Caregivers’ chat

[medtran49]

After my dad was moved into a nursing home because of falls, he became very verbally abusive to the darker skinned staff, as well as physically abusive to some extent. I had never in my entire life heard him be a racist, I mean nothing at all. In fact, he and my mom were one of the few couples who were accepting and welcoming, as in seeing them socially, when a racially mixed couple and their 2 girls joined our Southern Baptist church in the late 1960s, early 1970s.

People can and do change radically as dementia progresses. One of the sweetest, nicest, most polite woman you could ever hope to know became a raging, physically and verbally abusive witch (change w to b) to everyone, even her own daughter attempting to care for her, as her dementia progressed. They had no choice but to put her in a facility because they could not care for her.

You have to learn to do what you can and not feel guilt about what you can't do.

I'm going to write something here that I wouldn't if Craig was still visiting here on a regular basis. His brother was diagnosed with stage IV lung cancer, i.e. basically terminal. He lived on the opposite coast of Florida from us. His son lived way up north, as well as BIL's girlfriend. He used to spend 6 months in Florida, 6 months up north. There were nieces and a nephew that lived close to him but they all had traditional jobs and were also still fairly young. I was still working from home then and could work from pretty much anywhere as long as I had a good internet connection. So, I ended up pretty much moving in with BIL for almost 6 months. Craig would come and stay with him for a weekend or so to give me a break a couple of times a month, and so we could have a conjugal visit for a night or 2, but I took care of BIL otherwise.

BIL passed fairly unexpectedly. We think he was just waiting for a visit from his son and grandkids. He got to spend a couple of happy days with them, then worsened and died within 10 hours. He wanted a celebration of life and not a funeral, so that's what we did. Quite a few of his female friends, including girlfriend and daughter in law, all knowing that I had been his caretaker, asked how I was doing now as far as emotions and sleeping, while we were sitting and talking about him during the wake. My response was sad because he was gone, and a bit guilty as I felt like a huge weight had been lifted since I didn't have to listen for him to call me at night or worry about whether he was going to be alive when i went to wake him from a nap or night's sleep, or any of the other myriad of issues that would arise, and that the 2 nights before were the most restful I'd had since it all started. All of them told me I shouldn't feel guilty as I'd done all that I could for him and they knew he appreciated it. Thought about it and they were right. I did everything I could and was in a position where i could make it so he didn't have strangers taking care of him, which I knew he hated the idea of as we talked about it when he formally chose home hospice care instead of needing to go into a facility since I was available.

You do what you can and don't feel guilty for what you can't.

 

[JAS_OH1]

After my dad was moved into a nursing home because of falls, he became very verbally abusive to the darker skinned staff, as well as physically abusive to some extent. I had never in my entire life heard him be a racist, I mean nothing at all. In fact, he and my mom were one of the few couples who were accepting and welcoming, as in seeing them socially, when a racially mixed couple and their 2 girls joined our Southern Baptist church in the late 1960s, early 1970s.

People can and do change radically as dementia progresses. One of the sweetest, nicest, most polite woman you could ever hope to know became a raging, physically and verbally abusive witch (change w to b) to everyone, even her own daughter attempting to care for her, as her dementia progressed. They had no choice but to put her in a facility because they could not care for her.

You have to learn to do what you can and not feel guilt about what you can't do.

I'm going to write something here that I wouldn't if Craig was still visiting here on a regular basis. His brother was diagnosed with stage IV lung cancer, i.e. basically terminal. He lived on the opposite coast of Florida from us. His son lived way up north, as well as BIL's girlfriend. He used to spend 6 months in Florida, 6 months up north. There were nieces and a nephew that lived close to him but they all had traditional jobs and were also still fairly young. I was still working from home then and could work from pretty much anywhere as long as I had a good internet connection. So, I ended up pretty much moving in with BIL for almost 6 months. Craig would come and stay with him for a weekend or so to give me a break a couple of times a month, and so we could have a conjugal visit for a night or 2, but I took care of BIL otherwise.

