Should I tell my mom on the phone that she's in denial of her dementia symptoms?

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Mom is 83 now and her dementia symptoms are escalating. In some ways, she is doing pretty well, but her quality of life is deteriorating rapidly and she won't accept any in home help.

Mom lives 8 hours away. She won't come to "visit" because she's afraid I'll make her live with me against her will. (not happening!) I'm the oldest sibling and her POA. I help her with financial matters, etc, because she feels overwhelmed and confused.

I call Mom every day, sometimes several times a day. Some days she calls me because she is confused or needs help making a decision. Sometimes, she doesn;t tell me what's bothering her because she's afraid we'll take away her independence. My sister also calls her several times a week and Mom will often tell her things she has avoided saying to me.

Mom daily tells me and my sister about her hallucinated visitors. She gets very depressed because they don't talk to her, ignore her, sit at the table and don't eat. Then, they "disappear". She doesn't know where they go - so she goes outside looking for them. She imagines her deceased parents sitting in the living room - with our deceased father. She prepares meals for all of these imagined visitors! So that, daily, she feels frustrated, sad, angry, depressed and a whole array of other emotions. I call to find her excited at 4 pm and not wanting to talk because she has visitors or in tears at 8 pm, waiting for "them" to come home to eat the meal she's been keeping warm for hours.

She told me last night that she thinks it's depression. I agree, she is in a depression. So far, I haven't been able to convince her to go back to her doctor (he's already done the Mini Cog test and she doesn't want to hear the results). The doctor told me the results in a phone call to my home.

I'm growing more and more concerned about her and I'm afraid to tell her she has dementia over the phone. It just seems wrong but, due to the distance and my own disability, I can't easily get to her home.

If I do tell her it would be in an effort to convince her to go back to the doctor and, very importantly, accept some in home help.

My fear is the emotional impact the discussion will have on her - and I won't be there to support her, hold her and help her. I believe she suspects what we already know.

How should I handle this situation?

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I’m so sorry. With your disability, this is even worse than for most people. But, personally, I think your mom is in danger of wandering off. It’s possible social services could do a welfare check and then they could help you get her to accept help. However, they may not have concrete evidence just based on a visit.
Your mom sounds pretty far into her dementia. She will need help whether she wants it or not. You obviously can't go and live with her. She won't take help in her home, and 24/7 in-home care is very expensive. But it's that or assisted living, if she is to remain safe. At least that's my take. I wouldn't do this on the phone. You said it’s hard for you to get there, but you may have to do it once. Your sister and you should come up with some sort of plan together. If she has a spiritual leader or good friend she trusts, involve that person in the “intervention.” If you can, you may want to take your mom to tour facilities. If not, you may just have to swoop in and move her. I'm not generally in favor of forcing these issues, but when you say she goes out looking for people, that's really a red flag. This isn’t going to be easy, but it will be horrible if you find she’s wandered out at night and gotten lost – or is found dead. This happens, I’m sorry to say. Please try to get your sister and whoever else can help onboard and do what you can.
Take care,
Carol


I personally would not tell your mom over the phone. I know for myself how hard it was discussing this with my mother face-to-face. I even did a watered down verison. My mom knew she was having problems especially memory loss. Just me saying the word dementia she lost it. She felt she was going "crazy". So I tried to explain it wasn't her fault her brain went hay-wire. I kept it as simple as I could. But she never fully accepted it or understood at that time. She thought she had a "nervous breakdown" So thats where I left it and didn't persuade her otherwize. As condition got worse and she was aware. She would say it was in her "genes". Her father also suffered from Dementia and deceased many years ago. So that was her way I guess of getting some closure or a grasp on situation.

You really need to get some help with your mom. I know she will protest like my mother but she will learn to accept it. Just ease it slowly on her. As she progress' with the Dementia she will eventually forget how independent she was. She will accept the help. You stated about her halluciations, that bothers me that she is still alone.Is she taking any meds to help? Depression and dementia go hand in hand. And both needs treated.

