Family and Alzheimer’s

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My mother is newly diagnosed with advanced Alzheimer’s. She has good and bad days. But her brother whom lives 5 hours away is trying to help her. He doesn’t understand her condition as he’s not with her daily as I am. My mom tells him one thing ie- needing a new driveway. So he calls someone to come give an estimate. I tell my mom we have to get more than one estimate. She declined and says her brother will do it all. She gets very hostile regarding this and has made bad choices with her home before. Being scammed. Etc. I reached out to her brother and he became very hostile and said some mean things. I kept my cool. But back up…. I took her phone away because she’s being scammed and creating more messes that in turn, I have to clean up. I don’t want her brother to think I’m holding her hostage so to speak or isolate her but how do I approach her brother since the previous attempt was ugly. I would appreciate any advice. Also, my mom still is in denial of her diagnosis.

Ed1937

Welcome aboard, bir, Sorry you have reason for the forum, but it's a good one.

What about this -- "Uncle Steve, I'm sorry our last conversation did not turn out well. Please let me explain what is happening. Mom has anosognosia, which is the inability to understand that she has problems. It's not her fault. Most people with Alzheimer's are dealing with it. I love her, and I want what's best for her." Then go on to explain why you are concerned about things, including the very real chance of being scammed. Add any other necessary concerns, and ask him to consider them. Don't give him reason to think that you think you know it all. Make him think you are asking for him to understand, and work with you in her behalf. Best of luck to you, and let us know what happens.

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Thank you for the advice. This is so hard and crazy to do and deal with.

harshedbuzz

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I am so sorry you are dealing with this. I did to a point as well. I had an uncle playing armchair quarterback. He was local but the best he could do was a 45-minute drive-by after lunch, which was dad's best time of day, every 6 weeks or so and then opine like he knew better. He told me I was placing dad "too soon", complained that his rehab was "too dark", and demanded to know why dad didn't have a TV (he confused crime shows with reality) and insisted he was going to bring one "if I was too cheap to". I feel you. 

If your mom is at the point where she has become prey for scammers, she might not be safe at home alone. Are It might be time to either move her in with someone, bring in 24/7 caregivers or move her to a MCF. 

Do you have a firm diagnosis from her doctor from a patient portal that you can share with him? Bonus points if it includes the behaviors you're trying to protect her from or medical opinion that you need to step in to manage her affairs? 

Otherwise, I'd reach out one more time to explain the reality and if things go south, so be it. In dementia, if someone isn't on Team BIL they are completely expendable. 

HB

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My kids and I are actually moving into her home as we speak. So it’s kind of chaos all around. And one minute she says she’s fine. Doesn’t need my help and says to leave. The next minute, she’s crying and needs my help. It’s so hard to handle. She gets very angry when I mention the word scammed or making poor choices. So working on that. But by taking her phone away, it’s preventing that but I want her to be able to talk to her family even if they don’t truly get it and create more headaches on my end.  Thank you for the feedback.

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I guess my issue is her texting her brother one thing and either not remembering or it getting misinterpreted by either her or him. So I need to reach out to him on my phone, I’m just nervous.I’m building up the courage to reply to him. One thing at a time.

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Iris L.

blr3655 wrote:

. So it’s kind of chaos all around. And one minute she says she’s fine. Doesn’t need my help and says to leave. 

Your mom has anosognosia.  She truly believes she is fine!  This is a characteristic of having dementia.  It is not denial.   If you try to confront her with reality, she will resist and become upset, as you are seeing.  You must learn the work-arounds that the members describe.

Iris L.

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Wow that is so helpful and some good info. Thank you. I do have poa and a will in place. I’m not sure if it needs to be updated based on her alz diagnosis though? Thoughts?

I applied for Fmla from my job. I’m off this week but go back mon and tue next week. So I do get some time off of work and considering my options as things progress. But no, I can’t be here 24/7 at this point. But she is newly diagnosed, so I’m trying to understand and figure everything out. 

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Also, you say to do practical things with her, Etc. So when she still says she’s fine and wants things her way and gets very aggressive when otherwise  …. How do I diffuse that? I get that speaking calmly and trying to diffuse the situation and deflect but when it comes to her wanting things done to her home….. and thinks she’s fine. What do I do? This is all so new and it’s hard as hell.

Emily 123

This helped me, and maybe you can share with your uncle:  https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

Discussion of your mom's diagnosis is likely triggering an emotional reaction that the disease has left her unable to manage.  Try to stop discussing it and see if that helps--maybe you're visiting 'so she can spend time with the kids'? Or maybe your house is under repair?  Fiblets are going to feel like lies at first, and be uncomfortable, but she has holes in her memory, she can't really hang on to new information, and her ability to process information has been affected, so go along with her. To help her be calm you need to work in whatever reality she's creating to make sense of her day. Try to let her keep as much of her regular daily routine as you can-that will help too.  She'll have a way of doing things stepwise to help her navigate her day, and it will be hard for her (because of the disease) to be out of her routine and have to adjust on the fly.

