2015 MSCaregiverDonna

How Can I Help?

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I get a lot of offers to help; some sincere and others just being polite. What I have found is that people want to help but they don’t know how and realistically, many have their own problems and challenges so they can’t help in a way that involves time or money.  While I really could use the help, I don’t want to put anyone out so I usually don’t ask BUT, if you ask me if you can do something for us, I may very well say, “yes.” Here are some ways you can help.

Inexpensive and limited time commitment:
continue reading at: https://multiplesclerosis.net/caregiver/caregiver-perspective-can-help/

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Rules of Engagement

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No, I’m not talking about the “take no prisoners” rules but instead am referring to rules associated with social engagements. This is the holiday season and there are family gatherings and parties at work or at friend’s home that are cherished events and a great way to keep those social connections. However, participating can be a challenge and a heartbreak for those who are mobility challenged and their caregivers. If you are having an event and want to invite someone who is a caregiver or gets around in a wheelchair or uses other equipment for stability, please consider the following:
Continue reading at

https://multiplesclerosis.net/caregiver/caregiver-perspective-rules-of-engagement/

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Tested By Fire

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I was listening to a Bible commentary today and the commentator was talking about how God takes us through trials in life that prepare us for events yet to come. He described how precious metals are often put into fire for purifying so that the impurities are removed and the remaining metal is stronger and better able to withstand pressure and stress thereafter.  I can see how that has been the case in my life.
People often ask me how I do what I do.  How can I survive on five hours of sleep a night, hold down a very intense full-time position that often requires more than 40 hours a week to complete but yet be there night and day to take care of Lynn without losing my mind? Now, there are days when that last part might not be true; days when I think I am losing my mind, but for the most part, I’ve learned to take each day one minute at a time and just deal with whatever is the greatest need at that particular moment. I realize, I’ve learned to do this by being tested by fire throughout my life.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-tested-by-fire/

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Struggles with Skin Care

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I am obsessed with Lynn’s skin. Many years ago I worked as a home health nurse and I saw some terrible bed sores that started out small and then progressed to craters. Some of the patients had their entire backsides destroyed. Most of the breakdown, I expect, was due to inattention but some was also due to poor nutrition and just the disease process the person had.
With progressive MS, secondary or primary, the person often is in a wheelchair or in bed most of the time. In either situation, the person’s ability to shift their position is very limited or maybe non-existent.
continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-struggles-with-skin-care/

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Stages of Loss: Acceptance

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Overcome by despair over a dropped bag of groceries, feelings of depression can make minor accidents seem major.

The final stage of experiencing loss or grief is acceptance. Some people never get there; some get there quickly. Most of the time people step into and out of acceptance at various times based on what is happening around them or new challenges they face associated with the loss.

For the caregiver, at least my personal experience, is that I moved into the acceptance stage long before my husband did. In fact, I’m not sure that he’s actually there yet. I know he has finally accepted the fact that he has MS but I’m not sure he has accepted the fact that his physical limitations are permanent. And maybe that’s a good thing. He continues to exercise muscles in anticipation that he may one day walk, or sit up independently, or be able to use his writing hand again. If he didn’t have this hope of being able to regain some function or of being able to not feel so miserable all the time, I’m not sure that he would not slump into a severe depression.

Continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-of-loss-acceptance/

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Joy Comes in the Morning

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Many of my blogs focus on the feelings of loss, anger, fatigue, and the negative side of caregiving because that is what we caregivers find to be the most difficult to manage. It’s much easier to cope with happiness and being well-rested. But today I want to talk about “acceptance,” the final stage of grief and loss. Acceptance is when you stop fighting the loss and have learned to accept life as it is…today.

Acceptance for me is not being happy that my spouse can no longer work in a public job or that I am glad that I have total control of our finances, how things get done, when they get done, or if they get done.  I am not happy that Lynn cannot walk, that he cannot feed himself, or dress himself, or tolerate almost any activity more than a few hours. I am not happy about these things but neither am I angry or depressed about them…at least not today. You see, the thing about grief and loss is that you never really finish going through the stages. Any new change in my own status or Lynn’s can take me right back to where I was initially.  It does not last as long because I know better how to cope with that stage but I still have to deal with the emotions. Going backward for a short time does not mean I have failed at dealing with that stage previously either; it just means there is some new situation or concern that I have to deal with today.

Continue reading this article on: http://multiplesclerosis.net/caregiver/caregiver-perspective-joy-comes-in-the-morning/

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Commitment

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I’m starting my “staycation” today. You know the kind; where you vacation at home so you can get things done that you never have time to do when you’re working. We normally vacation at the beach each year with our children but when the time came this year to pay off the rental, we realized that though we had some good times when we were there, for Lynn, most of the experience was exchanging one bedroom view for another with a lot of recovery time thrown in without access to all his special needs supplies (though it felt like I packed the house each time we went.) We decided the work involved in going and having to work around his special needs while there would not be offset enough by the short periods of time that we had available to enjoy time with the family. We enjoy having the kids around but often they were in another room or outside so we didn’t really have them around that much. So we cancelled the condo at the beach (lost $3000 in canceling the date but in the long run we preferred the loss to going.)

At first, I thought about not taking any time off at all since I use my leave time fairly often to take him to appointments or to provide his care, but then realized it would be a great opportunity to get some things done around here, so now I’m really excited about it.

My main goal for this staycation is to clean out my garage so I can move items from the spare bedroom to the garage and move things from another bedroom to the spare room. All this moving around is in preparation for installing an exercise pool. An exercise pool, mind you, that I don’t want but one that Lynn has his heart set on getting.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-commitment/

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Can You Come Here a Minute?