I know you said you have limitations and live away from her. That in itself puts you in a situation. I know you want to be there for her. You said you have a sister, does she live closer to your mom? When your both ready to discuss these things with your mom having a family member or close friend present will help comfort your mom. As she tries to process this if you choose to do it over the phone. Remember to reassure her that her children will be there for her no matter what.
It is unlikely to be effective, even in person but even worse on the phone. I don't know how it is for you, but as much as I'd like to treat my mother like an adult, it is not feasible. She has the logistic skills of an 8 year old so logistically, I manage things for her as if she were. I don't talk to her about dementia because it only upsets her and doesn't solve anything.

I added the doctor recommended anti-depressants to her drug cocktail and it has worked wonders, seriously, she is like a different much nicer person.

A friend recently told her elderly mother that she had a friend whose income had been reduced and desperately needed a job helping a senior in order to feed her family. Her elderly parent was willing to have the "friend" visit for a couple of hours daily since they desperately needed the job. My friend did a brilliant job of spinning it so her mom did not object.

Best wishes getting through this.
I agree with what you've said here, Carol and Yellowfeever. I really don't want to tell her on the phone. I'm pulling at straws here.

I've spent so much time talking with her doctor, her friend, my siblings and no one is willing to just take the bull by the horns. (Mom's nickname as a kid was Muley Murray. Does that tell you what we're up against?)

She refuses any meds (other than her heart and thyroid meds). Frankly, I'd be a bit anxious about her starting on any new medication when she's alone. A year ago she was hospitalized due to AFib. They gave her Ambien to help her sleep because she didn't want to stay in the hospital. She had a horrible reaction to it. She became violent and totally lost contact with reality.

I can't drive for the moment. Hopefully that will change in a few months. In the meantime, my sister (on welfare) lives in CA, even farther away. If I pay - she will visit. But she is very faithful about calling Mom and I rely on her to help me in that way.

Besides, Sis would not stay very long. I think the money would be better spent on in home care. (I know, I know. It's not happening yet.)

My brother who lives closet to Mom recently had brain tumors removed and is on disability himself. It will be quite some time before he can be of any help with Mom. Other brother tries to get involved periodically but is more talk than action.

So, you see the situation is somewhat difficult. I'm afraid for Mom's safety and well being. Her quality of life might be so much better if she would accept some help willingly.

I visited Mom, traveling by public transportation, a month ago. I took me 10 hours (including lay overs). I took her to the preplanned doctor's appointment. He did the Mini Cognitive Test but "didn't have time" to review it that day and "forgot" to call me while I was still at Mom's. A week later he called me at my home.

I did have an in home care intake appointment with Mom a few months ago. Mom was rude, arrogant and physically agitated for hours after the meeting. "Other" brother was present and kept saying "only if you want this, Mom". So....She Doesn't Want It!

I presented the service as a "casual" help, someone who could help her with whatever she wanted to do. She says "I'm not crazy and I'm not sick. I'm not ready for hospice!"

I don't want to throw her into a deeper depression and certainly don't want to tell her the doctor's findings when she is alone. To be honest, I want her to go back to the doctor and let him tell her! I urged them to call her to set an appointment. They did and she refused to go.

I agree that having this discussion over the phone doesn't feel right.

Long Distance is a very difficult way to deal with Mom's situation. I think I'm just floundering around, searching for answers and getting nowhere fast.

Thanks for your thoughts and ideas!

Thanks for your thoughs, Annet. I'm going to try to find some connections with people near Mom who might just "stop by" at least for now, until I can come up with a better solution.

I know what you mean about logic. Mom tells me she "feels like a stupid morron" (today's issues) and, I agree, it's like talking to an 8 year old. I offer her solutions and she can't see how any of what I say will help.

"How can it make sense to call a handyman when I don't know what is wrong with the door?" HUH??? No wonder my hair went gray this year! lol

Carol, I've thought about Social Services. I think she might fool them in a "visit", so that might be a waste of time right now. But you've given me food for thought.

Got to run for now. I need to call Mom back. Thanks again!

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