Father with dementia and mom needs help

cjwelborn

We're not even 100% sure this is what we're dealing with, but it's very likely vascular dementia as he had stroke about 10 years ago. His memory had been on a slow decline for years, but it's definitely worse now. Unfortunately he had 2 bouts of cancer that he's in remission from, so that's further delayed a diagnosis. He's now incontinent day and night and can barely get to the bathroom when he needs to and has to wear adult diapers all the time. My parents just moved 2 hours away to PA and my mom is recovering from knee surgery. He relies on her for EVERYTHING and she's done it for so long but it's really taking a toll on her. She put her knee surgery off for a year and it got so bad she could barely walk. We asked her to have someone come in to help him while she's recovering, and she said it was too expensive. Thankfully family is close by and someone is staying with them, so they're safe. However, she seems to "normalize" this behavior. When my dad gets up he looks confused and like he's going to fall. "Oh, that's how he looks now when he gets up." I left him for several hours while she was having surgery and when I came home, he had done nothing. Didn't eat, drink, let their dog out. He just laid in bed or the recliner. Thankfully he doesn't try to turn on a stove or anything but he's a fall risk - he's so unbalanced. She's absolutely exhausted from being his full time caretaker. How do I help her realize she needs help? I've told her we need a diagnosis for him because there have to be resources available. I'd estimate he's in moderate to late stage dementia. He asks the same things over and over, is starting to forget names, sleeps A LOT, hates taking a shower and doing basic hygiene, and looks confused much of the time. My heart breaks for him and my mom. Thanks for reading if you made it through this.

harshedbuzz

@cjwelborn

Hi and welcome. I am sorry for the reason you find yourself here but pleased you found this place. I have no idea why I am the first to reply, perhaps others will weigh in once this thread rises to the top.

You said: We're not even 100% sure this is what we're dealing with, but it's very likely vascular dementia as he had stroke about 10 years ago. His memory had been on a slow decline for years, but it's definitely worse now. Unfortunately he had 2 bouts of cancer that he's in remission from, so that's further delayed a diagnosis. He's now incontinent day and night and can barely get to the bathroom when he needs to and has to wear adult diapers all the time.

Does he routinely see his PCP? Is that doctor aware of what is going on and done the basic bloodwork to rule out treatable conditions that mimic dementia? It would be worthwhile to alert his PCP to his behaviors and symptoms ahead of a visit to make sure this is done. Sometimes people of our parents' generation will listen to a doctor. FWIW, a slow and gradual decline is more typical of Alzheimer's. Vascular dementia tends to progress in a series of plateaus and steeper drops. It's common to have both, btw.

My parents just moved 2 hours away to PA and my mom is recovering from knee surgery. He relies on her for EVERYTHING and she's done it for so long but it's really taking a toll on her. She put her knee surgery off for a year and it got so bad she could barely walk. We asked her to have someone come in to help him while she's recovering, and she said it was too expensive. Thankfully family is close by and someone is staying with them, so they're safe.

My mom fought me for a decade regarding dad get a diagnosis so I can appreciate your frustration. Why did they move? Does they have the legal paperwork in place around POAs and such? Who is the person staying there and for how long? Are they trustworthy and not potentially someone who might benefit financially from this arrangement? Unless they have unlimited funds, a deadbeat nephew or sibling could cause them to make financial moves that could disqualify them from Medicaid assistance if they need it. A CELA can help with POAs and Medicaid planning. Word to the wise, PA is one of the states that doesn't allow Medicaid funds to be used for a MCF. The individual would need to qualify for a SNF.

www.nelf.org

However, she seems to "normalize" this behavior. When my dad gets up he looks confused and like he's going to fall. "Oh, that's how he looks now when he gets up." I left him for several hours while she was having surgery and when I came home, he had done nothing. Didn't eat, drink, let their dog out. He just laid in bed or the recliner. Thankfully he doesn't try to turn on a stove or anything but he's a fall risk - he's so unbalanced. She's absolutely exhausted from being his full time caretaker.

There could be a number of reasons. With my mom it was a combination of things. One being the frog in the warm pot of water set to boil syndrome where she was too close to notice subtle changes. This was coupled with believing dad's issues were "a part of the aging process". Both of these were exacerbated by her denial of a condition that prevented her from doing as she pleased and a warped sense of loyalty and protectiveness as if denying his decline would prevent others from noticing.

How do I help her realize she needs help? I've told her we need a diagnosis for him because there have to be resources available. I'd estimate he's in moderate to late stage dementia. He asks the same things over and over, is starting to forget names, sleeps A LOT, hates taking a shower and doing basic hygiene, and looks confused much of the time. My heart breaks for him and my mom. Thanks for reading if you made it through this.

You are describing does sound later stage. It also sounds like he is not safe to be home alone. My mom left dad longer than I felt was safe until he failed to respond to a smoke alarm and just sat there not recognizing it. And when I told him what it was (a HVAC tech soldering), dad got up to find mom who wasn't home. In a real fire, he'd have died.

That said, there aren't really much in the way of resources that require a diagnosis if he's over 65. You might need one for a springing POA.

You know mom best. I badgered mine. I created a Plan B and waited for the shoe to drop which is did. There is a nuclear option of letting APS know about the situation and asking them to look into it.

HB