have the best employees working for me that anyone could ever ask for. I love where I work and what I do.  We have enough–enough money to pay our bills, more than enough stuff as evidenced by the fact I can’t find enough places to put it all, and more than enough food as is obvious by our waistlines.  We have good lives.
Yes, our lives are hard at times.  Lynn rarely feels good. He is often uncomfortable.  He is needy at times, stubborn at others, often funny, and sometimes angry.  I almost never get to “sleep in,” or sit down to read a book or watch TV.  I never go out on my own to shop or visit or do anything that is not essential.  I watch every penny we have and the money going out is often more than the money coming in but not always… so it evens out. 
Lynn has a lot of physical challenges.  He has basically no use of his legs or right arm and his left arm fatigues by the end of the day.  Many of his bodily functions do not work well on their own and need some help along the way like urinary catheterization or a bowel routine.  It takes a lot of strength and energy to move him around and by the end of the day.  I’m often tired and sore but a good night’s rest and I’m fine to get back at it again the next day.
When people look at me with that sadness in their eyes and say they couldn’t do it, what they don’t understand is that we didn’t get where we are now overnight.  It was a progression of decline.  By stages his abilities got less and at each stage we learned to adapt.  When it’s gradual you have time to adjust and seek ways to make it better and …. find a new normal.  The people who wake up and suddenly can’t walk, or see, or hear; they are the ones who have it worse.  MS can do that to you.  One day you are fine and the next day you can’t see anymore. How scary is that?  You don’t have time to adjust, you just ARE.  Everyone is scared but trying to support the one who is now blind or deaf, or immobile.  No one has time to really adjust….  Suddenly your lives change and you’re thrust into a new reality.  Now that’s hard.
You know what else is hard?  When you’re caring for someone whose memory is fading.  Lynn occasionally has some cognition issues.  It’s usually just when he’s very tired or feels really lousy, but when he has asked me the same question three times in 3o minutes, it gets annoying.  I can’t imagine dealing with that over and over and over again and knowing that it’s going to be like that every day all day.  With Lynn, I settle him in one place and he has to stay there because he’s immobile.  I really feel for those whose loved one is mobile but not thinking clearly.  I would be afraid all the time that they would leave the house or start a fire or turn against me because they didn’t know who I was.  That’s got to be so much worse than dealing with someone who is physically challenged.  …..  or maybe not.
What I do know is this–whatever is your challenge…whether physical, mental, spiritual, emotional, or whatever it is; it’s your challenge and that makes it difficult and becomes your struggle and whatever that struggle is, it’s hard for you.  Yes, you can always find someone worse off than you are but in their shoes, they may look at you and think the same.  Everyone’s pain is real.  Everyone’s challenge is theirs and it’s just as difficult as the next person’s. 
So who has it worse?  We all do; each in our own way and each with our own struggles.  That’s why we need each other and God to help us carry on from one morning to another to another to another….
Ps.  Feel free if you every need to share to drop me a line if you don’t want to do a public comment.  Sometimes it helps just to share.
 
 

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Thanksgiving

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This image shows a Intensive Care Unit.

Last year on this date, Lynn was in the intensive care unit of the Medical College of Virginia Hospitals (MCV). 
By today’s date, he had been in the hospital since November 6 and would remain in the hospital another two weeks. During that time I stayed with him 24-hours a day.  I slept in a reclining chair at his side and was up every few hours helping to make him comfortable.  He does not remember much of that time and what he does remember is clouded by the hallucinations he was having so at times he cannot be sure what was real and what was not; but I remember every bit of it.
I remember having my step-son stay with him while I went to work to teach a class 1/2 day on Nov. 5 and coming back to find he had not eaten anything all day and had drunk very little.  I remember being up with him most of that night and deciding at 4 a.m. that he needed to go to the hospital because he was feeling so bad, calling my son-in-law to help me get him into the car, and then driving the hour to the hospital.  I remember the kindness of staff who brought me coffee and a snack during the day; the visit by my daughter to bring me lunch and then her return to find out what I would need from home when the decision was  made to admit him.  He had stopped eating or drinking due to a urinary track infection that he could not get rid of due to a mistake in reading the urine culture and the wrong antibiotic being prescribed. 
He had become so debilitated that he just could not bring himself to eat so they put in a nasogastric tube to feed him thinking it might be an MS exacerbation.  During a tube feeding, he coughed violently and coughed up the tube causing some of the feeding to go into his lung.  As the week progressed, he began to sleep more and more.  The day before he was to be discharged, he slept all day and could barely be awakened.  His temperature would not register and his blood pressure was dropping.  It was discovered that his temperature had dropped to 95 degrees rectally; just barely at the level to sustain life.  He was sent to the ICU for the first time and put on a heating blanket for hours.  Pneumonia was discovered and he started “third spacing;”  (that means all his body fluids were seeping into the skin and out of his blood vessels.)  He looked like the Phlysberry dough boy.  They took 1000 cc off his lung and the diuretics took out about 3000 cc in fluid through his kidneys.  He was very sick. 
During this admission he was in the ICU three separate times before going home.  I wasn’t entirely sure he would make it home, but he did.  Thinking back to those days, I’m so thankful for all those people at the hospital who brought me food, stayed with him while I went to get a meal away from the room, found me a place to shower, brought me clean clothes and supplies, checked on me to see what I needed, took care of things for me at home, and prayed for us every day.  I could not have made it through that time without them.
I am also thankful for the friendships I made with the nursing and medical staff; the excellent care he received, and the diligence of the health care professionals in determining what he needed to get better. I am very grateful to my church especially who came to my house and decorated it for me for Christmas so we would come home to Christmas at our home without the work involved. We were and are so blessed.
That was Lynn’s first admission last year, ever.  He had two more during the year; each time he was in the ICU for part of the time.  Once he almost went on a ventilator which they felt he might not come off again.  We were so fortunate to have the best healthcare workers anywhere caring for him and pulling him through and many, many people praying for us.
This week is Thanksgiving and we have much to be thankful for.  It has been a very challenging and rewarding year.  It’s been full of fear, faith, hope, and joy and much more.  I hope the coming year won’t be a repeat but I know that if it is, I’m not alone and for that I’m truly blessed.
Have a safe and healthy Thanksgiving.
Donna

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We Have Our Van!

