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My mother who is 94, has always been a home-body. She lived over 50 miles from myself and my sister. My step-father passed 4 years ago and she still wanted to stay at her home. On the surface, it looked as though she was doing ok. Come to find out, she has a cancerous tumor which has now been isolated with medication. She has stage 4 or 5 of dementia. We moved her to a Senior Independent Residency. She seems to be doing fine except when she has too much idle time, she calls to ask when she will be going home. This happens on the average 15 times a day. My answer has been when the doctor says you are better. In reality, the Senior Residency is her home. My question is do shatter her hopes of going home, or do I continue to play this charade to give her something to look forward to?

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I had some success in pointing out to my LO that she needed a lot of "help" before she could even THINK about leaving the facility. She, being a very high maintenance type, agreed with this and was eager to see what she would be getting and from whom. I further explained that the quality, quantity, and timing of that help was dependent upon her insurance company and it would be a shame not to get every possible benefit from the plan she has. I reminded her there are certain covered benefits to which she's entitled as a member of the plan. She agreed with this and hated the idea that there could be some benefit that she might not get if she were discharged "too soon."

In reality, she was not leaving the facility - ever. It was permanent. However, placing the blame on the "insurance company" was mysterious enough that she went along with the story. And, with the way her insurance company treated her following her stroke.... it's not entirely untrue that her very life was in their hands - including where she would reside.
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How does 'I don't know, but at the moment this is the best place for you' sound? And then point out all the positives about where she is etc
I've got a real thing about speaking the truth(I'm not taking the moral high ground at all) ...hence my 'seekingtruth' name. I do wonder if it's b/c my own mum tells sooo many lies. I've almost got an obsession with speaking my truth and sometimes am 'too honest' I've been told.
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Bill3468 Jul 2022
Interesting take on the idea. Thank you
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If it’s a comfort to you, you really are telling the truth, but you’re omitting the part where you’d say “…..but the doctor won’t ever say what you want to hear”.

She is now living, in her damaged mind, in “dementia truth”. Her truth is different from your fact based truth, and she won’t be persuaded that your truth is correct.

Ask yourself if what you’re telling her gives her peace and comfort. If it does, you are NOT doing anything “wrong”.

You’re doing something loving and kind.
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Bill3468 Jul 2022
Thanks that's great to hear
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Yes, they seem to go back in time. They do not see themselves or others as the older versions but the younger versions. Thats one reason, IMO, that they do not recognize husbands, sons or daughters because they remember them younger. If you should them a younger picture then they probably will know them.

She will eventually except the AL as her home. Just give it time.
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Seniors with dementia who want 'to go home' is a very commonplace thing. Your mother may not even be talking about going back home to the one she left before going to Sunrise.

As their disease progresses, they may have access only to their first 50 years, then 40, then 30, and so on, until they go back to their childhood memories. This is not an orderly reversal – the person may remember more or less on different days and at different times during the day.

This results eventually, in the person with Alzheimer disease/dementia thinking they are much younger than they actually are. It is not as though they realize they are, for example, 81, but they can only remember their first 30 years. Instead, it is as though they are the person that they were at age 30. Consequently, they are confused, because they may not recognize their family, since they are looking for the individuals they were sharing their life with at age 30.

And, also looking for the HOME they had at that age, asking to 'go home' to that place in time, which is impossible. They get stuck in the 'loop' of asking the same question, over and over again, about 'going home' and that's likely where your mom is right now in her head.

You telling mom that she can go home when he doctor says she's better is the best answer, really. It defers the matter to her doctor, and puts it off for the moment. Distraction is the best technique b/c no matter what you tell her, she's going to forget it anyway and ask you the 'going home' question another 200x in the next week anyway.

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.

The full copy of her book is available here:

https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

The booklet is helpful b/c it gives tips and tricks to deal with your mom in a better way.

The difficult times she experiences in the afternoon is known as Sundowning, and comes along with dementia as it advances. My mother had a terrible time in the afternoons with wanting to go home & insisting on seeing the dead relatives and her mother in particular. Ativan at .25 mg dosage helped her a lot and calmed her down significantly. Do speak to mom's doctor if this behavior causes too much agitation and anxiety. Also speak to the Activities Director at Sunrise about getting mom involved in ALL the daily activities at the AL, esp during her 'idle' times.

Best of luck with a difficult situation. I hate dementia with every ounce of my being.
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Bill3468 Jul 2022
Thank you very much. You have been extremely helpful.
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I believe I stated the residency incorrectly. She does have assisted living at level 2 at Sunrise Senior Living Residency. Yes they do have Memory Care available. At this time she is able to take care of herself with assistance for showering and getting dressed. They check up on her every so often and she does voluntarily participate daily in exercising and other activities during the day. She is fine until she has idle time; after breakfast for about 2 hours, after lunch for about an hour and after dinner for about two hours. Those are her most difficult times.
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JoAnn29 Jul 2022
Thats when she "sundowns".
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At her age with her health conditions and dementia, I would say let her keep thinking she's going "home" at some point. When I worked in the AL facility, we had residents with dementia who thought they were only going to be with us temporarily. After a while they accepted that they weren't going home. No one had to tell them. The number of times they'd ask about going home got less and less. Finally they just forgot about it and stopped asking.
It's good that your mother likes activity. Many do not. She needs more of it. Would it be possible to hire her a companion a few hours a day? This way her idle time would be less and so would the phone calls.
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JoAnn29 Jul 2022
We had a client who was also an Aunt to my boss. She was living on her own when literally overnight her Dementia worsened. She would not allow the Nurse in the house saying "Caroline is not home" She was Caroline. She had to be placed and adjusted really well because she thought the facility was a Hotel and loved that they had table clothes on the tables when she had dinner. She said she was treated very well.
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My MIL ask everyday to go home.. the answer is when the dr says it’s ok to go home… she won’t remember if you tell her the reason she can’t go home and it would be more traumatic. My MIL packs most every day.. it breaks my husbands heart. She now often believes she is at work….

hopefully you are preparing for her future. I would be afraid for her safety at this point . Is she in independent living or an AL? Do they have a memory care unit available? One that will eventually take Medicaid?
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You’re saying the right thing…but does this independent living have al or mc options?
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Bill3468 Jul 2022
Thank you. Yes it does have mc.
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