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Rebecca66012291 Asked January 3, 2024

What methods did you use to transfer your LO from home into an assisted living or memory care facility?

My dad has been living with me for the last few months, and my sisters and I, along with a care companion (Tu - Fr 230 - 7pm) are with him. He can no longer be alone because he gets scared and confused. This was a sudden down turn for him as he had been living along for the last several years and would kick you out around 2pm.. Now he has trouble sleeping at night, cannot run the remote control, struggles on what the next step is(i.e. pour coffee into cup, put in sugar, cream, stir), etc. He's 78 and diagnosed as moderate to early severe Alzheimer. I simply cannot take care of him with my full time job anymore. I've been late to work every morning as we run though the guilt trip of why do I go to work, why can't I just stay home (even though my other sister will be with him and yes he recognizes her), then when I come home he is just as upset I won't sit on the sofa with him for hours on end. I sit, have dinner with him chat, then I go to the gym, or read a book, etc. My trying to live life with him there is simply not working. He tells my sisters I'm mean and ignore him, which is simply not true, but I cannot meet whatever demand it is in his head. It makes him agitated, and I think he may do well in AL where he can meet people, be engaged more often and then I can do my normal Sunday, Monday, and Thursday visits (my sisters visit on Tues, Weds, Sat and Friday). I feel a ton of guilt but keeping him at the house is not an option any longer. He's also starting to require more attention than I can give. Any suggestions on how to help him transition would be greatly appreciated. Be Kind.

JoAnn29 Jan 3, 2024
Your Dad can no longer make decisions on his own. He no longer can be reasoned with. So as a POA you just do it. You make the decisions for him.

My Mom lived with me for almost 2 yrs. I placed her in an AL that took residents who had Dementia. The day she was to enter, someone watched Mom while we moved her furniture in. We put her in the car and thats when we told her she was going to a new apartment where she would make new friends. If u think this would not work, you may need to tell him when u get there. Maybe ask his doctor for something to keep him calm. I would not stay long. Get him to his room maybe sit awhile. Ask that when u leave a aide takes over. Or bring him back to the common area and have an aide distract him and leave. Its like taking a toddler to their first day at Daycare. Like with a child, you give them a kiss and say "I will see u later" and walk away. I don't believe in that not see them for a week or more. But, I don't think you need to spend hours with them. My Mom was 5 min up the street from my home so I stopped in for no more than a half hour during the day. She acclimated very easily so no scenes. If you find you going upsets him, its OK to cut the visit short and skip a day or two or more. You need to allow the aides do their jobs. He needs to learn to rely on them. It may take him acwhile to adjust.

AlvaDeer Jan 3, 2024
Guilt isn't appropriate to the situation because you must have CAUSE in order to have guilt.
That is to say you didn't cause this severe dementia, and you cannot fix it.
So the other G-word to try, given that the words we tell ourselves are so important, is "grief". That's what you are feeling as you observe what youR poor dad is going through, and know you can't fix it.
you stand helpless witness to his loss and torment. You are both grieving and confused.
I am so sorry, but the one thing that shouldn't be there is "guilt". You aren't god. You aren't a Saint. Not everything can be fixed and this must be endured.
I hope changing your way of looking at it will help.

Now on to your question.

As to your Dad telling you that you are mean?
I always tell people that we are meanest to those we live with. We trust them most. We know them most, and their soft spots, and when we're upset we know how to get their reaction.
Given that's normal for those of us with no challenges, imagine how easy it is for those suffering dementia.

Do begin to watch videos such as Teepa Snow about how to communicate with those with broken brains. Do know, as Oliver Sack's writings told us, they have a whole world. It just isn't OUR world and we cannot easily understand it, if at all.

I wish you the very best. You cannot do this yourself.
Placement occurs one step at a time. You need the power to do it via POA and documentation. You make the choice. You investigate the possibilities. You consider the assets. You make an appointment with an elder law attorney if/when needed.
You understand the adjustment time and adjustments that must be made for you both.
A day at a time, practice meditation a few minutes morning and night.
Be as patient with yourself as you are able. Be as patient with your Dad as you are able. And no one can ask more of you. A day at a time. A day at a time. A day at a time.

My heart goes out to you and I wish you so much luck. I am so very sorry you (or anyone else ) has to go through this. Know that you are not alone. Seek any support group online or anywhere else that you can find.

