My mom is 88 years old, with dementia and extreme anxiety disorder. She has limited mobility and is quite frail, but her organs are in pretty good shape, considering. My dad passed away 15 years ago. I am an only child, with a full time job and a marriage and life of my own. For nearly 7 years, I have been the case manager for home health care, the med tech, the business agent paying all the bills and supplementing her dwindling income, transport to every medical appointment, the grocery shopper and personal shopper, and the general contractor for every thing that goes wrong in a 60-year-old house. After the latest round of home repairs and a horrible experience where she pitched a fit at the doctor's office for no reason, I have had it. I can't do it anymore. We cant afford the home health anymore. And, she's miserable -- complaining, horrible panic attacks for no reason (since I have taken on all of the stressors), obnoxious and downright mean, refusing to make an effort to do the least little thing to help herself, refusing to eat, demanding that she needs more and more "help" no matter what I do. I had her evaluated for memory care 10 minutes from my house (actually I am amazed that they are willing to take her), which I have visited, checked out their inspections, and spoken to family members. I'm moving her there in a few weeks. Now I have to figure out how to tell her. I know that this goes against everything all of the "caring for your aging parent" books have to say, but I don't intend to give her a choice. What we have been doing for years is no longer working on any level. I am talking to her sister and her friends and hoping they will reinforce me (luckily, everyone agrees that I need to do what I think is best). I know she will panic. Maybe she will hate me. My plan is to tell her that this is the only way I can think of to help her, and that she needs to do it for me. But honestly, all I want is that she gets in the car. I promise to visit her, and I know her loyal friends will too. I think I may even be a better daughter if I don't have to be responsible for everything. (Am I really a horrible person?) Suggestions?
No, you are not a horrible person. Quite the contrary. For the years of caregiving you have provided, I hereby nominate you for sainthood. Do this for your mom and yourself.
It is true to say that this will not totally remove all your anxieties and free you "just" to be a daughter, though I wouldn't be quite as devastatingly pessimistic as the previous poster. I looked after my mother at home; my cousin looked after hers - as you have done - in the mother's own home for many years before arranging residential care for her; and although there were pros and cons on both sides overall I wouldn't say that my cousin was a lot less stressed or worked less hard than I did - we just had different things to worry about, and different tasks consuming our time. Even down to the guilt: I felt guilty about not being better at the job, she felt guilty about delegating parts of the job. You can't win. That's just life.
It sounds as if you have found a good, high quality unit that understands its professional business very well; and that is why I think this move will benefit your mother as well as you.
This is the main reason, and I don't want you to take it as a criticism because dementia is a nightmare and nobody can be blamed for not handling it to perfection. But it is when you say that your mother has horrible panic attacks for no reason. Actually, she has excellent reasons. You have taken over all the stressors = you have taken over control = she has no control. That wouldn't make you anxious, if it were you? Sadly, too, it is part of the cruelty of dementia that sufferers do not lose all insight into themselves. Until the very late stages, they can be painfully aware that they are - literally - losing their minds. That wouldn't bother you, if it were you?
So your mother feels helpless and terrified, probably angry too: she very much needs the calm, confident secure environment that you are about to provide for her. And even though she may not (let's face it, probably will not) thank you for it you are doing the right thing for both of you. Grit your teeth and get it done.
Final comforting thought: planning is one of the skills that dementia destroys, and involving people with established dementia in planning merely stresses them without meaningfully supporting their autonomy. Best practice is therefore that you do NOT start reminding people about appointments or engagements in advance, let alone major changes. The correct thing instead is to make the transition as smooth and continuous as possible, for example by moving familiar objects such as curtains, bed linen, ornaments, photographs to her new room ahead of the move. If you can arrange for her to meet one or two key personnel from the unit too that would be ideal.
Best of luck, please come back and update us.
I often ask myself: If I were the one with dementia, would I want to go to an AL. Heck no, because can be very isolating. Living inside a restrictive setting with a bunch of strangers is never fun for anyone. I try to visit my husband daily, even though he is still angry at me, but at least he has a familiar face near him and protect him. I encourage you to do the same with your mom.
One other advice I want to dispense is that you are her advocate. If you don't understand what the caregivers there are saying or doing, stop them and ask for clarification. Because if you don't understand, how will your mother understand?
Tell her whatever you think would work (mine was she was going to the doctor-she LOVES going to the doctor.) My mom was adamant that she would never go to a place like that. "I don't need it", she would say. When her confusion got out of control, I knew if I said that she was going, it would take an act of God to get her in the car. She'd physically fight me if she had to.
Sorry, just lie and it will go a lot smoother.....until she's in and you leave. Don't worry, she'll adjust. I slept there the first night with her and left, on the sly, after breakfast. You have to do what's best and whatever it takes for them to be cooperative.
AS long as you have POA and letter from MD stating she can't live by herself, in an extreme situation, the police can "escort" her out. I sure wouldn't want to take that route.
If you tell her a couple of weeks before she goes, what happens when she sits down and won't go? Then, in a few weeks, you'll have to lie to her anyway to get her in the car.
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