Open to any and all suggestions!

leann.hubbard · August 26

Hi everyone, I’m looking for advice from others who have been through this with a parent or loved one with Alzheimer’s.

My mother-in-law, Diane, was recently diagnosed with Alzheimer’s after extensive neuropsychological testing. She is still very capable in many ways, but has significant short- and long-term memory problems and doesn’t always recognize where she needs help.

Her doctor has reported her to the DMV, so she will soon stop driving, and we know she will need more assistance with things like shopping, meals, appointments, and getting out of the house.

We recently started an aide, Judy, who had a great first day with Diane—she helped with lunch and shopping and everything went really well. The very next day, Diane said she doesn’t want Judy to come back.

How do you handle it when someone with Alzheimer’s refuses help that you know they need? How do you make assistance feel less threatening while still being firm that it’s necessary? At what point did you stop letting them make the decision about whether caregivers could come?

We really want to preserve Diane’s independence and dignity, but we also know we can’t let her memory impairment put her safety at risk. Any advice or experiences would be greatly appreciated.

Also would appreciate any advice when it comes to taking away her car.

Thanks in advance,

LeAnn

SusanB-dil · August 26

Hi leann - welcome to 'here' but sorry for the reason.

This is not uncommon. Please know that your MIL has anosognosia. This is not denial, but rather, a total misconception that they see that 'all is well' and everybody else is just aggravating them.

What a lot of us have done is to tell our LO that they are actually helping the caregiver. "The caregiver needs more hours for certification" or "The person needs a little extra income to take care of their children". Whatever works. Fiblets will become your friend.

If you could disappear the car, it would help. 'Out of sight, out of mind'. "The car has a recall and needs to be repaired… and the part is on backorder." At the very least, disable the car (disconnect battery), and the parts are on backorder. "Judy or I can take you where you need, the car isn't working right now". Repeat as necessary.

also - just fyi - make sure that paperwork is in order. DPOA and HIPAA accesses very important.

H1235 · August 26

Welcome. It sounds like you’re off to a good start. Has anyone been appointed DPOA. This is very important. A lawyer should also be considered to discuss a living will and any financial plans that may be necessary (dementia care is expensive).
Many with dementia have anosognosia. This is the inability to recognize symptoms or limitations. It’s difficult to deal with. I have found that because of the anosognosia mom comes across as very confident and self assured. It’s easy to get fooled into thinking she is more capable than she really is. I think most agree that safety has to trump independence. There are a few things you might consider trying just in general. Use a therapeutic fib. Tell her the person coming needs hours for her certification and she would be helping her out, maybe even tack on that she is a friend of someone in the family. Some things you might find it’s best to not tell her about (just do what needs to be done), especially if you think she will get upset or make unreasonable demands. We stopped telling mom we had hired someone to mow the lawn at her house. She was angry and thought she was perfectly capable (if she can push a walker, why can’t she push a lawnmower). If she makes statements that are not true, as long as it doesn’t matter, just agree and go along with it.
As far as the car you might try a fib. It needs to go in for repairs, there was a recall.
We have a saying here. Never try to reason with a person with dementia. Their brain just doesn’t always allow them to see logic. Sure you might try once, but if you get pushback, I would stop immediately. It’s only going to cause stress and upset for everyone.
I would also caution you that with the anosognosia she may believe she can do things that are actually dangerous and it’s very hard to know what they may decide to do. Even if she has been perfectly content to not use the stove, she may decide she wants bacon tomorrow when she is alone and forget about it and start a fire. We got lucky in this situation, but it was a wake-up call. The belief mom had that she could do things she actually couldn’t was the biggest reason she needed to be moved to assisted living. I will add a few resources. I hope something here is useful.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

https://iona.org/therapeutic-fibs-ok/

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

leann.hubbard · August 27

https://alzconnected.org/discussion/comment/280918#Comment_280918

Great advice, thank you! This is the first im hearing about Anosognosia and it sounds like her to a T! It is helpful to understand, we have just been calling it denial but this does put a slightly different perspective. We do have DPOA all set.

leann.hubbard · August 27

It’s so interesting because there are moments when she seems completely normal and absolutely convinced she’s fine, and it almost makes us feel like we’re imagining things. But then the facade cracks quickly, and we’re reminded of what’s really going on.

This information has been helpful. I hadn’t heard the term anosognosia before. We’re learning the mental game of agreeing, redirecting, and changing the subject. She can still hold a normal conversation at times, so it’s hard to switch gears and remember we’re essentially dealing with a different version of her.

Reasoning and explaining aren’t working, so we’re leaning into fibbing and simply taking action when needed. It’s incredibly difficult to take responsibility for a parent who doesn’t believe they need help. And trying to manage all of this while raising elementary‑aged kids has been especially challenging.

cbender40 · August 27

https://alzconnected.org/discussion/76956/open-to-any-and-all-suggestions

Hello. I went through the same thing with my mother. The aide we have now is the same one from the very beginning. It was a very rough start, but we knew we had a keeper when we saw how compassionate she was to my mother even though my mother didn’t want her there.

Honestly, it just took time. We would acknowledge how my mom felt, but also tried to highlight all the positives of having someone there for assistance. Luckily over time my mom would actually look for her and then they became friends. There are still days where she can be a bit nasty to the aide, but unfortunately it’s just part of the disease.

What I will say is that whomever you decide to have help your mother-in-law make sure they have extreme patience and understanding because it’s such a difficult job.

Good luck and God bless.

leann.hubbard · August 27

https://alzconnected.org/discussion/comment/281014#Comment_281014

Yes! She called us yesterday right after the aides visit and said they had a great time, then today she called her sister and said she never wants to see the aide again. Its like whiplash! I do think she has a good time with the aide and is thankful while she is there, but then it changes when she isn't around. We are going to call her a friend from here on out and try some of these suggestions when she complains. So far the aide seems lovely and has dove right into the things we needed so we are thankful.

Open to any and all suggestions!

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