I guess I'm not alone with this problem. I'm the one with all the responsibility for the well being of my parents. I too feel like an only child. I have a brother and sister-but their backs are turned and here I am. My husband has had to hear my venting - sooo I think I have found the perfect place !!! My Mom has MS and my Dad has some dementia going on. I recently was able to get them into an Assisted Living. (Had to do this alone-very hard on me). I am mad at my brother and sister for leaving this up to me. My sister lives far - but doesn't work. She came recently for a few days and left. She is like in the Bible: Has already recieved her reward. She makes sure to toot her horn always. My brother is worried about what he is going to get, rather than helping out. I don't want anything to do with them - never thought I would feel this way. I have become bitter. What hurts the most - my mom favors my sister over me.
As an often lazy sibling myself, I want to remind people to use their words and ASK for the help they need. Some people who would never offer to help would be willing to do a specific job if asked. Of course, you know your own family, but don't expect people to read your mind.
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I have the same issue. Nobody invites my Mom for Christmas dinner, so the last two years I've cooked for her at her house. It's a pain, but I'd rather do it than feel guilty about my Mom spending the holiday with no company and no dinner. I agree with blue55 - as long as there is one sibling who will do it, the others feel that they can just turn a blind eye. It's very disappointing.
It would be nice if your brother could stir his imagination to think that his mother might like to feel included. Especially as it's not like it'd put him to any trouble, seeing as she'd say no anyhow. But she'd feel happier, and he'd get that nice fuzzy feeling. You'd have thought.
Or apparently not, then. Makes you spit, doesn't it.
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pull that weed , clean those gutters , weed eat that hillside "
i thought my mom must be nuts till i realized she was nuts . fortunately , i never bought into any of that BS to begin with . now that i more understand dementia , im glad i never took her insanity personal .
eat a weed ?
right .. not then , not now , not EVER !! ..
In the early part of my husband's LBD I could do what you are doing -- I could leave him alone a few hours while I worked, if I called during that time, left notes, etc. But having him alone became more and more a risky. He was very cooperative and sweet. But he just couldn't remember he'd agreed not to climb ladders while I was gone, etc. We did reach a point where even a half-hour trip to the drugstore was too much to leave him alone for. The real problem is that LBD has severe ups and downs and can change in a flash. Even if he was having a good and lucid day when I left, that could change quickly.
If your mother has Rem sleep Behavior Disorder (RBD) and some dementia-like symptoms, she has LBD. I don't even play a doctor on tv and I am not qualified to make that pronouncement, but I feel very strongly about it.
I urge you to get Mom checked out by experts. Then at least you can learn what to expect and feel more confident about making long-term plans.
But if not, then it has to come from Mother's funds. You MUST have respite. There is no "it would be nice" about it. It is essential. If you totally burn out, then Mom's money will be going to full-time care, probably in a facility.
Mother may run out of money. Many seniors who never expected to live so long or that care would be so expensive run out of money. If she spends money on her care now (ie your respite) she'll run out sooner. Then she'll apply for Medicaid. But if you don't get respite and burn out she'll need to pay for more hired care sooner. Then she'll apply for Medicaid.
If Mom has great resources to last the rest of her life, great -- she should be using them now. Saving for a rainy day doesn't make sense when it is pouring and you need an umbrella. Spend it now.
If Mom's resources are more limited, she most likely will need Medicaid at some point. If she gets better care by spending her money now and has to apply for Medicaid sooner, so what? Isn't that what her money is for -- her care?
Yes, some of the solutions to the challenges of caring for a loved one with dementia come down to money. That piece is not going to get better any more than the dementia is going to get better.
Deal with it now. With or without your siblings help.
My Mom has an aide who stays with her for five hours while I am at work and she is alone for maybe two hours very early in the morning (since she is sleeping) and maybe an hour before I get home from work. I can leave her for short periods of time and leave a note with her medications and when to take them and I call her to remind her but she is a fall risk due to her orthostatic hypertension. I truly believe my Mom has lewy body dementia even though none of her doctors have diagnosed her with that. They told her she had early alzheimers which I do not believe. She has all the symptoms of Lewy Body dementia, hallucinations, REM Sleep disorder, tremors, orthostatic hypertension where she faints from her blood pressure dropping upon standing, anxiety and depression. She knows who everyone is and she knows everything that is going on at this time. When she has fallen she gets very disoriented for a time and very anxious but then she can perfectly fine the next day. I just wish I could get one weekend a month where I could go away for one weekend. That would give me an opportunity to refresh my batteries. But it's causing an issue because my brother obviously cannot help since he lives too far away and my sister said she is not staying over at the house to help on weekends as she has her own house to take care of. I am just asking for once a month. I don't that is being unreasonable. So that leaves having my Mom to spend even more of her money and she is so worried about her money as it is with the salary going to the aide. I cannot afford to pay for an aide to come for the weekend on my own. I feel like I am stuck without a solution.
I got so tired of making excuses for them; but what's the alternative? Say 'they love you dearly, but apparently not enough for you to feature among their top 50 priorities'? I'm sorry your mother is so hurt and confused by your family members, and that you have to cope with the fallout.
First of all, Life Isn't Fair. Bet you've heard that one before, eh? If it were fair your lovely mother would not have developed the terrible disease of dementia, and she would not need a caregiver at all. So that is the first terrible injustice.
When she was hit with that unfair whammy, all three of her children had the same opportunity to decide what to do.
Brother decided to be uninvolved from a distance.
Sister decided to be minimally helpful
You decided to take on full responsibility for mother's care
All that you can do anything about is your own decision.
Taking care of a loved one with dementia is a huge, spirit-sapping, gut-wrenching job. It is OK to change your decision about doing it, now that you see fully what it entails and you are experiencing burnout. Really. It is OK to change your mind. And that has nothing to do with what anyone else decides. You get to decide for yourself.
The first thing I would urge you to change is to get some respite for yourself. Do this as soon as possible, and also set it up on a recurring basis. Arrange things so you can take one weekend a month off. (Or two. Or four.) But definitely start somewhere. If you need help figuring out how to do that. start a new post on that subject. (You'll also find LOTS of discussions on this site on exactly that topic.)
I said that your decision doesn't depend on anyone else's decisions. That includes your mother. She can complain and she can fuss, but she doesn't get to override your decision about what you will do. You control you. With dementia she is a vulnerable adult, even if she may be technically still competent. She can't be left alone for a weekend. So you may need to get a social worker involved or even APS. I'm not pretending this will be easy. But it is critically necessary that you get some time off.
I'd start there. Perhaps that will change your outlook a bit. But other decisions you can make about yourself is that you will provide caregiving services half-time. Or quarter time. Or none at all. Your sister decided how much to help and when. You can too.
The most empowering thing you can do is forget about your brother and sister. Realize that you can make choices on your own behalf. And even if you decide to keep doing what you are doing (with some regular respite), just the fact of acknowledging that choice can help you move forward without the load of resentment that is weighing you down.
By the way, who is with your mother while you work?