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Finally after two long weeks of going back and forth and back and forth with the loan  agent, we got approved for the full van loan. As the person who sold us the van said, “I’ve bought houses in less time than it’s taking to get this loan approved!”  If the seller and I had not continuously pushed things to move along and offered assistance, I might still be waiting on the van. I finally called a dealer and pleaded that they send the retail value for a conversion kit to the loan officer and it finally went through.  Then they even agreed that the van value was more than what was being asked!  Go figure.
I can’t say enough nice things about the seller though.  What an angel.  He was so incredibly patient and helpful throughout this entire process.  I feel like I made a new friend.  He was such a man of integrity and honor.  It seems rare to find someone like that when you’re buying something as expensive as a car.  We were truly blessed and once again, we see God’s hand in making our prayers come true.
We got the van Thursday night.  I walked around being oriented to it by the seller in the dark with a flashlight.  Would you believe I had never driven it in all this time? In fact, all I have done so far is move it around the yard. I have insurance on it but still need to go to DMV tomorrow to get the title and tags straight. I can’t wait till I can open the door and just have Lynn drive inside.  How exciting that’s going to be!
When you can’t travel safely either due to your vehicle or due to being able to get in/out of your vehicle, your world becomes very small.  Currently the only time Lynn leaves the house was to go to the doctor.  I’m hoping now he will also be able to return to church.  He won’t be able to use his power wheelchair there because the elevator to the sanctuary is too small for it but when he’s feeling well, I may be able to transfer him to a transport chair so he can once again attend.  That would be awesome.
We were also blessed today with the delivery of the patient lift we ordered.  It is so much easier to use the hoyer lift we had.  The rep from Adaptive Solutions in Lynchburg brought it to our house today, assembled it and showed us how to use it.  He was very nice and you could tell he really wanted to provide helpful solutions to his customers.  He was full of information about resources and things to check out that might be helpful.  The Maximove he brought us is so easy to manuever and I can even put the sling on Lynn while he’s in his wheelchair and remove it without any help.  I don’t know why insurance companies can’t see that to have a safe way to move patients around is so much smarter!
We have had a very busy day today.  First Lynn’s physical therapist was here. I ran to the grocery store while they were busy.  Immediately after I got back, the Adaptive Solutions rep was here.  Then the home health company came and picked up the other lift.  Meanwhile a rep for the Hayek ventilator came by to see how that was going, Lynn’s son came to exercise him, and finally our chiropractor came to adjust us both!  Whew, I’m tired just thinking of it all.  I was going to go to DMV after the chiropractor left but Lynn was just too tired for me to leave him home alone long enough to go.  I’ll go in the morning when he’s fresher.  By the way, between all these visits and then immediately afterward till about 10 pm tonight, I worked my regular job. Busy life….
So…we close this week with many blessings and much thanksgiving over God meeting our needs and carrying us through the tough times.  Once again we managed to adapt to life’s curve balls and hit a home run.  We are truly a blessed couple…

We Have Our Van! Read More »

The world still doesn't understand disabilities

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Would you believe I still don’t have the loan settled for our van?  I know God will provide and this van will be ours but it has been so very frustrating dealing with the loan company this week.  Here’s the issue:
The seller is asking about $7000 more than the blue book value for a 2005 Uplander.  The loan company’s policy is that they will not loan more than 125% of the blue book value.  Can you figure out why there’s a difference in price?  Of course!  It’s a wheelchair converted van! Duh!  It’s not a regular van that is equivalent to the basic 2005 Uplander blue book value.  It’s a van that has had $20,000+ of work done to it so that someone in a wheelchair can use it. Therefore, an additional $7000 is extremely reasonable as an additional cost above the blue book value.  However, the fact that this is a specialized van does not seem to figure into the equation.  The loan officer is very sympathetic.  She was once a nurse and understands the need for the van and the fact that they are very expensive but rules are rules–there has to be a way to determine a “reasonable” value for the van and that’s the blue book value.  I’ve suggested that she contact companies that actually do conversion van work so hopefully she will but today was Veteran’s Day and they were closed so I’m not sure what is going on with the loan.  It’s just so frustrating that rules get in the way that do not take into consideration the needs of the disabled.
If dealing with the loan company was not enough this week, I’m also struggling with the insurance company regarding a patient lift I want to buy. When Lynn was in the hospital, I learned to use a device called a Maximove.  It was so easy to manage.  It has electronic controls and allows you to be at the patient’s side as you adjust him from lying to sitting and then slowly adjust his position as he’s placed into a chair or location.  It’s easy to use, very stable, and much safer than the hydrolytic lifts the insurance companies want you to use.  Hydrolytic, manual lifts require that you stand near the pump and/or release value as you use the

patientlyft i aluminium
Image via Wikipedia

device.  Although that’s not that far from the patient, it doesn’t allow you to be right there with them.  It’s also difficult to get the patient adjusted because you can’t change their position while they are in the sling.  I’ve tried the one we have now that has been approved and I never can get Lynn comfortably settled into his wheelchair. Usually he ends up on his spine or twisted. It looks like the insurance company would realize that if it’s not as easy and as safe to use, the caregiver is not going to use it and eventually the wear and tear on their body will cause the insurance company to have two people submitting claims instead of one.  Go figure…
I wonder if the people making the rules for insurance and loans would implement as many barriers to caregivers if they became one themselves.  Maybe it would help if they “walked a mile in my shoes.”