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“Can you come here a minute?” I hear that every 30-60 minutes all day long and you know what?  It’s never a minute. When I enter his room to find out what he needs, I’m typically gone for 15-30 minutes.
Being the chief cook, laundress, banker, shopper, mechanic, fixer-upper, and caregiver; as well as spouse, Mom, grandma, and employee, my days are filled to overflowing. The only time I sit down is to eat and when I do, I’m usually composing a shopping list, taking care of bills, or completing assignments for work OR I’m feeding Lynn as I take a few bites as well. Most of my days are 19 straight hours of go, go, go; so in order to manage my life I have to be relatively organized.
“Organized?” you say as you look around my house. Well, my world might not look organized to you but trust me, it is. I have a hybrid concept of “everything in its place.” Its “place” is somewhere in a particular room, not a specific drawer, (well, sometimes a specific drawer if I use it fairly often) and is usually found somewhere to the “left as you enter the room.” For example, all medical equipment is in the spare bedroom, as is, the urinary catheter supplies. The equipment is located wherever you can get it to fit. The monthly catheter supplies are all on a shelf in that room and the daily supplies are in a plastic shelving unit in the bedroom. One is out of the way and the other is within arm’s reach of where I need it most. Supplies are stored according to purpose, frequency of use and size. I have cheap plastic storage bins stacked around that can be moved to where I need them and which allow me to have “activities” grouped together. Care supplies are organized; nothing else in the room is.
Clothes, for example, are not a priority for me. I want them clean, comfortable, and durable. I usually wear scrubs and they usually look well worn. I throw them in the hamper or washing machine, wait till I’m pulling out Lynn’s last pair of shorts to wear, and then and only then, do I do laundry. When the clothes are clean and dry, I hang them in the utility room next to the dryer for convenience or dump them into a laundry basket where they will probably stay until I need to use them again. My style of being organized – frequently used clothing right where I can walk by and grab them as I need them.
I wish I could be as organized with my schedule….but I can’t.
The key to my survival is flexibility and the ability to break tasks into smaller components quickly so that I can multitask. I keep in mind what is coming up next at all times. If I need to go to the back room to assist Lynn in answering the call of nature, I grab supplies or clean laundry to take with me. I ask Lynn to always tell me everything he needs when I first enter a room so I can plan my “process” for that particular visit. For example, if he needs me to make tea, cath him, adjust his position, and give him nose spray, I would put the water on to heat, fix the tea while it’s cooking, cath him, then adjust him so the process of cathing him would not disrupt the positioning needed, finish the tea then give him nose spray after he drank some hot tea. In my mind, I figure out how long something will take, what can be done in the meantime and what will be the impact on any one request by the sum and influence of all other requests. Through that analysis, I come up with a “routine.” Once I repeat that routine a few hundred times, it’s an automatic response. My goal=save time and energy.
That process works UNTIL he changes his mind in the middle of a routine and messes up the entire schedule. How often does that happen? continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-can-you-come-here-a-minute/http://multiplesclerosis.net/caregiver/caregiver-perspective-can-you-come-here-a-minute/
 

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Finding the Will to Live

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Let me start by saying that I’m not a psychiatrist nor a licensed counselor so what I mean is based on my own experiences in talking to others with disabilities, my own experience with family members, and my personal beliefs. Therefore, you may or may not agree with me, and that’s fine because this is a very delicate topic and one which creates a lot of emotion in people.

When a person has a chronic health condition that cannot be cured, depression is prevalent. When the disease also affects the neurological center of the brain, the likelihood of depression is even more significant since the natural chemical reactions that would typically help the person stay balanced may be impaired. Therefore, for people with secondary or progressive MS, depression is common and often a struggle.

Loss of Direction or Purpose:
Though MS can affect children and teenagers, it most often affects adults. Once we reach adulthood, we have created in our minds our vision of what our life will be. We’ve thought about getting married, having children, getting a job, or establishing a career. Maybe we have bought a home and have a car(s), so we have a debt. We may have gone through years of school or training and “paid our dues” ready to launch into the rewards of our efforts and then something like MS hits. Maybe it’s been there lurking just under the surface with some minor annoyances like in Lynn’s case, or perhaps it hits with a vengeance, and an immediate loss occurs that may or may not be permanent. When that happens, the breaks are put on, and both the person with MS and their caregiver slam into a wall.

In addition to coping with the loss of function, there is also the loss of the dream. Lynn was a musician, an excellent tenor, and an incredibly talented carpenter and builder. He could do so much, but most of it required physical labor and dexterity. Over 2-3 years, Lynn’s MS rapidly progressed. His doctor could never quite say if he had Secondary Progressive MS (SPMS) or Relapsing Remitting (RRMS), but I think he felt it was Secondary, and we hoped for RRMS because let’s face it, there is nothing out there if you have SPMS or Primary Progressive (PPMS). Lynn was seeing the doctor every three months. Each time his abilities (other than his mind) were a little slower than before. Over 18-months, he lost his job and his ability to play musical instruments or to hold a musical note for an extended time.

He lost his identity, his purpose, and his planned direction for his life. He was the man of the house, the protector who could not protect but instead needed protection. He was the builder, the fixer who suddenly needed all things done for him. He would try to explain to others what to do and became frustrated because it would have been so easy for him to do it himself…before. Over and over again, he would say, “What good am I anymore?” “What am I supposed to do now?” He was angry, scared, and felt physically bad. He could see no purpose for his life and became depressed.

Unwelcome Changes
While he struggled with, “What am I supposed to do now?” I struggled with, “How can I do it all?” I was counting on him to build our new house, bring in a good income, help me keep up with three children, protect us, fix things, maintain the home and car and yard, and so much more that now was MY responsibility. And I didn’t want to do it. I was angry. I was scared. I was tired. I was overwhelmed. I was depressed.

Learning to Live Differently
We set about learning to live with his disability. What worked before did not work now, so we had to get creative in how we accomplished the tasks of daily living. I had so much to learn that he used to do. He had to learn patience and how to tell me what he needed. Our lives changed completely. I found a new purpose in being his caregiver, but he struggled to find any meaning. Fortunately, his son suggested he try to write fiction since he used to love to write when he was younger. He tried it and now has published two books, Rising Tide and Eden’s Wake. He gets up each day and “goes to work” either writing or marketing his books. It provides him with a purpose and a sense of accomplishment, which is what I think is the most significant problem that needs to be fixed for most people suffering from depression. The person goes from having a purpose in life to not having one that they can identify.  Their job is gone; they can’t support their family; they cannot perform the usual roles of marriage or parenthood as they did before, positions that held significance for them before are now limited.  So they flounder in fear, sometimes self-pity, hopelessness, worthlessness, and all those other negative emotions. I think it’s that loss of purpose that makes so many think of suicide.

