Mom has been diagnosed with dementia by her doctor but he told me (her POA and only caregiver) and not her. Who should talk to her about it?

The doctor should have sat down in front of her and looked her straight in the eye and told her she has Dementia. They never believe the child.

She would not understand, and even if by some chance she did, she wouldn’t remember and would need to be told over and over, which seems pointless and cruel. And having her move back and forth across the country twice a year is also asking too much, she won’t be able to process so much change. Time to look for another plan, either having someone come in to help her or moving her to a setting where she can get help. I’m sorry you’re dealing with this, it will only get worse and will break your heart to watch

Hi Ginnysdaughter, you certainly have lots of company in this challenge with others on this forum. From my own experiences I believe you are at the juncture where some bigger decisions will need to be made by you. Your concern is very normal and many will post their experiences and good ideas here for you to consider.

First, there is actually a medical term for when a person is unaware of their own condition, so it is a thing (Anosognosia). My mom, 91 and single most of her adult life, is also very independent. Even though I've been having gentle conversations all along with her about decline (she has 2 older sisters, one with advanced dementia) she seems in total denial about her own memory issues, occasional confusion, etc. I'm an only child and she lives door to me (luckily). I no longer bother trying to get her to "admit" her issues. Instead, I act like I've found a convenient way to do something ("online banking! I don't have to think about it and it's safe! Here's what it looks like. I can help you do it too!"). As her financial PoA you will need to think about how to protect her sensitive info from others, and herself.

What she wants vs. what needs to happen to keep her safe, maintain a quality of life. My philosophy is that caregiving/oversight must be amenable to both the care receiver and their caregiver/PoA. There's no point in it being onerous for you since this will cause stress and eventually burnout. It's trickier when someone is very independent. But if there begins to be a need to "orbit" around her this only props up a pretense of independence, so what's the point? She (like most people) has "romanticized" aging at home. You can attempt to have a conversation about making it work for the both of you and try to get concessions, but the problem with the senior mind is that it often forgets what it had agreed to.

Long-distance caregiving won't be easy and you will most likely spend a lot of time fretting since you know things are falling apart at her end. You may have to consider having her join you in AZ (but in her own little place or an IL care community) and then create a "therapeutic fib" to keep her there longer, or permanently. Eg: problem with the home (no heat, bug infestation, etc.) If she can be engaged in activities and with people in AZ, being away from her OH home may be less of an issue. Or, you can do like I did with my very senior Aunties and go over her financials and show her on paper that it will just drain her sooner. You will need to keep up this conversation but in a non-nagging way or she will avoid talking to you about it altogether. Also, I strongly recommend you do not move her into your home in AZ unless you wish to evolve into her full-time (and then some) caregiver. This will not be good for your marriage, your health and maybe your finances. Others on this forum will support this perspective.

I think you have plenty to think about. Others will have helpful input. I wish you all the best in working it out with your mom, and peace in your heart no matter how it goes.

Agree with what others have said. Your situation is messier because you have a physical illness to be concerned about and proper medication taking and compliance, plus with UTI's they can cause dizziness and other wacky seeming behavior. I'd be trying to find out about some home health care/nurse stopping by to make sure she takes the med when needed as a condition of her staying at her own home which she wants.
But long term...you need to plan. Seems like you are planted in AZ and clearly much stress from her being in OH. So start scoping out places, so when the time is right you can move her. It will only get harder as the dementia progresses which may be a slow process.
I live with my elder parents and I can tell you the course of this up to diagnosis and beyond...well, it surprises me and shouldn't in retrospect. Some highlights: Mom was having trouble in the kitchen, didn't know what to make for her and dad's dinner; baked a cake mix in a loaf pan, burned something to the point of significant smoke one time, trouble doing bill paying, not remembering about finances...one particular memory is that Dad (the breadwinner) wanted to get a new car. They had the funds. She forgot about an account. Was very upset and found her crying. I think she sensed she was "not herself" and made statements like that once in a while like "I'm losing it ha ha ha". One year they went to visit the "good" daughter in FL. I anticipated this would be their last adventure and my last staycation of peace. Sister called within hours not knowing how in the world I could think mom could travel. The trip itself went fine...but the change in environments...and then the discovery that mom had inadequately packed...that led to a review of basic signs of Alzheimer's...a visit to the MD and he was surprised at how poorly she scored on the mini-mental. An attorney suggested for various reasons having her assessed. A packet with an assessment was sent out. I received it at our PO BOX. This was in May. The appt was not till Sept. One day I discovered a big envelope from the place in mom's space. Empty. Thought this indicated her own-self awareness and concern...Day of the long awaited appt learned they had in error sent a packet to me AND mom, and mom, on seeing it, called immediately and cancelled the appt.
We ultimately went...and mom was diagnosed with dementia/mixed type. She remains, I believe, totally clueless...and yet on the rare occasions she sees the MD and there is a postvisit print out, I am quick to take it because the diagnosis of dementia is on there. She's going on 98 and there really is no benefit to confronting her with this truth.
You might want to google "long distance caregiving" for some books or literature; contact your and/or her local office on aging or Area Agency on Aging which may have some literature or guidance on places to check out or in home help...which is no doubt cancelled during this COVID time. When you are next in and if she saves up the bills for you, pay by mail (to alleviate phone hassles and having to provide POA documentation) and check those little boxes about change of address and change it to her name c/o your name and address...and then take her checkbook and checks if you can. Or do the on-line access, or do both...
It takes time, will have some frustrating moments, but it will come together...

