Next steps seem to be difficult for me.


My 93 y/o mother who has dementia needs to placed in assisted living/dementia care. Each day seems to get worse. I am the only male child, I'm 54 and work full time. Mom and dad lived in their home for 52 years. Dad passed away 5 years ago.At the time of his death, mom had early dementia symptoms but was fine and wished to be in her home. She was safe and took care of herself and did well. Her dementia symptoms slowly increased the past five years after dad passed away and really increased 2 years ago after one of her close friends passed away. About 8 months ago, she began to not recognize her house, thinks I was her brother or neighbor. She constantly cries because she wants to visit her parents ( who are deceased many years ago). You name the dementia-related behavior, she has it. She began to leave the house and walk down the street looking for her parents. So, I moved in with her at her home 7 months to help and watch her with the intention of later moving her into assisted living. To be honest, I feel like I am in prison living here. I know many of you may understand, some of you won't. I had an active life and was planning to start my own business. Now, I have no life now except to take care of my mom and go to work. Luckily I have someone who can stay with mom during the day, but nights and weekends are mine. I don't rally sleep well. Most of the time she is angry, agitated or crying. I don't seem to be much help. I'm not cut out to be a caregiver. The Dr. has suggested several AL for dementia locations and I narrowed them to two. I've discussed AL with mom countless times. Mom one day will not want to go to AL and gets very upset when we discuss it, then other days she is agreeable to it. I tell her that she is moving to a special school where she is safe and not alone where they can help her since I don't know any other way to approach it. I guess after all this rambling, my main difficulty is actually moving her. I'm afraid she will totally loose it. I'm afraid she will refuse to leave the house. How do I get her there? What if she starts screaming in the car? What if she refuses to go in the AL home? How did others manage this? I think I keep putting off the move because of fear of the actual day. However, as each day goes by she gets worse and I end up frustrated, angry and depressed. Any advice or wisdom is truly appreciated. Thank you.

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Jeanne, as it stands - dementia, non specified or mixed. I understand that she took english classes at school in Italy. She never spoke Italian to me as a child growing up, only when speaking to relatives in Italy. Agreed, one day at a time!

Does she have Alzheimer's or some other kind of dementia? I think it is more likely that she'll regress to a point in her life when she spoke Italian and that is what she'll do. Other kinds of dementia develop differently. Did she speak English also, before she came to the US? Then it might be easier to remind her to speak English. But all of that is in the future, and who knows how it might unfold? Plan ahead and take one day at a time!

I truly appreciate the responses from everyone. Just hearing back from you is very comforting, I don't feel so alone. I've been hinting to Mom very frequently that her new apartment at the " memory school" is being prepared. She knows that her memory is bad, so "memory school" is not negative to her when we talk. The suggestion that Jeanne gave - telling her that her parents want her to go was a great idea, I told her this today and she was very accepting. Note that the facility specializes in Alzheimers/Dementia care. Physically she is fine.

My mom was born and raised in Italy. She married my dad (in the Army at the time) and moved to the states after WW2. One unexpected issue - she has began to speak Italian to me! I can tell to speak English and she does, no problem at all. I just hope that she doesn't revert to an Italian language only world.

Hi. This is my first post and I was typing a long reply then it disappeared! lol So this reply will be brief. Although I only joined today I have been lurking for almost a year and this site and its members have been a godsend to me. Thank you ALL for sharing your experiences and advice. :)

My mother also fought assisted living. Basically, my brother and I had to lie to her. She refused to move, so we told her she needed to temporarily go into AL on doctor's orders until her medications were stabilized. It would only be until her next appointment when the doctor would reevaluate. Besides "brother and I had upcoming commitments during this 'temporary' stay so it was going to work out for all of us since we would be unable to care for her during this time".

We never used the words "move" or "permanent" and her upcoming appt was only "weeks" away. Not months. Weeks sounds much shorter. ;)

I left brochures from the ALF all over the house so mom would be constantly reminded of the place. The lease was signed one month prior to the actual move-in date. I made notations all over Mom's wall calender: "pick out paint color for room"... "select your favorite books to take for this 'temporary stay'", all the way down to "pack a suitcase" and "be at ALF 10am (move in date)".

I constantly reassured Mom AL was only temporary, her house would be waiting for her when she got better, etc. Move-in was believe it or not pretty uneventful. Of course Mom is never coming back to her house and she will be in AL/NH forever. :(( I feel guilty as all hell but options have run out. Mom has zero concept of time, so the doctor's appt, temp stay, reevaluations, haven't really come up. She has now been in AL 6 months and has adjusted really well.

Once in the ALF there's other issues you will have to deal with but that's for another topic/thread! lol This is what worked for me so take what may work for you and leave the rest behind. Best of luck to you! This is tough tough stuff.

My heart really goes out to you on this one. I do agree with everything Jeanne said and brandywine as well. I know assisted living has dementia care; but don't know to what extent. Nursing homes, not all, do have dementia care.

I think you should tell her whatever you think works - lying is perfectly acceptable in these situations as the truth is not something they can relate to anymore and quite comprehend. We have a neighbor whose mother had to go to either nursing home or assisted living and there were 4 siblings. They all were there to help take her as she was not cooperative. This truly is heartbreaking when the dementia is so advanced and they don't understand what is happening; but they had to get a sedative from the doctor in order to be able to help her out of the house.

You are doing the right thing and are a wonderful son. Blessings to you and your mom and take care.

I don't mean this to be a nasty comment. But I think she is too far gone for AL and that she needs a nursing home. I understand your fears about moving day. This is what my relatives did with their mom. They told her they all were out going for a ride in the countryside. She went along with that. Then when they got her in the car, they took her to the NH which they had already planned etc. She was a very stubborn woman yet she went along with it. When they go to the NH they told her it was a restaurant. I know it is lying but they did what they had to do. Hope that this helps.

It is not going to get easier.

She is not going to get better.

You are doing the right thing.

You are a fine, caring son.

So ... bite the bullet, suck it up, or whatever the phrase is for your generation, and just do it.

Some people just aren't cut out to be caregivers. Some people could be perfectly wonderful caregivers but can't deal with the impairments of dementia (that even professionals often have difficulty with). Never think of yourself as a failure in this regard. You mother is very fortunate to have you looking after her best interests.

It sounds like she has regressed to a point in her childhood, looking for her parents, so explaining the care center as a kind of "school" was probably smart -- something she can relate to from where she is. In fact, can you go further into her present mindset? "Your mother and father are not able to be with you right now, so they have arranged for you to be in this wonderful boarding school until they can be with you. They love you very much and want you to have the best care. First they wanted me to help you, but now they think you will be better off in this nice place."

She might be very unhappy in the care center. It sounds like she is very unhappy in her own home. This is not your fault and it is no reason to hold back on her placement.

I would not go with her alone. Perhaps her daytime caregiver can go with you.

I hope you get lots of "moving day" answers from others who have made this hard transition.

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