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Hello,


I have been reading the forum on this site for a while and find it so helpful, so thank you for all the support.


I live with my mother who is 80 and is in mid-Stage Alzheimer’s (score of 14/30 on MMSE). She is the sweetest mother and I am so blessed to have her. She does show frustration at times (which is the dementia), has gotten lost in the area she has lived in for 50yrs, does no shopping, cleaning, cooking or organizing of her own day. She lays down a lot. I have to force her out of bed in the morning after she has been resting for over 12 hours only to have her lay down again after a quick breakfast. She has developed the OCD habits of dementia (obsessively picking lint out of the carpet, picking at her skin but refusing a bandaid so cuts can heal), incontinence in the morning. Of course she will have been in bed for over 12 hours when it happens so I understand. I get her to wear a Tena pad before going to bed but I hear her tear it off in the middle of the night. She is not cleaning herself properly after bowel movements or in the shower as evidenced from stool on the towels and soap. Plus other symptoms of Alzheimer’s. After she got lost my brother thankfully agreed to look after her during the day while I was working and goes home when I get there. But I am going crazy with stress, worry, fear and frustration and my brother needs to get his career going.


Anyway at her last doctor’s appointment he told her that he is no longer suggesting she go to assisted living but now strongly advising and faxed off the “prescription” order to the assisted living that she liked the most. The order states that she is to take the next available room.


My mother does not want to move because she loves her home and feels perfectly fine. “There is nothing wrong with me” she will state to me. And needs a list of what she has done wrong or done that is dangerous. She tends to forget that her doctor made the order. We (my brother and I) went ahead and convinced her to sign the lease for a beautiful room at the assisted living home that she likes. She of course has forgotten this and when we remind her she does not want to be involved in the planning or anything. We are planning on moving her in May 31st.


I just feel so bad not telling her what is going on. Our plan is for her to go out for her usual coffee with her friend and have the movers come to move her belongings to the residence. After the coffee my brother will go pick her up from the coffee house and take her to the residence for lunch while I move her in.


I am beyond stressed, worried, nervous and feel so guilty.


Is mid-stage Alzheimer’s a good time to move a person to assisted living? Am I being selfish for doing this to my mom?


Any tips on how to ease the move and transition?


Should I tell her what is happening the day of or the night before? Or just let her know once she is at the residence?


I can’t believe this is happening. I feel so bad not involving her but telling her upsets her.


Sorry for the ramble.


I am so lost.


Thank you for your time reading this and for any advice you have.


Thank you.

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Telling dementia patients about what is going to happen in advance is NOT a kindness. It causes agitation.

Has mom's doc given her any meds for agitation, or at least to ease the transition? If not, please ASK for some.
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MTL1974 May 2019
Thank you for your answer. It is hard to change the way of viewing someone. To change from seeing her as my mom to seeing her as my mom and someone with Dementia. I will not let her know in advance. Fingers are crossed that it all goes smoothly. She is such a sweet loving person, the idea of her being upset breaks my heart.
Thank you again for your help.
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Your plan to set up her room with things she uses and has is a good one. I used that strategy to move two friends of mine--the wife with frontal temporal dementia and the husband with short-term memory problems and unable to process or understand what was happening to his wife. A friend took them out to breakfast in a nearby town and then to have their nails done. While that happened, the movers and I brought their bedroom furniture, pictures on the wall, their television, couch, recliner, tables, and lamp from their den and set up their apartment to look just like home. When they got there and the husband saw his favorite recliner and everything set up like his home, he sat down with a sigh of relief and has been happy ever since. He is still there 4 years later and still happy. He just misses his wife who only lasted another 5 1/2 months before passing. I was/am grateful I found a place that provided good care for them and good advice for me on what was happening.with the wife's decline. I hope you are as successful with your move and the care there!
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MTL1974 May 2019
Thank you JohnnyJ for your success story. It gives me hope and thank you for the well wishes. I appreciate it.
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NO you are not being selfish, you are doing the very best for her and with the support and agreement of her Dr. She may find it strange at first - go back and imagine the day you left your child at the school for the first time, or nursery - whatever - in a week it will be normal to her, she will know the stuff around her, and be far more settled than you will be. Prepare yourself for a negative reaction but don't feel guilty it won't last and she really will be safer and you will have more energy to cope when you visit.
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MTL1974 May 2019
Thank you TaylorUK. I will try and convince myself of the fact that this is the right thing for my mother and that she will be safe.
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MTL1974, I'm so glad that you have made arrangements to get her more help. Her doctor seems to believe that it is really needed. I would ask you if the doctor or someone who is authorized to perform assessments has conducted one for her to see just what level of care she needs? The reason that is important, is that while AL can offer a lot of care and support for people who have dementia, sometimes, the needs of a person with significant dementia are better met in a Memory Care facility? Do you know if the AL your mother is going has a wing with that option? I'd inquire about it. I know that when I placed my LO into AL it seemed fine, but, she quickly began to need more care as she resisted care, refused to get out of bed, became bladder incontinent, refused food, etc. and they felt she needed more than than a regular AL. So, we moved her to MC and saw a great improvement. Just something to consider. I hope things work out well for you and your mother.
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What does a memory care facility do for the residents? (I mean, that's different from the ALF)? I may need one for my mother if she keeps getting more confused. Thanks.
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Hello
I have experienced exactly what you describe with my mom. I had to move her to a residential care home at age 92. It was a very hard transition because I also had to move her away from my dad who was also aging & unable to handle the physical & emotional needs brought ion by her dementia.

