I'm 20 years old, and this is the first time I've had to deal with something like this. Ever since I was about 12 I've helped care for my mother. She hurt her knee, it never was fully recovered. She was mobile and all, but she still required my help from time to time with daily things such as cooking, shopping, etc. Two months ago she had a severe stroke, she has made a lot of improvement due to rehab, but still requires things such as transfers to her wheelchair, bathroom, bed, etc. She came home with us (I am currently staying with older sister.) And quite honestly it's been hell, I barely get any sleep due to the fact I have to wake up multiple times in the middle of the night to either change her, or medicate her because she is in some pain, it usually results in me sitting up with her 30+ minutes a time till she goes back to sleep. The only times I get any rest are if my sister has enough time from work + her kids to take over for a while. Even then, she is not strong enough to lift my mother on her own, so I still have to help in those cases.
I believe, and so does the doctor, that the stroke has effected her in ways that most of the time I don't even recognize her as my mother.
Problems we are currently having involve;
-Her wanting to eat all the time, she is overweight but not obese, still, for some reason she's hungry around every hour or two and is picky about her food. If we don't comply she tries to guilt us into giving her a snack or something by trying to convince us she is "starving" or "tired of being hungry all the time." Ontop of the fact she doesn't want to follow the doctors advice on what to eat, and wants to eat junk foods a lot of the time.
-Her wanting to go out all the time. Almost every single day she wants to go out somewhere, or if she hears we're going to go on a shopping trip for about an hour she wants to go. This is a problem because transferring her in and out of our current car is an extreme hassle.
-She is very stubborn and impatient as well, so if we want to go on long trips (say a few hours shopping at the mall for the holidays) within around 40+ minutes she gets very antsy and restless and becomes rather rude towards us, at that point our shopping trips turn miserable and we just end up going home.
-She's been having episodes that are on the borderline dementia, if not there already, where she's completely irrational and thinks, also attempts, to do things she simply can't do such as walk on her own, or get out of bed and put herself into her wheelchair. With her current physical state this is not at all possible in any way, we try explaining to her but she doesn't listen.
At this point, it has become too much even for the two of us. I love her very much, and I realize a lot of her mental problems she's having aren't her fault but they are driving me nuts, on top of the physical stress (I am getting very sore all over due to the multiple transfers everyday, plus no sleep) I honestly feel I cannot do it much longer. We are considering multiple options, including my brother renting a house to stay with her and hire a nurse while he's at work, as well as me going over there every so often to help out.
However setting that up, if we do, could take a few months in which case we are considering putting her in a home until then.
Knowing her though, the fact she hates anything that isn't her home, this would be extremely hard on her, and the thought of that is painful. I feel like all this is killing me, so I know I can't do it much longer, but emotionally I'm feeling worse at the thought of having to put her in a home, even if it's just for a while.
What exactly can I do to get through this? I try to do things such as remember all the times she is, quite honestly, being a bitch to us so I won't care, but that doesn't help much. It's just replaced with memories of the times she's nice and pleasant to be around. I don't know what to do.
Since you are twenty I'm guessing that your mother is in her sixties or younger. This means there may be decades of needing lots of care. If indeed she has the beginnings of dementia the amount and kind of care will increase and be more demanding.
Something has to give.
You cannot continue to have interrupted sleep. Been there, done that, and absolutely would not have been able to continue to care for my husband at home if his night-time restlessness hadn't been solved. Perhaps discussing this with her doctor would provide some help. Longer-lasting pain medication, for example. If her nighttime needs cannot be reduced she simply has to be somewhere that is staffed to take care of residents at night. Can she afford to bring in an aide or caregiver for this purpose?
If she lives in a house with your brother and he has a nurse there while he works, who is going to get up with her multiple times a night? Your brother cannot do that and also work. Sorry, it just can't be done. Is there money for both a daytime nurse and a nighttime aide? How old is your brother? Is he married? Does he date? Does he have a social life? Bringing a parent who needs 24/7 care into your life is a huge commitment that could go on for decades.
She may hate anything that isn't her home. But if she moves into a new environment with your brother then that would become her home. If she moves into a care center that would become her home. A move may not be what she'd like, but it sounds like it is inevitable.
How can you get through this? I send you hugs. This is an extremely hard position for a young person to be in. Please do not dwell on the bitchy times. Your mother's personality changes are not her fault and that is not a good way to remember her. But they are not your fault, either, and staying in a situation that is killing you or putting your brother in a situation that will kill him is not going to change her personality for the better.
Keep in mind that you love your mother very much. You want what is best for her. You wish with all your heart that you could provide what is best for her. But she needs 24/7 care. Because you love her you need to be willing to accept whatever will be best for her.
Financial considerations enter into this. What kind of income/assets does she have? Can she afford to bring in professionals so that she has around-the-clock care? Will she be private-pay if she goes into a care center, or will she need financial aid such a Medicaid?
The other thing that you have to accept and take to heart is that placing your mother in a care center if that is what is best for her is NOT abandoning her. You and your sister and brother will visit her often. You will have meals with her. You will take her on outings occasionally, keeping them short to not tire her. You will advocate for her and be sure she is getting excellent care. Somebody else will do the daily care. Somebody else will change her during the night. Somebody else will supervise how much and what she is eating. You and your siblings will continue to be the loving children you are, without the exhausting responsibility for her physical care.
I sincerely wish you well in discovering what will be best for your mother and in accepting your own limitations.
I had to be hospitalized, and guess what? Mom survived. Yep, 95, in the nursing home, and she was doing better physically than iI was. It' a tough battle we have ahead of us because she was diagnosed with Lewy Body Dementia. JeanneGibbsl gave me some great advice, and as I see in the above posts, she gave you some great advice too. Take it. These new friends of ours have been through it. You're young, and obvisouly a very loving, kind person. You are a good daughter, and the only way you will be able to carry on without breaking and resenting is to get break. If your mom is being cared for by professionals, you will be able to see her and spend more quality time for her. I still can't come to grips that my mom most likely won't be coming back here to live (see, I have to still say "most likely"). I'm still not ready to face that, even tho I know it's reality...but I have been able to bring her home for a visit, and it was a positive thing. It's been 10 months already, but this takes time to adjust. I do have peace of mind though....and for the first time in my life, I'm able to leave her in capable hands and not worry when I see my daughter or my grandchildren. Everytime I left my house, when I returned I wondered if mom was going to be alive. Horrible way to live. I don't want you to spend the next 36 years like that! Please, keep us updated. You're cared about very much!
I'm in the same situation myself, mostly, but just not at the stage where putting Mom in a facility where someone else will be caring for her is necessary just yet. (But it's getting close to that point. By the time it gets to that point, I don't think she'll really know much of what's going on since she has been diagnosed with dementia and Alzhemier's. She's not bad yet, but when it reaches that point....) I don't really have enough time to take care of myself anymore (again). When anyone reaches that point, it's dangerous territory. Like you, I know what I'm facing and it's not a happy decision--until, the person you are caring for is situated is a place that is going to be obviously good for them (proper care, proper food, proper physical therapy, etc) you suddenly discover, "Dang, I have time now to take care of me today!"
I also strongly suggest finding a caregivers group. Online caregiver groups are very beneficial, but I'm of the opinion that personal contact is much healthier. (the hand on the shoulder, they sympathy in the eyes, the hugs) It's real stress reliever and you will also find that people in the same situation can give you very helpful advice on how to handle situations as well as leads to where you can find help. They can tell you what local facilities they think are the best. Their opinions of which doctors are best for dealing with alzhemier's and dimentia is very valuable and will save you time. Word of mouth really is best.
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