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SoninPA Asked March 2020

Just moved Mom to Assisted Living. Now the guilt sets in.

Sorry to unload on all. But today, we moved my 79 year old mother into Assisted Living. It was a long time coming for her with her dementia. She was a very independent professional woman for a number of years. Today was brutally tough. The only way we could get her out was to kill the heat in her home (which she has lived in for a lifetime) and tell her that she cannot stay there while it is fixed.
The facility is great. It is everything we could ask for. Very modern. Looks like a resort. Great food. Great amenities.
But today was brutal. As the day went on, she became more and more uncomfortable about the situation. By the time the sun went down, she got erratic. Threatened to call the police to have them take her home. (she does have sundowners...so things get wacky later in day). She did not want to be left alone. I felt like I was leaving a small child at a facility somewhere. She kept trying to get me to reassure her that I was going to be staying in the suite with her. I am riddled with guilt and questioning whether we should have done some type of in-home care instead.
Ok...now for some questions that might help me:
1) How much involvement should I have in the beginning? The place is 2 minutes from our house and I planned on spending a ton of time there in the beginning. But tonight, I was questioning the idea and if it's better for her to get used to it and force her independence?? Thoughts?? Just not sure what to do.
2) Moving forward....any suggestions on how to get her to accept the fact that she might not be going home......ever? Just thinking of that phrase makes me upset. Can't imagine what she is thinking.
Again...I will take ANY advice that you can offer. This is a woman who LOVED her home and is really going to struggle with this. But her condition was so bad that she would turn off the heat by accident and try to light fires in a non-wood fireplace to stay warm. A disaster waiting to happen.
Thanks again for the support. Again, I will take any and all advice. I just need to be talked off the ledge :)

Watergirl1 Mar 2020
I too placed my grandma in AL after she recently fell and wasn’t safe at home anymore. I’ve been her primary caregiver for the last 4 1/2 years. I know it’s difficult but I remind myself she’s safe and well cared for.
And I visit daily but she doesn’t remember that.
You have been a wonderful and loving daughter and that will never change but at some point we have to step back and let them adjust to their new environment and the loss we both feel. I’m working through that too! Sending good thoughts your way . . .

Isthisrealyreal Mar 2020
I made homemade treats and took my dad to activities and communal areas. I said hello and offered the treats to other residents and their visitors. This worked to help my dad feel like he had people that he knew starting right away.

Hind site, I know that I set a precedence for me being there too often. He did well but he was incredibly upset when the time came for me to get back to my life and only be a visitor. He wanted me around for hours everyday, I would have backed off sooner had I known.

One thing that I recommend, watch her while she doesn't know you are around. This will give you the true picture of how she is doing. My dad complained and everything was wrong, staff said he was doing great, no problems- reality was in the middle.

I was happy that I watched from the shadows so I could see what was really going on. Even staff didn't know I was present.

I hope that you and mom adjust quickly. Great big warm hug!
SoninPA Mar 2020
Thanks so Much for the advice!!!!!!! It has been 24 hours hours now. Mom is going through on non-stop cycle of confusion and anger. When we arrived to join her for breakfast this morning, she had taken all of her stuff out of the drawers and said she is already to go back home. It's gonna be a long haul, but I have re-read all of the responses to this post several times since last night. Very helpful getting an outside opinion. So THANK YOU!!!!

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dlpandjep Mar 2020
You've received some great advice - only thought I have is - a doll.  That may sound odd, but someone gave my Mother a beautiful baby doll and she sleeps with it every night.  When I put it in bed with her, she lights up and I know it helps comfort her.  Just a thought....  Bless you.  I know it's so difficult - but you're doing what's best for her.  Hugs.

XenaJada Mar 2020
Stay away at least a week. Maybe 2. Don’t visit in the evenings. Make sure there are no bags, totes or luggage in her room.

lealonnie1 Mar 2020
You moved your mother to a safe place where she will be properly cared for by an entire team of people who are trained in dementia & Alzheimer's.

Will she be happy? Maybe, maybe not. The main thing is that she is safe.

Dementia is a family affliction. We ALL suffer the ravages, not just the person who's diagnosed. We worry, we fret, we wring our hands trying to figure out what to say to them, how to word it just right. How to lie when necessary, and how to stretch the truth or fabricate the details to help them cope with their new reality. They, in turn, will forget what we struggled so hard to come up with to begin with, so we'll just have to keep repeating ourselves on a daily basis.

Try not to take the backlash personally. It's hard, I know, and I give myself the same advice on a daily basis. Allow your mother to adjust to her new home and to make friends & find her place. Stay away for a bit if you can, and when you do visit, leave if/when her behavior goes south. Remind her that she's there under doctor's orders & she can't leave or 'go home' until & unless her doctor orders such a change. In the meantime, mother, please settle in and join the activities.

One day at a time. You're doing the best you can and have nothing to feel guilty over. Allow yourself to feel relieved that she's safe & being cared for. And allow yourself to feel sad that you've lost the mother you've always known......she's somebody different now, and continuing to change all the time. Dementia is an ugly affliction that robs a person of all they were and all they can ever be. All that's left is a shell of what used to be, and that's a sad thing. Allow yourself to grieve the loss, as it is profound.

Wishing you and your mom all the best.