A few things to think about & know

The move will be hard. Your mom won’t be happy & probably mad at you & your brother. She might even say mean things. It’s just her illness talking. Also she will be anxious & maybe afraid. Change is so hard for the elderly, but the dementia compounds it 10 fold.

hopefully the assisted living you’ve chosen (with her) will provide the amount of care she needs now & for the future because her needs will be ever changing. Sounds like she needs lots of help with bathroom needs & grooming. Some assisted living places do that well & some don’t.

If she is unsteady in on her feet at all, make sure she gets assistance with mobility. The last thing you want is for her to fall. At your house someone always had an eye on her. It won’t
be that way most likely.

Most importantly. Give yourself some grace. Truth is you & your brother won’t be able to care for her at home for an extended period of time. It’s exhausting mentally, physically & emotionally. Of course you both love your mom & feeling stressed & guilty are as natural as breathing. It’s a feeling that kinda stays with you even when you no longer care for your loved one at home because she will always be on your mind. But you are absolutely doing the right thing. You will be able to continue being with her without the 24/7 situation.

Just remember...it’s going to get worse before it gets better. Everyone will have to adjust. Also, your mom is going to have good days & bad days no matter where she lives. Hopefully she can connect with one other person that could be a “friend”. If she has friends in the area, maybe they can visit. Know that your mom may not even remember when you visit. I saw my mom almost everyday along with my dad, but most days she didn’t remember our visits.

Get to know the staff at your moms place. Those relationships will be so important for you. Visit at all different times of the day & evening. You can better tell if your mom is getting the care she needs. She should be up & dressed & clean each day & going to the dining room for meals. If she’s in bed extended periods of time or just sitting she’ll develop bed /pressure sores & also get weak. If you can arrange some type of physical therapy, that would be helpful too.

There ares many other things to share but don’t want to sound like I’m preaching. The fact that your mom is sweet (not usual with dementia) is wonderful. The staff & others will love her.

Take me care of yourself. You will need to be healthy & strong going through the stage of parenting your mom. You’ve reversed roles for now.
💕
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Try to get her room as set up for her as possible, but do not attempt to talk to her about the move. She will forget. And she will not want to go. Have your brother help you on the day you move her in. Stay a while. She will be very confused at first, but will adjust and be fine. Mostly you have to be very strong on moving day. I retained my mom's home care lady for four days and she and I were there with my mom most of those four days. It helped her I'm sure, but they might tell you to
not visit for a few days while she adjusts. It depends on the person I suppose.

Do they know about the incontinence at the assisted living? Some places will want the residents with this issue to be able to change themselves. Do they offer memory care?
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MTL1974 May 2019
Good day,
Thank you for your reply. I am trying to be strong and just focusing on the future with my mother being safely at the new residence and healthy and hopefully happy. I don’t know if the residence knows about the morning incontinence as it was my brother who was discussing with the resident care advisor about our mother and her test results from the residence’s tests. I will mention it when I go on Monday to fill out more paperwork.
Thank you for your help. I will inquire with the residence what they have seen works the best for their clients.
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Sorry for all you are going through. I went through the same with my Mom. Don't tell her what's going on. Just say everyone is trying to make her feel better. My mom was in long term care with dementia for 14 months and barely talked to us because we put her there. She couldn't live alone, we had no choice. There's never a good answer to these problems. Don't feel guilty, you're doing the best you can. Peace to you.
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MTL1974 May 2019
Thank you for letting me know that I am not alone nor am I anywhere near the 1st person that is doing this. Wow this is quite a tough thing. Thank you so much for your compassion.
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Aw MTL, I see so much of what I went through with my Mom in your post. I am so sorry for you that you have to do this.