Are you POA? Have doctors said that Dad cannot live alone anymore, and will several attest to that?
If you are his POA (or guardian or conservator) then you can place him.

I agree with you. After a period of adjustment your father may well do better in care. My brother improved in care. I was told by staff that is often the norm for many. They are out of a home environment that they think they must control. They let go of control and let more be done for them. They are more easily guided. They will have companionship and activity. So it IS possible. But that sort of adjustment isn't always the case, and you cannot now predict it.
Pralinekiki Jan 22, 2024
Hello. I came across this site then your response to someone's question and I liked your answer. It was about guilt. You said you must have cause to have guilt and it resonated in me enough to want to write you. I have never thought of it like that and it has really helped me to cut out some of what I feel that does no one any good. I like others have taken care of my mom most of my life. Starting when I was just out of high school at my first job. I used to go home at lunch and make her lunch and get her whatever she needs. I got married at 18 and mostly it was to get out of the house. My dad was an acholholic and had me doing everything I could so he didn't have to. My 2 brothers never helped or did much since I had it covered. For 5 years I pretty much stayed away as much as I could but of course got pulled back in. I helped as much as I could till my husband got sick himself and I could only think wow was I prepared for that. It was pretty easy to just start up with the caregiver again. Another 15 years later and I got a divorce and felt for the first time ever I could breathe. Fast forward i ended up quiting a great job to help mom when my dad ended up in icu from drinking. They moved 300 miles north and 8 months later he fell down the stairs and died. He was a bad man so it really was a blessing. I couldn't leave mom alone so I ended up moving. She actually did really good for awhile. I got remarried after being with him for 7 years and we bought a house with mom. It was perfect 2 level with separate entrance. Well that lasted about a year before he decided it was time for a new model trade in. So mom and I have been together for 20 years. Up till 2018 it was working for us. Didn't really have to see each other so I could have a life of my own. She fell and broke her femor which started the avalanche. I really fixed her level up with all the bars and rails etc to make it so she could come home. Then she started falling in early 2020. I ended up in icu with tubes Feb 2020. When I got home I ended up taking her back to the hospital and she had a broken pelvis and ribs. She went into convalescent home for months but was released early due to covid. Little over a month later we had a house fire and lost most everything. We had to be in rentals for close to 2 years while it was being rebuilt. I had to start getting home health to come in cause I couldn't do all I needed to with the house and her. We got back in and I realized she couldn't be alone so I moved upstairs so I would be right there vs downstairs. That is when I think I started losing myself and any life I had. She seems to go downhill then she will bounce back but with less each time. I am no longer a daughter but everything else. She has fecal incontinence so you can imagine. Of course it's usually when my help has gone. I have someone 3 hours 5 days a week. It has kept me at least partially sane. I know it's getting to be to much on me. I am 62 and my health has suffered and just can't go much more. I have brought the subject up several times about looking into somekind of palce for her but she just waves it away. I worried I have waited to long as she now needs someone close most of the time. I don't leave her alone much so I am just as stuck. So your words have helped me to see a bit clearer and not get so bogged down. I have been doing all the finances aa well as the house and animals. We ended up having to put $100,000 into the house for non permitted work that we bought into which was huge. She has long tern care policy which I started when the leg broken cause we were able to qualify the 100 days of hospital etc. I have let myself sink into a place I struggle with everyday. I have lost most friends and brothers disappeared many years ago so have no help. Her life has become mine. She expects me to do everything which I do. I have no strength to fight her so do it. I hate my life and her sometimes which is my quilt. I'm sorry I went on so long

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Rebecca66012291 Jan 3, 2024
thanks Geaton. We have POA in place with him for the last few years, and no UTI, and we had a MRI run, nothing there except the brain atropy. His chart shows first diagnosis of "memory loss" almost 7 years ago. The doc made the offical diagnosis of Alzheimer after our MRI. So we are 7 years in. He still my know my name and my sisters, but he won't recognize anyone else, or anyone he has just met, or has not seen in a long time. Any thought or information is fleeting. He still feeds himself, and will get himself coffee, but he doesn't know the order of how to do it. He'll eat what you put in front of him but if you didn't there is a good chance he'd forget to eat. He's still using the bathroom on his own, though he's had 2 accidents in the last 3 weeks. He's mobile. Uses the stairs. He's scared to be alone, which makes sense if everything around you is suddenly not familiar. This is also the first time he has recognized his "brain isn't working". He will ask me if something is wrong with his brain - it's absolute heart ache. We have 2 places picked out that we like, now it's a matter of having him go. We want him to be happy, but also recognize that he may simply be angry for a while. :(

