Caregivers’ chat

[karadekoolaid]

It´s now been a week since the old boy was taken to hospital. Spoke to the Ward Sister yesterday, and she said the chest infection is still there, but they have started evaluating other aspects, both physical and mental.
He´s very confused and doesn´t really understand why he´s there. My mum went to visit him yesterday and got quite upset, but after 70 years of marriage, that´s understandable. I think she realises he´s not coming home again.
Now we´re dependant on the medical team to evaluate his case and come to a decision, which we expect will be 24 hour care.
And there´s another problem... I read yesterday that there are over 500,000 cases waiting to be resolved across the UK.

 

[Morning Glory]

Now we´re dependant on the medical team to evaluate his case and come to a decision, which we expect will be 24 hour care.

Are you up to speed with the financial implications of this in the UK? I recently changed my will because of this. There was talk last year of a cap to the amount of someone's 'estate' which is payable - but I don't know if that bill has gone through.

 

[garlichead]

Well not everyone gets dementia of course. But you know, if you are noticing signs then maybe try to persuade him to get it checked. It could be something else entirely which can be treated now. I first realised my partner really wasn't right when he became convinced that birds were saying his name. He still is convinced!

Dementia is referred to as diabetes 3 lately because of the direct correlations to blood sugar and consumption impairs brain cells that lead to cognitive dysfunction. This is pretty well studied and well known. A high insulin load will prevent the brain from using glucose as a source of energy because it will have excess levels and eventually brain cells die. The ketogenic diet is used to improve cognitive function because of the way ketones interact with brain cells and use an alternative pathway than glucose to allow energy to be absorbed and to regenerate new cells. There are clinics that deal in these situations so it might be something that might be be of interest to some people. Unfortunately if dementia or Alzheimer’s is in the later stages not much can be done, but getting to it soon, it does effect positively with cognitive assessment scores. Cheers

 

[TastyReuben]

TastyReuben is Dad in a different living facility than Dad? And are they in the same area where you live?

Mom lives at home. They’d just downsized (after 50 years in their earlier place) and moved into town when, after a couple of weeks, my dad got his feet tangled up and fell, breaking his hip. That’s what landed him in a nursing home. He’d needed to go for quite some time, due to his mental state, but it was the physical issue that finally forced it.

Mom lives about 15 minutes from the nursing home, and all of my siblings live no more than eight miles away. I live the furthest out. I’m an hour-and-15 minutes away, so I rarely get over there (mainly due to my abhorrent work schedule and some light caregiver issues of my own, concerning my wife).

He´s very confused and doesn´t really understand why he´s there.

That’s how my dad was when he first went in. He had a severe hip break, long surgery, a lot of pain and rehab, and he’d sit right there and ask why he was there. It’s usually go like this:

“Let me jus’ ask you…why cain’t I go home? What am I doin’ in here? Huh? Tell me that!”

“Dad, you fell at the new house and broke your hip. You can’t even walk right now. Mom isn’t able to take care of you right now. This is the best place for you.”

“I broke my hip?! I did?! Well, huh! I guess I gotta stay put, then. I did break my hip, you know. Yessir. I broke it clean in half!”

“Yeah, Dad. It was a bad break, but they’re taking good care of you here.”

“There’s just one thing I want to know, though…why am I in here? Why can’t I just go home?”

I had that conversation with my dad for a solid 30 minutes or more, just round and round, and as soon as there was any lull, he’d pop out with, “Lemme jus’ know one thing…why am I here?”

After a few weeks, he settled in and now, he doesn’t ask that as much, though he still does occasionally. Mainly, at this point, he just thinks that where he’s at now is “home,” so how come Mom and all the kids aren’t there as well? He thinks we all live there and gets upset when we’re not there.

 

[medtran49]

I feel for all of you. Craig still isn't, and apparently never will be, "right" again. I can't let him be alone with a salesperson because he will agree to anything. If he's tired or even slightly dehydrated, much less actually sick, then even the simplest tasks, thought processes, etc. much more often than not become insurmountable. His frustration quotient is sky high, think 1 little thing going wrong, and then a 200ish pound 2 year old throwing a tantrum. His Id has become very dominant in that he wants what he wants, and he wants it now regardless of the consequences and how it affects others. His short term memory is extremely spotty. He's also become one of those "little old men" who capture you in a conversation and then drone on and on and on about things in the past, usually with repeats of things. It's gotten so bad I've had to cut him off many times so the other person could escape.

