Vascular dementia, alcohol abuse, presenting well around others and friends who tell her she's fine.

Mama_Bear_SF

I am taking care of my 74 yr old aunt who has vascular dementia (middle stages) and suffers from alcohol abuse. I moved her 1yr ago from STL to SFO and got her an apt where my 77yr old father stays with her for company. She had been having falls regularly in STL and when I moved her she had just had 12 staples remove from her head after falling while run. It was clear something was wrong and trying to sort it from 2000 miles away wasn't working. So I got her out here and into the neurologist, had MRIs done the whole 9 yards. She was diagnosed with vascular dementia but none of her so called friends back home believe me because she presents so well.

She can carry on a conversation and while half of it is made up or inaccurate they don't know it. She'll talk to them on the phone about what she did for the day and it will be incorrect but since she not stumbling to complete a sentence they believe her.

So they have been telling her I'm just trying to control her and take her money. I've tried to explain the diagnosis but half of them wouldn't even join the zoom meeting I setup to discuss. I showed them records and test results yet still they continue to tell her she's been misdiagnosed. Now she repeats their talking points and believes she is fine.

We recently had to call emergency services yesterday because she grabbed me and blocked me from exiting the apt as I tried to leave with a bottle of wine she wasn't supposed to have. She also talked about killing herself so I felt I had to call them. She's only supposed to have a single glass of wine at night, not a bottle a night and them mention of suicide worried me. Of course she was extremely upset at me for calling emergency services. Now that we are having to cut her down to single serving cans she is freaking out on my dad and me everyday and I know it won't stop. She kept walking to the liquior store and buying bottles yesterday so I eventually turned off her debit card which is certain to upset her too.

Afterwards she called those same friends and told them to get her a lawyer and figure out a way to whisk her back to STL. They have threatened in the past to kidnap her and take her back to STL. I'm her durable POA and Health POA along with the trustee on her trust when she was deemed incapacitated. My aunt set all those up back in 2021 before this happened but she and her friends tell everyone I stole it. I didn't even know I was POA until my uncle (here brother in-law) told me about the paperwork after the big fall.

I'm so exhausted and am at my whits end trying to figure out how to keep her calm and safe. I don't want to send her to a MCF but I don't know what else to do if she continues to threatened running away all because we will only give her a single glass of wine and because her friends keep encouraging her to find a way to leave.

I should mention when I was getting ready to sell my aunts house these same friends went into her home and stole a valuable clock. They didn't know I'd put up camera for security before we moved her. When I told them to return it that's when they all started saying I was trying to control her and the doctors where wrong. So they clearly don't care about her well being they just want her around to pay for stuff.

Any advice would be welcomed.

housefinch

@harshedbuzz

harshedbuzz

Thanks @housefinch.

Mamabear— I'll get back to you tomorrow morning as I have a house full of people at the moment.
HB

Mama_Bear_SF

Thanks I appreciate any advice 🙏

harshedbuzz

@Mama_Bear_SF

Yikes! What an unholy mess. I am so sorry you are dealing with all of this, but must commend you for what you've done so far in terms of getting her near you and an having gotten the diagnosis done. I think you are absolutely spot-on regarding the risks her further interaction with her enablers present. Some random thoughts follow:

Since you are the POA, you not only have the right to keep her safe, but you also have a legal obligation to do so and that includes keeping her assets protected for her care down the road. When taking the steps you'll need to take, remember this is something you are doing for her not to her.

When she was evaluated for dementia, was there any discussion of her drinking? People who abuse alcohol are more prone to dementia for a number of reasons. Poor medical compliance around things like BP and statin use can be a factor in vascular, also there's increased risk of trauma to the head from accidents when drunk plus alcohol is a neurotoxin. In certain people alcohol can interfere with uptake of Thiamine and lead to a deficiency and a dementia referred to as Wernicke-Korsakoff's. A history of wine by the bottle in a woman could cause this in some individuals. When you mentioned the conflated stories my spidey-sense was alerted— this was one of dad's most prominent symptoms early on. Other things your might see include vision issues, odd eye movements, complaining of cold and a rocking gait.

https://academic.oup.com/alcalc/article/44/2/148/185585

My dad had both Alzheimer's and WKS. My mom blew me off when I wanted to have him evaluated; her denial cost him the chance to have effective treatment of the WKS which would have improved quality of life for a time. Testing is basically looking at symptoms and a blood test— nothing particularly onerous. Dad did eventually get the IV treatment and did regain a bit of cognition and function but not so much that he could live independently. (There seems to be a heritable risk to this condition— my nephew had it and I strongly suspect my sister did in the final months of her life as well) We tried mightily to limit dad's access to alcohol, but it risked full-on violence. The only way we could have made it happen would have been placement in a secure MCF earlier in the disease which my parents could not afford. This may be your best option.

