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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...

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Thank you everyone. I found these responses early morning on the 16th and broke down. You all were right. My sister (who was visiting from Oregon) and I admitted my mom to a local hospital and told them we could not care for her safely at home. It became our mantra. The hospital did tests and ran scans and talked talked talked and ultimately I just had to toe my line that I COULD NOT bring mom home. She has been placed in a Subacute Rehab close to my home, and will move from that rehab in 8-12 days to a memory care bed that they are holding for her.
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.
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JRwornout Jun 24, 2025
Good for you, Birdee! I understand how you feel, but yes, you are making the right decisions. While there’s still lots for you to do, you’ll soon feel better as you realize you are no longer the minute by minute caregiver.
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You've done everything for them that you could possibly do, even educating yourself about their issues. The problem is that at this stage of your life and with all that's going on with you, such care is beyond you. That isn't your fault. Now you know that you never should have taken it on. In comes the guilt. Out goes your health. We see this on this site a lot.

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.
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Birdee24 Jun 24, 2025
One more time, you hit the nail on the head. I didn't want to admit it... was scared to admit it?? but moving mom has been the best thing for all of us. Now starts the healing process for all of us.
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What a blessing you’ve been to your parents, and I’m sure this move was planned with the best of intentions. Seems you’re one of many to find this level of caregiving beyond your capabilities. Please don’t assume any misplaced blame or guilt for this, you’ve done your best and are wise to know your limitations. For now, look into hiring a helper to lessen your load. If mom is prone to wandering, add protections to keep her as safe as possible. Start looking into memory care, or if finances require it, nursing homes. Decide if it’s feasible for dad to stay with you or it would be better for you both for him to live somewhere else. I’m sorry it can’t be better and wish you well in finding the best plan forward
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Birdee24 Jun 24, 2025
Thank you for the encouragement!
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You need to place both of them. It takes 3 adults to care for 1 adult so where are your other 5 helpers?

it’s ok to accept that you made a mistake. Start looking for where you will place them.
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Birdee24 Jun 24, 2025
Thank you for your kind encouragement towards acceptance. It means a lot to me.
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Both parents need to be placed probably in a LTC facility. You can not possibly do this yourself. If no POA call Adult Protection Services to see how they can help.
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Birdee24 Jun 24, 2025
I couldn't see it until these posts, thank you for your kind honesty.
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I'm not sure what you were thinking when you thought that moving your parents in with you was a good idea. Especially when you've still to regain your "footing" after your divorce.
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.
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Birdee24 Jun 24, 2025
Thank you for your hard hitting honesty. Mom's decline is SCARY how fast it's happening... dad is settling into the hard facts that she may not live out the year at this rate of downward slide.
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God Bless You for even trying to take care of them both in your home. It's your intentions that count, but those of us with experience in this arena know that it's impossible to take on what you had hoped to do. Please don't feel guilty, we are not equipped to handle such challenges whereas a care facility is. You did the best thing for your mom by arranging for her long-term care in one of them, and it's good your sister was there to support you for that. Now, on to your dad....who other's suggested might be better off in a facility like or "with" your mom, to which I agree fully. Like others, I don't know his physical limitations or your physical/emotional ones with him, but please remember, his living with you will change your life for probably the worse for the longevity. Modern life is not set up for "in home" caring for sick elderly. We have to work @ jobs ourselves, run households, often raise our own kids, and let's face it....the world in general is a lot more stressful than 40 years ago for each of us. Do not feel guilty about giving your dad's care to professionals as well, freeing yourself to not develop resentment toward him and allowing your relationship with both your parents to be one of love and caring visits to the facilities to where they have moved. Also, with both parents well taken care of by pros, you'll feel much better about your sister's inability to help due to distance barriers. Wishing you the best....don't feel guilty....you are a fabulous soul just as you are.
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Birdee24 Jun 27, 2025
Thank you Janny. Right now, he is best off with me, but we are discussing the future and his overall safety.
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Good for you. You are looking at what’s in their best interest. Sometimes we have these ideals. Try not to be upset with others. Ultimately you made these choices. You are doing a great job. Not easy.
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This is not uncommon. Your desire to be kind has outweighed good choices. Did you have no assistance from social workers.?
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.
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"The guilt for placing her, when I am contracted to be her caregiver, is real."

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.
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