Mother refuses to go to memory care appointment for diagnosis

LovingDaughterFar

My mother has been showing obvious signs of some sort of cognitive decline over the last year though may have been dealing with it for longer. She is very good at hiding it because she is quite socially skilled. We had to move my father out of the house they shared and into independent living because she was getting very angry with him about things that were not true and did call the police on him one evening. That is when we moved him out. She did see a geriatrician in the spring who did initial testing. The doctor told my sister that something was definitely going on and that my mom should go to a memory clinic they recommended for further testing. The doctor also told my mother about her concerns and recommended the memory clinic plus some occupational therapy in a calm way but my mom became angry and said that she is perfectly fine and does not need it. We made the appointment anyway in Aug and tried to get her to go telling her it was her primary care doctor but she refused to go. She gets angry about going to the the regular doctor and is astute enough that if we took her saying it was something else she would refuse to go in. How do my siblings and I help her to get care that we think could help if we can't even get a diagnosis.

SusanB-dil

Hello and welcome -

uughh - your mom has anosognosia. This is not denial, but rather the total idea that nothing is wrong and everybody else is just out to aggravate them. How they see things is their 'reality'.

Agree - she does need something to dial back that anger and agitation. Unfortunately, reasoning with her won't work. Her reasoner is broken. You could try telling her to go with you to an appointment for you. She may get mad when she finds out it is really for her, but maybe it would help if you at least got her in. Would it work if you even told her it was for a 'required' Medicare check?

Sorry you are dealing with 'this'. It is rough.

caregiving daughter

I would get in touch with a memory clinic. My understanding is that it is a practice, often affiliated with a teaching institution, that specializes in dementia care. Often a larger practice like this will include social workers. Tell them your situation and get their counsel on how to proceed. I have to imagine they see your situation a lot. The practice should also explain the process. My guess would be that a neuropsychologist would make the formal diagnosis. It would be worded as probable as there is no one specific test. A series of OT type tests would need to be done over the course of a couple hours to understand her behaviors and what daily modifications would need to be done to keep her safe. My mom went for the first series as she loved her primary and he asked her to go to the specialist. She was to go back but I was right in your shoes where she flatly refused. Fyi that the neuropsychologist gave her a written probable diagnosis, and she could read; however, she did not understand the words (both vascular and ALZ). Her primary prescribed the dementia medication. Unfortunately, while I was trying to find a way to convince her to go again, she developed an infection. The latter required the ER, respite care, and then ultimately memory care placement. With mc, her new primary as well as a psychiatrist were able to see her there.

It is also critical that poa's, etc. are in place so it is important that an attorney be involved.

Please hang in there.

LovingDaughterFar

Thankyou, didn't think about the social worker at the memory clinic, will reach back out to the memory clinic and see if they have any ideas to help. We do have POA's in place if it comes to that. She is very suspicious about anything when it comes to doctors unless it's the dentist or eye doctor. She has always been a little averse to going to see the doctor even before all of this started which makes it harder.

We did get her to agree to move into the same independent living facility where my Dad is though in her own apartment. Going to move her hopefully by end of September, hoping that the smaller place and less to worry about will help though worried the change could also make things worse. She can't live on her own in their house anymore. Too overwhelming for her though she doesn't understand that, she just tells us how busy she is all of the time. Depending on the day she is ready to move and the next day she won't. My siblings and I decided we just have to make the move happen and deal with her anger for a while if it comes to that.

She is still driving and tells us how she is a wonderful driver. She will just take off and go to the mall or the post office almost everyday. We track her phone so we are able to see where she is. No accidents or tickets a far that we know of and she would know if we did something with the car, it is one of the most important things to her.

Luckily she is allowing my sister to pay the bills now and we have gotten on top of all of the financials.

Did not know about anosognosia until recently and we felt like she was just being difficult but now know she can't reason properly anymore. So difficult to deal with for all of us and makes me sad that this is how she is now. Any other advice on how to work with someone who can't reason anymore would be great

https://alzconnected.org/discussion/comment/280966#Comment_280966

SusanB-dil

Oh, dear - the driving… If something should happen, insurance may not cover a thing. She may think she is doing great, but….

Could someone disable the car? And then just tell her the part is on backorder. We had to disable the car, and then tell MIL's helpful neighbor to please not 'fix' it. Great neighbor, but in this case that would have not been so helpful. If necessary, send her a recall notice, disable it, and again mention the part is on backorder. And not only for her own safety, but those on the road around her.

We disabled it, and she later admitted she got lost going to the hairdresser she had been going to for years. Then she admitted she came to an intersection and forgot what to do.

As far as working around broken reasoning, the one who has DPOA can step in, get it done, and she can ask questions later.

Whether or not one of you has HIPAA accesses, you can still let the doctor know what is happening beforehand, via note or phone. If no HIPAA privilege, they just are not able to get back to you.

April23

I suggest you drive with mom at your earliest opportunity and give the car a good once-over. I drove with my dad the year he went into MC. At the time, he was still doing most things independently, still cooked, shopped for groceries, socialized, all ADL's, on the surface he seemed fine. I watched him change lanes without ever looking if the lane was clear. When he parked, he took up two parking spaces. When I sold his car, I saw lots of curb rash. I also later found out he was getting lost occasionally. I would definitely let the memory care doctors know she is still driving and possibly they can be the "bad guys" and inform her when it's time. If she can no longer manage finances, driving will not be far behind. Also PWD are very good at hiding their deficiencies in the earlier stages. IL may work in the short term but you may want to have a plan B ready.

H1235

I’m glad someone has the DPOA that so important.There are a few different approaches that i use depending on the situation. 1. If her mixed up off the wall thinking is about something that really doesn’t matter, just let if be and agree with her. 2. Do what needs to be done without consulting her or sometimes even telling her. I changes the mailing address for all her bills. If I had told her she would have been furious. She never even realized she wasn’t getting bills anymore. 3. Use a therapeutic fib. I had always that of this in terms of not telling them a loved one has passed if they think they are still alive, but it is helpful in other ways as well. As Susan said telling her the car needs repairs is pretty common. I use little fibs often, because the truth would just cause anger and/ordepression. I hate doing it, but I don’t want her to be upset if it can be avoided. 4. Never try to reason with a person with dementia (this should have been number 1). Early on you might gently try, but it can get bad quickly. So if you get even the slightest pushback, stop! Logic and reasoning are really challenging for a person with dementia. 5. Accept that sometimes, for her safety, you are going to have to do things that are going to make your loved one very angry. It’s not your fault! Dementia is the reason. If you look only at not making her mad and not taking away independence, then she is probably not safe.

As far as driving, I believe if the symptoms are obvious enough to warrant concern on your part and a doctor telling you she needs to be evaluated, then she probably shouldn’t be driving. It’s about so much more than getting lost, there is reaction time, remembering traffic laws, depth perception, managing multiple things at once, a lack of empathy and understanding how dangerous a situation can be. Her anosognosia means you can not trust her to tell you if she is safe to drive. I expect you will find very quickly that she is not able to manage in independent living. When my mom was diagnosed (stage 4, the typical time that most people are diagnosed), we were told mom was not safe to drive and was not safe to live alone. Again, she was not diagnosed late.

I will add a few resources that I hop will be helpful.

understanding-the-dementia-experience.pdf

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

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

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