Here's some videos I found helpful:

Teepa Snow has excellent You tube videos, so will start with hers, and have added some others.

Getting a diagnosis: https://www.youtube.com/watch?v=61dQDIuueyQ

https://www.youtube.com/watch?v=u5QMeQpkPhA

https://www.youtube.com/watch?v=0BlZF_4EKp4

https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

Moderate Alzheimer's changes:  https://www.youtube.com/watch?v=6cZTgG6kDjs

5 Alzheimer's losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Common issues:  https://www.youtube.com/watch?v=FjGEexyagRk

Stage 3 (excellent series on the stages)  https://www.youtube.com/watch?v=TIkTO4d8YyI

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

How to talk to someone with dementia: https://www.youtube.com/watch?v=ilickabmjww

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Thank you for all the info. Very much appreciated! Emily 123🤍

MP8

Bir, does your mother's doctor know how antagonistic she can get? In my case, I was at wit's end, but when I mentioned my mother's behaviors, the doctor put her on medication that has really helped to stabilize her moods. It took a few days to kick in, but the change was noticeable. That doesn't mean it's easy, but it has, at least, helped to quiet some of the paranoia and anger.

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Mp8-

no, haven’t been real thrilled by her neurologist. Everything I have read and watched and learned, how needed a support system. Not talking about issues in front of patient etc- this is not the dr. Met dr once after waiting 4 months for initial visit. Did the moca test where my mom scored 10/30 on it. She then read chart from her pcp and ordered a pet scan and blood test. I brought my son and myself to talk to dr and nothing. She didn’t even acknowledge us. Pet scan revels advanced Alzheimer’s. She notes this in her chart. No call. Nothing. Says to schedule a follow up visit. At follow up same thing- I finally get to talk and tell dr how she’s aggressive and doesn’t want help. She orders clonazepam and says to follow up in 6 months. I ask dr to explain to my mom what’s going on. So she does in medical terms. Maybe seeing a pediatric dr would be better. Lol. Anyways. Not the best experience so far. And then my mom is spitting her clonazepam into her water bottle. Ugh. What did they put your mom on? My mom is extremely agitated most days. Ocd to the extreme. Paranoid. And just bat shit crazy it seems. Help!

harshedbuzz

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The stereotypical neurologist isn't good for much beyond diagnostics IME. Your sounds even worse than that.

In your shoes I would attempt to get mom in to see a geriatric psychiatrist. Without dad's geripsych, one of us would have ended up in prison. Seriously.

Klonopin is a good medication for a situational anxiety; with dad we needed something to help him 24/7 with the sort of generalized anxiety that drives the nastiness. For us it was a cocktail of 3 psychoactive meds at relatively low doses to avoid side effects like sedation while taking the edge off his moods. When he fought taking meds, we ground them up into his ice cream or pudding with the blessing of the pharmacist.

LOL, there are "pediatricians" for the elderly-- they're called gerontologists. Dad had one for a PCP when we moved him to MC. I highly recommend if you can find one.

HB

MP8

https://alzconnected.org/discussion/comment/168135#Comment_168135

Bir, so sorry to hear that the support isn't there. I'm still pretty new to this and learning but one decision that I am really glad to have made was to wait 5 months to get into a geriatrician, in our case at the local teaching hospital. It has been overall a good experience. One of the best parts is that they have lots of resources to refer us to, including a social worker, who has been invaluable.

We have not yet had to go the geripsych route, although it may be coming. So far, my mom is on Zoloft, which has really helped. When we needed to increase the dose, the doctor wanted to try mirtazapine (one worry is that my mother is very underweight and one of the side effects is to boost appetite) but it did not work well at all, except for the appetite part. Basically, it made my mother hungry (good), sleepy (okay at night but not when she walked like she was drunk all day), and generally cognitively less able to make good decisions (dangerous). So we went ahead and increased the Zoloft and it has been, once again, miraculous.

It all depends on the patient's biochemistry, though, so what works for one person in one situation may not work for another and may not continue to work for that same patient.

No matter what, it sounds like you need to find doctors (PCP, geripsych) that are better communicators. Do you have MPOA? Has your mother agreed to let them talk to you? This was the first order of business when we got in, but without it, I think it becomes more difficult, even with a sympathetic doctor, to share information.

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but my mom says she’s fine but can’t put two words together lol. So how would I get her to another dr let alone take a different med. she’s spitting her clonazepam back into her water bottle. Weekly she tells me to get out of her house. Meanwhile I have two kids witnessing this. It’s awful. I seriously don’t know why I’m staying. I’m her only child. At the age of 42, this isn’t what I wanna be doing. But she’s my only mom. But again I’m not sure this is sustainable with her psychotic ness. It’s awful and I’m ready to hit the hills so to speak.

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And yes have mpoa. Poa. Will etc. but wants me out of her house. Just me. Not my kids. And on Easter out of all days she’s causing a scene. Tell me why I’m doing this?