There are a lot of responsibilities and consequences in being a caregiver that I don’t like; things I would prefer not to do or which are difficult to manage, but the biggest challenge I have is lack of sleep. I think that if I had time to sleep more, my life would be a lot different.
Typically, I get five hours of sleep a night. If I were to have an opportunity to sleep through the night without interference, I would probably naturally wake up after nine hours. Nine hours is more like the “sleeping in on Saturday morning” days I remember back before children and back before Lynn became disabled. When I was going into work in the days before Lynn became immobile, I usually got eight hours and certainly at least seven of sleep a night unless someone was sick or we had been up for some special occasion. I remember those days fondly. I felt good. I had energy. I felt rested and refreshed when I awoke each morning ready to take on the day.
I miss those days.
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Often when I meet someone who has just become a caregiver, they ask me how I do it; “How do you handle the daily stress of working and caregiving full time while still managing a home?” I always reply, “I try to take it one day at a time and just deal with what’s happening that day.” Pearls of wisdom, right? Well, I’m here to confess, I apparently don’t deal with stress very well so I’m not sure that I should be giving anyone any advice on this subject. I’ve been caring for Lynn full time since 2009 and I can tell you, it’s starting to take its toll. Here’s my confession.
I do not take things one day at a time. I try to but I’m not very good at it.
continue reading at: https://multiplesclerosis.net/caregiver/confessions-of-a-stressed-out-caregiver/
I’m sure you have heard others reference the saying “turn lemons into lemonade.” It implies taking something bad and turning it into something good. Our pastor challenged us to think along those lines but with a different twist. When something has you down or something bad/inconvenient happens, try thinking about why that’s a good thing. I have to admit I have difficulty doing that much of the time but each day I try to think of at least one thing good about that day, be thankful for it and share it on my Facebook page. It helps me to, at least once a day, think of something positive. I’ve been pretty negative lately because Lynn and I have not been feeling well and I’ve spent three weekends in the last two months in the emergency department without any answers regarding what is causing me to have abdominal pain. I know it’s nothing serious but I don’t know what it is and I’m getting tired of it. Anyway, I’m also tired of being so negative. Therefore, my post today is my attempt to take this challenging period in our lives and make it into something positive. Here goes….
I am blessed that I have been in the hospital three separate times for three overnight stays because it has allowed my family and I now to have a trial run on what we would do if I was sick for longer than overnight.
continue reading at: https://multiplesclerosis.net/caregiver/blessings-from-pain/
Someone asked me recently if I had ever written about how we adapted to Lynn’s loss of function in his hands. I haven’t but it’s a topic that might be helpful to some so here goes.
Lynn’s loss of the use of his hands gradually progressed over time; I’m guessing maybe 3-4 years; with the loss being a generalized weakness initially to the point now that he has no strength to speak of in either hand; almost no function in his left hand/arm and minimal in his right hand/arm. I think he started noticing a decrease in responsiveness about the time he was diagnosed in 2006 because I came in one day to see him comparing the speed at which his fingers would move between the two hands. It was that sight that made me realize that his weakness was not just in his legs. I insisted that he see a doctor because no longer could he insist it was just his sciatic nerve. As I told him, sciatic nerves do NOT affect shoulder, arm, or hand movement so it was more likely to be a problem in his brain or upper spinal cord. He agreed and so came his first MRI and the diagnosis of MS.
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About this time last week, I was experiencing discomfort in my abdomen. As the hours progressed, the pain got worse until eventually it was so intense that I was vomiting. Unable to sit up, I was lying on the floor moaning in pain with no access to help within reach. Fortunately, Lynn heard my moaning and used his emergency response button to call for help. The dispatcher was able to summons the rescue squad and contact my daughter to come to our house to stay with Lynn until his son could arrive to take over (she has a special needs child she had to get home to before her husband left for work).
As I lay on the floor in agony, what was going through my head? I need to find a break between vomiting to put a Foley catheter in Lynn or his bladder will become too distended. I waited for my next break after vomiting and while doubled over, collected catheter supplies and inserted it before I was unable to remain upright again. At that point, I was able to focus on me.
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With Relapsing Remitting MS (RRMS), Lynn would have an exacerbation that could last days or weeks, but he would return to “normal” at some point and nothing much changed. With Secondary Progressive MS (SPMS), he stopped getting better. He happened to be in a clinical trial at the time he transitioned to SPMS so he was seeing his doctor every three months and getting the full court press evaluation. We started noticing that his scores were getting worse over time without any evidence of having had an exacerbation. He was not walking as far and his strength was less. Response times to questions got worse and overall he seemed to feel worse most of the time. That’s when his doctor decided his MS had changed from RRMS to SPMS and we realized we needed to look into making changes in our lives.
We were not fortunate enough to have a comprehensive approach by his doctor to managing his MS. His doctor is a neurologist and he does not offer guidance on his care or alternate treatment measures; just on disease treatment. However, when I would bring something up, he would make referrals to other resources. His physical medicine/rehabilitation doctor has probably been the most helpful. He arranged for Lynn to be measured for a power chair and he’s talked to him more about dealing with his other losses and some measures worth considering in either preventing further decline or improving overall health.
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