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Answer to Prayer

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I have often mentioned in my posts that God takes care of us and that our church is an ongoing support group for us.  I want to share with you how I know prayers are answered.

 If you follow my blog you know that several weeks ago I wrote a blog about how much I needed a conversion van.  Lifting Lynn in and out of our Impala is extremely difficult and there have been many times that I only managed to move him safely with God’s help through prayer.  I had received a lot of encouragement to look into purchasing a van.  As you know, there are really no resources for getting a handicap accessible vehicle.  There are some scholarships or discounts but the cost of converting a van is very expensive. Therefore, those discounts only go so far in helping. 

We knew we could not afford a new vehicle that we converted ourselves. The cost of a new car plus the $15-$25,000 just to adapt it was too much.  Therefore, we went to our church to ask if anyone in the congregation knew of anyone who was selling one.  We wanted someone reliable that someone we trusted also trusted.

 

Someone did.  Someone I didn’t even know personally from our congretation who had read my email request but she took the time to make contact and let us know about her neighbor.  The van was listed on Craig’s List and it was very reasonably priced for a conversion van.  It was also in very good condition.  The owner has been so accommodating, bringing us the car to check out, getting it inspected and brakes changed, keeping us informed and answering every question we had.  I feel very comfortable with him and the vehicle.  If anything goes wrong with it after we buy it, I feel certain he would not have known it was a possibility.

 

After I sent out the request for help, I just knew in my heart God would send us something… and he did, in only about a week.  By this time next week, we should have a vehicle that I can take Lynn out in without the trauma to me or him.

 

I feel very blessed today and very hopeful.  I often write about the challenges in our lives but I wanted to share a triumph this time.  This was truly an answer to prayer.

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Lord, please…

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Over the past week, my concern has grown.  I walk into the room and see him sitting there.  His eyes are shaded in pain–not severe pain–more of an aching discomfort due to the broken skin on his coccyx. We’ve tried several types of patches to protect the area but one of them slide and broke the skin.  Then it happened again and more skin was torn.  Now he has an area that’s draining and sore on a place he has to sit all the time.  He can’t be comfortable in bed.  He has to sit up and peddle to relieve the stiffness.  He tries to lie in bed but he just can’t tolerate that for very long. Please don’t let this be the beginning of a difficult to heal bedsore (or in this case, seat sore).
Then there is that look of illness.  He feels miserable–you can see it in his eyes.  He tries to crack a joke but the sparkle doesn’t reach his eyes.  In fact his eyes look sunken and blood-shot.  Blood-shot from the terrible sinus congestion he has which makes it hard to breathe all the time. He has chronic sinusitis and uses 1/3 strength nose spray all the time to combat it but he has to have it at least ever hour.  Imagine how stuffy you feel with a cold and then imagine being like that most of the time.  It’s so miserable. Lord God, help him to breathe easier.
But that’s not what’s behind the look. He feels soooo bad. For months he was on a detox of sorts to try to heal “leaky gut syndrome” and we attributed his feeling bad to that.  Well he’s off the detox now.  Could this “bad” feeling be his reaction to taking the flu shot last week?  If so, why is it taking so long to get better?  Or is this just MS again, rearing its ugly head and making his life miserable?  Where is his quality of life if this is what he has to look forward to?  He tries so hard.  He eats well, exercises, tries to keep a positive outlook and stay active, but it’s so hard to remain hopeful like this.  He’s sick and tired of being sick and tired.  Lord, please show him mercy.
Then there’s the lab work.  I called to check on some lab work he had done two weeks ago.  His hemoglobin was 10.3.  In September it was 12.3!  Why did it drop?  I am hoping that the person who read it to me read an old report.  I’ve sent an email to his PCP to check the lab work since she didn’t order it so we can find out.  If it’s accurate, and I don’t think it is, then something else is really wrong.  I was convinced yesterday it was a mistake but the more I think of it, the more I realize he’s feeling worse and more tired.  His leg is spasming again too and it had stopped, or just about had, when his hemoglobin was up.  Lord, please don’t let that lab result be right because that means another specialist.  He has enough doctors.
He entered the hospital for the first time in his life a year ago this Sunday. During that admission, he was in and out of the ICU four times before he went home.  He’s been too sick the last two years to participate in Christmas and our goal is that he will be able to enjoy Christimas this year AND he will be able to remember it.  Please, Lord, let that come true. 
MS is a strange condition.  I know people whom you would never suspect have MS.  And then I know some like Lynn who seem to have all the symptoms.  I don’t know why it affects some worse than others but I do know it’s disappointing that so little research is being done to look at why it progresses faster in some than others.  I also am angry that there is no treatment for the progressive stages.  It’s like once that point is reached, they are written off.  At least that’s how it seems to me.
He’s calling me again to get him up.  He was able to stay in bed this time about 50 minutes.  I expect he will be up all night now.  Pray he feels better tomorrow.

