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Introductions: Are you caring for someone with dementia?
Caregivers: Dementia | Last Active: Mar 17 6:30pm | Replies (762)Comment receiving replies
Welcome to Connect @pearlandpeacock. @julz just joined our community of caregivers today too.
Julz, great tips about moving your mom to your home, about music and giving her a view of the street activity and so much more. Interesting that in sharing these ideas you put into action help you realize how adept and creative your are. That is the power of writing and sharing in a community like this one. We can so often get caught up in the constant reacting to the needs of the person that we care for that we overlook our accomplishments, especially since the needs constantly change.
PearlandPeacock, you'll have read in this discussion that a few other members like @IndianaScott @lindabf @rmftucker and @macbeth have experienced a long period of their partner being undiagnosed and denial. Has your husband now been formally diagnosed? You have a great group of people here who understand the frustrations. Please feel free to share and vent as needed.
Replies to "Welcome to Connect @pearlandpeacock. @julz just joined our community of caregivers today too. Julz, great tips..."
Dear pearlandpeacock,
Thank you for sharing a bit about your situation. I did want to express my concern about your husband's "going out". It seems as though, if he is turned around in your own home, that your husband will most likely become "turned around" in any setting, including a extremely familiar neighborhood. I understand completely having to deal with the frustration he's expressing at your wanting to know when and where he's going...but, there must be a way of "allowing" him some freedom in a setting where he won't become lost. I even wonder if you could follow him from a distance? This is a difficult season when the person with Alz. still wants some independence and freedom, but really doesn't have the ability to understand their limitations... I'm wondering if anyone else has suggestions about your situation?
Hello @pearlandpeacock Nice to e-meet you here. As @colleenyoung said, I am Scott and while I am NOT any kind of medical professional, I was the primary caregiver for my wife (in our home) for 14+ years as she battled brain cancer with many symptoms of dementia and the last two being home hospice. I was also a secondary caregiver for my MIL, who had frontal temporal dementia for 20+ years.
First I wish you all strength and courage on your journey. It is not easy nor for the faint of heart, but you will find strengths you never knew were inside of you! Challenges will abound and some, or many, will exceed your strengths so do not feel bad when those happen nor expect to be able to 'do it all'.
Many local Alzheimer's Association state and local chapters offer a tracking option or local police offer grey registration for seniors with dementia. If you husband is advancing, his being out and becoming disoriented could be sudden and overwhelming. Does he have a medical alert bracelet so others might know? I do not know your geographic locale, but if it is big city or transient neighborhood, you may want to watch for someone taking advantage of his condition.
It may be worthwhile remembering that as one of our senses becomes compromised others can become more highly acute. This can cause changes in awareness, hearing, etc. during times of physical changes or mental adjustments.
My wife lost her stereo hearing so locating where sound was coming from was an early challenge for her.
While your husband may say things are feeling like a prison, you will need to be a bit of a warden for him. Your knowledge of what is safe and 'doable' will not always match his.
I wish you strength and courage!
Connect
Thank-You. Yes he has been formally diagnosed and tested. He is on Aricept and Mementin. There's something experimental, AZT-100 or something, I'd like to get him in that program. He can still draw the numbers on the clock test reasonably well, but not the hands. He is scoring 18 now, middle stages. Other than the Alzheimer's he is in good health. He is still continent. The doctor said I should put him on the list for long term care home as the wait for nice ones can be awhile so I did. It is hard, but I couldn't handle him if he were incontinent.
I told him to tell me if he's going out, and where, he said if he has to tell me his every move it's like jail! I get it, I imagine it would be. So far he doesn't go very far, just around the block.
As others have said, weirdly, he likes small children. Well, I guess their mental age is like a child. He gets disoriented in our own house. It's strange, something about orientation in his brain is gone. Oh, and the time clock, gone.The doctor said that's memory! He makes childish comments, likes hot dogs and breakfast cereal and ice cream. But I want someone adult to talk to, thanks for the forum.
He follows me around, and if he loses sight of me, he has to look around, 360 degrees, till he spots me. But he can hear where my voice is coming from. That time he lost facial recognition of me, I said can't you recognize my voice, he said yes. He has always been very emotionally distant, very shy, and that personality trait doesn't help. I said to the doctor sometimes it's hard to tell what's just him and what's the Alzheimer's. Yesterday he started passionately cuddling me, kind of like normal, LOL!, but I realized it was part of his long term memory.