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This disease finally made me cry
Caregivers: Dementia | Last Active: May 18 11:32pm | Replies (16)Comment receiving replies
Thank 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.
Replies to "Thank you so much for the very supportive and thought provoking messages! I am past the..."
@memoriestomoments It sounds as if you are doing everything possible to alleviate Gary's discomfort. He is blessed to have you at his side loving him and doing what needs to be done. It is a really difficult situation for you as well as him because there is no care plan that fits every dementia patient and their specific issues. It is a trial and error mission. I think it is not unreasonable to hope to find a medication that will relieve his pain but it may come at the cost of sedating him which may help with the sleep situation. It might be helpful, if you are not already doing this, to keep a log with the help of the watch, of how much sleep he gets each night so you can share that with the gerontologist and neurologist. Also his level of discomfort as best you can determine with his help. I think it must be a simple scale, not the 1-10 we use in the medical field. Maybe a "little discomfort/pain", "more than a little," and then "a lot." He may not be able to grasp what you are saying if his cognitive function has
declined. With my husband I have to use visual clues to get my question/message across
because his ability to grasp the meaning of what I am saying has declined. He also has chronic back pain for which his pain management physician has prescribed hydrocodone 5mg/acetaminophen 325 mg. It seems to be an effective dose. I would also include the location and approximately how long it lasts. Anxiety is a common symptom of dementia since I think the person feels on some level that things are not right. He may not be able to express it and that causes his distress and anxiety. I think consulting with the gerontologist is a good idea. She/He may have more insight as she/he deals exclusively with older people among whom dementia is increasingly common. With dementia, more accurately called brain failure, the entire brain is failing. Which areas will be affected first may vary from person to person but they will all at some point be diminished. For example, my husband has lost his peripheral vision and now has what is called binocular vision, he only sees what is directly in front of him. I know that at some point he will stop eating and drinking though he may have swallowing difficulties before that. Right now he chokes sometimes when he eats. He sleeps all day, only gets up to go to the bathroom. He will begin to sleep more, eat less and have a harder time communicating. My plan is to make everyday that I still have him count. I give him pain medication whenever he says he has back pain. Sometimes I have to ask him "how is your back today?" because he will not tell me if I don't ask. I tell him every morning that I love him and he is the best thing that ever happened to me. I also reassure him that I will always be at his side and together we will face what ever the future holds. To me the quality of his life is my top priority, not the length. I have a pretty good idea of what will happen because of previous end of life caregiving for my parents and have been an RN for over 50 years. I know that I can handle the physical caregiving but the grief and loss of the love of my life will break my heart for sure.
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@memoriestomoments
Yes. We have to "go on with love"--even if we reach a point of exhaustion when we feel more like we are "in hate" than "in love."
My George's moaning and groaning--and yelling and screaming--throughout the night (and upon waking) pushes my buttons. ...but I am always able to recharge by coming to all of you who post on this Forum. I especially appreciate the support of people like jehjeh @jehjeh (who continue to support us after the lost of their spouse) and shmerdloff @shmerdloff (who isn't even a caregiver of someone with dementia).
Namaste,
Lilly (George's Wife)