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Alzheimer`s Disease/mom's alzheimer's care in assisted living

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My mom has AD I am not sure what stage, she has some 5, 6, and 7 all together. My father has heart problems and can no longer care for her himself. He has decided to put her in a "memory care" unit. She will be going from a 4000 square foot house to a room smaller than my son's dorm room. She won't have her beloved dog with her. I am concerned about how my mom will feel and react to this new environment. What is the normal response? This place is depressing to me. She will be with other people who are farther along in this disease than she is. (they sit around all day mumbling to themselves)my mom still knows her family, she can dress herself but we have to lay out her clothes for her as she can not dress properly for the season. She eats on her own but does not cook or fix her own plate, she can bathe herself although we have to help her in and out of the shower and stay with her so she doesn't fall. She cusses at my father daily, but he doesn't know how to properly talk to her,(if she says something wrong he will tell her she's wrong, he talks about her like she isn't there even though she is, etc.)he has NO patience at all. The people at this facility have said she doesn't need much room, that it makes them afraid. I fear she will be upset and may become combative. I don't want her to feel abandoned. Are my fears unfounded? I am against this move but it is my father's decision. Any advice will be much appreciated. Thank you.

Answer
Hi Emily, I know this is very hard and it's heartbreaking that she has come to this stage - but stand back and think about this.

Your father is at the end of his tether. He cannot cope with her care in a home setting, either physically or emotionally. He just can't do it any more. This must be extremely difficult for him, and he really needs your understanding and support. Your mother deserves good care - I know you know intellectually that caring for her is a relentless and thankless job that requires him to be on duty 24 hours a day, 7 days a week, 52 weeks a year. She needs constant supervision and support to keep her safe and healthy. She deserves patience and kindness, and your father's well has run dry. Even if he had full time care for her in his home, it would be very difficult, and it gets much, much harder from here on in. Shortly she will need heavy physical care.

Unless you are volunteering to take her into your home and look after her yourself, your father's choice is really the best option for everyone. He loves her - and that is his real job. That is the one thing he can do better than anyone else - and he has to be feeling awful when he gets to the point where he has no patience with her. He doesn't have to be the one struggling to get her dressed or bathed, or fed or try to keep her busy and safe, or stop her from wandering at night. Physical care can be done by anyone. What he and the family can do for her is bring her pleasure, enrich her life, love her, make her happy with little joys.  

Consider that in a memory care unit, they have specialized facilities to make care easy. They have special grab bars and shower rooms and other equipment. They have a commercial kitchen and dieticians. They get fresh staff every 8 hours, who come to work well rested and refreshed, who can take breaks and go home at the end of a shift, take days off or holidays. They aren't family, so they are less likely to be distressed by behaviours or take them personally. They also have special training. There are customized programs to keep residents occupied and give them opportunities to socialize and join in as much as they can. They have a very steady and predictable routine, and all kinds of services and supports that come to the facility, so the person doesn't have to be taken out.

All of that is very hard to provide in a home environment. It is very brave of your father to admit he can't do this any more. You wouldn't want him to keep going and make himself sick. All that would do would be to throw everyone into crisis, and then you would be looking for a place for her on an emergency basis. Your mom needs him well so he can look out for her, and keep an eye that she is being looked after with dignity and respect and is as happy and serene as possible.

At this point, it is unlikely she is entirely clear where she is. The overall level of confusion and memory impairment is often greater than family members realize. When she was still in her apartment, my mother in law got lost a few times. What had been familiar became strange.

My mother in law had to move from an assisted living facility to a special dementia unit around the same point your mother is at, and she didn't even realize she had moved, even though she went from a huge corner room with two walls of windows overlooking a lovely ravine, to a tiny room looking out on a city street. She didn't see a difference, which was just so awful and sad.

At one point, she asked to go home, and when we asked her more questions, it was't our house, the apartment of her later years, or the marital home of 40 years she wanted to go to. She wanted to go home to her girlhood home, where she thought her long dead parents and sisters were waiting for her.  She had completely forgotten her own homes as a adult.

I truly think at this stage of dementia, life becomes a big confusing and overwhelming jumble. Because she is less and less aware of her surroundings, and has an impaired memory, I think you might be surprised by how well she adapts. It will be a change, but be upbeat in front of her. Even if she doesn't understand what you are upset about, she will "catch" your emotion and become anxious.

When you do move her, I would not make a big deal about it in terms of trying to prepare her. All you will do is upset her. What works best is to get her out of the way for moving day. Send her, perhaps even for an overnight stay,  to spend some time with a friend or other family member who can look after her and keep her busy. Then, do the packing and moving without her. She would be upset by bustle and confusion anyway, and she won't be able to make sensible decisions about what she might need to bring. You make the decisions, and pack things and take everything to her new room. Unpack and put everything away, hang the pictures, get her things all ready for her. Then go and get her, and take her to her new room, and stay for a visit with her. I'd suggest seeing if you could eat a meal with her - and then turn her over to the staff and let them take it from there. They have done this dozens of times.

I know you are grieving and you want none of this to be happening - but I truly think your dad is doing the best he can for her. If you visit her in the first weeks, be loving, and have a smile on your face. Bring things to do with her or to distract her - pictures to look at, music to listen to - so your visit will be busy and full. Take her for a walk around the facility and to say hi to everyone.  When it's time to go, be matter of fact, kiss her, tell you will be back soon, and go.

It may take a a couple of weeks, but she will settle in and is likely to be very comfortable in short order. She will make friends and get accustomed to the routine. She may need medication in the first weeks to calm her anxiety if she's upset - so talk to the doctor to see about having a prescription ready, but you may not need it all.

This part is the hardest - the time before she goes in, when you are torturing yourself with worries about her reaction. I think you will be pleasantly surprised. She needs different things than she used to because her dementia is changing who she is. I know you hate everything about this - and I totally understand it. It's lousy, it's unfair, it's painful, it makes you sad and angry and frustrated and guilty and a thousand other emotions. However it is what it is, no matter how much you wish it were something else.

Your father probably needs your support as much or more than your mother. Imagine what it must be like for him, to be facing living alone and that your mother can no longer live with him and be the wife she once was.

I know also that care facilities can be depressing because it's like looking into a future for your mother than you never wanted her to experience, and knowing you can't stop what will happen. Getting to know the staff, some of the residents and their families helps. All you can do with this is take it one day at a time, and try to concentrate on giving her the best quality of life you can. She doesn't need a 4000 square foot home anymore. She needs people in her life who care about her.  "Stuff" no longer has value or meaning.

I'm thinking of you.  

Alzheimer`s Disease

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Mary Gordon

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Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.

Experience

Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

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