Even if you feel she's not ready for MC, I would tour and get a sense of

A big part of the reason finances were driving the decision around placement was that dad day-traded away $360K in the early middle stages of the disease while he could still use his computer. I think you are wise to keep an eye on the money and be proactive around her entourage of hangers-on. I would encourage you to lock down her credit at the 3 major bureaus to prevent her co-signing loans or taking one out herself.

When dad was finally diagnosed, I moved my parents back to where they raised me. This did not sit well with their friends in FL. Evidently dad was quite expansive with a daily happy hour and they were sad to lose that. I got a lot of interference on both their phone lines initially as they worked mom over hard. I eventually blocked the worst actor's numbers in his phone right away. A few started hounding mom. I warned one or two and then blocked them as well with the exception of 2 who weren't as toxic as the others. I didn't have as much grief from their friends in MD and didn't block them. Out-of-sight was out-of-mind and over time the unblocked callers faded away. This is an almost universal dementia experience, btw, even good friends struggle to maintain a relationship with PWD.

If you have any specific questions, ask away.

HB

H1235

https://alzconnected.org/discussion/comment/206725#Comment_206725

 I would encourage you to lock down her credit at the 3 major bureaus to prevent her co-signing loans or taking one out herself. 

Could you explain how this is done please. What is needed to make this happen.

harshedbuzz

@Chug

This is a pretty simple explanation:

https://www.creditkarma.com/id-theft/i/how-to-freeze-credit

Mama_Bear_SF

Original reply 4/22

@harshedbuzz thank you so much for the advice. I've felt so alone in this struggle but when I started reading the forums I realized I wasn't alone.

I've read up on WKS and thought it shared some similarities to what I've noticed with her symptoms. I have to have a call with the doctor tomorrow so I'm adding it to this lost of things to ask her.

Fortunately I worked adjacent to finance and legal so I made sure to close down all old accounts, opened new ones and up until this weekend she had just a single debit card that I monitor.

Tonight was another bad one. I asked her "friends" to support/encourage her about the new drinking protocols and instead they called her and told her I was messaging them about her drink and making her sound crazy. So of course she blew up.

Update 4/27

She attacked my father on Monday to get her wine. so we had another round with emergency services. I finally decided MCF is the only option. I can't continue to handle her outburst and this last one could have really hurt my 77yr old dad. As I was touring facilitate I suddenly had horrible chest pain. I ended up in the hospital for spontaneous pneumomediastinum for 3 days. I think this just confirmed what I already knew I can't keep doing this. I'm 38 and don't want to die by 39.

We found a place but I'm still racked with worry that given her high function it won't be a good fit. It's really hard to find a MCF that has the right balance. For now I found a place that really focuses on helping stabilize dementia vs a place that looks like the Ritz but will just leave her in her room. I know she's gonna hate it though and I feel horrible about having to do this but I don't see any other way.

Any recommendations on learning to cope with the guilt of placing a LO in a MCF?

M1

The best answer to guilt is you have to remember you're doing it for her, not to her. Someone else said today that we would all like to see our loved ones safe, cared for, and happy, but sometimes we have to settle for safe and cared for. You're doing the right thing.

scary about the pneumomediastinum! I'm sure it was very painful, hopefully it's a one off and won't recur. Glad you're okay.

harshedbuzz

What M1 said.

You are doing this for her, not to her. It is appropriate to feel sad, sure, but not guilty.

Safety first. Hers. Your dad's. Yours. One third of caregivers predecease their LOs— please don't be a statistic.

If anyone or thing is doing this to her it's the combination of dementia and alcohol. One could even say her "friends" are complicit in triggering placement earlier than it might have needed to be if they weren't selfish hangers on.

I hope the MCF transition is a smooth one. It's wise to not be distracted by decor especially since those are the sort of corporate entities that cherry-pick residents to favor the pleasantly befuddled. She's going to need well trained staff versed in behavior management. I doubt they can stabilize dementia but dementia informed programing and care are valuable.

HB

Quilting brings calm

Here’s other reasons why MC is the best place for her:

It protects her from those so-called friends. The ones from STL won’t visit there and if they do, they won’t stay. Same with any ‘friends’ made locally. The MC staff can walk by during phone calls and find a reason for her to end the call. Lunch, activity, etc.

She’s protected from alcohol abuse in the MC too.

The health of you and your dad is just as important as hers. Physical, emotional and mental. You’ve already seen what stress can do - minimizing the stress for you and your dad is the responsible adult thing to do. You can’t fix her, you can’t cure her, you can only keep her safe- and that’s best done in an MC.

Mama_Bear_SF

Thank you for the caring reminders.