Lord, please… Read More »

Adjusting to being less than the best

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I received my annual performance review today.  I had mentally prepared myself for getting a rating less than what I usually get and was even afraid it might be significantly less but I was pleased…and disappointed…and sad…and concerned. 
Not to brag but I’m very good at my job.  Several years ago I was nominated and received the Employee of the Year award.  We had about 7000 employees then so that was a real honor.  Every year for at least the last ten, if not longer, I’ve gotten an exceptional overall rating.  This year I didn’t.  It was still good, better than just proficient, and even still had some exceptional ratings listed, but it was sad to see my performance decline in writing.
Don’t get me wrong.  I’m not complaining at all about the rating.  It was very fair and probably more than a little generous.  I hold a significant position where I work.  I have a lot of influence and a lot of people come to me for advise…or at least I had and they did.  Now I work remotely every day.  Though I try to keep involved and keep up with everything, the truth is my staff have had to cover meetings for me and are now contacted more often than I am.  People who know me want to spare me anymore stress so they go to someone else.  That’s very kind of them but I’m still working and if no one needs me anymore, I’ll become a liability instead of an asset. I can’t let that happen because I have to work and I have to keep the salary I have now. One of my greatest fears is “out of sight; out of mind,” and my other is “I need you to come back to work at your office.”
I wouldn’t mind being back at work.  I love my job.  It’s very demanding but I find it very rewarding. I really like working to find solutions and knowing what’s going on. I find that working from home, I’m losing that.  I don’t feel connected and there is so much that I am not told about that I would find out in hallway discussions. I see this lower rating as the recognition that I’m not needed as much anymore. I expect that if I continue to work from home, they will find a way to move me out of my job into something else….something not as essential…and something that would be unique and therefore, something to cut if times got tough.  Less job security on the horizon.
So what can I do about it?  Go back to work in my office.  But what if I do that; what does that mean?  It means less sleep since I would have to get up early to get Lynn ready for whomever what going to care for him while I was away.  I’m sure I would not be getting to bed any earlier.  It would mean greater difficulty getting everything done at work that I needed and everything done at home.  Lynn would be very unhappy because no one would pamper him like I do or at least that’s what I suspect because he’s very needy and very particular about how things are done. He doesn’t want anyone here that he would have to entertain as a guest and he doesn’t want anyone he knows well to have to do any of the personal things for him that are needed.  If I had a “sitter” then I would have to put in an indwelling urinary catheter while I was away every day.  I had to do that two days in a row a few weeks ago and he got a urinary track infection from the irritation. So would his condition deteriorate?  If I wasn’t here to straight cath him, to put him to bed when he’s tired, to make sure he gets what he needs to eat and drink, to monitor his medications and to take care of his skin, how long would he last?
So what do I give up?  I give up the exceptional rating on my evaluation, the recognition for a job well done, the interactions with others, the rewards of helping others, the job security, and the challenges of learning new things.  I give up a lot and it hurts but I signed up for better or for worse.  I made a commitment to God and Lynn that I don’t take lightly.  I want to give Lynn the best I have to offer and I want to make his life better than it would be if I wasn’t here to care for him.  So I give up being exceptional at work and I focus on being exceptional at home and hope that somehow it will all balance out. 
For now, it’s the right thing to do…but I admit that I’m just a little sad.

