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?

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

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!!!

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...

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.

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.

I recommend keeping an ongoing "log" of all of her behaviors that support dementia. Schedule an appointment with the primary care MD with your mother in the same room and ask the MD to tell her to her face that she has dementia.

In the short-term, consider helping her arrange to have her bills automatically deducted out of her bank accounts so they get paid.

Secondly, consider hiring a home health aide to come in a couple of hours daily to help her with meds.

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

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.

"She is very overwhelmed with paperwork/mail."
When you are there, take all the mail and have billing address changed to your address. Billers do not care where the bill goes, so long as they are paid! If you are not there, you can temporarily forward the mail to you, and then change all addresses. I had to do this, as I couldn't count on her keeping everything together until I could pick it up and make the changes. Except for her CC, not one place asked for POA.

"She's also getting confused with medications."
We had to set up a timed/locked dispenser (recommended by the nurse who tested her.) Mom takes BP meds, but would either forget to take them, or take too many, so we had to go with this kind of dispenser. Even with that she would sometimes not hear the alarm or see the pills. The aides we had briefly (before she refused to let them in) would check and remind her to take them - they can't dispense, they can only check/remind.

"At 89 she does not take any daily meds, basically antibiotics for UTI's. She has a major incontinence problem and asked to be referred to a urologist to see if she could have surgery."
It's great that she takes no regular meds, but the full course of antibiotics need to be taken for them to be effective. Even worse is if she doesn't finish them - they will eventually not work and some other antibiotic will need to be used.
Our mother was Dxed as having interstitial cystitis and was told to restrict certain foods, use a catheter to completely empty her bladder, etc. It seems to me that she had MORE UTIs during that time. When dementia became an issue, those instructions went out the window!

It is possible to be allergic to or have reactions to medications. My mother and my daughter can't take any 'mycins'. It is also possible that some/all of her incontinence could be related to the UTIs. Mom's first UTI after moving to MC resulted in severe sun-downing - she was fit to be tied every afternoon/evening, but fine in the morning! Subsequent UTIs have manifested as night time bed wetting. More than likely she doesn't need surgery, but it can't hurt to have a urologist examine her and do a urine culture.

"I worry about her being alone!!!" You should. Dementia is never going to get better. How quickly it progresses varies from one person to the next, but you never know when the next level will happen! You should be making plans to ensure she is in a safe place and cared for. While it may be okay to have her move in temporarily, having her live with you will become more difficult and can impact your health and well-being as it progresses.

"She's been a widow since 1982 and is extremely independent. She does trust me but doesn't realize that she is having memory issues. Who should talk to her about it and would she understand?"
We didn't lose dad until 2008, but before and after, she was living with him, then on her own and managed okay. Dementia changed that. In her mind she was still capable and independent, but in reality she wasn't. I knew nothing about dementia before, but knew something was wrong and started exploring. I knew we had to make changes and we tried to work "with" her, but that wasn't going to happen! You will have to leave guilt at the door and focus on your care and concern for her well-being. Be proactive and start making plans. Despite knowing she was having issues, the full picture wasn't apparent until after we moved her to MC. No one lived with her, so we couldn't observe ALL the issues! We did install cameras, which helped, but only could view certain areas/behaviors. We NEVER mentioned dementia to her.

"I am her health and financial POA." This is helpful, as you can take over finances and be involved in medical care, but these will NOT enable you to force her to move. You'll have to find a way to convince her a move is necessary, even if you call it temporary. The only other option is guardianship, but if you can manage without that, it'll be better.

I do agree with Afreil but if a person's dementia is more advanced as it was with my Mother and husband, then it is not a good idea. See what the doctor advised for her.

Dear Ginnysdaughter,

Seems to me that, since you are POA for Mom, you should have had this conversation a long time ago as to how she would want you to handle her situation should she not be able to do it herself. Water under the bridge.

In my situation, I also had to be the one to tell Mom that she has dementia. Since my Dad died from Alzheimer's, I did not want to tell Mom that that was what she had. I did tell her she had dementia and what that meant. She seemed able to handle that. Perhaps your Mom would do the same, especially if you kind of downplay it as a condition in which her mind plays tricks on her or won't let her remember. Worked for my Mom.