Pain and Suffering
In addition to the loss of purpose, there is often the pain and suffering of MS. The public doesn’t hear about the pain and suffering. They hear MS and think of difficulty walking. They don’t think about the constant fatigue that makes you want to stop breathing due to the effort, the pain of muscle spasms and spasticity, the overall malaise and heavy feeling and something severe pain from nerve irritation. Pain and suffering that does not respond to treatment. Pain and suffering that seems never-ending and which may very well be.

If this person was a prisoner of war and people heard of treatment happening to them in the same manner that someone suffers from MS, they would wonder how they go on with life. They would see suicide as a justifiable option. They might also see it as the only option.

Reason to Live
However, I hope if you have MS that you do not give up so quickly. This is the sensitive part. My faith keeps me from seeing suicide as a reasonable option. For me, committing suicide means giving up on God. It means that I don’t care about how my family would cope afterward.

 Continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-finding-the-will-to-live/

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Stages of Grief: Anger

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Social Security provides income to qualified workers over the age of 65 and Medicare provides insurance to eligible elderly and disabled.

When you first suspect your loved one has MS, you tend to find ways to deny it. Lynn kept saying his doctor had ruled it out. I kept saying, “Are you sure you’re telling him everything?” When he said, “Yes,” I would accept that as true because I wanted it to be true…denial.

Then, the day came when all the tests were back, and there was no denying the fact he had MS. By that point, he had significant symptoms he had denied, which I no longer could. By late into the evening hours, he was doubled over, unable to stand upright. He would fall easily; drop things. He was too exhausted to eat, and he loved to cook and eat. We would go to the beach for him to fish and he would find reasons not to go out but to stay in and rest. So, I knew well before the telephone call what the diagnosis would be.

I quickly moved from denial to anger at that point. I would not play his game anymore of pretending the elephant in the room wasn’t there. I was furious with his primary care doctor. Why hadn’t he been able to see what was going on before Lynn got so bad? He had a family history of MS for heaven’s sake. Was he a quack? I was ready to report him to the Board of Medicine for being incompetent. Then, I realized that the problem might not entirely be the doctor’s fault; it might be Lynn’s. Lynn was so sure he could NOT have MS or rather, he would refuse to consider the possibility, that I suspect he hid his symptoms. He has even acknowledged as much to me since. When I realized Lynn’s own refusal to face the possibility, I was angry at him. Being mad at Lynn brought about all sorts of conflicting emotions.

(1) I was supposed to be his support system while he adjusted to the news he had MS, BUT inside I was saying, “See. I told you so. You didn’t have to have gotten this bad but would you listen? No! Now, look at you.” Of course, I could not say that, but it’s what I was thinking.

(2) Its politically incorrect (not to mention futile) to be angry at someone for being sick. We, as a society, look in horror at someone mad at someone for being sick. How can they be so heartless? So, we don’t show the anger externally…but it’s there. This “disease” has now put the one who has it in a place of more considerable significance. No longer is the playing field even, but now all decisions will be made based on the impact of the disease. Being selfish by nature, that doesn’t always sit well with me. I resent when I can’t do what I want to do because of the “disease.” I’m not the one who is sick, but I’m the one who has to fix everything so that he can be as comfortable and as well as possible, even when my health might suffer.

(3) I became angry because I didn’t want my life to change. I liked being able to go into work, go out, sit and read, go to bed when I wanted, eat out, lots of things that were going to change. This emotion I struggle with a lot now. I have no “me” life, or at least it’s minimal. I go into work away from my caregiver responsibilities once a week. That’s my only time away from him other than a quick trip to the grocery store, pharmacy, or library. Nowhere else do I go…and I get tired of that. I see a movie advertisement, and I want to see it, but I can’t. I know that I have to wait till it comes out on DVD and then I’ll only see it if it’s something Lynn would also like to watch, and if we watch it, we do so as I feed him. Very rarely do I have time to sit and watch a movie (or anything for that matter) on TV. I used to LOVE to read. Now I feel guilty if I skim an article on the internet because I know that will put me behind in all the things I need to do. (I get around this one though by listening to books on tape from the library…a great escape!)

(4) I’m angry that I will not be able to retire to the “good life” we had planned. The house we had started to build sits idle with a completed foundation and likely will never become a home. All our spare cash goes to buying organic food, supplements, and equipment to meet his medical needs. We cannot travel because he cannot tolerate it. I can’t get an aide or assistant caregiver because they are too expensive full time so I must work and do his care on my own. If I were to retire (I’m almost 58) then we would not have enough money to continue to support his health as we do now and he would likely get worse. So I have concluded that I will have to work until I die or become disabled myself and can no longer go on.

(5) I’m angry about all the events I miss. I want to play with my grandson at the park, go to my parent’s home for family reunions, attend a conference at work, go to the Christmas cantata, attend church regularly, go places, do things; see people and I can’t. If an event is not at hour home, we don’t get to attend because Lynn cannot tolerate being out for very long and it’s challenging to get a caregiver that doesn’t cost anything when most of my “backup” caregivers are at these events themselves.

There is much about which I’m angry. I’m not upset with Lynn. I’m mad that he has MS. I’m angry at this monster has invaded our lives, and there is no getting rid of it short of death. I’m mad that as hard as we work to make him feel better than 6 ½ days out of 7, he feels terrible. I’m mad that he can’t help me. I’m angry that he can’t share in the joy of playing with our grandson. I’m furious that he can’t sing at church or play the drums or accompany himself with his guitar because he was SOOOO good at all these things.

I’m angry that I can’t fix this. I’m mad that I have to watch him suffer. I’m furious that he needs me so much and I’m angry that I can’t give more. I’m angry….

But not always. Just sometimes.
finish reading this article at http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-of-grief-anger/

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Independence Battles Protection

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Husband and wife out for a stroll.

