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This disease finally made me cry
I'm pretty emotional. I cry when watching movies and reading articles and reading posts. But I have shed just a handful of tears in the 16 years of my husband's life with Alzheimer's. I chose to view it not as a tragedy but as a new condition of our life. I focused on what I could do to make his/our time as wonderful as possible. But in the past week, things have changed dramatically and I am a bit stunned, and so sad.
Until this year, we lived with slow cognitive decline. This year the disease has started to affect his physical systems. Here is the parade of health events: A seizure, a bad month of anti-seizure medication, ER for what turned out to be Myoclonus (involuntary muscle spams or jerks), two unprovoked falls, a bout of cellulitis, another seizure. despite these we were doing well. We were still attending community events, taking little walks, laughing. With PT his posture was good as was his ability to stand and sit. Then the myoclonus came roaring back, this time so frequent and strong that it wakes him up, preventing good rest. The latter surfaced a week ago. Last Friday, he was uncharacteristically subdued, tired, and was bowed over and extremely hesitant to walk.
Our wonderful neurologist recommended that we try a different anti-seizure medication that is known to help with myoclonus, Brivaracetam. I had decided before this that I would not put him on any anti seizure drugs because the first one we tried, Keppra, had such a sedating effect on him. But now I was faced with his real discomfort (he exclaims, "oh!" or " Oh no", in response to the larger myoclonic spasms) and the secondary effects on his ability to engage and his mobility. So we started the medication on Monday.
The myoclonus is significantly better, but still causing him to wake up. He has become progressively more sedated, He does not have the energy to be himself-- loving, cheerful and engaged.
Today he slept almost all the day and was barely able to walk. Unless the sedation effect subsides, it looks like I will have to choose between having Gary in discomfort and tired from the myoclunus, or sedated, minimally communicative, and soon non-ambulatory from the medication. The most heartbreaking part is that I am having to administer the very substance that is sending "him" away, making his spirit inexpressible.
Has anyone had experience with these anti-seizure meds? Do the sedation side effects diminish significantly over time?
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I am so sorry. And wish I knew something about these drugs. To have 16 years with him, where he could at least walk, talk, engage, and be "your Gary" even with Althzeimers, makes me cry for you and all of us, destined to have some similar fate, in the various stages of this awful disease.
I'm not a doctor, but can they give him a lower staged dose, or try another less powerful drug, that helps his spasms but doesn't totally immobilize him. I pray for you and for every caregiver and loved one going through the same thing. Sending love, prayers, and a heartfelt happy mother's day- caregiving wish to you. 1 Corinthians 16:14: "Let all that you do be done in love." It's obvious your Gary is blessed to be in your's and God's hands. Best, Karla
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6 Reactionsmemoriestomoments @memoriestomoments
I read your post this morning, and my heart aches for you.
I pray that you will have the fortitude to continue to care for your Gary with the same devotion and love with which you showered him for the past 16 years. He is still your Gary, just not the same "loving, cheerful and engaged" man you married. Now, you have to be that way for the both of you, even in the darkest moments.
We caregivers have to try to find the holy and the sacred in between the storms. Keep posting, keep doing what you love, and do--with love--what you don't love doing. "Love is the only engine of survival." -- Leonard Cohen
George's Wife
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6 ReactionsMy husband was recently put on Aricept, I understand your concerns about medication? It is hard to decide what medication they should be on? I hate having to make these decisions and just hope I am doing the right thing? I spoke to my girlfriend’s husband who has Parkinson’s and RA and asked if he had dementia would he want to take the pills and without hesitation he said yes, so that made me feel better.
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4 ReactionsIt is so hard to know for sure what the best choices are with this disease because everyone's symptoms and reactions to medications can be so different and unpredictable. Unfortunately the dementia in our loved ones does not come with a user's manual. I think all you can do is try what the doctor suggests, and be open to trying different medications in the hopes that you will find something to allow your husband to be comfortable. When my husband was first diagnosed with dementia he was given mementine(sp), that in combination with another drug I can't remember now caused him to have hallucinations at night. So I stopped giving it to him immediately and informed his doctor the next day. I totally understand not wanting to lose your husband to the sleepiness that you feel the medication. At this point in my husband's journey, he sleeps all day and night. The only time he is up is to use the bathroom and when we get him up to eat. His cognition is at the point where he cannot carry on a conversation. So very sad.
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2 ReactionsThank you so much for the very supportive and thought provoking messages!
I am past the shock stage.
- Indeed I have gotten approval from the neurologist to start with a lower dose (By the way keep in mind that this kind of dosage adjustment is much easier when you buy the liquid form of a medication -- not all of them have one, but it is worth asking!)
- I have a video appointment with Gary's gerontologist to get her take on what I can expect going forward. I wa snot going to talk to her, because she has been deferring to the neurologist this year. But a friend who used her when my friend's mother had dementia recommended that I call the doctor specifically to draw on her vast experience with similar cases. My friend said that when the end approached, the doctor was able to tell her what woudl happen in detail . I would love some perspective on whether there is really hope of turning Gary's current discomfort situation around or if we are in a spiraling decline.
- I sourced a walker and a wheelchair and another shower chair so that we have somewhere to sit him down wherever we need to do so.
- I put the Apple Watch on him to track all that sleep. Very informative! I foudn out that he is actually waking up a lot. In addition, he is having absolutely no REM sleep or deep sleep. That explains part of why he is so tired during the day as well
- He is still groaning and exclaiming when he wakes. Since the involuntary movements are less frequent it may be anxiety , which is also a side effect of the medicine.
We go on with love.
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1 ReactionMy husbands doctor increased his Aricept to 10mg it was 6 days he was dreaming in his sleep and last night he got up went in the garage and was looking for his truck which we no longer have. So it looks like it’s time to hide the keys thank goodness we have an alarm. Dr said to go back on 5 mg I didn’t realize the side effects and how long it takes to get off it?
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3 Reactions@jeanadair123
Well I guess we all have learned that we should:
1. Discuss the side effects with the doctor when she/he prescribes the medications. Our neurologist was very honest. He said 5% of the people who took it had side effects. But that obviously those statistics do not mean any thing oto you if you are in the 5%!
2. Ask how long it would take to let the side effects subside (if they do_
3. Ask How quickly you could take the person off the medication if needed. Some you can just stop and some need time to wean off.
Thank goodness there is some of this info on the internet. -- but be careful about the sources.
I sure hope that the experience was not too distressing for your husband. He must have been surprised about finding no truck!
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