But, once you see that your Mom is no longer able to take care of herself, her meds or the condo, she needs to be in an assistive living center, or a "memory care" unit of a facility. That's the only way to insure her safety, health and care when you are in AZ. or even if you're not.

Traveling for a patient with dementia is just too overwhelming and disconcerting for them. Tho, once they get settled in a facility, that their new normal, tho it is never their home.

Don't know what Mom's finances are like, but the sooner you get her into a facility that can take the proper care of her, the better off she will be. And the better peace of mind that you will have.

Be honest with your Mom, tho she may not fully understand, that you cannot handle her condo and its responsibilities along with your own and the one in AZ.
It's going to be an arduous journey for a while, but it's doable and you and Mom will both be happier for it. Plus, with dementia, it never gets better. So do it sooner rather than later.

Dementia tends to get worse over time, so it's best to prepare for it now. Some people with dementia don't realize that they have it. It may be a waste of time discussing her dementia with her, and she may find it distressing. Have a discussion with her about your taking over the paperwork for the bills and financial affairs so that she won't have to be bothered by it any more. It would be best to have all of her mail go to you. Otherwise, you might miss something important. Don't even show the financial things to her. Just give her the personal letters. Hopefully she's in good financial shape and you can just tell her that she doesn't have to worry about finances. If you're not taking care of her full time, it would be best for her to be in an assisted living facility, where they can make sure she takes her medications correctly. Talk to her about this, and find out if she's willing to move where you'll be able to look in on her more often (AZ), take her to doctors, etc. If she still has a lot of friends in OH, she may want to stay near them. She may not enjoy the restrictions of an assisted living facility if she is used to being independent. It sounds like it's best for you to take her to doctor appointments, so that you are aware of what's going on. If she refuses to go to AL, you may want to speak with a social worker. Make sure that all of her paperwork is in order (will, medical directives, etc.). Some banks require that she sign a special form so that you can act on her behalf (in addition to the POA), and Social Security/Medicare also requires her permission. Is she still driving? That may become a problem. My mother, who also has dementia got to a point where she'd leave the house driving the car and wouldn't remember where she was supposed to go. She'd forget where she parked the car and would have difficulty finding her way home.

The UTIs, my mother was having repeated UTIs in a facility. She would start talking about dead relatives..became so confused. They thought decaf coffee caused it) however caffeine will aggravate UTIs). Finally, the doctor put her on some type of cranberry pill. Some residents received it in liquid form.
Magically, UTIs are no longer an issue. Tremendous change. Those UTIs aren't helping your mom’s ability to function.
The dementia? Will knowing help her?

UTIs can cause a lot of problems if they're not taken care of. You could say something like "I've noticed that you're having a (few - don't try to make it a big deal - yet) memory issues."

I’m sorry you are not feeling well and dealing with this stress. My father too was diagnosed with dementia. The dr told him this, but he is in denial and still continues to get upset if it’s mentioned. So I don’t bring it up. He too has been very independent all of his life so getting him to move in with us was no easy task. (He actually lives in our guest home Next door so I told him he would be able to save some $ if he sold his home. He has no idea it’s because of his memory issues that I wanted him close). But it’s definitely been stressful trying to convince him that he needs helps with something as he still thinks he can do anything with no problem and gets upset if I try to help. I have seizures and stress brings them on. So maybe it wasn’t the best move having him here but I did feel I wanted to help him and didn’t feel he was ready for a nursing home. I check on him everyday. I do feel he is happier having his own place instead of being in assisted living since he is so Independent. When his dementia progresses and he is no longer able to take care of basic everyday things we will have to hire a caregiver and eventually might not have any choice but to consider a home. Trying to get convince him to go into one will be another battle. My thoughts are with you. I recommend deep breathing exercises and Lots of prayers 😊

I am not sure that talking to her will accomplish anything. She does not believe it and will deny it and probably attack you. Just do what you can to tend to her needs and ignore her bad behavior. But if it starts impacting you negatively, then YOU have a choice to make - putting her into a facility. She will not and cannot understand. A doctor can try and it would take that burden off you but don't expect much luck.