One of the greatest struggles I have found in being a caregiver is finding the happy compromise of my husband’s need for independence and control of his life versus my need to control his environment and keep him safe and healthy. Many times these two needs seem to be in direct conflict with each other. Here’s why I think.
Him:
Lynn was in his 40’s when he was diagnosed with MS. He was married, had a child, a successful career that was very physical, he played in a band, sang, and was a strong man of faith. MS came along, and suddenly, he was vulnerable. No longer did he have the stamina to work all day and go to band or choir practice at night. No longer could the go to trade shows and walk the miles he needed to make sure the displays were set up and workings as necessary (these displays were often the size of small houses). No longer could he travel and immediately to go work after landing. No longer could he drive because he could not determine when his leg would cooperate with pushing the gas or the break. In his mind, he was losing the man he was because let’s face it; we are what we do to a large extent. He was slowing losing his identity of himself, so he was trying to control anything he had the power to control. Thus came the conflict.
As Lynn’s muscle fatigue and spasticity would get worse, so would his balance and ability to walk any distance. Several times a day, he would fall. Sometimes he would get hurt; other times it was his pride only that got hurt, but he refused to use a cane or a walker. He would put his hand on the wall or furniture or lean on me, but he was NOT going to give in and use a cane! He refused to admit he needed help because in his mind if he gave in to the disease, then the condition had won.
Me:
When Lynn was diagnosed with MS, we were married (both for the second time), both of us had children, and I have a very time consuming and difficult job. My two children lived with us, so my life was hectic all the time caring for the kids, keeping up with the house, and managing my demanding job. Though Lynn and I had joint interests (we both were in choir and both very involved in church activities), much of the time we went our separate ways because we both were super independent. I also needed to be able to control my life so I could fit everything in that I needed to do. When I have control, I feel safe and confident.
Enter: MS.
I watched as my husband’s body began to decline. I could see his struggle to keep going when exhausted. I could see how, as the day progressed, his balance got worse. I understood that he felt that if he “gave in” to the disease, he would lose his fight against it. However, I was also very frustrated with him. I saw him fall and sometimes not be able to get up knowing that at any moment, he might fall and break a limb or hit his head or break his back. I KNEW he needed to use something for support. I KNEW he needed to make changes in his lifestyle to conserve energy…but, he refused. I became angry.
Both:
I was angry and frustrated. He was angry and frustrated. Both of us felt right in what we were doing, and both of us were, but we needed a compromise. Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-independence-battles-protection/

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Helping Him Get Comfortable in Bed

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One of the most difficult aspects of caring for someone who has limited movement is getting them comfortable in bed; at least it is for me.  When I lie down at night, I know it takes a few moves here and there just to find that right position of comfort that allows me to settle in to sleep—that sweet spot.  However, when you are responsible for helping someone else find their “sweet spot,” you don’t have the benefit of “feeling” for just that right point of pressure and relaxation; so how do you help them get comfortable?  Here are some things I do to help Lynn be as comfortable as possible in bed.

I use lots and lots of pillows to help me position him. He has gastric reflux so I have a wedge pillow under the top of his mattress to elevate his head. Unfortunately, that can cause his head to be slightly pushed into his chest so I have a pillow to put under his head that is designed to give more neck support and it allows his head to fall back over a slightly elevated fold. By lying back over the fold, it raises his chin off his chest allowing him to get a better airway and creating less pressure on his neck muscles.

I also use pillows under his knees. I actually use two thin pillows under his knees and position then so that they support both his thighs and his knees. That helps to reduce the pressure under his lower back which seems to help if he is lying on his back for very long.

If I need to roll him over, I bend the leg that is closest to the side of the direction in which I’m moving him, reach to the shoulder that needs to end up “on top,” and roll his body either toward me or away from me to achieve the desired direction. I have a wedge pillow to put under his side that allows him to roll back slightly and rest on the wedge or I double over a pillow and use it like a wedge. Then I keep bent both the top and lower leg slightly and put a pillow between the legs so that the bones aren’t resting on each other (one between the ankles may also be necessary). When on his side, a pillow to support his upper arm sometimes helps as well. The biggest challenge to resting him on his side is the lower arm. Sometimes it helps to have him slightly leaning back on the pillows and I use a towel under his hips to move the hips slightly forward so he’s not completely lying on that side. Positioning on his side takes a lot of communication between us to determine how to best support those body parts hanging in the air and how to keep the pressure off all those bones taking all the weight in that position.

Since Lynn has so much spasticity in his arms and legs, one of the most important devices I use for his comfort is a “boot” for his foot.

continue reading at: http://multiplesclerosis.net/caregiver/helping-get-comfortable-bed/

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Dealing with Loss

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During my nursing training, I was introduced to Dr. Elizabeth Kubler-Ross’ five stages of grief and loss related to helping patients and their families as they experienced dying and the loss of a loved one. Since that time, I’ve come to realize that those five stages of grief are not exclusive to death and dying. We experience the same emotions whenever there is a significant loss, including the loss of what “should” be.

I would suggest that most of us think of our life span in stages:
Stage 1 Preparation for Life:  Being born, the preschool years, completing K-12, college or career training
Stage 2 The Productive Years:  Finding a mate, starting a career, having a family, settling into a pattern of living.
Stage 3 The Plateau Years:  Instead of struggling up the hill to acquire and achieve more, you start to live out the life you have chosen with marginal ups and downs, some crisis, but you know what you have planned your life to be like and you’re living it.
Stage 4 The Declining Years: Children grown; maybe starting their own families. You are not still trying to build a career but are instead reaping the seeds you have sown so your push forward and upward is declining and now you’re settled and taking it easy. Probably having more aches and pains and the development of some chronic conditions has likely happened as age wears away at muscles, joints, energy, and memory.

That’s our expectation for how life should go. Then somewhere in your productive years, you start noticing that something is just not right with your spouse. He’s getting tired more often. He’s having more difficulty with activities. First, he goes to the doctor for this and then for that…he gets better but it comes back…and you start to wonder what’s happening. Then someone mentions Multiple Sclerosis. You dismiss that notion because it just can’t be true. He’s fine. He’s able to _____(fill in the blank depending on what you have seen of people before with MS). He’s young. He’s strong. He’s healthy….They are wrong. I won’t let it be true.

