Family caregiver

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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The Many Faces of Care

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As a caregiver, I understand that my role involves providing a lot of physical care.  For any caregiver, how much care is provided depends a lot on how significant are the limitations of the one for whom you’re caring. For me, the physical demands are many because Lynn’s physical limitations are many. But, in addition to providing his physical care, I also need to provide mental, emotional, spiritual, and social care.  The physical care is pretty consistent in that I know in advance what I’m going to need to do for him and how to do it; however those other “care” needs are more unpredictable.
Mental and Emotional Care
We’re pretty lucky in that so far Lynn’s MS has not affected him mentally in any significant way.  He has had periods of depression and is in fact, on an anti-depressant to address that problem.  When he first became depressed, I didn’t catch on right away to what was happening.  I expected him to be down; after all, he had gone from being a very physically active independent person to someone totally dependent on others to provide for his every need. He had a right to feel frustrated, angry, discouraged, afraid, sad, and any number of other emotions.  Plus, he just felt bad. Since he had so many legitimate emotions that were healthy and normal for anyone going through what he had to endure, I didn’t catch on to the fact that his level of depression was growing deeper and deeper. When I did finally catch on was when he started making statements such as, “Why bother (to exercise); it’s pointless anyway.”  “What am I any good for anyway?  All I am is a burden.” He also stopped eating, stopped being interested in any decision making and seemed totally disengage from his life. Suddenly, I had that “ah, ha” moment and got in touch with his healthcare provider to get medication to help.  Fortunately, it did.  For the most part now, he manages depression pretty well and doesn’t go into long periods of being down, but it’s something I look for all the time.
In addition to depression, he has a little forgetfulness but he’s lucky; he doesn’t really experience the memory issues that many with MS battle every day.  He occasionally needs a reminder but most of the time the memories come back with a little prompting.
Spiritual Care
I believe that we are spiritual beings.  I know that, for Lynn and me, we count a lot on God for meetings our needs.  We look to our Lord and Savior to carry us through a crisis and to look out for our needs.  Our spiritual side is what keeps us going, what provides our comfort, and is often what restores our hope. Therefore, it is essential that I factor in that he needs spiritual care as well as physical care.  When there are no viruses or other contagious bugs in the air, he goes to church; however, during the winter months, that’s too risky…too much flu and other nasty bugs to be shared.  Therefore, it takes more effort to maintain the spiritual side of life.  Lynn has CDs that he listens to which bring God’s word to his mind and helps him stay connected to his faith.  In addition, he listens on line to the actual sermon presented at our church.  We also have many discussions about our interpretations of God’s word and how Jesus’ teachings affect our lives. It’s a very important part of his care to help him meet his spiritual needs and is why I feel he has been able to avoid greater bouts of depression.
Continue reading at: http://multiplesclerosis.net/caregiver/many-faces-of-care/

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Stages of Caregiving

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I have not always been a full time caregiver.  As I look back over Lynn’s journey through the maze of MS progression, I have had different roles along the way.
On the Outside Looking In Role
For several years before he was diagnosed with MS, I watched his symptoms develop from afar. He would mention an occasional problem with foot drop or weakness in his leg. I would recommend he see a doctor but he assured me it was “just the heat” or “sciatica from sitting on his wallet.” Knowing his father had MS, I would suggest he see a neurologist and he would always say his doctor had ruled that out as a possibility. It was evident that the suggestion of possible MS was not an acceptable one and that I should keep my opinions on that subject to myself.
The Interferer Role
Gradually, the symptoms occurred more frequently and in more areas of his body.  I watched and could no longer stay silent and insisted that I start attending his medical appointments so I could understand what was happening too.  He didn’t want me to come but after a heated debate, he gave in.  He shot daggers in my direction when the doctor asked him how he was doing and I piped up to contradict his, “just fine,” to say he was not fine but was having trouble etc., etc., etc.  My interference lead to a referral to a neurologist, testing for MS and finally, the dreaded diagnosis.
The Researcher Role
Still unwilling to talk about MS, Lynn needed information; however, he was afraid that if he learned what to expect, he would develop all the symptoms he heard about and would become an invalid like his Dad. Where I picked up all the handouts available in the doctor’s office and promptly started an internet search, he removed the materials from his sight and had me shut down the websites if he caught me reading them.  He didn’t want to hear anything I read and absolutely did not want to discuss it…but, he needed information.  I learned to just wait.  He eventually asked a question here and there and soon I would happen upon him reading an article on the web. I implemented some of the things I read; asked questions about others at the doctor’s office and eventually helped him obtain the information he needed in the way he needed to receive it.
 
