My mother suffers from dementia and has a very short term memory. She's miserable and this dementia is taking its toll on everyone. Any advice?
I live with her and we have only lived in this town for a couple of years. My brother also lives with us. We don't live near any relatives but even if we did the small number of the living ones have their own problems. I am recently divorced and feel at times extremely lonely and overwhelmed with caring for my mother 24/7 unless we get a caregiver to stay with her. She absolutely hates it when both of us (My brother and me) go out together. She hates to be with anyone except us. My life has changed so drastically in only a short time and with living in a new town strange to us at times feel like I'm living in the twilight zone. Feel we made a mistake moving here at times but I really don't have anyone to be with anywhere. My mother had a Tia over a year ago and she lost so much mobility that she needs help with almost everything. Lately she hates to take her medications a lot, mostly her morning ones, and I have to sit with her for longest time while she spits her pill out and keeps going on until she takes all of her pills. Seems as day goes on she can take her pills more easily, but she needs her morning ones, too. She does have some better days where she will take her morning meds with little trouble, but lately seems more bad mornings than good. I have been feeling I don't have much time for myself and this is very depressing. I have made some friends here and I could invite them over to socialize but feel so exhausted most of time for that. My mother has been the best mother anyone could ask for and now I feel like I need to be here for her. Don't want to put her in a NH. She would be miserable and lost there. Guess I'm just venting now and really don't know what advice I really want but just know I would love more time for myself but feel like I'm trapped here. It's very depressing seeing my mother as she is as she's changed so much in the past years. She's miserable and this dementia is taking its toll on everyone. Any advice welcome. Thank you.
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There are a few other things that might make this transition to full time care giving a little easier.
First, I suggest you contact your Area Agency on Aging (AAA) and inquire about what programs/support your mother may qualify to assist in home care giving. Even a few hours of respite care a week can make a huge difference in everyone's life quality. You may be able to get past your mother's resistance to non-family care by emphasizing how much you would benefit from being able to attend to some appointments instead of how much she needs care. An adult day care program can provide your mother with socialization opportunities as well as providing you a respite. Apply for Medicaid as soon as the AAA social worker believes there's a chance your mother might qualify; there are some helpful in home care Medicaid benefits and when already qualified facility placement (even for just a respite stay) is much easier.
Second, I suggest you consider and evaluate MC options. The AAA social worker can help you determine funding sources. Your mother's home may be exempt from Medicaid, but if you and your brother still want to live there you would need to pay all the bills, including taxes and insurance, as mother's income would go toward paying for MC. MC is better than NH for people that still have the ability to socialize and express their wishes and don't need IVs and other actual nursing care. We had great difficultly getting my father with vascular dementia to take his medications too. The MC staff was able to gain his compliance and he actually improved and remained stable for a couple of years in MC. We also used MC for brief (1-8 days) respite stays before his full time placement.
Third, as your mother's dementia progresses there is a great likelihood that she will eventually need 24/7 care beyond what you can provide. Anyone who has experienced TIAs is also at risk for a major stroke. Starting evaluating NHs and develop a plan to pay for it.
Please remember you need to take care of yourself to be able to take care of your mother. Develop some method of coping with the stress and taking a little time for yourself even if it's only 5 minutes at a time. A cup of coffee on the porch, reading a few chapters from a good book, a soak in the tub, or a lunch with a friend (good activity during day care) can reduce your stress level as much as (or more) than venting here.