So you go look for “someone who knows what they are doing” and get referred to a neuro-someone—neurologist, neurosurgeon, neuro-ophthalmologist, or maybe a physical medicine/rehabilitation specialist.  Someone orders an MRI, a lumbar puncture is performed, and blood is drawn. Then you get the call, “your husband has MS,” and your blood turns to ice. No, it can’t be. They must be wrong. We have children to raise. I have a career. What if he can’t walk? How will I do this along (having already put in into the ‘disable’ category? What does this mean for us…for me?

And, just like that; you’re been thrown head first into the spiraling stages of grief and loss…only you’re not the one who has the condition causing the loss; you’re the one who is supposed to be understanding, supportive and their “rock” to hold onto while they go through their emotional crisis. But, when you’re married and your spouse has MS, he’s not the only one with MS; you have it too, by proxy. So the shock, disbelief, denial that happens with him also happens to you.
continue reading at: http://multiplesclerosis.net/caregiver/a-caregivers-perspective-dealing-with-loss/

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Home Alone

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If I’m going to be away from home for any length of time, I try to arrange for someone to stay with Lynn for most of the time that I am away. I sometimes have to leave before the person staying with him can get there or they have to leave before I can get back. That was the case this week. I had to go into work. The person staying with Lynn was coming at 11:00 and leaving at 2 so I knew he would be home alone for at least an hour and a half since the meeting I was attending ended at 2.

When I left at 11, my “back up” was not here yet. Therefore, rather than just turning over his care to someone, I had to plan for “what if.”  What if she has gotten stuck and can’t make it? Just in case that might have happened, I organize things to be “in reach,” make sure he has water and his urine drainage bag is empty. I have to leave the front door unlocked so the person can get in, make sure everything is turned off or on for safety and then head out to work with instructions to “call if she doesn’t show up.” I didn’t get a call so I assumed all was well.

Once I’m at work, I’m focused there. Much going on; much to do; no time to check on Lynn. As often happens, everything takes longer than anticipated. The clock is now running beyond the time he and I had planned that I might be home. I finally leave work but have to make three stops on my way home and my drive home is an hour long. I send him a text to tell him when to anticipate I will be there and to say I still need to go back out to the grocery store after I get home. I assure him I will run home first, get him liquids, something to eat if he’s hungry, empty his urinary bag and get him settled before I run out again to the store. By the time I get there, he has been home alone for three hours. That’s the longest I’ve ever had to leave him alone.

Every time I leave the house I have to make a calculated guess on how much risk I will take with his safety and comfort if I have to leave him alone. In many ways, leaving Lynn home alone is like leaving a toddler at home (except a toddler can get into more trouble). When no one is around, Lynn cannot access anything that is not within his immediate reach. If he drops something, it’s as good as gone. He often does not have the strength or dexterity to lift or move items left for him to use; we never know how his fatigue and/or weakness may limit his strength. Therefore, if I’m leaving the house, I have to:

  • Leave a thermos of hot tea and one of cold water within reach. He needs both because sometimes he is very hot and needs to cool off or just the opposite; very cold and needs to warm up.
  • Have a snack available if I’m going to be gone a long time (must be able to be eaten with fingers; he can’t hold utensils).
  • Leave an empty catheter bag.
  • Arrange for entertainment and leave a charged cell phone nearby.
  • Make sure he’s comfortable and he has access to his medical alert necklace.

Continue reading at: http://multiplesclerosis.net/caregiver/home-alone/

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Watching, Waiting, Being Strong

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Caregivers need help finding answers

It’s funny how words or pictures will bring back such vivid memories. The Cultural Arts Department at work sponsored a poetry/prose writing contest recently with the theme, “Rhythm.”  I don’t usually enter such contests but when I thought about the theme, it brought back memories of standing next to Lynn’s bed while he was in the ICU about three or four years ago.

That year was terrible. Just after Thanksgiving, Lynn was admitted to the ICU due to a urinary tract infection gone wild. He had been using an external collection device instead of an internal intermittent catheter thinking it was less likely to cause infections.  Well, he got one anyway.  He saw his urologist who confirmed the diagnosis and gave him antibiotics.  It didn’t help.  The urologist took a culture the next visit and kept Lynn on the same antibiotic.  This went on for three weeks while he got sicker and sicker; pus coming out each time he urinated.  The urologist said he couldn’t figure it out but if I wanted to call the Epidemiologist, go ahead. So, I did; turns out the urologist didn’t read the culture.  If he had, he would have seen that the bacteria Lynn had was resistant to the antibiotic he was taking. (Another good reason to push back if your care isn’t going the way you think it should.)

Unfortunately, getting the right diagnosis was too little too late.  By the time the infection was showing improvement, Lynn was not eating, extremely weak, and felt so terrible that HE asked me to go to the emergency room (He never wants to see a doctor so this was a big deal).  He told the Emergency Department doctor he couldn’t eat because he felt like he could not swallow.  They thought he might be having an exacerbation.  Into the hospital he went in order to get a nasogastric (NG) tube inserted to feed him.  Shortly after insertion, he coughed the tube up part of the way into his lung as he was receiving a tube feeding and ended up with pneumonia.  The pneumonia lead to septicemia and he ended up in the ICU with a body temperature of 90o; yes, I said 90o. Three long weeks after this admission, he was released home; very weak and still not feeling very well.

Three months later, we were back again when he just couldn’t stay awake. I had been saying for a few weeks that I thought he had sleep apnea pretty bad so he saw a sleep specialist and was put on CPAP and then advanced to BPAP. His lungs were retaining large levels of carbon dioxide even with the respiratory support. The respiratory therapist who knew him from a prior admission, let me know that his lung capacity was significantly less.  As his CO2 levels continued to rise, I was pulled aside to let me know that if they could not stop the continued elevation cycle, they would have to put him on a respirator. They called in an anesthesiologist to evaluate and he recommended a change in his setting on the respiratory support being provided.  They wanted to give that thirty minutes to see if it would work but then it was either put him on the vent or he would likely have a respiratory arrest.  The following story I wrote for the contest, describes how it was to wait those thirty minutes.

continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-watching-waiting-being-strong/

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Pathway to Power (Chair)

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Powerchair

As Lynn’s multiple sclerosis has progressed over the years, we have gone though many different mobility assistive devices. Each has been a tremendous help but at each stage along the way, Lynn has resisted using them. Looking back, I wonder if he knew then what he knows now would it have made a difference?

