New here and probably should have been here a while ago.

sillycat · June 11

Mom started forgetting things and developing coping mechanisms 3 to 4 years ago. My sister, who is a doctor, and I tried to get her to go have a cognitive test and she refused. She still refuses. She has progressed from confabulating to perseverating and seems sometimes very agitated. I think she "gets up" for her annual physical and her primary care dr hasn't said anything. She refuses to admit she has issues to us and refuses to talk about getting help. She and her husband switched from their kids having POA to each other having it for the other. We, nor his kids, can talk them out of this. Her husband has a plethora of health conditions, falls a lot, and also doesn't seem to know what is going on as much as he used to. I don't even know where to start... He, pediatrician over 35 years ago, recently "diagnosed" her with rosacea for a rash that started on her face and migrated to her chest.. We did get her to go to urgent care and they put her on Benadryl. She won't share the work up with us and my sister is concerned that it might be a malignancy. Any and all advise welcome.

SusanB-dil · June 11

hi sillycat - welcome to 'here', but sorry for the reason.

Unfortunately, without the POA, there isn't a lot you can do. You can keep 'bugging' them and maybe he will give in and give in to one of you. Without HIPAA authority, you CAN let her doc know what is happening. They just will not be able to get back to you directly.

Short of going for guardianship, which, I understand is a hassle and costly, you may just have to just keep watching out for them. If the rash is still there, maybe get her back to urgent care? or do tell her PC about that as well. Maybe she can get a referral to a specialist - and hope she goes - if needed.

The only other thing I can think of is a getting them a welfare check, if things are getting 'that bad'?

harshedbuzz · June 11

@sillycat

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

That sounds really challenging. Many PWD need to be "tricked" into being evaluated. A PCP can start the process of ordering imaging and bloodwork to rule out other conditions that have similar symptoms as dementia. You can reach out to the doctor even without HIPAA, btw, to describe symptoms you are seeing.

I would be especially concerned about the Benadryl. Most doctors are moving away from it for a lot of reasons.

https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-20150128812

If you and your sister are concerned, seeking guardianship might be necessary.

HB

H1235 · June 12

Welcome. What an awful situation. As harshedbuzz has said sometimes a fib will work. Notify the doctor of your concerns, cross your fingers and then try to convince her she should have “her blood pressure” (or whatever will convince her to go in) checked by the doctor. I would strongly suggest you avoid any mention of her symptoms to her. Many with dementia have anosognosia. This is an inability to recognize their symptoms or limitations. Any mention of them comes across as gaslighting or being condescending. This causes anger and things can get ugly. I wonder if it might be worth starting the guardianship process now. If you wait too long something terrible may happened. At the very least it might be worth talking with a lawyer to see what’s involved. I believe that during this process there would be a court ordered mental health evaluation. But I would think you will need some evidence/documentation that shows her struggles/ lack of care to even get the process started. If there is a situation were she goes to the emergency room again, you might try taking to a social worker. I believe that even without hippa rights you might be able to request/demand a mental health evaluation. I hope you can figure something out.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

Victoriaredux · June 12

Your Mom and her husband have obviously circled their wagons and cut off their children from POA powers to try to maintain control and with maybe a touch of denial . Don't blame them being scared.

Do you have a good relationship with your step-brothers/sisters? Maybe you could select one or two from each "side" that are the ones most likely to be listened to and they approach both parents together and say- "of course you want to be each other DPOA but what if you are both in a car accident, sick together with a COVID thing - then who would help you out 'until you are better.' You don't want the courts to be involved right? That's expensive and who wants them deciding stuff? You're our folks , we love you and all us kids want to be able to help you. Maybe considering naming one of us to be each of your backups- you first of course ,but us as a backup?" That may get you the wording to be able to step in without a court action in the future.

Is there a way you could spend a couple of days at their house - say yours is being fumigated or something and then be able to see how things are 24/7- check out dates of food in refrigerator, try to scope out if bills are being paid , check kitchen towels for burnt edges [shows inattention] . Try little tests like if a smoke detector battery is tested do either or both of them understand what that noise is…

If you know who their estate attorney is maybe you could drop them a note and say- know you can't respond but we have concerns, a letter to their PCP also listing specific issues. These types of issues are time intensive for professionals but raising their awareness may make them pay more attention and proactively start to suggest in home care etc.

sillycat · June 12

https://alzconnected.org/discussion/comment/274693#Comment_274693

All good suggestions. Thank you so much - especially the backup POA language. They are both pretty recalcitrant but maybe that would work. She knows she has issues because when I watch the coping mechanisms at work it is obvious. We did find lots of expired food when we were there last and a mountain of stuff of which probably 20% was bills.. The rest was junk mail for the most part. Will talk with my sister about the letter to her PCP. She is in an HMO so that would be where we had to start anyway.

sillycat · June 12

https://alzconnected.org/discussion/comment/274678#Comment_274678

Thank you for this. I didn't realize that our pointing out issues would be seen as gaslighting. She does on some level know that she has issues because she has developed some pretty advanced coping mechanisms. When the cat asks for food she has the cans set out in the morning and she'll start to feed the cat, then get lost, then ask the cat why it's still asking for food and when the can is empty she'll wash it and set it on the counter then at the end of the day she counts them and throws them out. One time I watched this and it took 6 iterations of the stopping and starting to feed the cat..

Will read the article.

sillycat · June 12

My sister mentioned that she shouldn't take the Benadryl too long but it sounded like there were lots of pills in the script.. which is concerning..

New here and probably should have been here a while ago.

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