Tandemfun4us Jan 7, 2024
My Husband and I went to several places and took the tours. It was an illuminating experience and we learned from each experience. By the time we were through, it was clear which one was best. Then I checked the reviews and made sure the reviewers were not just people posting from taking a tour. I asked questions with my most important ones being: 1. what does mom have to do to get kicked out? We have never been in this type of situation before. 2. Are private caregivers allowed? 3. Are video only cameras allowed in the private room (mom didn’t have a roommate)? I got mom into the first one by asking her to stay while my husband and I went for a family event of my husbands. We invited her to go and also gave her the option to stay in the place we found. She chose the place AND loved it. I set up her phone to answer automatically and used mint mobile 15.00 month. I also got her an Alexa Show so we can call her and see each other. When we moved her to the MC from AL, I took her out for a hair cut and then I told her that my husband called and there was a pipe break and he got her stuff out before it was ruined. For the second move to another MC, I told mom they were painting the room and I took her to the new place where she was with her caregiver in a model while we set up her new room. She is still there and loves it. Mom has been in 3 facilities. The first one allowed a camera and audio and was AL. I was glad to have the camera. It allowed me to know mom’s schedule and help her if she was confused. That facility was sold 3 times in 2 years and then they changed the license and mom wasn’t eligible to stay. The second facility was MC and it started okay but didn’t allow cameras, only by being there daily did I discover the inadequacy of the care. I got mom part time caregivers to make sure she was getting 2 meals a day and showered with care and patience (no bruises). That was the only way to give me peace of mind and for my mom to have consistent care. The management had the typical excuses: not enough staff, did you tell ??, we are working on this, please write it down and I will call you, or worse - silence. One of the places I looked at had a opening and I moved mom again. Cameras allowed, no audio or in the bathroom/public hall. A dedicated phone for the on duty nurse and it is answered. Giving mom a choice was the only way to start this journey and the idea of traveling wasn’t going to work for her so the temporary stay suited her in AL. When she initially said no, I told her I couldn’t leave her but I could call Adult protective services for an evaluation unless she either wanted to travel with me or stay in a place I found. She chose the place.
strugglinson Jan 7, 2024
Thanks for this summary, and the reasoning and "therapeutic fibs" you used are great. I wish I used more of these. When my dad wanted to go back home after a couple of months in AL, I told the truth, that I dont think he can go back to a home setting given his physical and cognitive limitations. However that has backfired and now he is contorting it all around, saying that I dont want him to go back home with 24/7 care due to cost reasons alone, and I"m trying to minimize spending of his money. I almost wish I had just delayed it with a therapeutic fib like " lets re evaluate in a few months, see if your physical health improves etc"
Geaton777 Jan 3, 2024
He sounds like a candidate for MC and not AL (although the facility will ultimately decide). Does he have the funds for this?

Being scared to be alone is called Shadowing, a common dementia behavior. It doesn't stop anytime soon. He needs meds to help calm him since he can no longer calm himself.

Teepa Snow has some very helpful videos about dementia and caregiving on YouTube. I found them very useful.

A "therapeutic fib" will be very helpful and the facility admins and staff are happy to play along (as they have seen it all).

Geaton777 Jan 3, 2024
You should first make sure he doesn't have a UTI, which are very common in the elderly and often have no other symptoms other than changes in behavior and cognition.

Who is his PoA? Is anyone? If he hasn't assigned a PoA to manage his finances and medical affairs, this will be a problem when trying to get him into a facility because unless he goes voluntarily, you can't make him and then if he does go, you can't force him to stay. So, make a morning appointment with a certified elder law attorney. This attorney will privately interview him to make sure he still has capacity to create this and other legal documents (and the bar is low, so don't assume he doesn't have capacity -- let the lawyer assess him). If he gets this done, make sure his diagnosis is in his medical records so that the PoA is active asap. Another method is to download the forms from Legalzoom,com or Rocketlawyer.com. They have attorneys online to answer questions and help through the process and is much less expensive and more convenient. I've done this method.