For example, Lynn obviously had MS long before he was diagnosed with it. By the time he had an official diagnosis, he was having frequent falls, extreme fatigue, and difficulty standing upright. He grilled every night, rain or shine. To make it from the deck to the bedroom where he would watch television, he had to hold onto the hallway walls the entire distance. We have a dark smudge the width of his hand print all the way down the hall. I tried encouraging him to use a cane but he insisted he didn’t need one. I would regularly hear him fall. Each time I would yell, “Anything broken or bleeding?” As long as the answer was no, I would leave him alone to get up on his own (until I would hear the volume or frequency of swear words indicate it was time to step in). Finally, one day he proudly told me when I came home that he had seen a cool Irish walking stick on the internet which he had ordered. I think because it was “cool” it was okay for him to use it.

Before too long, the walking stick didn’t seem to be enough. Not only was there an issue with balance but his fatigue was so significant that any distance walking was very difficult. He would be so tired just from walking from where he parked his truck to our house, that the fatigue alone would cause his leg to give out and down he would go. If the leg didn’t give out, then he was battling the spasticity which kept him from being able to bend the leg at all. In either case, it was difficult to get him from the vehicle to the house or anywhere else. I suggested using a wheelchair which was absolutely rejected as an option. One day one of our friends showed up with a rollator (rolling walker). I told her he would likely reject the gift but since he didn’t want to offend her, he accepted it though initially he did refuse to use it. He refused, that is, until one day he fell and was too tired to get back up. I suggested he allow me to push him in the rollator, and he agreed.

After that night he allowed the use of the rollator if he needed to go a distance. I used it like a wheelchair. It was still off limits to mention the “w” word but he would allow me to push him around in the rollator. I actually pushed him around more than he walked. He really needed a wheelchair but could not bring himself to admit it. Then we had a couple of incidents where I hit something as I was pushing him along and we both went tumbling over. A rollator is just not sturdy enough to roll over cable or other object without it causing a complete stop, which, if I was unprepared for the abrupt halt, would result in us both going over. It was only when I almost got hurt from such a fall that he finally agreed to a wheelchair.

Our first wheelchair was a hand-me-down that did not have legs. I would lift his legs and pull him rather than push him. I insisted he needed a real wheelchair and he chose one he could propel himself (with the large wheels in back). He honestly tried to move himself around in it but it was apparent fairly quickly that he didn’t have the hand, arm, or shoulder strength to do that.

Having a wheelchair was a big improvement for getting him from place to place but he was dependent on my pushing him and it was fairly uncomfortable. At the time, he was getting physical therapy trying to help with regaining some strength and function in his limbs when one of the physical therapist suggested he attend a wheelchair clinic to look into a power chair. I’m so glad we took her advice.

The power chair clinic was an eye opener. I learned that wheelchairs are like clothes; you need to get measurements and pick them to fit the person. The sales rep was very familiar with MS and suggested he would need one that would allow his legs to lift and a tilt function as well as a head rest. He didn’t see the need but she convinced him that he needed to get it now while the insurance was paying for the initial chair because it would be very difficult to get it later. I’m very glad we listened to her advice because in just a few months, he needed all those features to manage.

Now his wheelchair is as much a part of him as his clothing and when it breaks, it’s a major catastrophe for us. We were recently without the tilt feature for two weeks and it was horrible. The tilt really helps me as much as him because when he tilts back, it removes gravity’s influence and it’s so much easier for me to take off his clothes or shift his position. His upper body is weaker now too so it’s difficult for him to hold his head up and not slump forward without the use of the tilt. In fact, after just two hours without it, he was really hurting and miserable. Fortunately, we had a portable access ramp that I was able to use to create an incline. It was a complicated process to set him up with this make-shift tilt but it worked. However, I must say, I felt like throwing a party when the tilt system arrived and was re-installed last week.

The last mobility device we have bought for his use is, unfortunately, one that he has never been able to use. He found a 4-wheel drive wheelchair designed by Radical Mobility in South Africa that could be used to maneuver through sand and other outdoor terrain. This awesome wheelchair was very expensive ($12,000 and not covered by insurance) but it would allow him to again participate in his favorite pastime-surf fishing. He ordered it but it never worked in the sand nor did it have the power necessary to carry Lynn up a ramp. The company said it needed to be reprogrammed and to send the controller back to them. That was four years ago and they have refused to return the controller despite our many attempts to get it back.

continue reading at: http://multiplesclerosis.net/caregiver/pathway-power-chair/

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Standing Beside His Bed

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Introduction:  I wrote the following story about a time in my life when I was waiting at Lynn’s bedside to find out if he was getting better or worse.  I submitted this story to a writing contest at work and won second place. However, I wanted to share it with you because I think many of you can relate to it.

Standing Beside His Bed

Standing beside his bed, watching the rhythm of his breathing, the irregular up and down motion of his chest, I think of where we have been and where we may be heading. Watching and waiting for that next breath. Listening to the rumbling of secretions he cannot clear on his own, it is strange being on this side of health care.  For years I was on the other side; the one checking the vital signs, assessing the patient for changes indicating improvement or decline.  For years, I was in control.  Now, I’m on the other side…waiting…watching…hoping…alone in his room; his strength when he has none.
I learned about multiple sclerosis in nursing school years ago, but the overview in the textbook in no way prepared me for the reality.  Before, his MS became so progressive, the rhythm of our lives was moving along, flowing with the usual ups and downs, sometimes riding high on a wave of happiness but often feeling the plummet as the wave crashed down again and new symptoms emerged.  Up and down like the ocean currents; in and out, requiring us to develop a new “normal” to the rhythm of our lives.