My situation with my Mom was similar to yours except my Mom became seriously ill with sepsis after an undiagnosed bladder infection that ran rampant through her system. To make a long story short, she ended up after an extended stay in hospital, another extended stay in rehab to regain her strength and then a month long home healthcare trial that ended badly cause she refused to cooperate, realizing for herself that a nursing home was the answer.

Even so, she would forget that we decided this and would have to be reminded, up until the very day.

All I can say to you is try to be with her throughout. I know some people advise staying away for the first couple of weeks to help the person get settled. I personally think that this is a mistake. Be there with her as much as you can in the beginning. Don't force her to participate in things she doesn't feel comfortable participating in. I tried to do this with my Mom and regret it now. Let her do things at her own pace. Help her to maintain as much of her own routine as she safely can while she is there. Get acquainted with the staff cause it helps for future communications. If they feel like they know you and like you they'll be helpful when you need it.

I know this is tough on you but come back here often. There are so many smart, kind people on this site who have far greater advice than I have.

My heart goes out to you.
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MTL1974 May 2019
Thank you Gershun for sharing what you went through. Oh the stress you must have felt when your mother was so ill and then in rehab and then healthcare and then the move.
I am planning on asking at the residence what they think works best to help a person adjust. And have Evan decided that regardless of what they say, if I see that my mother is upset or not doing too well I will at least spend the night in her recliner to make sure she sees a familiar loving face the next morning or if she gets up in the middle of the night. Thank you again for letting me know that I am not alone (again I know I am not the 1st to go through this but it is nice knowing people are sending out positive thoughts or prayers). Thank you again.
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The best time to move her is to bring her to lunch at the facility and stay with her. After lunch is usually the time when there is some activity. Send her off with the group and that is the time to move her important belongings in. You can move the rest later. If you have family photo albums, leave a few in her room. You can try to coordinate if one of the monthly entertainers are there as the best moving day. Before the end of the afternoon, before she gets too tired, is the time to leave just telling her you will be back soon without a specific day or time.

Your worries about her behavior are not insurmountable. The staff will get into the swing of things with her incontinence. Early on she may have more laundry, but staff generally will coordinate the timing of tilting. I do recommend trying Abena briefs for overnight. Those diapers hold a lot of fluid.

You mention that she sleeps a lot. One of the best things about ALs is that staff will frequently encourage to participate in group activities that involve memory. Your mom should make new friends there
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MTL1974 May 2019
Thank you for your advice and positive thoughts. Since this is all new to me I am quite lost and I think am having a hard time accepting the loss of control. Meaning I have been the one to ensure that she is safe and health for so long that I cannot fathom that someone else would be able to do it since they don’t know her like I do. But as you mentioned this is what the residence does. They are experts at this. I will try and leave it in their hands. I look forward to going back to being her daughter and her being my mom.
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No set of rules on how to make the transition. Do what feels right at the moment. Sounds like you and brother have planned this move to make it easy as possible on mom.

Mom may find others at the assisted living home who she will consider friends and enjoy. It will take time, months.

If there is a regular "helper" assigned to your mom, a small token of your appreciation will even smooth the way of transition further. We brought fruit to the general station where the CNAs worked.

Remember her safety is important and the supervision at the assisted living home will help.  Once you and brother see how well she is taken care of, the guilt you feel will ease.

The house will be there if the assisted living doesn't work out after a year or so of trial. Don't be prompted to take mom home after a few weeks or months.

Good luck.
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MTL1974 May 2019
Thank you Roscoe2118 for your positive words of comfort that all should be well. Good idea on being extra sweet to those that directly care for my mother. Totally worth it to bring them some extra treats to make their work shift a little nicer and hopefully they will keep an extra eye on my super sweet mother.
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