there are two fabulous books to help with these questions and more! Both books recommended to me by friends who had a parent with either Alzheimer’s or A type of dementia...

1)” The 36 Hour Day : A family Guide to Caring for People Who Have Alzheimer Disease other dementia’s and memory loss.” by Nancy Mace
excellent book !

* Can’t recommend these books enough look it up on Amazon for more info.

2) “Creating Moments of Joy Along the Alzheimer’s Journey, Guide for Families and Caregivers.” By Jolene Brackey

Thank you. I am 70 yrs old and have problems with my nerves. I am on anti depressants and anxiety meds. Problems with Mom is not helping! But I feel so guilty!!!

I think I've posted this before, but my mother's memory care has a great way to help seniors move to a memory care or NH -- tell them their house needs to be tented for termites (or whatever kind of crisis in Ohio makes you have to move out for a week).

Unfortunately, you're entering the time when you need to say things to create the least stress, and worry a bit less about the accuracy of what you say. I don't argue with my mom that her husband is imaginary, and she's happy. Your mom doesn't need to be made to understand she is having cognitive issues -- it is what it is.

Consider having your mom come out to AZ while her house is being "worked on," and have her stay "temporarily" at a memory care facility for a couple of weeks. By that time she'll likely feel like that's her home, and you can continue to stretch out the stay as long as needed. (Your house is also getting the guest room redone, so she can't come stay right now.)

I know this all sounds duplicitous, but your local Alzheimer Association can help as well as a memory care facility you choose. Once your mom is settled and cared for, you'll be so much more relaxed knowing she's safe.

Absolutely her doctor should be the one to explain her condition to her.
Your situation sounds similar to mine (except for the distance). In our case my mother was first told of her dementia by a neurologist who insisted she not drive any more, then by an occupational therapist when she went for a driving assessment. Once the professionals had given her the diagnosis, we were able to talk about it with her.
Her condition has continued to decline. We first started having home care a few times a week to help her. But she was mixing up her medicine, burning things on the stove, falling - and we finally had to make the decision to move her to a memory care facility.

I plan to address other questions and concerns, but wanted to start with the question about telling her about her condition. This is generally not a good idea and/or does not go well. Dementia lies to the person who has it. She will likely deny or get angry if you broach this subject. Short term memory is generally the first problem encountered, so even if you do tell her, she is not likely to remember, so it will be a never-ending cycle of telling her and her getting angry again. There is no point to even going down this path, as it will only lead to frustration and stress. Focus on making plans for her care instead!

Our mother, despite acknowledging that she would forget some things said that she was old and entitled to forget a few things. The problem was she would forget what she was forgetting! She also had included AL in her plans for the future, when she felt the need. That went out the window with dementia. In her mind she was "fine, independent and could cook." She wasn't and couldn't. Two of us lived more local, but still a long drive, so we had to make plans for her care. We did try bringing in help so she could stay in her condo longer, but that didn't last long (only 1 hr/day sanity/med check, to be increased as needed.) Plan B was move to MC (she refused to consider moving ANYWHERE, so we had to come up with a ruse/fib to facilitate the move - others suggested that here too.)

As I was reading all I could think was this is so much like we are going through with my mom. To answer your question...My mother's Psychiatric Nurse Practitioner told her with me in the room. This was done after they did a psych eval on her. My mom is 83 and she insists everyone looses their memory at 83. She is currently taking Aircept which we as a family all feel helps her but she doesn't think so. It's a challenge no doubt.