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Disappointments and Guilt

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This week has had several disappointments.  On Thursday and Friday, I was scheduled to take a course in Critical Incident Stress Management for my job.  I was really looking forward to it not only for the new information and skills but also for the opportunity to be back with coworkers and others for the day.  I got up at 5 a.m. and got Lynn and myself ready for the day.  I had a friend coming to stay with him from 9-2:30.  All was going well at first and then his stomach started grumbling.  Not a good sign.  I went on to the class with the hope that it would settle down.  At 3:40, I got a call to come home.  That was the end of my two-day training program.  Friday, I could not go in at all.  Disappointing but a necessity.  At least I got the training manual.
Saturday, my nephew was getting married in Northern Virginia. For me, that’s a 2 1/2 hour drive at minimum.  My daughter was supposed to go with me but she has not been feeling well all week so it was decided that instead she and her husband would stay with Lynn till his son could come help out when he got off work.  As you recall from above, Friday was not a good day for Lynn.  Since he had stayed up from 5:00 a.m. till I got home around 4:30 on Thursday, he had over-extended and in addition to the upset stomach, was exhausted on Friday.  My ride for the wedding (I didn’t want to drive alone that far due to sleep deprivation‘s impact on my alertness..i.e.  I get sleepy when I drive) called to make final arrangements and it was then that I realized just how long I would have to be gone.  They were going to pick me up at 10:00 a.m. and I would probably not get back till midnight.  The truth hit me then like a ton a bricks…I couldn’t go.  I would be gone much longer than Thursday.  Lynn’s stomach was still not totally straight.  I didn’t think my daughter and her husband could get him into bed and his son could not come by till around 6:00 pm. That would be too long without a nap. I couldn’t go.
I was very disappointed and I felt guilty.  My brother and his wife had bought me a suit as a gift so I could have something new to wear to the wedding; I had my parents cancel their reservation for Saturday night for accommodations since they were driving back with me after the reception so now they had no place to stay; and I’m big on family participation and here I was missing a major family event. On the other hand, Lynn is my responsibility.  I have to make sure his needs are met because if they aren’t a set back could occur which could mean loss of the progress he has made or worse yet, another hospitalization.  I couldn’t take that risk.  If I hadn’t already had issues on Thursday, maybe it would have worked out, but now, it was just too risky.
I cried a bit, started calling to find my parents another hotel to stay in since the one they were in on Friday was booked for Saturday.  I called my brothers to let one know I would not be riding with him and the other know that I had made reservations at another hotel for our parents because I could not come now.  (he had already heard about the problem and had made reservations for them himself so I canceled mine.)  The new hotel was right beside the one the rest of the family was staying in so it all worked out good. I called and canceled my daughter’s help and let Lynn’s son know he wasn’t needed and could now attend the party he had needed to cancel participation in so he could stay with his Dad.  It all worked out but it was disappointing none-the-less to give up a special family time.  I’ll live it though pictures and stories but it would have been nice to see it for real.
Guilt again on Saturday night when I got a call from my niece that my mother was on the way to the emergency room due to a fall.  She had hit her back hard when she fell and was having trouble moving.  My first thought was that I should have been there to make sure she was okay.  I called my brother who was following her to the hospital to say what needed to be considered if she was discharged so she could travel back today and what to do if she was admitted.  I have contacts at the hospital where I work that could help me get her transferred back to Richmond if she needed to be in the hospital so we could help out and Dad would have a place to stay. Fortunately that wasn’t needed.  She had no broken bones and was released with pain meds and muscle relaxants.  She and Dad will be coming here shortly and will stay with us tonight and longer if needed for her recovery.
So anyway, all worked out but I share this to say that as a caregiver, your life is not your own and making plans is only a tentative thing…you can never really plan.  Anything can get in the way and throw a major kink into the works.  But it usually works out.  I got to sleep in yesterday so I was more rested.  I always have about three hours of work to do for my job on the weekends so I got that done yesterday and will be able to visit without guilt when my parents and brothers get here shortly…and Lynn is feeling better.  He was able to get the rest he needed. His stomach has settled down, and he’s not feeling so exhausted.  So it’s all good.  It’s just a different good than what I had been planning, but still good.

Disappointments and Guilt Read More »

Happy Anniversary

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Donna and Lynn October 11, 1997

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

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What a day!

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I have had a terrible day, and it’s all due to having to get a new modem to my computer.  I truly believe computers can either be your best friend or your worst nightmare, and since about Wednesday; I’ve had it up to my eyeballs in frustration with them.

First, on Tuesday, I lost the internet.  I HAVE to have the internet because that’s how I connect to work.  I called tech support and spent over an hour, trying to figure out what was wrong.  They decided it was my modem and said they would have to send me one.  I was really upset.  If I can’t work from home, I have to go to work.  Who was going to stay with Lynn if I went in?  If I didn’t go in, I had to take a vacation day.  Who wants to take a vacation because their internet is down? 

I was on the verge of tears.  Lynn insisted he would be fine and I had to leave him home alone.  I didn’t want to but what other choice did I have?  I started getting him ready, getting the items he would need within reach, tidied myself up to go in (I don’t exactly dress professionally at home), and got ready to leave.  Fortunately, before I got to the main highway, Lynn called to say the internet was back up.  I was so relieved! I turned around and came home (so much for the tech support diagnosis).

Late Wednesday the modem came in by UPS.  Supposedly it’s faster than what I had so this morning I hooked it up.  I’ve been working on the x!@#$%^ thing all day!  First getting my computer set up took well over an hour because the activation process wasn’t working for me. I finally got that settled.  I then had internet, but Lynn’s computer didn’t.  Tonight I spent 2 hours on the phone with a guy from India (who was incredibly nice), but Lynn’s computer still doesn’t have an internet connection.  It’s connected to my modem, but the internet won’t come up. What’s with that?  I finally had to get off the phone. I have now hooked up a laptop for him to use, but it’s got such a small keyboard and monitor I don’t know that he can use it at all.

I share all this because of the effect it had on us.  I was so frustrated all day–torn between wanting to help him (so he could work on his book marketing and play music from YouTube), and I need to work or do things around the house.  He knew how upset I was, and that directly made him feel like a burden.  He had had a good day today.  He was able to do things in physical therapy and later, when he was exercising that he hasn’t been able to do in a while.  He was so excited, and all I could do was focus on the !@#$%^ computer.  My behavior stole his joy.  He was feeling so bad about being a burden to me that he was nearly in tears this afternoon. Then he recognized it was just Satan trying to steal his joy and undermine his progress so he would give up. Which also showed me that Satan was doing the same thing to me, so instead of seeing Lynn’s growth, I would focus on the difficulties.  What a shame. 

I wish I could say I’ve learned my lesson, but I know myself too well.  I can easily get overwhelmed and start to feel sorry for myself, and then I take it out on Lynn, letting him know how frustrated I am that he cannot do more and accusing him of not trying hard enough. He truly tries but with fatigue and spasms, and just plain ole MS complications, he can only do so much.

Lord, please forgive me of my attitude and self-pity and help me to appreciate the improvements and the successes.  And Lord, please give me an extra measure of peace in my spirit so that the frustrations of trying to work on his computer tomorrow won’t result in the same thing.  Amen.

What a day! Read More »

My back hurts…

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Caregivers are at great risk for back injuries due to not using proper body mechanics in moving family members correctly.

