Dementia - want to read your stories and guidance

[jrhampt]

Mom had gotten lost a couple of times in our town on very familiar routes.  That was probably the biggest red flag leading to us pursuing a diagnosis. I did the co-piloting thing with Mom for a year or so until I read in literature from the Alzheimer's Association that it was not a good strategy.  That was when we discussed the too soon/too late options and went with too soon. 

I recall one time she was stopping on the highway to let someone pull out of a parking lot, and I'm saying, "No Mom, don't stop on the highway; that isn't safe!"  So someone with impaired judgment can make a poor decision with safety implications, and by the time the co-pilot gets the pilot to correct the course, it could be too late.

Yep, this is what we've been trying to get across to my Mom about letting my Dad drive while she navigates.  It's still not safe, not just for them, but for other people.

[wenchsenior]

@dizzy  this sounds awful.

This is similar to the situation that was happening with my dad in early stages of alcohol-induced dementia. Increasingly threatening to himself, his wife (who eventually left), and various neighbors and family members that he was having delusions about.

 It's scary and terrible. The only thing that stopped it was intervention with the courts to remove his autonomy and commit him to a mental health treatment facility and that was not easy and came with a huge bunch of additional issues.

I'm so sorry, dizzy.

[Luke Warm]

Found out yesterday that my sister has been helping herself to my mom's bank account. So now that fucks up the Medicaid process since my mom should have more money than she's showing. All the planning with the Personal Service Contract and regifting money is out the window.

On the plus side the UTI my mom had seems to be better, enough that she can go back to daycare. The UTI really set her back.

[Sibley]

Found out yesterday that my sister has been helping herself to my mom's bank account. So now that fucks up the Medicaid process since my mom should have more money than she's showing. All the planning with the Personal Service Contract and regifting money is out the window.

On the plus side the UTI my mom had seems to be better, enough that she can go back to daycare. The UTI really set her back.

Fraud and financial abuse are common in elder care. And frequently committed by family or caregivers. Given the Medicare involvement, you may be forced to pursue criminal charges against your sister. You really need to talk to that lawyer.

And your sister needs to lose 100% access to the money, immediately and permanently. All of which is much easier said than done, so I wish you luck.

Glad that your mom is feeling better at least.

[wenchsenior]

Found out yesterday that my sister has been helping herself to my mom's bank account. So now that fucks up the Medicaid process since my mom should have more money than she's showing. All the planning with the Personal Service Contract and regifting money is out the window.

On the plus side the UTI my mom had seems to be better, enough that she can go back to daycare. The UTI really set her back.

Fraud and financial abuse are common in elder care. And frequently committed by family or caregivers. Given the Medicare involvement, you may be forced to pursue criminal charges against your sister. You really need to talk to that lawyer.

And your sister needs to lose 100% access to the money, immediately and permanently. All of which is much easier said than done, so I wish you luck.

Glad that your mom is feeling better at least.

Agree on all of this. Unfortunately, whomever is in charge of elder finances needs to be incredibly trustworthy or stuff like this is common.

Likely what will happen (barring court intervention) is that Medicaid qualification will be delayed by however long it takes to pay the nursing home an amount equivalent to whatever your sister spent on 'herself'. So if it's a few thousand, you would need to pay the nursing home an extra few thousand before Medicaid will cover your mother's bills, etc.

[sui generis]

Well, my stepfather passed away last weekend. 

Last time I was here, I was in a bit of a panic a week after we had moved him into MC.  We had hoped/thought the week was going....ok....and then a fall and a lot of worrisome signs.  Well that was the beginning of several weeks of just pure chaos where I'm pretty sure everything that could go wrong when you make a move like this did in fact go wrong. 

In every category, like finding out the MC was not caring for him properly.  Finding out we didn't know things that would have been good to know.  And most of all having terrible luck.  Ultimately, we do not blame the MC for his death, as most of their (still upsetting!) mishaps were on the order of like us discovering that no one had encouraged him to bathe or brush his teeth even one time in 10 straight days (and this was for sure part of the care level we paid for). 

Anyway, I could go on and on, but still not feeling like typing anything else out, I guess.  I'll just say it was amazing and shockingly accelerated, like there were times I was sitting there with him where I felt like I saw him lose abilities from the time I had arrived that day to the time I left.

That can be a relief.  I think right now where I am is feeling a little bad admitting the relief, but also wanting it to be more acceptable in our society to say that and to look at this through a lens people who have not (yet) dealt with dementia might be appalled to hear.

