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NewMember Asked August 2017

How do I tell my mom with dementia that she's going to a memory care facility?

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?

Windyridge Sep 2017
With her dementia it's a waste of time to try and explain/reason/convince her of anything. Do what ever it takes to get her in the car and moved in. Tell her were going to lunch, for a ride, whatever works. Staff at these facilities have been through this many times and will be very helpful.

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.

Countrymouse Sep 2017
I think it is a very good idea to move your mother to a high quality memory care facility. So I support you in this. That's step one, and these aren't "buts", just notes to bear in mind which I hope will make you feel better.

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.

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Worriedspouse Sep 2017
I think there is nothing more difficult than telling your loved one they have to live in an assisted living (AL) and nothing more painful than seeing the loved one scared to go. I was in your shoes a few months ago when my husband had a crisis and refused to go to an AL. I enlisted the help of the staff at the AL and asked the doctors to write him a letter encouraging him to go. When the advice comes from someone with authority, it is more believable, even though it may contain therapeutic fibs. Fortunately, my husband had a momentary clarity and understood why he had to live in an AL, he agreed. I immediately put him in the car and drove there and admitted him. The next 2 weeks, he hated me and I cried at home, at work, and in the car for doing that to him. His new medication to control his agitation started to kick in and now he is calmer and talking to me, but he is still unhappy there. He wants to go home. His trust for me was severely damaged and will take time to heal, but at least he is safe.

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?

testdepth Sep 2017
Honestly I wouldn't give her the option by asking her or trying to explain something she most likely won't understand anyway. I tried to explain it to my father and asked if he wanted to go and the answer was always "no". One day like you I had enough and asked him to get in the truck we are going for a drive. I drove him right there and we got out and went inside. It helped that the staff and other residents were there when he went in and they all greeted him at the door. That put him at ease and he was fine. The other residents actually welcomed him and told him he would like it there and they would love to have him come stay with them.

SueC1957 Sep 2017
Don't tell her.
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.

huntersailor1 Sep 2017
My mother is my best friend and we are very close. When dementia moved in, we moved her nearby to a senior apartment where she resided for several years, and then when that became difficult for her, she lived with us for a few more years. When she wandered at our cottage into the nearby woods and a search party of 100, the DNR, and local police came to find her, I knew she needed to go to an assisted living/memory care facility. Despite her geriatric doctor and her heart doctor telling me it was time to do so, I waited 6 more months. My mother had always expressed her view that she would not go to such a facility so I relied particularly on one brother and one sister (who live in different states but came to help when the day came to bring her to a place I had found) and the doctor's advice. My sister wanted my mother to choose a floor plan and visit the facility ahead of time, but I told her the doctor said just to bring her and she will think her room is her apt/house. When the day neared, I was still not convinced that my mother would get out of the car to go into a building (the facility) and so I called the doctor for his advice and talked with the staff at the memory care facility. The facility staff said to park in the first stall by the door and they would be at the door to help out. They reassured me that they have done this before :). The doctor told me to increase one of her anxiety medicines a few days before this time. My brother (whom my mother adores) took my mother for the whole day on a road trip... to some of her favorite spots, out to lunch, etc. My sister and I packed up the two vans with some of her things that we had predetermined would be good to bring for her room. The facility supplies a bed, nightstand, and dresser. I had all of mom's things labeled ahead of time and my sister and I and the staff prepared her room. Then we all waited by the door as my brother kept calling me about the arrival time. I honestly believed my mother would not come in or she would express her disapproval about staying... but apparently she had to go to the bathroom and my brother said to her (in the car) that he needed to use the restroom and that this building must have one and since my mother needed to use the restroom, too, she walked in. She was surprised to see us (my sister and I) in the foyer, she used the bathroom, and my sister told her that we had found a new apartment for her. We walked down to her "new" room, and all her things were there. My sister stayed to have dinner with my mother and then helped my mother go to bed. The staff peeked in and introduced themselves and everyone was upbeat. The next day I visited my mother and she did not remember I was there the day before. She was happy. She liked the food, etc. We (my brother and sister) think that it is a relief to her. She has privacy in her own room. The facility is small (max. 30 residents), clean, overlooks a lake, has a beautiful courtyard, and many daily activities. It specializes in memory care. My mother has been there 3 years now and I visit a few times a week. I bring her to her medical appointments but no longer have to be responsible for her medicines, etc. I can't tell you it was easy. I can't tell you that there have not been times when I questioned if it was the right thing to do. I can't tell you that everything is perfect. But I can tell you that it was necessary for her own health and safety and for the well-being of my family and especially myself. My siblings live so far away that I was consumed with dealing with my mother and her needs. I have learned to work within the system to make the situation the best it can be for my mother. So in summary, my words of wisdom are to pray, seek the advice of a doctor who knows your mom and the facility staff, allow others to help you (in my case two of my siblings), and plan (decide what to bring, purchase items ahead of time, etc.) so when the specific date comes, you are as prepared as possible. I wish you all the best. Take care.