He's also still having spatial visual issues at times. He was tired the other day because we had a fairly big order of things at work that had to be picked up from our supplier and then brought into the office, then packed up to be shipped out to customers. We were trying to decide whether to pack 1 order into 1 or 2 boxes of different sizes due to the weight, and he thought both of the tall, rectangular boxes were the same size, which they weren't, as 1 was 8 inches less width than the other. Once the other person and I both asked, at the same time, if he didn't see the size difference, it took him a couple of minutes before it clicked.

The other day we had gotten a couple of frozen dinners, a pot pie for me and sheppards pie for him. He was putting them in to cook and I heard him messing with the big oven and the toaster oven, asked him why and he said it was because they had to be cooked at different temps. I knew my pot pie was supposed to be at like 400 so i asked him what his was supposed to be cooked at. He said 575. I knew that couldn't possibly be right so made him give me the box. The temp was supposed to be 375, a 200 degree difference. He never even thought to question it. Things like this happen all the time. It just scares me to death to think of what will happen with him if something happens to me.

 

[karadekoolaid]

One of the things that we´ve noticed is how the dementia has destroyed short-term memory, but mysteriously enhanced long term memory.
The other day (before going in to hospital) he was telling me how he went down to the local riverside and rented a rowing boat, and then rowed up to a local village (about 5 miles away).Then there was the story of when he was in the army (1953 - 54).
But he couldn´t remember who my wife was, or how many kids I had.
Then there were the 3 grey dogs on the roof over the road...

 

[TastyReuben]

I feel for all of you. Craig still isn't, and apparently never will be, "right" again.

Reading through that really hammers home something that (at least our) doctors never really discuss about stroke survivors - that it’s not just the physical things that change, but personality traits as well.

My wife, even though we consider her incredibly lucky to have come out as intact as she is, is frankly not the same person she was before her stroke. She’s much less sympathetic about others, which is a complete 180-degree turn for her. She’s much more direct, has much less tact. She used to be very outgoing, life-of-the-party (which was great for me as an introvert - she did all the social representation for the two of us) - now she’s very reserved and self-conscious about the way she speaks, because she feels that she appears slow-witted to people who don’t know her.

We’re children of the ‘70’s, so I can put it in TV sitcom terms - prior to 2013, her personality was very much like Mary Richards from the Mary Tyler Moore show; after her stroke, she came out a lot more like Maude, from Maude.

On top of that, though, are the physical effects, and it’s just amazing how much a stroke can affect. She was an excellent swimmer before, but now, being in the water disorients her. I’ve mentioned before that she appears deaf in one ear now, except she’s not deaf; mechanically, all her parts are working fine, but her brain just ignores the signal coming from that ear, so there’s nothing that can be done to fix it.

The one that concerns me the most, and why I don’t leave her alone for more than a few hours, is that she can be standing or walking along, and for no reason…down she goes. Her neurologist says that’s because her brain periodically “forgets” that she has a right leg, so the communication back and forth gets interrupted for a split second, and it’s “Hello floor, nice to meet you!”

She has the usual frustrations and short temper, and she has no concept of the passage of time. I have to constantly stay on her to get ready to go somewhere, like to the doctor’s or to meet a client, something like that, and that issue spills over into medication management - she can’t remember one moment to the next to take her meds, and no amount of alarms or texts do any good - I have to stand there and watch her take them, or else she’ll put them aside and say, “Yeah, yeah, I’ll do that in a minute,” and then never do that. That, and the fall risk, is why I don’t plan on ever going back to the office to work.

The weird thing is - she can still do her job at a high level, but it’s like that’s all she can do, like it either takes all her brainpower to do that, or just that all the pieces of her brain that she needs to specifically manage people’s vacations remained intact and even heightened, to a certain extent.

Wishing you and Craig the best, I know I miss seeing him here.