Actually, it’s my side.  I tried a patient lift, but it didn’t work with Lynn’s wheelchair.  I know the one that I would like to get–it’s a modified version of what we used in the hospital–but it’s over $3000 because it’s not provided by our insurance company.  So I lift Lynn myself.  He now weighs 215 lbs.  That’s a lot to lift.  I’m no small person either. I weigh about 180 lbs, which is probably part of the problem.  If I were in shape and lost about 50 lbs., I would have more energy and more flexibility, however; as my doctor explained, losing weight is difficult when you’re under a lot of stress.  My body thinks it needs to store fat so that I’ll have the necessary energy to fight off what’s causing the stress.

I also admit I have no will power right now.  To think about counting calories or watching portions is just more than I can face.  I eat to keep up the energy, and I grab what’s easy.  I try to keep sweets out of the house, but I snack on nuts and bars and whatever I can find that I can eat while I work. I’ve looked at weight loss ads, but I’m afraid of that plus I have a lot of sensitivities to foods of it’s just too much to think about right now.

I know I also need to exercise.  I sometimes get in a few  minutes of stretching to help my muscle spasms but to even carve out 30 minutes means either reducing sleep time or work time and if I reduce work time, I have to take vacation time and I need to store that up in case he gets sick and goes into the hospital again. What a roller coaster!

I worry though about these spasms I’m having so often from lifting.  I know one day I’ll probably pull something that won’t go back and then what will we do?  I’ll have no one to take care of either of us. Then what?  I have long-term care insurance to cover me, but Lynn already had MS when I had the opportunity to get it, so he wasn’t qualified.  Just one more thing to leave in God’s hands because I can’t worry about it right now.

For now, it’s 11:00 p.m.  I finished working at 10:30 and put a pre-made meal from a friend in the oven for dinner.  Thank the good Lord (and Amelia) for those meals.  I don’t know what I would do without them.  I’ve had some Advil and Lynn’s in his powerchair attached to his peddler for the night. Think I’ll go have something to eat…

My back hurts… Read More »

Helping with Lynn’s Career

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As I mentioned in the page called, “Lynn’s story,” he soon became unable to work in his chosen profession as a carpenter after he was diagnosed with MS.  He was in his 40’s at the time and wanted very much to continue to work.  However, his physical limitations and his fatigue made working in a physically demanding job impossible. So he looked for other options and discovered he had a talent for writing.

Rising Tide available from internet bookstores

Lynn has written three books and is on his fourth.  Only one has been published so far, Rising Tide.  His publisher did a great job of supporting him during the editing and publication process; however, they do not do a great deal of marketing the book after it is released. They sent out the initial press release and then sent him information about how to market the book himself through book signings and giving talks.  They pretty much leave it up to the author to promote himself.
That’s fine if you can travel across the country or have the energy to do talks and book signings but it’s very difficult for Lynn to do that now. Since we do not have a way to transport his powerchair, he has to use a manual wheelchair for trips.  It’s not very comfortable for him after about an hour, especially since he cannot adjust his position himself. Then there’s the difficulty actually signing a book.  He puts his signature in the forward but truthfully, it’s a scribble.  Also, he has to be catheterized intermittently.  He can’t do that himself which poses a problem in a public area.  Do I take him into the ladies’ room or do I go into the men’s room?  Most public places do not have a one-room restroom where we can  into it together.
So… instead of going “on the road” he’s marketing to book clubs around the country by email.  I’m very proud of him.  I’ve written a draft that he can copy and paste and he searches out book clubs and sends them information about his book himself.  He offers to send them a free copy to consider for their club to read.  It’s a very slow process.  He’s sent out over 200 offers and so far we have mailed out 10 books.  Most don’t respond but if he keeps at it, he will eventually get his book out into the book reading community and, who knows, maybe that will generate book sales.
What I do know though is that it gives him purpose each day. He has a job to go to now.  He can only tolerate doing so much each day, but it gives him something to look forward to when he gets responses and it gives him work to do.
On the other hand, it also gives me work to do….I type the drafts, I record where he sends letters on a spreadsheet, I mail out the books, respond to any emails he gets, help type in information if needed… Whatever he does, I have to be part of it for him to be able to do it.  Many people who do not have experience with being a caregiver, do not realize that there is no part of that person’s life, hobbies, interest, care that you do not take part in.  And while I want very much for his writing to be successful, at times, it just becomes one more job for me to do.
I’m keeping my fingers crossed though on this marketing campaign.  If he could become known and his books provide him some income, I might just be able to get that van I want.  : )    Want to buy a book?
Seriously though, check it out if you’re interested.  Go to his website for more details www.lynnsteigleder.com   It’s a good read.

Helping with Lynn’s Career Read More »

Please participate in this survey related to Caregiver Needs

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I received this email request from the Southeastern Institute of Research asking me to post a link to a survey they are conducting along with the National MS Society  and the National Alliance for Caregiving related to the needs of caregivers.  The study is investigating issues related to caring for someone with MS and the needs of family and friend caregivers.  
The survey takes approximately 20 minutes to complete and is completely anonymous and confidential. No one will ever ask for your name or contact information.  Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the MS Society so that they can learn how to better meet the needs of those caring for people with MS.
 I hope you will consider participating.  The survey closed on  Friday, October 21. For the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.
 Here is the link for you to copy and paste or you can click on it at the right. 
www.sirresearch.com/MScaregiver
 I’ve taken the survey and it asks very relevant questions.  I encourage each of you to take the time to participate.

Please participate in this survey related to Caregiver Needs Read More »

Shower Day

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Bathroom fixtures for mobility impairments.

