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Alzheimer's patient with sundowners lives in past... How to handle?

My mother-in-law has Alzheimers and Sundowners. Her personality does not help with these diseases at all. Although extremely loved by all, she has always been the type of person who had no hobbies, did not exercise, and complained often of aches and pains. With the onset of these diseases, she now has been complaining of not wanting to stay in her assisted living situation, but wants to go home. When she refers to home, she refers to a place and time some 40 years ago. The phone typically begins from early in the evening and phone calls continue until all hours of the night. Once we get her calmed down, no sooner does it start all over again. It seems better to not answer at times, but the family feels very wrong in doing that. Especially when she will leave a message sometimes crying and begging for someone to come and pick her up. She has packed her belongings once, has heard babies crying, has said a man was in her room, says she is ironing when she isn't, and consistently thinks those that have passed are alive. We don't know what to do anymore to help this situation. The "redirecting" doesn't seem to help anymore. Besides medication, which I know will be sedating, are there any solutions?
Status: Open    Jan 05, 2016 - 07:27 AM

Dementia, Caregiving

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Jan 10, 2016 - 09:06 AM

It sounds like your mom is in the same stage as my mom is in the AD. My mom has AD between Stage 5-6 she's been in an Alzheimer's facility for 2 years and healthwise has been well taken care of and I have no complaints. However, she also has Sundowners, and packs her bags - she leaves! down to the security guard and they bring her back - she sees her parents in the room, she sees a little girl, a little 4 yr old boy - she loses him and goes crazy looking for him, she hides from my dad who "comes home drunk and abuses" her (not true - he never did) but in her mind is real. Her mind has gone back now to when she was a teen. She just turned 80. She can't call anymore unless she gets out of control then the nurses call me to calm her down. She's on medication but on very low doses, the facility she's in doesn't like giving them medication. It's heart breaking to see how she "suffers" and there's nothing I can do to alleviate her suffering. She suffered all her life and I don't see why she should continue to suffer. Other than medicating her there's nothing the doctors can do. She wants to come home with me but it would be impossible for me to keep her because I'm the only one where I live (I live 12 hrs from where she lives) and I would have to secure my whole property for her not to wonder away from my home and get lost. I'm always in conflict when I speak with her. Redirecting works up to a poing once they advance to a deeper level in Alzheimers Disease "Redirecting" does not work. If she's in a facility the nurses, CNA's have the job of "Redirecting" them or keeping them going to activities. She sounds like my mom who always stays in her room! The facility my mom is in has activities from 11am-9pm and my mom does not attend. She eats in her room, and 95% of the time is in her room. We have tried everything to get her to go to the activities but she will not go. So, we have to let her be, and allow her to do what she wants to do. The complaining - I've had to just change the subject - if that doesn't work just agree with what she's saying and pay no attention. If she asks me to go get her I'll say ok I'll get ready and I'll go get you in an hr... She forgets in a few minutes! Arguing or reasoning doesn't accomplish anything. Music helps my mom when we visit her, I've posted pictures every where in her room, made her room very pretty, brought some of her furniture, plants, etc., but she takes the pictures down, packs all her pretty stuff because people "steal" all her stuff. It's all part of the disease. They hallucinate - part of the disease. This is a horrible disease that has no cure and patients live a long time. It's extremely hard on the family seeing how their parents become people they don't recognize. It's agonizing for me to see my mom so lost, so anxious, so "sure" she's going through such horrible scenarios - for her they are real. The staff can only do so much. I rather see her a little sedated than see my mom so upset/suffering/agonizing every evening because of her past abuse. So, I pursue the doctors and nurses to make sure they increase the dose. I don't want my mom suffering anymore than she's already suffered. I'm so sorry your loved one is going through this as well. It's ok not to answer the phone. No guilt should be owned. The disease is to blame. I wish your family the best. Rest assured that you have all done everything you could and as long as you know she's taken care of and well looked after, you visit her and bring her pictures, spend time with her, hug her, hold her hand, take her out, bring her favorite food, give her her as much as you all can. It's a hard road. I wish you the best and I wish your loved one peace!
I hope my experience will help some.
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By lavbiety on Mar 25, 2017 - 06:11 AM | Like (1)  |  Report

Thank you so much for your response. Your description of your Mother's behavior so closely matches the behavior of my Mother, except that she does engage in some activities at this point and is not a "wanderer." The most difficult thing for me , other than often feeling guilty that somehow I can't fix things or keep her at my home, is having to find a decent Medicaid facility, as she is running out of money. It amazes me that there are so few facilities that have any focus or specialty on Alzheimer's and that Medicaid recipients cannot have their own room and have to share a small room with someone else, almost like a hospital setting....very little focus on activities for residents and more focused on the more "deteriorated souls.
I can't understand that there are not more Medicaid approved facilities for Alzheimer's patients. Additionally, the Medicaid facilities are at least $4,000-$5,000 more than the "private pay" facility she is in, with a separate "memory care" unit!!
It makes no sense to me as to why she can't stay in her current facility and be on Medicaid!

By diana.mclemore on Mar 25, 2017 - 07:45 AM | Like (0)  |  Report

My question exactly! The Medicare/Medicaid facilities are horrible in the city I live. In order to have a facility with an Alzheimer's facility it's a step up to a private facility and their prices are unaffordable for me. My mom is progressively worse and my heart breaks because I don't want her dying alone. She's in NY I'm in Charlotte NC. My husband is very ill as well so I'm caught in the middle!! Thank you so much for your answer. I truly hope things work better for you. The government should be taking care of our seniors who always paid their dues working hard jobs to make sure their children had a better future!! God bless you. I wish you the best best!!

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Jan 10, 2016 - 11:00 AM

There are medictions that can relieve anxiety without being sedating. Dosage does have to be figured out so it will nt be a "get a pill and everything will be alright" situation. It may take a while.
Typically when someone says that they "want to go home" it may not necessarily mean a place but a time when they were healthy. They want things to be the way they were before.
Do not tell her that the people that she says are alive are in fact passed. This may just upset her more. Just say "they are not here now" or "they can not come today".
Do not feel bad in not answering the phone after a certain time or after her phone call. If it was an emergency the staff at the facility would get in contact with you. Tell your Mother-in Law that after 10pm you will shut off your phone. Once you tell her that do not answer the phone after 10. Or what ever time you feel is appropriate for your lifestyle.
Has she seen a doctor about her "aches and pains"? What she complains about may or may not be real but it should be checked out. Then you can deal with real or imagined aches and pains.
Good luck.

Jan 17, 2016 - 02:56 PM

Thank you so much for sharing your experiences. It has helped me understand a bit better. Thank you again.

Jan 22, 2016 - 12:01 AM

Dear P.

I feel for you. If your mother is indeed living in the past which happens with late stage AD, it might be comforting to her to have things that link her to the time she is living in. Imagine that you wake up one day and find that nothing is familiar. You are living in a strange future world and cannot remember one thing to the next. It would be, well, unsettling to say the least. If she is 80 now, but in her reality she is 40 or younger, perhaps haveing some items from that time, some music from that era, movies from that time, might all be a kind of soothing reality anchor for her.

This is a simple idea with no risk of side effects. There is little risk in trying it.

Dave PT
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