FTD is confusing, even to the experts, often leading to misdiagnosis in fact. One of the confusing things to me is sleep patterns, or lack thereof. In researching this topic, I find two extremely different complaints.
The first is, especially from a caregiver's prospective, the difficulty in establishing sleep patterns. This is vitally important for the sanity and health of the caregiver. I have found no real explanation for this symptom, just possibilities. The possibility that, due to lack of interest or the ability to do much, the person with FTD may tend to nap often, even just a lot of tiny maps only lasting a few minutes, which can disrupt the sleep patterns. One things I have noticed, just from reading caregiver comments here and there, is that part of the complaint is that the person with FTD and the caregiver don't have the same sleep patterns. Part of this could be explained by the "Sundowner Effect." This is the effect that sundown has on anyone with dementia, extremely common with Alzheimer's. Once darkness descends, the person with dementia begins getting quite agitated and it becomes more difficult to focus on anything. This leads them to go to bed because they don't know what else to do. I watched this pattern in my mother as she progressed through Alzheimer's, so I know for a fact that it happens. I would think it would be pretty difficult for most caregivers to end their day when the sun goes down.
Coping suggestions that I have heard about or read about are to keep a set schedule, exercise, control of diet and assure plenty of fluids. I find this almost amusing since those are all things most of us with FTD struggle with anyway... we sometimes have trouble swallowing food, and loss of bladder control over night is a big problem and drinking a lot of fluids before bedtime would not make that one easier to cope with! One of the best suggestions that I have repeatedly seen is for the caregiver to find a family member or friend to "sit" with the loved one a couple nights a week so the caregiver doesn't get totally worn down. Now, this makes sense to me!
The second sleep issue is just the opposite and the one I experience nightly. I seem to need more and more sleep. I am currently sleeping up to twelve hours a night and still need a big cup of coffee to get me going. This problem seems much easier to deal with by just getting enough sleep. One of the biggest problems we have with it is synching my schedule with my husband's. In the evenings, I am too hyper to go to bed early and end up not going to sleep until around midnight. That means that I don't get up until 11 a.m. or noon. It is pretty difficult to schedule appointments when you only have the afternoons available. Plus, my husband tries to keep his activities on the quiet side so that I can sleep in the mornings. All the "solutions" I am offered is more medication. That is one thing that I refuse to do. The only FTD-related medications I take are two for depression and anxiety, one of which also helps with sleep, and a very low dose of a sedative only when I get very agitated. I seem to use this when I need to ride anywhere in the car that takes longer than a few minutes.
Obviously, even though I have researched this topic pretty well, I don't have any answers. All the answers I find seem to me to just be common sense things that we are probably already doing anyway.
On to a totally unrelated topic... last week we attended a family reunion. I was so proud of myself, didn't say or do anything inappropriate and had a really good time visiting with cousins I rarely get to see. The problem came when it was time to leave. Even with my cane, I could not walk up the driveway to get to our car. My husband, God bless him, and I don't know how he instinctively knew to do this, walked right up behind me and walked. He held on to both of my arms from underneath, below the elbow, and moved his feet which seemed to trigger the impulse for my feet to move. We shuffled, but it worked. When my mom was in late stages of Alzheimer's she could not walk and one of the caregivers at the assisting living facility would walk backwards in front of her, holding her much the same way and would keep saying, "Come on now, Alice, let's dance!" I wanted to include these experiences in my blog, hoping it might just help others. Now, I DO wonder how many people at the picnic thought I was drunk! That must have been some potent water I was drinking...
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