BIL passed fairly unexpectedly. We think he was just waiting for a visit from his son and grandkids. He got to spend a couple of happy days with them, then worsened and died within 10 hours. He wanted a celebration of life and not a funeral, so that's what we did. Quite a few of his female friends, including girlfriend and daughter in law, all knowing that I had been his caretaker, asked how I was doing now as far as emotions and sleeping, while we were sitting and talking about him during the wake. My response was sad because he was gone, and a bit guilty as I felt like a huge weight had been lifted since I didn't have to listen for him to call me at night or worry about whether he was going to be alive when i went to wake him from a nap or night's sleep, or any of the other myriad of issues that would arise, and that the 2 nights before were the most restful I'd had since it all started. All of them told me I shouldn't feel guilty as I'd done all that I could for him and they knew he appreciated it. Thought about it and they were right. I did everything I could and was in a position where i could make it so he didn't have strangers taking care of him, which I knew he hated the idea of as we talked about it when he formally chose home hospice care instead of needing to go into a facility since I was available.

You do what you can and don't feel guilty for what you can't.

Great post, thank you.

 

[SandwichShortOfAPicnic]

Ugh…more unpleasantness.

The nursing home administrators did move my parents into a double-occupancy room, which is quite large, with floor-to-ceiling windows that look out on a wooded area, and an expansive private bath.

This was against our wishes, as ever since Mom has moved into the home, they’ve both been aggravating each other. My mom is bitter and unhappy and takes it out on my dad, and my dad has reverted to some sort of 1850’s version of a husband/wife-owner and continually bosses my mom (and the nurses) around in an extremely demeaning manner - before Mom moved in, Dad was generally cheerful and easy to manage, but now he’s gotten extremely possessive of my mom, and is treating everyone (mainly the women) horribly.

Even the nursing staff voted against moving them in together, but the administration overruled it, on a “temporary” basis. Money is the name of the game, as getting my folks in a larger room together frees up more space, and the single rooms they were in go for $8500US/month each. With Medicare picking up the cost of my dad’s share, and with my mom’s soon to follow (she’s got enough to fund maybe 10 more months before Medicare kicks in for her), families have less of a say, because they’re not footing the bill.

They’ve already had to separate them once and put my mom in a single room for the night, because Dad was shouting the house down, telling her to “GET THEM DAMN CHICKENS IN!” and “GET YOUR FAT ASS IN THE CAR BEFORE I KNOCK SOME SENSE INTO YOU!” - it’s important to note that I’ve never heard my dad ever use a “bad” word except one time, when describing pizza (“It smells like somebody done shit in the oven!”), and for as much as he beat us boys black and blue growing up, he never hit my mom or my sister, and always had a special hatred for any man who hit women/girls, so both those statements are very, very out of character for my dad.

I had to go over to meet with the care facility as part of the family as a whole, and to also walk through the house and take anything small that I wanted, and put my name on any large items, to be decided by lottery later if more than one person wanted something.

I never like doing that, because there isn’t really anything much that I ever wanted from them - my parents usually bought everything used/cheap if they could, and most of their stuff was gotten rid of when they moved from the big house to the condo, but I did grab a couple of things. I’ll post those elsewhere.

I’m already getting the grandfather clock (and it’s better quality than I thought, because it was my paternal grandparents’ clock, and they bought quality when they could. I’d originally thought it was my maternal grandparents’ clock, and they would have gotten it from K-Mart…or worse).

As befitted my paranoid, untrusting Mom, there was also some miscellaneous cash in the house, tucked away here and there (she learned that from her parents - we found loads of cash squirreled away all over their house when they died) and my ever-honest brother divided that up between us.

Back again in a couple of weeks to get the clock. Lee was laughing at me walking around the house, because he was following me with a pad to write down what I potentially wanted, and I said, “Can I have this plastic kitchen clock?”

“Well yeah, that’s just junk.”

“Ok…what about this little pottery jug? I kind of like that.”

“Yeah, sure. Anything big, though? You need a bed, or bookcases? That bed was your grandma’s you know, when she was a girl, so it’s old.”

“What about this jar of pickles? They’re not opened. I’d eat those.”

“JFC, you’re unreal! All you want’s <bleeping> canned goods!”

I finally settled on a nice space heater they have, mainly to give him something to write down next to my name.

