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?
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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.
"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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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.
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
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.
prayers
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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