I'm sitting here with tears in my eyes because for the first time on this journey I feel less alone. I didn't realize how much I needed to hear from others that are traveling this path. All of your word have given me a bit more strength and love for myself.

Through out this whole thing I've felt like a failure like if I could just do "this" or "that" then everything would be better. All the legal, finacial or even medical treatment type stuff came easy because of my previous work. I mean not easy but I knew what to do. Yet all the other side of caregiving has felt like I'm in the middle of an ocean floating aimlessly. Knowing how often the companions should come. How to help her adjust to SF. How to keep her calm. How to make the day balanced with not to much stimulus or to little. Coaching family on how to communicate with her and redirect. The list goes on and on and all the while I've felt guilty because I keep thinking I should be doing more.

But being here in this space hearing all of you has helped me realize there is no "if I just did this" that will some how make things magical perfect. So I will keep your words with me as a reminder and hopefully Monday will go as well as it can.

● You're doing it for her, not to her.

● One third of caregivers predecease their LOs— please don't be a statistic.

● Sometimes we have to settle for safe and cared for

● The health of you and your dad is just as important as hers. Physical, emotional and menta

● You can’t fix her, you can’t cure her, you can only keep her safe- and that’s best done in an MC.

Thank you! I'll let you all know how Monday goes.

mommyandme (m&m)

I’m so glad you have found support here. It is amazingly helpful to know we’re not alone and there are souls that truly care and understand, unlike many of the medical experts we depend on. The practical help and wisdom I received from this forum made my caregiving gig much less isolating and painful. I’m very sorry you are in the midst of this dementia chaos yet so happy you’re here and sharing.

housefinch

Lastly, and please forgive this comment if it’s overstepping a boundary. I would be sure you have a good PCP for yourself. Spontaneous pneumomediastinum is pretty rare (eg without a clear cause like coughing, vomiting, etc). If there was absolutely no cause, I would be sure your doctor has zero concerns for a hypermobility/connective tissue disorder (I’m in medicine and had a patient who ended up needing an extensive evaluation for underlying possible genetic causes etc). You may have no physical findings or other issues that warrant that concern. I just don’t want your health to get lost in the shuffle. Wishing you the best with your stressful situation.

Emily 123

Mama Bear, it might be helpful to limit who can contact her during her transition to MC. Lots of families disappear the cell phones or land lines once the move is made. MC can definitely help manage a 'no contact' list, if the friends did find out where she was moved to. It doesn't sound like her St. Louis friends are interested in working with you to make the move easy, and so should probably be left out of the loop about any move. Now is absolutely the time for you to cut your contact with them. A constant flow of negativity from them will set you and the MC staff up for a lot of challenging behaviors.

The goal is getting her moved quickly and quietly. Her ability to reason has been affected by the disease, and her underlying dependency will make this more challenging. She no longer has the capacity to weigh pros and cons effectively, and so you'll have to continue to take that over for her, even if you would love to have her agree to the move—that's not going to happen, so you might as well not try. For many, the move to MC involves getting the person to the facility in whatever low stress way they can, without their PWD's involvement in any of the move. If she were to need emergency services again, especially to get her stabilized, then a disharge to a MC might be the easiest way to go.

Mama_Bear_SF

https://alzconnected.org/discussion/comment/207456#Comment_207456

Thank you @housefinch your spot on about the EDS. I was finally diagnosed with it in 2019 (after years of health issues). I have a whole medical team that helps me but I've definitely neglected my regular treatments (nerve ablation, epidural, pain management, PT, etc). I recently tore hip (labral tear) again and will probably have to get a second surgery to fix/stabilize it. I have spinal fractures and all sorts of joint and digestive issues (IPMN on my pancreas, kidney cyst too) .

At 37 my body was already feeling like it was breaking down but now after a year of this my body feels like the walking dead most days.

It just hard for me not to always keep pushing and trying to be superwoman. I'm sure alot of people here can relate to that. Feeling like you have to do more even as your falling apart.

I'm just grateful I've came to understand I can't keep this up when I did. This hospital visit was a real wakeup call and seeing all of your posts has helped me gather the courage to say "no more".

I still feel bad that it's come to this but I can also recognize I can't kill myself slowly by trying to juggling all of this. I have a 15yr kiddo and my husband too and the thought of not being there for them is unthinkable.

Thank you so much for your concern it's another good reminder of why this is the best decision for my aunt and myself. Especially since if anything happens to me the alternate DPOA is one of the STL "friends" and they'd just ldrain my aunts bank account while taking zero care of her.

housefinch

@Mama_Bear_SF definitely put your needs as a big priority. You’re carrying an incredible load even without your aunt, & your husband and child want you in their lives 💕