For now, if he has the money, add more in-home care and have a discussion with his doctor about meds for agitation and anxiety.

Start visiting facilities (he doesn't have to go nor agree to any of it). Then you can make up a "therapeutic fib" to get him to voluntarily go to facility (like, the house has a gas leak and we all have to go elsewhere until it's fixed.)

This plan all assumes he has the funds to pay for extra in-home care or AL or MC himself. If he doesn't then this is another challenge.

Windyridge Jan 17, 2024
Hi Rebecca,

My dad starting showing signs of dementia in his late seventies. Our stories are very similar. You’ve gotten good advice here and it seems like you’re doing all the right things . Would just like to add a couple thoughts based on my experience with both parents and getting them into care at the same time.

Mom did not have classic dementia like dad but she could no longer reason, just wanted everything to stay the same. Dad was at the same level your dad is . Mom died after six months in assisted living and I then moved dad into their memory care section.

With dad I learned to not try to reason or argue with him. I just had to do what had to be done. I had to fib about some things and redirect him constantly. It was tough. He had a 30 second short term memory but could get around like a running back.

Dad thought he was just fine and I learned to not try to reason with him about his lack of memory and judgement. I would comment sometimes that maybe his memory was not that good any longer. He’d accept that.

Just go with the flow, fib some, redirect and when you have to do tough stuff like put him in care use any tools available to you. I told my dad that mom needs him to help her at the “therapy “ place. That got him in the door but it was a couple weeks of a real s#$@ show. Be ready.

The doc at the facility was able to get him on a good mix of meds. He wasn’t a zombie, still himself but would get crazy paranoid with out the meds.

Lots of folks think it’s terrible to use calming meds on the elderly but imagine being trapped in constant nightmares that won’t go away. Off the meds, the bad guys were always chasing my dad, stealing his car, kidnapping him etc. It was horrible for him without the meds.

If you haven’t already done so have a staff member from the facility evaluate your dad. He may be ready for memory now or pretty soon. It’s so much easier if it’s a progressive facility. Moving someone with dementia ain’t fun. Just down the hall, my dad never blinked an eye.

Get him settled in and then ease off the visits a bit. He needs to find his way such as it is. He may like socialization and enjoy some activities. My folks never did, just kind of grudgingly put up with their situation and made my life miserable.

Ah yes the guilt. I and everyone else here will tell there’s nothing to be guilty about and we’re all absolutely correct but it’s really impossible not to feel bad and second guess yourself. But remember your dad needs more care than you can possibly provide. We all get to where everything on the menu is horrible. You just have to chose the least horrible option.

You will get through this. Good luck to you.

lealonnie1 Jan 7, 2024
Here is a link to an article with good tips on transitioning a loved one to Memory Care Assisted Living:

https://seniorsathome.jfcs.org/moving-into-a-memory-care-community/

Based on your comment with added information about dad's limited abilities and that he's 7 years into an Alzheimer's diagnosis, it seems that Memory Care Assisted Living is the proper environment for him. Regular AL is too confusing due to having too many choices, kitchens in the apartments, and lots more independence. Memory Care is a much smaller, shrunken down world for the elder where they get fewer choices, fewer gadgets to deal with, no way to get lost, no ability to wander outside or out of the building, etc. Once dementia progresses, they need a smaller world in order to thrive. Just make sure the suite doors LOCK or residents will wander into one another's spaces and borrow things constantly.

Best of luck to you.

againx100 Jan 8, 2024
The facility will help decide which level of care is best for him. Your dad will, most likely, not be happy with any of this. That's OK. You have to take of yourself. I am POA for my mom and after 7 years with me, including a slow steady decline from MCI to dementia, I decided I was DONE and she was going to AL. I knew from word of mouth the best place in my area, filled out the paperwork, etc. I had to take mom for an interview right before she moved in, for them to make sure that AL was really the right level of care for her. I told her it was a place that was evaluating people for memory issues and told the facility NOT to blab that she was moving in soon! I was a nervous wreck, but it worked out just fine, lucky for me.