 

[karadekoolaid]

Are you up to speed with the financial implications of this in the UK? I recently changed my will because of this. There was talk last year of a cap to the amount of someone's 'estate' which is payable - but I don't know if that bill has gone through.

We had to change my parent´s will when my sister had AVM and the brain operation last year, but her husband had NOT made a will, so half of his house will go to the government. Sis will be in a Care Home for the rest of her life.
We also checked on my dad´s current/savings accounts , because if/when old folks go to a Care Home, the council can take a certain amount if there´s more than £14,000 there.

 

[medtran49]

One of the things that we´ve noticed is how the dementia has destroyed short-term memory, but mysteriously enhanced long term memory.
The other day (before going in to hospital) he was telling me how he went down to the local riverside and rented a rowing boat, and then rowed up to a local village (about 5 miles away).Then there was the story of when he was in the army (1953 - 54).
But he couldn´t remember who my wife was, or how many kids I had.
Then there were the 3 grey dogs on the roof over the road...

I had to go stay with my dad, who lived over 1,000 miles from us, after my stepmom had a bad car accident and was hospitalized for several weeks, then had to move to rehab for several months. It had been almost a year since I had last seen him and I knew he was failing from talking to him on the phone plus my stepmom kept me up to date. After spending the first few days there, it really became clear how bad things had become.

He was showering 1 day and was in there for a really, really long time. He had forgotten how to turn the water off so was just standing there in a cold shower by that time, getting upset because he didn't want to get out and get water everywhere, and didn't know what to do. I got him out and calmed down, but then later that night after he went to bed called Craig and ended up breaking down and crying my eyes out because that little incident just hit me so hard.

He also would forget who I was at times. It was wintertime so was cold and the central heating was on. Daddy always tended to feeling cool so he was cold even though the thermostat was set at 70. So, he turned the thermostat up to 78. It got hot in the house before I realized what he had done because we were sitting down and watching TV. I then turned it back down and fussed at him a little bit about turning it up so high, and telling him that I'd get him a blanket if he was cold. We went to the hospital the next day to see stepmom and he proceeded to tell her that "that damned woman you've got staying with me at night won't let me turn up the thermostat" with me sitting there in the room and then asked me why I couldn't stay with him all the time.

Daddy also got extremely racist. He eventually had to go to a nursing home because of falling episodes, violent outbursts, etc. Previously, he didn't have a predjudiced or violent bone in his body, but he became abusive toward the staff that were black, calling them the "N" word and, at times, being physically abusive, just a total 180 change in personality.

 

[Morning Glory]

One of the things that we´ve noticed is how the dementia has destroyed short-term memory, but mysteriously enhanced long term memory.

I've heard it said so many times that long term memory seems to stay intact. But with Steve (my partner) its not so at all. For example, he used to work as an assistant lighthouse keeper on a lighthouse off the coast in the North East. Now, that is no ordinary occupation and one that you'd think would be memorable. He often told me vivid stories about it. But now its a blank. He remembers nothing of it. In fact he no longer knows what a lighthouse is.

 

[Morning Glory]

I should add that he does still remember who I am but not how we met or where we lived before.

 

[TastyReuben]

Daddy also got extremely racist.

My dad got that honed to a fine art long before the dementia set it.

 

[kaneohegirlinaz]

For the past couple of years, my Mother is stuck on everything having happened "10 years ago, you know we still lived in Hawaii."

Mom, we left Hawaii in 2007.
Both DH & I can see her cognitive abilities waning, greatly. But she passed her annual Medicare check up and DH said that's where they asking you a battery of questions that are suppose to indicate any issues.

 

[caseydog]

Mom lives at home. They’d just downsized (after 50 years in their earlier place) and moved into town when, after a couple of weeks, my dad got his feet tangled up and fell, breaking his hip. That’s what landed him in a nursing home. He’d needed to go for quite some time, due to his mental state, but it was the physical issue that finally forced it.

Mom lives about 15 minutes from the nursing home, and all of my siblings live no more than eight miles away. I live the furthest out. I’m an hour-and-15 minutes away, so I rarely get over there (mainly due to my abhorrent work schedule and some light caregiver issues of my own, concerning my wife).


