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kenobuddy Asked June 2022

Mother has Alzheimer's. She repeats herself and acts weird at times, but doesn't want help from outside services, just her kids. What should we do?

Mom has adult kids, but she doesn’t think that anything is wrong with her. She has Alzheimer’s and acts weird at times and doesn’t remember what she did or said. She just wants to stay in her home and only have her kids to help her. Kids have their own families and own set of medical problems, too. Mom doesn’t seem to care and just wants it her way. She says she can do things by herself but, sometimes she forgets to bathe or eat. She wants to be independent, but we know she can't. She doesn’t listen to anyone and just argues. What to do?

lealonnie1 Jun 2022
Uh, you have FOUR posts all going on and written at the same time here on the forum! You may want to combine all your posts together into one cohesive one so that you can get advice in one place; o/w it's a bit confusing for us getting bits & pieces of information and trying to put it all together.

Your MIL has Alzheimer's. You and DH need to educate yourselves about what AD means, what it looks like, and how to handle it.

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

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

Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behavior to adapt to the dementia because the person with the disease cannot.


Wishing you good luck with all you have going on.
Llamalover47 Jul 2022
Ignore blank post.
Beatty Jun 2022
Regarding:
"She just wants to stay in her home and only have her kids to help her".

Yes very common - for many reasons.
-Change. Most people don't like change, may be fearful of change.
-Trust. Family over strangers.
-Communication. The 'kids' understand her, she understands them. This becomes even more pronounced if language expression & comprehension sets in.
-Expectations. May have assumptions based on cultural or family background. May have even looked after own parents.
-Denial. Didn't think 'old age' would happen to me! Or holds a false belief I am still independent. If family are helping (not strangers) this is seen as an extention of self - so still considers themself *independent*.

What to DO about it though?

Get together with Mom & work out her priorities.

Age in Place? If so, help set up home services. Ease her into this. Ideas inc introductions to 'your cleaner J'... J has friends M & C who also need work, a little lite cleaning, shopping assist, driving, later bathing & dressing. Drawbacks are it takes a Manager to arrange & co-ordinate all the services. Cancellations & no-shows are a problem - especially since Covid.

Or age in another place: with services already there, plus activities & company. Eg AL. Drawbacks are cost & a bigger change.

I think of these as Plan A & Plan B.

Offer no Plan called *family will sacrifice their own health, job & families*. Not to move in full-time nor be at beck & call.

Unfortunately age & illness can mean a person becomes egocentric & no longer sees how selfish that would be.

A good plan suits ALL the people in it. Otherwise resentment grows & risk to caregivers health increases.

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againx100 Jun 2022
People often want a lot of things that are not reasonable or possible. The kids here might want to have a family meeting to discuss what everyone is willing and able to do for mom's care.

Is her paperwork in order? Will, living will, POA? If she is not officially diagnosed with dementia or alzheimers then I suggest getting it done ASAP. If it's too late, you may have to do what Grandma says and get APS involved.

I would try to get outside services involved, even though she doesn't want it. I want a lot of things I can't have either. You guys can't let her "force" you to do things for her that you don't want to do. Look into how to set proper boundaries and get busy enacting them.

Sorry she's being so difficult.

LoveLea Jul 2022
Look out for her safety, as she’s no longer able to do it. Yes, there’s going to be some tough decisions and choices to make, so have a meeting with your siblings and come up with a good plan. Either she allows outside help in order to stay in her home or she’ll have to move where she can be cared for. I hate this disease. It steals everything.

Beatty Jun 2022
"she doesn’t think that anything is wrong with her".

This is lack of insight. Happens with dementia, stroke, mental illness. If there is damage in the brain, the brain cannot *see* or recognise it.

Have a look under articles & topics for Anosognosia. There are quite a few.

https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm

https://www.agingcare.com/articles/anosognosia-and-caregiving-suffering-from-a-lack-of-insight-196699.htm

ForReal Jul 2022
Hello? She has alzheimers. Perhaps she does not possess the ability to realize she is doing it? Or care about it?

Mountaingyrl Jul 2022
When a loved one has Alzheimer's it is not about what they want but what they need. It requires 24 hour care and if you are unable to provide that, she needs to be placed somewhere safe and with a team of people who are trained to care for her.

That doesn't mean you love her less or let her down, it means you realize she needs a higher lever of care than you can provide.

Katefalc Jun 2022
Remember that her brain is BROKEN And she is unable to make those kinds of decisions for herself. Do not pay attention to what she’s saying because she won’t remember what she told you anyway, hire caregivers and introduced her to them as her friends and she will adjust with time. Now is the time for you to take the lead and drive the bus, not your mom as she is unable to do so. She is in denial but she’s not going to be able to stay in denial. She will progress and possibly quickly. Good luck and hugs to you. 💜

Ohwow323 Jul 2022
I used the term "The doctor says" my Daddy was so ill and could not take care of himself anymore, he couldn't stand, he couldn't remember, he was just so ill at times. So when it came time I told him "The Doctor says you need to go to this place once you can do A, B and C then you can come home". He did come home 5 days before he left but I visited him daily and if he talked or did something that was just not in tune I just let it ride, why, I said does it matter he has ALZ and his brain is not working so no arguing no correcting just making him comfortable was my job.
prayers

Grandma1954 Jul 2022
With a diagnosis of dementia she no longer gets to chose what care she will get nor who will administer that care.
It is up to the person that has POA for her health and the one that has POA for her financial welfare to make the choices that will provide the best care for her. That can mean hiring caregivers that will care for her in her home OR it can mean placing her (yes, kicking and screaming if she is resistant) in Memory Care. (Caregivers that are hired by the POA take direction from the POA NOT your mom so she can not tell them to leave, only the person that hired them can fire them)
If there are siblings that do not agree with hiring caregivers or placing her in Memory Care it would be up to them to come up with a "care plan" that would satisfy the POA's for health and finances.
No one likes change. This includes people that do not have dementia. So change for someone with dementia is even more difficult as everything they know is taken away and the exhausting task of "relearning" where things are, who people are begins. But she will fall into a routine that will become comfortable and safe for her.

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