What is a normal rhythm anyway?  For us, it’s taking each day as it comes, each moment as a blessing of time God has granted us to be together and with our family. As the ebb and flow of the disease takes control of our lives, we adjust to a new normal; a new way of adapting; a new rhythm of life.

Standing here I pray for strength and mercy. I pray for wisdom for his healthcare team.  I pray that they will not see him as a diagnosis but as a person with his own needs, his own hopes and dreams.  I appreciate them letting me be part of his healthcare team; for them allowing me to be his advocate and for them listening to me … because I know him best.  I know the subtle changes; I recognize a difference in rhythm or color or sound that mean improvement or decline.
And I continue to wait and watch.

The doctors, nurses, therapist, and so many more come and go.  They warn me the next thirty minutes will decide; does he go on a respirator or is he stabilizing.  If he goes on the respirator, he may never come off; his lungs are just too weak. So I wait…and watch…and pray.

Do I notice a change?  Is the rhythm of his breathing less erratic, somehow less labored?

The medical team comes in and draws yet another tube of blood.  They come back smiling, “It worked. His gases have improved.  Let’s see if he continues on this path. Maybe we can avoid the ventilator after all.”

I say a prayer of thanksgiving.  My fear that this was the beginning of the end or the beginning of a lifetime on a ventilator is fading away.  The rhythm of my heartbeat slows to match the rhythm of his breathing and once again, the normal of our lives change and we move on to the rhythm of a new normal in living with this life sentence of MS.

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Connecting with Grandchildren

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Papa giving Eli a ride on the wheelchair

Lynn loves children.  He gets such a kick out of watching them play and run around.  Some of his favorite commercials are those that have little children running around getting into things and acting adorable. When my daughter (his step-daughter) announced she was pregnant, he was happy for her and her husband, but didn’t melt into a heap of sweet, gooey, sentiment…that is, until the baby was born.  The first time that soft, tiny, helpless little boy was lain on his Paw Paw’s chest, Paw Paw was addicted to grandparenthood.

When Eli, our grandson, was a little baby, Lynn could interact with him by me holding the baby on Lynn’s lap and turning the pages of a book as Lynn read to him.  Eli loved to have anyone read to him and would sit attentively while Lynn read stories.  I could also wrap Lynn’s arm around Eli, as he sat on Paw Paw’s lap and drove him around in his wheelchair.  I would walk backwards in front of them in case Eli suddenly decided to get down but even though he was very young, he seemed to sense that he had to stay very still when riding Paw Paw’s chair.  He also interacted with him by making a game out of Eli “riding” the peddler Lynn used to keep the spasticity at bay in his legs.  I would hold Eli on one of the foot pedals while it rotated around and Lynn teased him about riding. However, he has outgrown that game.

Now that Eli is 2 years, 7 months, his primary focus is pushing trains and cars. He wants to be at eye level with the toys as he watches their every move.  He also tends to get right in the middle of the tracks and walk over them to get to his vehicles, breaking apart tracks pretty often. Unfortunately, Lynn cannot get on Eli’s level to play.  He cannot fix the tracks or re-attach missing pieces of something. Eli no longer likes to sit and listen to a book being read to him. He wants to be running around.  The result is that Lynn and Eli have very little interaction and that makes Lynn very sad.  He absolutely loves to see Eli even if all he can do is watch him play; therefore, I have had to put on my creative caregiver hat to come up with ways he can play with his grandson.

When Eli stays with me and Paw Paw, there are many times when Lynn needs attention in another part of the house other than where Eli is playing. Being that the “terrible twos” are all about finding independence and asserting their personalities, he isn’t always thrilled with stopping his play to come to Paw Paw’s room while I do something and I’m not thrilled about having him out of my sight for extended periods of time. So, I keep Lynn’s room stacked with entertainment items that Eli can only use in that room.  He has a train he can push, numbers to count in several areas (Eli loves numbers and letters), a small interactive lap pad that has number and letter games as well as some children’s radios with fun songs they can sing together. That’s worked pretty well until recently when he got new Christmas toys in another room and didn’t want to be stuck in Lynn’s room while I cathed or fed him.

continue reading at: http://multiplesclerosis.net/caregiver/caregivers-perspective-connecting-with-grandchildren/

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Spring Into Action

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Are you prepared to spring into action for an emergency? Just because you are a full time caregiver, doesn’t mean the world stops sending you other challenges so you can focus on the one needing your care.  Most of us have other family members—children, parents, siblings, even close friends or others who are near and dear to our hearts.  What happens when they have a crisis and they need you? It’s a good idea to have a plan in place for just such an emergency.
Last weekend, my Mom seemed to be having a stroke.  Suddenly, she could not say what she wanted to say but instead a weird combination of words came out.  She was fully alert and aware that her words were garbled but unable to get what was thought in her head to come out of her mouth. Thought there were no other symptoms of a stroke, dysphasia is a potential sign of stroke and one that should not be ignored so I needed to get her to the emergency room.

It’s important in times of crisis, to be able to sit aside as much emotion as possible so that fear and anxiety does not prohibit you from reacting.  Having originally been trained as a nurse, I had experience is becoming “clinical,” that is you start assessing major bodily functions, determine what is working and what is not and then plan quickly to take whatever necessary steps come next. Living in rural Virginia, our rescue squad is volunteer and doesn’t always have a team at the station plus the rule in an emergency is to take the patient to the nearest emergency room.  I wanted her to go where her medical records were located if possible and since there was no breathing concern and other vital signs were stable, I realized the quickest way to get her there was to take her myself.

Unfortunately, taking Lynn with us was out of the question.  I could not manage to care for him and my Mom at the same time so as I was having Dad help Mom get ready to go to the hospital, I immediately put an indwelling catheter into Lynn so that someone else in my family could stay with him.  Then I called his son, to come spend the night just in case but he lived an hour away; so I called my daughter who only lives 10 minutes away and she came right over.  She finished helping my parents get ready while I pulled together Lynn’s essentials—catheter (done), night time medications(assembled and labeled), morning medications (assembled and labeled), instructions for other comfort needs (written and placed on kitchen table.)  Checked and double-checked.  Lynn had or was about to have all he needed for me to leave immediately and stay away several hours.

