And it's legitimately only day one.
I have been caring for my parents by going over to their house for meals and occasional bedtime help for 4 months, and today we moved them in with me. Mom has dementia with Lewy bodies, and can't remember her limitations. Her sleeping meds aren't strong enough to knock her out, and on night one after a busy busy moving day, she was tucked into bed at 10 pm and still fell out of bed trying to "get some Tylenol" for her feet which were hurting her at 12 pm.
I'm exhausted from 3 moves in 6 weeks, trying to find my footing after a divorce, and trying to care for them. I'm afraid that this little "experiment" isn't going to last long, as I can barely get her into their decrepit mattress to go to bed on my own, because she's become so completely physically unable to use her body (until she suddenly has a burst of energy and tries to do all the things on her own and ends up on the floor).
I have read up on Lewy body a little, but moved me and them both in less than a week, and only got her diagnosis two weeks ago! I am in over my head, and she's dragging me down with her. I know that it's all new, and that we need time to find our own rhythms, but if anyone has any ideas for these beginning learning stages I am open. I know that patience and consistency is a huge key, and I've read up on some ideas to implement immediately, but I'm scared and floundering, and I don't want anyone to get hurt.
Thanks for listening...
I think, ultimately, mom's decline happened seemingly so fast (whether that was the case or not) that I got the wind knocked out of me. The guilt for placing her, when I am contracted to be her caregiver, is real. The anger at my father for being so needy and contributing to her decline due to the stress she's been under, is real. The anger that my sister gets to go back to her "normal" life and the life that I thought was going to include BOTH my parents now being visits to an acute care nursing home is horrible. And that's not even including the discussion that has to be had about moving things into the memory care 'apartment' when mom leaves SAR.
Thank you all for your honesty. I am slowly recovering from the last few weeks, forget the past year. My therapist (yes, I have one) keeps reminding me that I will get to grieve, but right now is the time to set everyone else up so that it is SAFE to grieve at the right time. Dad is angry, sad, bewildered, relieved... you name it, he's feeling it, at leaving his wife at a facility when he thought he had more time with her at home. But! While she continues to regress (we made the right choice to place her) HE is becoming more independent and taking responsibility for his own home care in ways I never expected.
This will all work out... even if it is the hardest thing I've done in a long time, and that, for me, is saying something.
Bless you all... Birdie.
Forget all the hopeful thoughts about rhythms, learning stages, patience and consistency. That's psychobabble and isn't going to help this dire situation one bit!
Now that we're down to basics, you know what you need to do. You say that you're "afraid that this little 'experiment' isn't going to last long." You are right. It didn't. Past tense. Now you must do what you should have done in the first place: Find a long-term care situation for both. Call in a social worker if you must. Memory care for mom, and you didn't mention what your dad's problems are, but since he cannot care for mom alone or live alone, apparently, he must need, at least, assisted living. They could be in the same continuum of care facility and be together a good bit of the time, if that's what they want.
You may notice that because mom and dad live with you now, your ability to seek appropriate facility care for them is seriously curtailed. If you think all the moving etc. etc. has been hard for you, it's about to get even worse. And, with mom and dad having a change of scenery due to the move, expect them to regress both physically and emotionally. Get their doctor on alert and ask for calming meds in case they need them. Have doctor up the sleeping meds for mom. She needs them and so do you so you can get a decent night's sleep every night.
Once you find the right facility, even more will be expected of you. Again, a social worker may be helpful. There are horrific quantities of forms for each person that you'll fill out, assessments from facilities to determine if they can care for them, financial reports, choosing their rooms, writing checks, picking up what they need - like new bedspreads - and so on. Be ready for this, but do it.
The good thing is that once you get them somewhere, anywhere, besides your home, you'll be able to sit back and breathe a thousand sighs of relief. You won't be off the hook entirely, because you'll have to visit, calm them, interact with their aides, take cookies to them, blah blah blah. But at least you won't be dealing with Lewy Body in your home (which is nigh unto impossible, BTW). You will have care help from the LTC and whatever other agencies are by that time involved.
I wish you the best in recovering from this miserable experience.
it’s ok to accept that you made a mistake. Start looking for where you will place them.
You've now bitten off WAY more than you can chew, and it's time to hire some in-home help with your parents money until you can find the appropriate facility to get both your parents placed in.
The only up side(if you will)is that Lewy Body dementia is the second most aggressive dementia with a life expectancy of just 5-7 years, so your moms decline will be quicker than most of the other dementias.
You have to take care of yourself in this equation, as you matter too, so I pray that you'll do what is best for ALL involved.
Remember that caregiving only works when it works for everyone, and you are part of that "everyone."
God bless you.
I would contact whichever service provides home care and get them involved. You likely will not be able to manage them. You need to be realistic. And moving them is so hard on them. I’m not sure how Long term care is managed where you are. I’d get them organized asap with help.
This caught my eye. Why do you feel "contracted". Why not sister? As children we do the best we can. I don't allow myself to feel guilt. I did a lot for my parents. I was the oldest, a girl and the one who stayed in the same town. I had Mom in my home for two years and she was pretty easy. But I am not a caregiver. My house is not accomadating for someone who can't do stairs. I placed her for respite to go to a wedding. She acclimated well so I placed her permanently. She had freedom she didn't have here and was well taken of.
I refuse to feel guilty. My brothers did nothing. Your Mom is in a safe place and cared for. You really could not care for two people. Now you can visit her as her daughter and Dad can visit as her husband.