MsPatS Sep 2017
My husband has ALZ and when it became impossible to care for him (anger issues etc.) I told him the house needed some repairs and he could stay FREE at a facility while the house was under repair and I could stay with my sister. Of course it wasn't free but I knew he wouldn't go otherwise. After a time his memory of ever having a family was gone and he remains in a very good facility. Heartbreaking, difficult and expensive disease for families.

anonymous262650 Sep 2017
Thanks for asking this. This is what's on my mind. I have been doing the same thing starting out with both parents. Dad passed last year. Moms changing. I have been dealing with caregivers, no-show sibling, aging home, 22 mile drive one-way. I have a NH at top of my next street. I have figure the money, and have made up my mind for mom to stay in her home one more year. I know my mom will be so upset, but I'm actually no good anymore. This is such a good website. New member you've done it,7 years is a long time good luck and god bless you all.

Denverfan Sep 2017
Hello Newmember.. no, you are NOT a terrible person for wanting to make sure your mom is taken care of and also have a somewhat normal life for yourself. I was in a similar situation as you and my mom (who lived in another state) was declining mentally and physically all the while telling us that we could not move her and she was going to "die in her own home". Well, after nearly 5 years of me going back and forth, constant phone calls to doctors and home health and several urgent calls in the middle of the night..she almost did die in her own home. After she spent 10 days in the hospital, we decided to move her to an A.L. near us in our state. We went from the hospital, to the airport and when we drove in to town I drove her straight to her A.L. apartment which had already been set up by my husband and son. I told her on the plane we were moving her into a new apartment where she would have a lot of help, great fun with new friends and no longer have to be alone most of the time. She wasn't thrilled and seemed sad about it at times. She also asked me at least 100 times for the first few months if she was going back to her house and I would just say, not yet. That was 3 years ago. Like other posters have said, you wont relieve yourself of ALL the stresses but at least you can come home at night and be with your family. You can wake up in the morning and have a cup of coffee knowing your mom is being tended to. You can and should do this for yourself, your family and for her. I visit my mom 3-4 times a week, bring her some chocolates or flowers. We play bingo and attend the parties, etc. It hasn't been all roses, and yes, they have lost a couple of her clothing items and sometimes her hair isn't fixed the way I like it, but I know that she is safe, fed, clean and tended to. I too struggle with guilt and second guess my decisions all the time but in the end we can only do our very best to show them we love them and be there for them. Sometimes the best decision is the hardest one. Best of luck to you!!

Fedupgiveup Sep 2017
There is hope at the end of this long dark tunnel. My mother was so angry and so uncooperative but she simply could not go back home. She had broken her hip had Advanced dementia and was dirty and had urinary tract infections all the time couldn't cook for herself. Difficult doesn't even begin to describe her personality. It was not only h*ll for her children but for her. She was as mad as all h*ll when they transferred her from the hospital to the care home. My poor sister was there and she got the brunt of her anger. But and this is the big but once my mother was in her own room and the staff treated her extremely well and she had good food and her medication which they snuck in her chocolate pudding she begin to mellow out and she began to like where she was. We were all shocked because she said she would never ever ever go to a care home. The fact is they have equipment that helps then transport the elderly your mother's going to receive balanced meals she's going to be cleaned and washed so it's going to be fewer new UTIs. My mother actually loved her room she thought she was back in Holland where she grew up and last Christmas before she died they was a miracle after a year of not knowing who I was she recognized me and we actually had a nice conversation. One of the staff members she really liked and he was a great guy. Make sure to check in on your mom and hopefully the anger and the nastiness will burn away as the disease progresses. My mother's last year was peaceful for the first time I think in her life. I know everybody has horror stories of care facilities but they treated my mom like a queen. So if you have to lie to get her there do so. And then give it a little while there will be tantrums and anger and maybe throwing a few things around the staff are ready for that they take it very calmly and it's not personal. I can only tell you that I wish we have moved our mother sooner because she was actually happy and healthy well as healthy as you can be with dementia. Good luck

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