For most people, a shower is just a routine part of their day.  It takes no more preparation than making sure you have shampoo and soap and clothes to put on afterward.  Not so, if the person who needs a shower is in a wheelchair and cannot help themselves.

When I first started bathing Lynn, I had a shower seat I put in the tube.  I lifted him onto the bench, shifted his legs over the edge of the container, and used a hand-held spray for bathing him.  Reaching over the side of the tub was difficult, and we were both soaked by the end of the bath.   My back also was usually aching by then too. We choose this method because it was the only room I could get a wheelchair into since bathroom doors are more narrow than other entries.  (why is that by the way?)

Then our church got us a shower into which we could roll a wheelchair.  That was wonderful.  I lifted him from the transport wheelchair onto the shower seat.  It allowed me to be in the shower with him and not get wet but have plenty of room to bathe him.  The only issue was lifting him back into the wheelchair while he was soaked.  Lifting him while soaked didn’t feel very safe, and a few times, I wasn’t sure I would make it from the shower seat to getting him back safely into the wheelchair due to slippery surfaces.

Then we hit upon the perfect answer…a shower wheelchair!  Now we have the best of both worlds.  I can roll him into the shower, stay relatively dry while I bathe him and I don’t have to lift him while he’s wet.

But still, shower day is a big job.  It takes a lot of preparation time to get everything ready, then time for the bathing and drying and dressing.  I always wait until after I bathe him to take my bath because I get pretty sweaty from working in the hot shower, but this is SO much better than what we had before.

One word of caution, though.  Today I was going to save time by coloring my hair while I also bathed him.  I put the color on and put a shower cap over it.  You’re only supposed to have the color on for about 30 minutes.  We had some unexpected events with the shower today, and an hour later, I still had not washed out the color!  Nothing happened. I still have my hair, and the color’s okay so no big deal but trying to combine the two might not be such a good idea in case you’re ever considering doing the same thing!

Shower Day Read More »

I have the blues today

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I don’t know why.  But I’m feeling blue. Maybe the atmospheric pressure is playing a role since we are waiting for  the hurricane to roll in tomorrow night.  I think it’s primarily due to lack of sleep and trying to get away today.

I worked till 10 last night and then Lynn wanted to lie down for a nap.  I put him to bed and had so much I needed to do that I let him sleep from 10:30 till 12:30.  I know that was a mistake and I knew it when I was doing it but I needed some uninterrupted time to finish what I was working on.  (Plus we spilled some urine on his seat cushion and I wanted to get his favorite socks, leg warmers and the seat cushion clean for him before he got up)….so I let him sleep.

Of course he didn’t feel like eating right away when he woke up so I worked on downloading my contact list on my phone so I could transfer the information to my new phone. As usual I ordered what I needed over the internet so I was reading instructions so I could “do it myself.” I got him feed and into bed by 2:45 a.m.   I set my alarm for 9:00 a.m. because I was supposed to have a conference call regarding an issue at work.  At 4:00 a.m. he needed to be cathed.  I got up and did my thing, (while he slept) and was just about to settle back into bed when he decided he was too stiff to sleep and wanted to get up–so I got him up and got to bed around 5:00 a.m. He peddled till 7:00 a.m. and wanted to come to bed.  I was so tired.  I pulled up my work email and a message that I needed to reschedule the 9 a.m. meeting.  I went back to bed.  He got up at 9:00 a.m .  I went back to bed after getting him dressed and settled and fell right back to sleep.  My alarm went off again at 11.

I had a 2:00 doctor’s appointment for myself.  It was for a physical but also to talk about my painful hands and hip joints and the fact that my feet are numb all the time now. I showered, got breakfast, got Lynn dressed, got his meds ready, we ate, I took him to the bathroom, checked my emails, got my stuff for the appointment, put a foley in him for the day since his son was going to stay with him, got a message his son was going to be late but to go ahead and go….In the middle of this, I had several “special” requests, help with his email, help with the window AC, measure something for the device he wants to have built to help him keep his legs moving while in bed.  Each interruption just caused me to become more tense.  I finally, in frustration, told him he couldn’t ask me for one more thing, I was going to be late. He then said, “that’s why I asked you if getting up at 11 would give you enough time.”  To which I responded, “but you also told me you didn’t want me to go if I was going to fall asleep driving so I was trying to get at least 6 1/2 or seven hours when all the naps were totaled.”  He agreed that was more important.  I finally ran out of the house to go to my appointment.

I made it right at 2. I have a 45 minute drive.  I got so sleepy driving and was so tired.  I listened to a book as I drove which helped but I was really more like a zombie.  I read while I waited for my appt.. and was seen. My doctor told me I really needed to find a way to get some sleep or it was really going to take a toll on my health.  She admitted she knew that would be a challenge.  She also told me until I could get some rest, I probably wouldn’t be very successful trying to lose weight because the stress was causing my body to hold on to “stores” to fight the stress.
I think that’s part of why I’m blue.  I want to see if we can get someone to be here at night so I can sleep more than two hours at a time but Lynn is so against it.  He doesn’t want anyone but me to do anything for him.  He promises to find a solution; create a device to help him stay in bed.  He assures me he is getting better and it won’t be an issue soon.  I so want that to be true but I admit, I don’t believe he will get so much better, with or without the device he’s making, that I will be able to sleep.

