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

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

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

@Chug

This is a pretty simple explanation:

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.

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.

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.

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 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 💕