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As a married couple we moved around the country a bit. A few years here a few there. Never thought I'd regret it but here I am. No family within 1000 miles. No close friends after 12 years here. My sweet wife and I were always together. Gardening, crafting, building, playing. Now she barely knows me and I am alone with her. I'm 73 and healthy. She's 66 and just as healthy physically. Diagnosed about 3 years ago she has gone through various stages from crying to confusion to no short memory whatsoever. Can't even understand or complete a sentence. Watches cartoons all day because anything else agitates her. Luckily after the first few months of turmoil she finally sleeps well as do I. Can't be gone from the house with her for more than an hour or so. She hallucinates about her worried parents, one of whom is not alive. She is living in a mixed up fantasy world somewhere between childhood and the latest TV show.
Which, I guess, brings me to my point. Caregiving is a lonely task at the best of times but isolated from anyone significant to me has made it extremely so. I have learned not to expect thanks. There is no one to thank me for the long lonely days of chores and caretaking. It is thankless except for knowing it is far better than many others suffer and certainly would be my choice rather than having my wife taking care of me. My fear is my death before hers. My only daughter has already told me she cannot and will not do what I do. She tried for a month two years ago when I had to be hospitalized with pneumonia. She will not put herself through it again. What to do. What to do.
Can you hire someone so you can get out once in awhile? My mom is gone now but I remember that feeling of being deserted. I'm pretty sure that a lot of lone caregivers do. Do you post on the caregiver thread or the spousal thread? I really hung out on the boards quite a bit during those times. It kept me partially sane . I did actually have an emergency person or two but I do have family around. Have you considered moving into an assisted living community? Many people do that with a memory care wing attached.
This is worrying me more and more. A new lady in my support group appears to be in her 80's and her husband is at the stage where she's helping him with his shirts and buttons.
I asked her if she has family nearby.
She said, "Yes, but I don't want to bother them. They work full time."
It's sad and not right. More and more people with this type of responsibility. It truly is exhausting. It's not about the caregiver at all.
I saw one of LickityGlitz's posts where she says, "the caregiver does not get any respite no matter what" or something like that she said.
It's true. We just don't.
I agree Ruth. If their in a facility, you worry, and you still advocate for them, and try calming them when they get upset. It's a 24/7/365 mind game.
My situation is so very similar to many of the foregoing posts, except I have only a couple of years of caring, so it is most distressing to have our desperate straits confirmed. As so aptly stated, caregiving under these circumstances is 24/7/365. It is an 'occupation of love' vs desperation, with professional help being SOOOO expensive; and often not available in some smaller communities. My heart goes out to all of you. But, take heart, a 58 year love story does not die with Alzheimers, so we soldier on in our 'new occupation and that love bouys us up and carries us forward to the inevitable, when perhaps the initial loss will be worse than the current nightmare -- but loss has a way of dissipating and leaving a peaceful calm in its wake, thank God!
Blessings and good wishes to you all this Christmas season.