I asked him if while I was gone he could have Eric get the deck ready for the hurricane and to go to the gas station to fill up the gas can for the generator.  When I got home, nothing had been done.  He had not asked Eric to do any of it, including he hadn’t had lunch and nothing was put away from the things he had done while I was gone. In his defense, he just didn’t think of it but it made me sad. I wish he would think about me a little more and do things to make my life a little easier too.  I know he’s the disabled one and his burden is so much worse than mine. He is so appreciative of what I do and he tries to keep a positive attitude, but…I’m tired, and I’m sad, and I just want to be able to go to the store without rushing to get back home, and I want to not do anything of importance or any chores for a while.  Oh, well.  Time to get over my pity party.
Time to go get supper out of the stove.  Thank goodness all I had to do was heat something up tonight because I’ve been “at it” catching up work and trying to fix his computer  since I got home….It’s 11:30 pm. time to start the two-hour process of dinner and getting ready for bed.    Have a good night and stay safe from the hurricane.

I have the blues today Read More »

Comfort in the face of the earthquake

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Donna and Lynn gazing at each other 2013

I’ve never experienced an earthquake before.  It was a really eerie feeling to have the air and ground moving around me.

I was working at my desk and Lynn was working in the back room at his computer when it started.  At first I just thought it was dynamite being used to get rid of stumps or someone doing construction but it went on way too long for that.  I knew fairly quickly it must be an earthquake and became sure when it didn’t stop.

I admit I was spooked.  I wondered if things were going to start falling (i.e., trees, shelves, whatever).  I quickly looked outside for falling trees (we live in the woods) and was relieved to see none; then I yelled for Lynn.  “Are you okay back there?”  He didn’t answer right away so I quickly went to his room.  He was deep in thought in front of his computer totally ignoring the earthquake.  “Are we having an earthquake?”  “Yes,” he responded very calmly with a smile.  “Do we need to do anything, like get in a doorway or something?”  “No.  This isn’t that bad.  It’s okay.”  He was so calm that I immediately became calm, too.  I felt the comfort of his presence and his assurance.

Being the one who handles almost everything these days, I forget sometimes that he is still my protector and my comforter.  It’s nice to have that reminder.  It felt good to let him be in control for a while.  I miss that.

Comfort in the face of the earthquake Read More »

Necessity is the Mother of Invention

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I’ve discovered that buying things to make life easier for a caregiver gets expensive; however, with just a bit of creativity, you can have devices to help out that work almost as well for a lot less (other than the time it takes to make them). 

Lynn has been a carpenter, is very creative and has come up with a bunch of things to help him exercise.  I’ve been able to look at magazines and come up with ideas also.  For example:
Don’t like covers on your feet?  Lynn doesn’t either.  What did we do?  Took PVC pipe and glued straight pieces and curved joints so that it sits on the floor and rises above the bed height high enough to keep the covers off Lynn’s feet.  Pipes fit under the mattress to keep it stable, and extensions come off the top to drop the sheets over.

Lynn doesn’t like his toes to rub together. Currently, he’s wearing toe socks, but before he started wearing those, I cut up IV tubing from one of his hospital visits to insert between his toes.  Kept them spread just enough without being uncomfortable.

Lying flat on your back, make your back hurt?  Buy some foam bed pads, cut them up into 3′ x 4′ sections, and tape them on top of each other.  Then make a pillowcase to put them in, and you have a pad to put under both knees at the same time to keep the knees bent and pressure off your back.

Does your loved one fall sleep in their wheelchair and then complain that their neck hurts because the muscles stretch excessively?  Take a stretchy cloth headband and some twine.  Tie the headband to the head support on the wheelchair.  Put the headband around their forehead so that when their head falls forward when they fall asleep, it will be in a neutral position and not overstretch their neck muscles.

He has several carpenter friends.  Lynn designs the devices give them the specs, and supervises the construction.  Here’s some of what he has created:

A tabletop for his wheelchair:  He had them cut a piece of plywood that would sit on top of the wheelchair arms.  He had them cut out a curve around his belly and knocked out a section for the wheelchair controls.  It allows him to rest his arms on the tabletop and put plates or drinks there as well.

Exercise equipment for his quadriceps:  He took a flat board and had tracks added to it.  On the tracking, he had them fix a platform against which he could position his feet.  He had handles put on each side of the board at the top then bought bungee cords that went around the end of the platform from handle-to-handle. He pushes the platform with his feet; the bungee cords pull the platform back, so he exercises his quads.

Core strengthening: He took PVC piping a constructed two sections held together by a wooden pole inserted between them. The PVC comes around in front of him and is a little higher on the ends.  A piece of PVC is under the mattress to keep the pipes from moving.  He sits on the bed with the piping around him to balance.  If he starts to lose his balance, he has pipeline all-around to grab.  He also uses it to do push-ups and build arm strength.

Preparation for reeling in fish:  He created a pole on a base with a hinge.  Then he had a bungee cord connected from the tip of the pole to the wall, and he had a fishing reel attached to the pole.  He could practice reeling, and he could pull back on the bungee cord to strengthen his “pull” for reeling in the fish.

What now?  He’s trying to find a motor he can get customized so he can put a trough on either side of the motor that the motor will raise up and down periodically while he’s in bed. This would allow him to flex his leg muscles periodically and relieve the stiffness he gets at night so he (and I) would not have to get up so often.

Creative, huh?  He looked to patent some of the ideas but getting a patent is VERY expensive, so I guess he will be the only one to benefit from his ideas but if you are interested and want to make one of these yourself, send me an email, and I’ll try to get you more detail.

Necessity is the Mother of Invention Read More »