My family has learned that when I call for help, it usually means I need to be relieved of Lynn’s care for an extended time. They have made a commitment to do what they can to always be there for us and having the knowledge of that commitment gives me such peace knowing that they have my back where he is concerned. I have an emergency folder prepared in case something happened to me and I can’t do the prep work for when I’m not here.  It’s good to have that available and to update it periodically since care for anyone with a long term condition can change over time.
continue reading at: http://multiplesclerosis.net/living-with-ms/spring-into-action/

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I’m Thankful to God That Jesus Didn’t Quit

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Many caregivers find strength, comfort, and support from their faith. Physicians report that patients who have strong belief systems recover from major events quicker and seem to have better success rates than those who have no belief systems.

My daughter writes each day about something she is thankful for that day. I was so touched by the following post she had on Facebook last night, that I just have to share it with you.
 
By Sarah Johnson
Today I’m thankful to God that Jesus didn’t quit.
Imagine. You’re in the desert. It’s hot. Like, really hot. You’re exhausted. You’ve been chained up and beaten. Not only with fists, but whips, chains. Every inch of you hurts. You have open wounds all over your body. Your sweat, your salty sweat is rolling into those open wounds. Stinging like tiny needles being dragged along your skin. You can’t wipe it away. Your feet are raw from walking, every pebble or hunk of dirt they scrape against as you step is excruciating. You are dragging a heavy wooden rugged cross on your shoulders. The wood from the cross shoving splinters into your sunburned shoulders with every step. Your vision cloudy from the blood dripping from your head into your eyes. You can’t wipe it. Your mouth so dry you feel panicked. There is no water. You hear your heartbeat pounding in your ears. Bouncing around inside your head. Only slightly muffled by the shouting of people wishing to see you die. Every breath is more painful than the last. You are about to die, but not soon enough. You know you will be nailed to that cross on your back and left to hang for hours. You know you’re about to die one of the most painful deaths possible.

You could stop it all.
With one word you could make the suffering end and feel no more pain.
Do you do it?
Do you quit?
Most would. In fact, I’d like to argue that all would, given the opportunity. All except Jesus.
The Son of God.
Our Lord and Savior.
He continued His suffering. He valued our eternity more than His life on earth. More than His comfort. More than Himself.
Jesus came to this earth specifically to minister to us and ultimately die for us, so that we may live eternally with Him. At anytime He could’ve said “nope, this is too hard, I quit”, but He didn’t. He faced torture and death and didn’t turn away. He completed His mission. He endured all the ridicule, hatred, beatings, and lashings for us. So that we could one day know true peace in Heaven. He did this knowing a lot of us would spit in the face of His sacrifice. He did it anyway. Wow! He. Did. It. Anyway!
We set today aside to focus on the fact that Jesus died to save us from sin. Is it the exact anniversary? Probably not. Does the date on the calendar really matter in the grand scheme of things? Nope. Although we can’t be exactly sure the date this event occurred, it’s nice to have one set aside in recognition. We should be focusing on it everyday, but as humans, when we do stuff daily it seems to loose it’s feeling of being special. It just becomes an everyday thing. Ordinary, even. Once a year celebrations give us the opportunity to refocus on the extraordinary. To help our human brains keep special events special. What could be more special than someone dying to save your life?
Happy Good Friday everyone!

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Frustrations of Dealing with Limitations

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Life at our house over the past month has been rather challenging.  My Mom was just diagnosed with ovarian cancer and lives about two-hundred miles away; so we have moved her and my Dad in with us while she goes through chemotherapy.  Lynn’s Mom has myasthenia gravis and suffers from extreme weakness all the time. She fell while home alone and got pretty banged up though fortunately no broken bones. His Step-Dad was diagnosed this week with lung cancer and has maybe six months to live…and it’s the holiday season.

As the primary caregiver for Lynn, not only do I deal with his physical health but his mental andemotional health as well.  All this bad news has been very difficult for him.  He is angry because he wants to help but is limited in what he can do.  For example, we had bought his Mom an emergency alarm button to wear but she was intimidated by how to set it up and therefore, it was not working when she fell. Lynn had tried to explain to her what she needed to do to start the service but she just shuts down when it comes to technical discussions. Therefore, he felt he needed to go to her house to make sure the system was functioning.  We climbed into the van and, of course, when we get there, his wheelchair couldn’t go inside. (I strongly suspected it couldn’t before we went.)  He was convinced that with the small metal ramps we have, he could get in. I could tell his need to make sure she was safe was over-riding his knowledge of logistics; so we went and I went inside to hook everything up while he waited in the van. His Mom couldn’t come out to see him so I became the liaison between them and made sure his need to see her safe was satisfied.

Now his Step-Dad is dying. His Step-Dad didn’t enter the picture until Lynn was an adult so it’s not the same impact as when his own Dad died with MS when Lynn was twenty but still, he’s known Ben for about thirty years and he is special to Lynn.  Tomorrow, we plan to load up and go to the hospital to see him to essentially say good-bye because we try to avoid hospitals as much as possible during cold and flu season to keep Lynn healthy, I’m nervous about going.  To visit face-to-face versus calling is a choice I allowed Lynn to make because, again, he needs the opportunity to satisfy his emotional needs as well as his physical.

Lynn has really become depressed with all the health challenges affecting our family.  He’s a tender hearted man and though he has great faith and knows each of them knows Jesus and will have a home in heaven, the grief he is feeling over their suffering and uncertain future is difficult for him because he has no control.  He’s trying to control his emotions and not add more to my load but I hear him getting angry and frustrated at minor things as he seeks to write on his book.  He’s sleeping a lot; he doesn’t feel well; he has no patience; and he’s making poor decisions regarding his own health (staying up till 6:00 a.m. while I take my Mom to the emergency room instead of going to bed and getting the rest he needs).  I’m trying to help him cope through humor and helping him find solutions that work for the both of us but I have to admit, my patience is at a limit, too.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-the-frustrations-of-dealing-with-limitations/

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