I think that your visitation plan is a bit too aggressive. Believe me, you will not want to be visiting quite that much. It's recommended to give them some time to adjust as well. Or they live there and remain dependent on you which is not how this is supposed to go. I go once a week. Even that feels like a lot in my busy life but that's my goal. Sometimes twice, sometimes less if there is sickness, etc. Just be flexible and do not feel like someone needs to be there every single day because that is not an actual need.

TouchMatters Jan 8, 2024
You are wanting / 'trying' to do too much.
The first place to start is dealing with your guilt and realize what is running your thought patterns and interrupt them (with reality / clarity / focus - and acknowledging that you feel sad / bad / even guilty equalled to knowing you are doing what is in his best interest (and yours). You know that you cannot continue on as you are.

* You certainly 'stop' the morning conversations which are making you late to work. Ask yourself why are you sitting there trying to convince him of something? This is where you start - understanding that this is a re-occurring cycle leading nowhere but emotional distress to both of you, plus you are late to work. You need to realize that you must set boundaries (of care, how long you visit / attend to his needs on a daily basis) and that it'll NEVER be enough for him.

Changing your behavior will feel awkward if not difficult because you have not been asserting yourself / taking charge of the situation. You are allowing him, a person with dementia, to control the situation.
Once you realize this, you will give yourself choices on what to do and how to do it.

How do you deal with these morning 'conversations' ?
If he starts in / talks to you about you leaving for work, you say:

"I am sad too that I need to leave you and go to work.
However XXX will be here XXX and take care of you. (add in whatever he may like, a game, lunch, going outside).

I will be home later today and we'll xxx (play a game, watch tv together), say anything that is a 'hook' that you'll be back and doing something fun together.
THEN YOU ACTUALLY LEAVE.

You do not sit down and have a chat.
You make this 'somewhat' quick as you are leaving.
Give him a hug and a kiss, look in his eyes and tell him you love him and you'll see him later.

You need to be-come aware that YOU matter too - your energy and needs MATTER. If you do not feel you matter, no one else can 'give this' awareness or quality (self-esteem, self-worth, self-respect) to you. It is something you need to develop yourself. It is a process. The key is feeling all that you feel and letting the feelings flow since you acknowledge them.

With this said, you are asking about support with the transition of moving him to a facility - which is where he needs to go for 24/7 care (and good that you reached this conclusion / decision. I am sure it wasn't / isn't easy for you).

I believe your questions is "How do I talk to him about moving" ____________

- You do not expect him to understand the 'why' of the need for him to move.
- You do not 'try' to explain the situation (he won't get it and certainly will reject anything to do with moving / leaving you / his home. It will only bring up fear.
- You realize that he is scared and doesn't have the cognitive capacity to understand.
- You tell him whatever will keep him calm. i.e., it is temporary while we get the house repaired ... get your room painted. It doesn't matter what you tell him as long as he will be more willing to go than not / or otherwise.

Question: Do you take him out now for rides? If you do, start doing more of this so when he does actually move into a facility, to him, it will be 'just' another ride.

- You never argue with someone with dementia. You learn how to appease them to keep them calm, i.e., offer. reflective listening (to a degree): "I understand you feel xxx" - then you stop, smile and hold his hand. You do not explain nor argue.
* I often say to my current client: Okay. Oh. Yes, I understand.

- Get the support you need, even if short term therapy. This is a major transition for you too. It hurts, it is hard, he is your dad and he is declining. Give yourself room to explore your grief.

Gena / Touch Matters
Rebecca66012291 Jan 17, 2024
DO you do this for a living! This is so helpful!!!! I do take him for rides. Before he moved into my house (mid Nov 2023) unexpectedly I'd pick him up every Sunday and we'd do coffee, breakfast, errands, movies then I'd have him home by 2 or 3pm. Then Mondays were my day to pick him up at lunch time and do lunch. then put a movie on for him and then home again by 1pm. My other sister gets him Saturday, and the other on Tuesday and Thursday. Weds were an "on your own day". Now with him living with me on Sundays we do earrands then watch a movie to 2pm then we go for a ride as this is when I used to drop him at his house. So we take a long ride. Do the same on Mondays after work around 4pm we go for a ride till 430. It's the best I"m able to do. I'm also staying out of my home until 6 or 7pm when I know he's in bed so that he gets used to me not being there but the care taker putting him to bed as this is what will happen in the AL.
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