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Doglover99 Asked May 2022

Do those with dementia get very clingy? Needing advice on how to cope.

Husband’s mother, who has moderate vascular dementia, lives with us. We agreed to let her move in when she developed a health issue a few years ago. Recently, she was diagnosed with moderate vascular dementia after a stroke (and has a lot of other health issues as well). She has become extraordinarily clingy to the point of, when I wake our children up in the morning, she comes in their room and also tries to wake them up and “help.” She has recently started to become very inappropriate verbally, which I suspect is the dementia, and has days and nights mixed up and seems to have lost all modesty as well. She’s becoming difficult with medications and refuses to take them some days. She is definitely at a moderate stage. My question is, how do we deal with this new clinginess? I believe she is trying to help but it is driving me absolutely nuts thay I can’t have a minute alone or with my children without her also sitting there making inappropriate comments or “helping.” I am trying my best to help her, but didn’t expect to become her caretaker, nor did my husband, but he seems closed off to a memory care unit right now. I believe we have a right to our own lives and feel that we’ve done more than our fair share here. I think compassionate care can also include a home where medical professionals are present, and really, she needs round the clock care and supervision. Help me come up with some ideas, please.

MargaretMcKen May 2022
Hi, and welcome to the site as I see you are a new poster. If you click on Care Topics on the top right hand side of your screen, you will get an alphabet. Click on V for Vascular Dementia, and you will find several articles, many questions and some discussions about it. That’s an easy and useful place to start.

You can find articles about other types of dementia, and many other useful things, if you skim through the Care Topics alphabet. I hope this helps, Margaret

Beatty May 2022
If you started researching elder 'Needs Assessment' in your area & then booked it, would DH be OK with that?

Getting a clear, up to date evaluation of care needs can really help.

If/when 24h supervision, assistance or behaviour management is required, then the discussion moves to how to meet those needs. You are but one person. In-home aides or transition to memory care is often the next practical step.

Your DH may not *want* this. But he will need to look at what is NEEDED.

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Beatty May 2022
I suspect you have husband issues. Not bad! Just he may be in denial at the moment?

What your MIL is doing is called 'shadowing'. It is joint top reason for being placed into care. (Other is being double incontinence).  

"he seems closed off to a memory care unit right now"

Take a weekend off. Where you take the kids, or even better, go away with girlfriends somewhere. THAT can often change a husband's mind on memory care 😊

I'll be back once I've read the replies..

lealonnie1 May 2022
Your primary concern needs to be your children, not your MIL, and your husband needs to agree with that! She needs Memory Care AL or a Skilled Nursing Facility if she has no funds to private pay in Memory Care, with Medicaid to foot the bill. She's 'shadowing' you which means she's underfoot all the time. The behaviors only worsen with time. You cannot provide 'round the clock care and supervision' to an elder when you have children to care for, and that's a fact. Perhaps DH needs to take a week off of work to care for his mother full time, so he can see and feel the effects of this on the household and on his CHILDREN. Saying inappropriate things can easily lead to doing inappropriate things and hitting your children or stripping naked, pooping on the floor, smearing feces around the room, etc. It really can get quite horrible in short order, which is why Memory Care ALFs are popping up like flowers on every street corner in the country.

In the meantime, I suggest you and your husband 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 for you to use when dealing with grandma nowadays:

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 behaviour to adapt to the dementia because the person with the disease cannot.

Wishing you the best of luck with all you have on your plate. It's a LOT.
imavent41 May 2022
Well said!
TChamp May 2022
People with dementia lose the ability to behave in a socially accepted manner. In vascular dementia there is structural damage to the brain centers that deal with personality and inappropriate behaviors. There is no solution to those problems.

JoAnn29 May 2022
Unless your MIL has money she may not be able to afford a MC. If she can, I suggest you place her because this will only get worse. If she cannot afford MC then find a nice LTC facility with Medicaid paying. Be aware, her SS and pension will be required to offset the cost of care.

If your MIL is this bad, she cannot be left alone.

JoAnn29 May 2022
OP said they took her in "years ago" and she was just recently diagnosed with Dementia.

funkygrandma59 May 2022
First I have to comment on your your statement "but didn't expect to become her caretaker, nor did my husband." REALLY??? Your MIL has vascular dementia which is the most aggressive of all the dementias,(and with a life expectancy of only 5 years)along with other health issues, and you didn't expect to be her caretaker? What did you expect? Just curious. I can only guess that you didn't do your "homework" and educate yourselves about dementia(vascular in particular)prior to agreeing to take her in. It will only get worse you know, so it's best to get your "ducks in a row" now.
Now to answer your question, yes being clingy or shadowing as it's called, is very common in many of the dementias, and can be quite annoying as you are finding out. It's often a phase that will eventually pass, but it can last for quite a while.
Your MIL's brain is broken and it will never get better, so I hope you and husband can have a conversation soon about what exactly the next steps should be in her care. And do take the time to educate yourself too about the disease. Teepa Snow has some great videos on YouTube, and the book The 36 Hour Day, are a great place to start.
I wish you all the very best.
lovingw1f3 May 2022
Hi FunkyG,
I have found it difficult to educate myself about vascular dementia. I'm usually sent to Alzheimer sites. So thank you for this name.
My husband also has vascular dementia diagnosed in 2018. But he shows none of these mental signs. He mostly shows Parkinsonism in his walking and ability to dress etc. His hands are very clumsy. And it seems to me he has a lot more time in front of him than 1 or 2 years.
Have you any thoughts for me on what I might expect? Have you heard of anyone like him?
And thank you so much for this info.
Pam

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