Texts from Mom have been equal parts crazy and heartbreaking. One minute, she’ll randomly text one of us, and say something like, “Please tell the motel people here not to wake me up so much. Thank you, Lee.” followed by one a couple of hours later that’ll say something like, “Lee, please come and get us and take us home. Do not leave us here. We want to die at home and don’t have any time left at all. Please.” followed by another one that’ll say, “Please have a heart and call us and explain why you are doing this to us, Lee. I will come live with you and be quiet if you will just let me.”

Those, of course, upsets Lee something awful, because even though she sends those to random people, she always names Lee in them. Later, though, she’ll be back to texting something about being on vacation or being in a motel.

I can't get my head around this.
In the UK we're flogged the idea that private healthcare is superior but I constantly hear stories about people dying because they don't have adequate insurance or the insurance companies/ care providers calling the shots about someones care rather than the family that has their best interests at heart, or drug companies pushing opitate prescription drugs or a hundred other iatrogenic problems.

It sounds truly awful that you don't get a say in it. They are essentially making a difficult situation much worse for everyone.

Do the providers not have a duty of care? Putting a patient or staff at risk (as they are surely doing with your parents) would be a prosecutable offence in the UK.

An independent risk assessment is needed.

 

[caseydog]

I can't get my head around this.
In the UK we're flogged the idea that private healthcare is superior but I constantly hear stories about people dying because they don't have adequate insurance or the insurance companies/ care providers calling the shots about someones care rather than the family that has their best interests at heart, or drug companies pushing opitate prescription drugs or a hundred other iatrogenic problems.

It sounds truly awful that you don't get a say in it. They are essentially making a difficult situation much worse for everyone.

Do the providers not have a duty of care? Putting a patient or staff at risk (as they are surely doing with your parents) would be a prosecutable offence in the UK.

An independent risk assessment is needed.

In this case, it is the facility making the bad decision. They are trying to double the two of them in one room to make room for more people. But, I think it is universal that "administrators" are penny-pinchers, and have a tendency to not listen to the nursing staff when making decisions.

Health care in the US isn't "bad," just really expensive. If you have a lot of money, you get great care in a first class facility. If you don't have a lot of money, it's a different story.

As for prescription drugs, the big pharmaceutical companies write the laws here. They tell the government what to do. The government finally came down on Big Pharma on opioids when enough people died. But, prescription drugs in the US are way more expensive than they are in Canada or Mexico, because the US government lets Big Pharma charge pretty much anything they want.

CD

 

[TastyReuben]

I can't get my head around this.

In this case, it is the facility making the bad decision.

Yeah, it’s really a money decision. Administrators think about that fine line between money and care, looking for that sweet spot where the care is “adequate” and the cost is acceptable.

I’ve been in a few nursing homes over the decades, and I should say that overall, I’m very pleased with where my parents ended up, because they don’t have a lot of money, but they managed to land in a care home that offers a high level of service, but they accept government insurance (Medicare/Medicaid). That’s unusual, it’s frequently one or the other here (quality and privately funded or government funded and bare bones care).

Most government-funded homes I’ve been in have been the stereotypical ones, smelling of urine, lots of institutional tile, slop for food - Mom and Dad have a fully carpeted cavernous room with floor-to-ceiling windows, all the streaming services (not that they use them), group days out, and decent food, with fairly responsive staff, fireplaces all over the place (so many fireplaces!). But like anything that’s for-profit, the owners will try and save a buck wherever they can. They’re fortunate to be there as opposed to virtually any other home in the area, though.

 

[TastyReuben]

Today is my mom’s 85th birthday. One of my brothers visited her and called me while he was there so I could talk to her (and my dad). The reason my mom no longer has a phone…she kept calling 911 and reporting she’d been kidnapped and to come rescue her, please.

Next, she told me she had no car any longer, and she had to keep walking miles and miles between the care home and her house…it’s been…three months or so?…since she moved to the care home. She’s not walking to her previous house - it’s eight miles away.

Last, she was busy looking for a letter the doctor had just sent her, explaining that our dad is not her husband and is also not our dad.

 

[caseydog]

Today is my mom’s 85th birthday. One of my brothers visited her and called me while he was there so I could talk to her (and my dad). The reason my mom no longer has a phone…she kept calling 911 and reporting she’d been kidnapped and to come rescue her, please.

Next, she told me she had no car any longer, and she had to keep walking miles and miles between the care home and her house…it’s been…three months or so?…since she moved to the care home. She’s not walking to her previous house - it’s eight miles away.