That’s how my dad was when he first went in. He had a severe hip break, long surgery, a lot of pain and rehab, and he’d sit right there and ask why he was there. It’s usually go like this:

“Let me jus’ ask you…why cain’t I go home? What am I doin’ in here? Huh? Tell me that!”

“Dad, you fell at the new house and broke your hip. You can’t even walk right now. Mom isn’t able to take care of you right now. This is the best place for you.”

“I broke my hip?! I did?! Well, huh! I guess I gotta stay put, then. I did break my hip, you know. Yessir. I broke it clean in half!”

“Yeah, Dad. It was a bad break, but they’re taking good care of you here.”

“There’s just one thing I want to know, though…why am I in here? Why can’t I just go home?”

I had that conversation with my dad for a solid 30 minutes or more, just round and round, and as soon as there was any lull, he’d pop out with, “Lemme jus’ know one thing…why am I here?”

After a few weeks, he settled in and now, he doesn’t ask that as much, though he still does occasionally. Mainly, at this point, he just thinks that where he’s at now is “home,” so how come Mom and all the kids aren’t there as well? He thinks we all live there and gets upset when we’re not there.

My mom's only issue is short term memory. We have "round and round" conversations all the time. I am better at cutting them off and redirecting than my sister is, so my sister gets frustrated.

My dad was in the hospital and rehab for a month, and my mom got along surprisingly well without him in the apartment. She knows she has this sort term memory issue, and even asks, "Why can't I remember things you told me five minutes ago?" So, she is aware of this limitation.

I don't know from day to day what my dad's level of self awareness is. He will suddenly decide that he doesn't need his walker to walk across the apartment, and then he will fall. We will ask him, "Why weren't you using your walker?" He will tell us, "I didn't need it." The frustration for us is that we know that YES, he did need his walker. That's why he fell. That's why the paramedics came. That's why he's in the ER getting his head stitched up.

The toughest part for me is when I think of my dad, who once ran a multi billion dollar corporation, and now can't manage his own bank account. I imagine that is frustrating for him, too. I'm sure this isn't how he wanted his twilight years to be.

CD

 

[caseydog]

I feel for all of you. Craig still isn't, and apparently never will be, "right" again. I can't let him be alone with a salesperson because he will agree to anything. If he's tired or even slightly dehydrated, much less actually sick, then even the simplest tasks, thought processes, etc. much more often than not become insurmountable. His frustration quotient is sky high, think 1 little thing going wrong, and then a 200ish pound 2 year old throwing a tantrum. His Id has become very dominant in that he wants what he wants, and he wants it now regardless of the consequences and how it affects others. His short term memory is extremely spotty. He's also become one of those "little old men" who capture you in a conversation and then drone on and on and on about things in the past, usually with repeats of things. It's gotten so bad I've had to cut him off many times so the other person could escape.

He's also still having spatial visual issues at times. He was tired the other day because we had a fairly big order of things at work that had to be picked up from our supplier and then brought into the office, then packed up to be shipped out to customers. We were trying to decide whether to pack 1 order into 1 or 2 boxes of different sizes due to the weight, and he thought both of the tall, rectangular boxes were the same size, which they weren't, as 1 was 8 inches less width than the other. Once the other person and I both asked, at the same time, if he didn't see the size difference, it took him a couple of minutes before it clicked.

The other day we had gotten a couple of frozen dinners, a pot pie for me and sheppards pie for him. He was putting them in to cook and I heard him messing with the big oven and the toaster oven, asked him why and he said it was because they had to be cooked at different temps. I knew my pot pie was supposed to be at like 400 so i asked him what his was supposed to be cooked at. He said 575. I knew that couldn't possibly be right so made him give me the box. The temp was supposed to be 375, a 200 degree difference. He never even thought to question it. Things like this happen all the time. It just scares me to death to think of what will happen with him if something happens to me.

Craig isn't on the forum very often anymore. I've wondered about that. People come away from traumas changed. It sounds like the two of you are still managing to enjoys life and have some fun, in spite of the changes. Keep cooking, and eating well. I hope Craig is still cooking outdoors on a regular basis. Seems like something he really enjoys.

CD