Gracie61 Mar 2020
Moved my mom this week also. Spent the first night there with her. But it was bad the next morning as the reality hit that I wasnt staying. For the first couple of weeks I've hired sitters from 8 am to 8pm. I've told her that these are helpers that are for new residents to help them find dining room, activities

Ibe instructed them to not spend too much time sitting with her in her room, as she gets annoyed by this. But they pop n and out, make sure she gets to meals when Im not there, and have gotten her to some activities, helped with the new remote for her TV.

Ibe been there every day, eaten a few meals with her. Most people have been very welcoming. There are both ALivvin and Indpendent Living at all activities and dining room.

It's still been rough. I took her to a dr appt on Wed and she cried when I brought her back. But today I took her for hair appt and it was better coming back.. I made sure she was sitting at a large table in dining before I left

The hardest was a phone call I got the second night she called crying and telling me she was scared to be there alone.

This is hard, but necessary.

CaregiverL Mar 2020
Tell her you have to be at house while workers fix the heating system...tell her they have to replace pipes too...(a fib...not to jinx anything) ...tell her you want to meet her for lunch when you get a break from home repairs...let her adjust & meet friends
good luck & hugs 🤗

bicycler Mar 2020
SoninPA, it sounds like your mom's dementia may not be quite as far along as my dad's was when I moved him to memory care assisted living facility, but I think I may have delayed the move a little longer than was best for both him and me.  Anyway, below I've copied an answer that I've given more than once to others on this forum who were tormented by the hard decision to move a parent to a facility:

Everyone's situation is different. But here's what I did after agonizing for about a year over whether, when and where to move my then 95-year-old dad in late-stage dementia to a memory care facility: I didn't tell my dad about the move, instead I just drove him there and he thought we had arrived at a nice hotel like we had done many times in the past. We ate a nice dinner together and I spent the night with him, showered him in the morning, and then we ate a hearty breakfast together. I watched as he ate lunch with his new friends and then I left while he was participating in an activity. Then I returned and observed him eating dinner. After the first day, I rode my bike the 10 miles round trip to visit him at least once every day (and my wife visited him a couple of times weekly as well) for the next 19 months until he died at age 97.  During that time, I remained his primary caregiver, but with the facility's small army of aides and my daily bike ride I was a better rested, more fit and much more patient caregiver.  An unexpected bonus was that my dad became more social than he had been in many years.

As it turned out, my dad didn't remember living anywhere else over the last 75 or so years, i.e. he didn't remember living with my family for the prior 3.5 years, nor any of the three homes where he and my mom lived for 70 years.  However, almost every day he would ask me to take him home, but "home" was his childhood home where he thought his mom was waiting for him (or waiting for us, since he often thought I was his dad). I always told him it was too late today since all I had was a bike, but that we could go "home" in the morning after a good night's sleep and a hot breakfast.  That usually satisfied him, but when it didn't, then we would walk the halls together looking for an exit and a ride "home."  Sometimes other residents overheard us and wanted us to take them to their homes and I'd tell them the same things I told my dad.

I know the staff at some facilities advise family members not to visit for a while (my dad's staff did not), but you know your mom better than the staff does, and you should do what you think will be best for her adjustment.  Like I said, everyone is different.  Best wishes.
XenaJada Mar 2020
That was sweet and sad
Sunnygirl1 Mar 2020
It sounds like lots of safety issues with her in her home, so, I’d be relieved that she was somewhere safe. Do you think she will get enough supervision in an AL? If so, it should be great. I’d practice letting her adjust and let them provide the care. Home care is possible if finances allow, but it brings so many issues like people who don’t show up, people get sick, quit, etc. plus equipping the house for safety reasons, ......so much involved.

With dementia....she likely does not have the ability to understand that this is her new home NOR why. Expecting her to get it isn’t realistic, imo. I’d keep it simple and something she can deal with. She can’t process more. If heat is broken, they have to replace the furnace....jobs lined up...anytime...new part on order...in shipment.....any day, etc. Eventually, most residents forget about it. It’s often that they forget your answer not that they are contesting your answer.

Id keep in mind that no matter how much she loved her home, that would not continue to make her content. People with dementia often develop fear, confusion, anxiety, etc and they long for comfort that the house does not provide. People with dementia have brain damage they can’t do better. Leaving them alone to make on their own is risky for their own safety. If they could do better, they would.

I’d just keep check on how much help she does need. A regular AL may be sufficient up to a certain point.

Windyridge Mar 2020
Ah...So many of us have been through this. In my case I found it better to pull back a good deal after getting my mom settled in. I had to put my dad with her a few days later. It was pretty nuts.

each case is different but folks need to figure out the new reality and it’s tough. I would peek into the dining room at dinner and watch them learn how to interact with table mates and staff. It’s a little like dropping off the kid for the first day of school.

just remember , she’s safe now. You’re doing the right thing.

againx100 Mar 2020
You have clearly stated examples of why there is NO way she can ever live alone again. She NEEDS to be where she is. It really is for her own good. It will take her time to adjust and even if she never appreciates it, that's OK. You need to quickly find a way to accept this situation and give yourself permission to not feel guilty.

I think it is usually recommended that you step back for a bit to let her adjust to her new living arrangement. It will be hard on both of you but necessary. Ask the staff for guidance on this.

Dementia is a horrible disease that really changes conditions to make things we never thought possible into necessities.

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