My mom's surprisingly ok, *mostly* not blaming herself for "killing him" by deciding on the move.  Like way better than I worried she would be.  So yay her.  She had already mourned the loss of her husband a lot. She talked a lot about "the long goodbye". But I know there's a lot more mourning to do for her.

[Sibley]

It's not wrong to be relieved that someone isn't suffering any longer. Do not beat yourself up over that. Yes, the move may have kicked it off. Or it may not have. You did the best you could in the moment. That's all anyone can ask for.

[okits]

Sorry for the whole difficult experience of (especially) the last few weeks, @sui generis .  I hope now that he's at peace you can all grieve and recover.

[BicycleB]

It's not wrong to be relieved that someone isn't suffering any longer. Do not beat yourself up over that. Yes, the move may have kicked it off. Or it may not have. You did the best you could in the moment. That's all anyone can ask for.

+1

@sui generis, my condolences, both to you and mom

[Fresh Bread]

@sui generis I'm sorry for your loss and I think it's ok to feel relieved.

[Frugal Lizard]

@sui generis so sorry for your loss.

I am living with similar feelings about my mom's passing. It is sad but also relief.

[secondcor521]

My condolences as well to you, @sui generis.

I think the relief is real not only for the person who passed but all of us remaining behind because that part of the work is done and there are impacts on *us* as a consequence of their death.  Of course we'll miss the person, but we also don't have to stress about decision making or providing care or worrying about them.  To the extent that the impact on us is positive, it's hard to say that out loud because it could be viewed as selfish or insensitive.  But it's a very legitimate response in my view.

[monarda]

Condolences, sui generis.
My dad moves to MC next week. We'll see how that goes.
Was in assisted living almost exactly a month. So, many transitions. We'll see how he weathers them.

[kina]

That can be a relief.  I think right now where I am is feeling a little bad admitting the relief, but also wanting it to be more acceptable in our society to say that and to look at this through a lens people who have not (yet) dealt with dementia might be appalled to hear.

I've been there. Felt the relief. Felt the guilt from feeling the relief.

What I hope for is that our loved ones somehow felt the love.

[Catbert]

It's not wrong to be relieved that someone isn't suffering any longer. Do not beat yourself up over that. Yes, the move may have kicked it off. Or it may not have. You did the best you could in the moment. That's all anyone can ask for.

The mantra in my family is, "there are a lot worse things than dying."*  Your father, and by extension you and your mother, were living the "lot worse thing."  {{{hugs}}}

*I'm related to several nurses.

[Just Joe]

Huge hugs @sui generis. I'm glad that this chapter is over for you and your family but very sorry you lost your loved one. 

[wenchsenior]

Well, my stepfather passed away last weekend. 

Last time I was here, I was in a bit of a panic a week after we had moved him into MC.  We had hoped/thought the week was going....ok....and then a fall and a lot of worrisome signs.  Well that was the beginning of several weeks of just pure chaos where I'm pretty sure everything that could go wrong when you make a move like this did in fact go wrong. 

In every category, like finding out the MC was not caring for him properly.  Finding out we didn't know things that would have been good to know.  And most of all having terrible luck.  Ultimately, we do not blame the MC for his death, as most of their (still upsetting!) mishaps were on the order of like us discovering that no one had encouraged him to bathe or brush his teeth even one time in 10 straight days (and this was for sure part of the care level we paid for). 

Anyway, I could go on and on, but still not feeling like typing anything else out, I guess.  I'll just say it was amazing and shockingly accelerated, like there were times I was sitting there with him where I felt like I saw him lose abilities from the time I had arrived that day to the time I left.

That can be a relief.  I think right now where I am is feeling a little bad admitting the relief, but also wanting it to be more acceptable in our society to say that and to look at this through a lens people who have not (yet) dealt with dementia might be appalled to hear.

My mom's surprisingly ok, *mostly* not blaming herself for "killing him" by deciding on the move.  Like way better than I worried she would be.  So yay her.  She had already mourned the loss of her husband a lot. She talked a lot about "the long goodbye". But I know there's a lot more mourning to do for her.

Absolutely normal to feel relief, and it's common even in good care facilities for death to come quickly once people are moved to one. And most people eventually have to be.

I'm sorry for your loss. That same thing is approaching soon for me, too, so you have all my sympathy.