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jenylj Asked March 2022

How do I deal with daily requests to go “home,” call people who are dead, and explain where everyone is?

Mom can’t accept or remember people have died, especially her parents and husband (who died while she was in rehab facility). Every day there are tears and confusion about how can she get “home,” go to her parents' house, find phone numbers to call, and she gets herself all worked up. I moved her to my house from a rehab facility due to the cost and I’m retired with a big house.

LoopyLoo Mar 2022
A friend of mine had her mom-in-law living with them. Her husband had died a few years prior, before she got dementia. She would ask where he was at least 20 times a day.

At first, they felt honesty was the best policy. They’d tell her “he’s in Heaven”… and she’d burst into tears. She was basically reliving the moment she was told he died. Would stop crying a few minutes later… and ask where he was again. And then be upset at the terrible news. Repeat, repeat. It was hurting them and definitely hurting her.

So, a new approach was necessary. They decided her husband was “out”.

“He’s at work.”
”He went to the store.”
”He’s busy right now.”

It didn’t stop her from asking all day, but it stopped her sadness and tears. There was no point in being honest while her mind was no longer in reality.

Countrymouse Mar 2022
Snakes alive.

I have time on my hands and a big house, so what do I need with all those expensive facilities and their trained staff and person-centered activities and opportunities to socialize...

You can take a Masters Degree in Dementia Studies, you know. And actually, as you have time on your hands and a resident research subject, I can think of worse ways for you to learn the tricks of the trade. I'm not being entirely flippant.

Meanwhile, there are the therapeutic fibs and there is tearing your hair out to fall back on; but also try:
open questions (see https://www.extracare.org.uk/care-services/dementia-care for more detailed explanations of the holistic approach this is part of - if the website won't let you in, let me know and I'll try to swipe a few relevant sections)
unrelated activities (meals, clearly defined tasks such as sorting and folding laundry, music)
reassurance (we'll find out; you're safe here and I'm with you; let's eat dinner first, and we can talk about it at table).

Whatever approach works to calm her and settle the question for now, it is in the nature of the disease that you will have to rinse and repeat all day, day by day until she moves on to the next thing.

You are going to need a) infinite patience and b) practical support. Do you have those?
jenylj Mar 2022
I do have some time on my hands but I take care of my house, enjoy having time for my crafts and I would like to take care of my Mom as long as I can. I have my own health issues to deal with (Ankylosing Spondylitis, Psoriatic Arthritis, Psoriasis, Type 2 Diabetes and Panic Disorder) as well as hers. One of the main reasons I moved her in with me was because she was in upstate NY and I’m the closest (out of 4 kids) at 750 miles away. It just tears me apart every time she asks…not only because she can’t comprehend my stepdad has died, but I lost my husband to Glioblastoma 3 years ago and we have to go over that constantly.
I didn’t mean to infer that I didn’t appreciate the rehab facility she was in and was sitting home with nothing to do. I retired as soon as I was eligible so I could enjoy my crafts and travel with my husband…unfortunately cancer had other ideas. I just want to give my Mom some enjoyable time in a home as long as I can.

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TChamp Mar 2022
All of that is expected from someone who is suffering from dementia, Nothing can be done, reasoning is useless. Let them live in their world of fantasy.
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lealonnie1 Mar 2022
Of course something can be done; compassion & empathy can be used when the parent is distressed and asking where her parents are, where the dead family members are, and saying she wants to go home. Which is what the OP is asking: what to say to her mother when asked? "Let them live in their world of fantasy" suggests they're enjoying themselves and should be ignored in their distress and anguish. Sad & tone deaf comment Champ.
freqflyer Mar 2022
jenylj, time to start using "therapeutic fibs".

My Mom was 98 years old and in a nursing home, because she was at a stage where it took a village to help daily.

Every now and then she would ask to go see her parents, whom of course had passed decades ago. I would say "They are visiting the old county" to which my Mom would smile and say "that's good", thus accept that reason why we couldn't visit.

Later she would ask to to call one of her sisters [all of whom had passed] and I had to quickly think of a fib that Mom would accept. I would say "Betty is with her church group on a trip", which my Mom would remember that the group was always going somewhere.

Then the following week the same questions were asked, and I would give the same answers.

I know some people try to tell their loved ones that a person had died, but then the love one would grieve all over again, every time that information is given.

lealonnie1 Mar 2022
P.S. I used to tell my mother (with advanced dementia) that the relatives didn't have a phone so she couldn't call them. She did reach the point where using the phone became impossible (along with all other electronic devices), so the issue was moot. She'd ask anyway and say she'd like to call her sister, for instance, but I'd tell her "Connie isn't home today" or come up with another story to suit the moment. Get creative, is the point.

lealonnie1 Mar 2022
No, do not tell her over & over again that her husband, parents, and other loved ones have died! Doing so makes her relive the trauma over & over & OVER again which is cruel! When dementia is involved, there is no short term memory; so she will forget what you tell her. Therefore, the best thing you can do is create a story about where the dead loved ones are: I used to tell my mother that her mother (whom she was obsessed with) was living in Florida b/c it was too cold for her to live in Colorado where we're at. Her husband is visiting relatives and will be home later. Make up stories called 'therapeutic fibs' to keep mom calm b/c THAT is your only goal; not to upset her and keep her upset by telling her that her loved ones are dead! Then distract her onto another subject or give her a snack.

As the 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. This is why your mother wants to 'go home' and is looking for her parents.......she has regressed back to 20 years old, in her mind, and is looking for the home she lived in with her parents at that time!

Here is a wonderful 33 page free download for you to read that is very helpful:

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

It's important for YOU to understand how the mind of a demented elder works if you intend to care for your mother at home.

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Also check out Alz.org to read about how to safety proof your home now for mom's benefit.

Wishing you the best of luck with a difficult situation.
jenylj Mar 2022
Thank you. I’ve been replying “I doubt they’re home”. I will most definitely read that booklet. Thanks for the suggestions. 💜
AlvaDeer Mar 2022
Kindly, gently, honestly, and over and over again. This is a part of dementia. It won't go away. They tend to get fixated on a few questions. Later perhaps a few others.

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