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-caregiving/

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Caregiving From a Different Perspective

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Each of us filters information through our previous life experiences. Through those filters, we evaluate comments made and inferences perceived and eventually make conclusions based on those filters. We also tell ourselves stories about what we see and hear based on those filters and it’s through those stories that our emotions are generated.
That being said, each of us will read a blog and get something different out of it. We will pass judgment on the writer and the content based on where we are in life and what we believe to be true at that moment. As I have been writing my columns, I have had a growing concern that what I share may be misinterpreted or may even cause pain to readers who take in what I share from the point of view of someone who has MS. When I share my “story,” it’s from the point of view of the person who cares for the person with MS. Essentially, I have MS by association. I do not have the muscle weakness, the spasticity, the loss of functioning, but I have equal impact as my husband’s full timecaregiver. I do not for a minute think I have it worse than he does. I could walk away from this situation (though I choose not to), but he cannot. My image of myself, my career choices, my plans for the future are not made based on my own limitations but every choice I make, I make with his limitations in mind.
I pledged to Lynn before God and our families that I would love and care for him in sickness and in health. I meant it. I never considered leaving when his condition deteriorated to the point it is now. I want to take care of him and I put his needs first in everything I do. I feel it is a privilege to be able to give myself over to the care of my husband whom I know would do the same if he could for me. However, that being said, this life is not easy. It’s incredibly difficult. I, alone, am responsible for ALL his needs. He only has use of his mind and his left hand and arm (and that’s before lunch each day; by lunch time, he can’t use them anymore either). I have people who come in and help me for a few hours during the day so I can continue to work full time from home. However, they do not provide for any of his physical care other than to feed him. Don’t get me wrong. What they do for him saves me a lot of time and allows me to focus on work during normal work hours rather than late at night; however, if there is a problem, I still take care of the fix.
Though, I have pledged to care for Lynn and do so willingly, I get frustrated. I get angry. I get depressed and overwhelmed when he feels bad and demands more attention that I have the energy to give.  When he asks me to adjust his inflatable cushion so that his bottom doesn’t hurt, he expects me to know, I guess by instinct, whether to add more air or take more away. He can’t tell me what to do. He looks to me to figure out everything he needs and while I understand that after he’s sit for a long time on a cushion till his bottom is either numb or painful and he can’t “feel” it anymore, it’s frustrating to be called away from cooking or from participating in a conference call while working so that I can provide a fix that I don’t know exactly how to provide. I am very adept now at cathing him while discussing highly sensitive issues during a conference call and balancing the phone with my head while I use my hands to do a sterile insertion. I often have food cooking on the stove, while I’m scratching an itch somewhere on his body and formalizing a response to an issue to give when I can get back to my email. I get angry when he sits there watching TV while I administer to his care, I finish up to leave with my arms full of supplies, and he says, “Oh, before you go I need…” I get depressed when I ache all over because I’m coming down with something, I’ve had 4 ½ hours of sleep, and still have several jobs to do and all I want to do is lie down and rest but I can’t. I get depressed when everyone from work gets to go to conferences or gets “atta boys” for what they do and I don’t because I have to stay home, out of sight/out of mind, and I feel unappreciated. I admit, I do a lot of “poor pitiful me” self-talk before I even realize what I’m doing which is unhealthy.
continue reading at: http://multiplesclerosis.net/living-with-ms/different-perspective-caregiving/

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