Last, she was busy looking for a letter the doctor had just sent her, explaining that our dad is not her husband and is also not our dad.

My mom did something she hasn't done before. She was talking to my sister, and asked, "Do we live in Puerto Rico?" My sister didn't tell her, she made my mom think about it, "You know where you live." Mom thought about it, and said, "Houston."

A few days later, she had the same question about San Antonio. My sister handled it the same way, and mom did remember they live in Houston after a little thought.

Puerto Rico and San Antonio are both places my parents lived in the past, but they have lived in Houston the last 30 years.

Mom is 89.

CD

 

[TastyReuben]

I talked to my mom for a good 15 minutes, and she rambled on about one thing or another.

By comparison, my conversation with my dad:

“Hey Pap, how’re you doin’?!”
“Me?…I’m doin’ nuthin’…an’ I’m purty good at it, too!”
“Well, you deserve to relax a little these days. You feelin’ ok?”
“Here…talk to your brother…”

…and he handed off the phone.

 

[caseydog]

By comparison, my conversation with my dad:

“Hey Pap, how’re you doin’?!”
“Me?…I’m doin’ nuthin’…an’ I’m purty good at it, too!”
“Well, you deserve to relax a little these days. You feelin’ ok?”
“Here…talk to your brother…”

…and he handed off the phone.

I'm going to guess here that you are not describing anything new. He probably did the same thing years ago?

CD

 

[TastyReuben]

I'm going to guess here that you are not describing anything new. He probably did the same thing years ago?

CD

Many years ago, when he was my age now, yes, he’d barely speak on the phone.

Maybe 15 years ago or so, he lightened up a lot and he’d tell stories and jokes. In retrospect, it was the initial sign of his dementia, most likely.

He’d tell really funny, sometimes shocking, stories about when he was a young man. Dad always held us to an extremely high standard of integrity and honesty, and to hear him tell about damaging his BIL’s brand new ‘59 El Camino and blaming it on some neighborhood teenagers, and then cackling about how much trouble they got into over it was a little alarming.

He was also very insistent on no vulgarity of any kind (even saying “fart” warranted a whipping), and he started telling mildly racy jokes that were very funny but somewhat out of character for him.

 

[caseydog]

Many years ago, when he was my age now, yes, he’d barely speak on the phone.

Maybe 15 years ago or so, he lightened up a lot and he’d tell stories and jokes. In retrospect, it was the initial sign of his dementia, most likely.

He’d tell really funny, sometimes shocking, stories about when he was a young man. Dad always held us to an extremely high standard of integrity and honesty, and to hear him tell about damaging his BIL’s brand new ‘59 El Camino and blaming it on some neighborhood teenagers, and then cackling about how much trouble they got into over it was a little alarming.

He was also very insistent on no vulgarity of any kind (even saying “fart” warranted a whipping), and he started telling mildly racy jokes that were very funny but somewhat out of character for him.

Dementia effects people in different ways. Some people get very passive (my dad), others get mean and/or aggressive. Sounds like your dad stopped censoring himself.

CD

 

[medtran49]

I talked to my mom for a good 15 minutes, and she rambled on about one thing or another.

By comparison, my conversation with my dad:

“Hey Pap, how’re you doin’?!”
“Me?…I’m doin’ nuthin’…an’ I’m purty good at it, too!”
“Well, you deserve to relax a little these days. You feelin’ ok?”
“Here…talk to your brother…”

…and he handed off the phone.

My dad was the same way. He'd talk to me for a couple of minutes then give my stepmom the phone.

 

[SandwichShortOfAPicnic]

Parents often project the things they dislike about themselves onto their children. His ultra moral upbringing of you probably reflected the polar opposite of the things he disliked in himself.

 

[TastyReuben]

Parents often project the things they dislike about themselves onto their children. His ultra moral upbringing of you probably reflected the polar opposite of the things he disliked in himself.

I’ve often said that, but in terms of the way people criticize others, that what they criticize is frequently some trait of their own that they’re not consciously aware of having.

 

[SandwichShortOfAPicnic]

I’ve often said that, but in terms of the way people criticize others, that what they criticize is frequently some trait of their own that they’re not consciously aware of having.

Yep over and over again, projection.
But I think often they are aware of what they despise in themselves.