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Living with a Loved One's Dementia

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Holman
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Living with a Loved One's Dementia

Post by Holman » Wed Mar 13, 2019 5:32 pm

I mentioned some time back that my wife and kids and I were moving into a larger home that we would share with my aging in-laws, who were coming to join us from their place in Brooklyn. (Early reporting was correct: the new house is magnificent.)

My FIL (89 years old)) has been dealing with dementia, and last summer both he and my MIL separately fell and broke their hips. Surgery and rehabilitation meant that they would not be able to continue in the Brooklyn house they've occupied since 1968, and a quality nursing facility would (because of the dementia) have required them to live separately. Separation and institutionalization is the one thing FIL has always clearly said he didn't want.

Instead, we opted for all us to live together, meaning that my wife and I (and even our teen boys) would be available to support MIL in taking care of FIL. His doctor tells us that this is a reasonable arrangement so long as we're prepared to provide necessary attention and prudence.

It has been interesting so far, and maybe not even as difficult as I expected. FIL can't tell you what day it is, but he can recount personal stories from the 1960's or 80's in good detail. Surprisingly, he still reads the newspaper and books and watches the news, although I don't know how long they stick with him. He doesn't always know how to get from the living room to the kitchen.

The more serious issue, usually, isn't memory but emotion. It's often said that with dementia the sufferer is aware at some level that something is very wrong, but they are continually frustrated and/or frightened by their loss of capacity. Sometimes this produces a great deal of anger, but so far FIL seems to be riding out his loss of ability with a kind of mellow acceptance. He makes no impossible demands and is appreciative of help. He's cranky when tired, but that's about it. (Honestly, he had much more of a temper 25 years ago when I was dating his daughter.)

He really loves living with our dog, so that's a big plus.

Probably the most unexpected and most viscerally difficult thing is this: his loss of control has led to a kind of obsessive behavior that manifests in the bathroom. FIL shits a lot, as old men do, but he never feels that mere wiping gets him clean. This leads him to standing in front of the sink and using toilet paper, water, and then washcloths to wipe his ass, inevitably leading to splashes of fecal (or at least potentially fecal) water on the floor and even in the sink itself.

Occasionally (again, his bowels are nearly 90) he experiences diarrhea, and that's a whole other ballgame.

We've tried to teach him to use wet wipes, which would probably be more effective at this, but of course dementia makes "teaching" kind of impossible. Right now we're at the point where all three of the adults (MIL, spouse, me) follow up every FIL bathroom visit with an inspection and a clean-up. We have full kits of paper towels and bleach spray in place in every bathroom cabinet. We've all gotten good at it, and the main concern is making sure you don't get bleach on decent clothes.

Of course I imagine we can expect further decline. I wonder if anyone here has had experience with dementia and older relatives. Any advice? Commiseration? Bathroom hacks?
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Re: Living with a Loved One's Dementia

Post by Daehawk » Wed Mar 13, 2019 6:08 pm

My grandmother that raised me got dementia then Alzheimers and I moved in with my dad when I was 16.

Then me and my wife lived with her parents since 1988 and in 2006 her father died. After that her mom just dropped off instantly and went downhill mentally from there. We cared for her best as we could until mid 2008. Between both of us being disabled and Donna waaay not able to handle stress we had to get a nursing home for her.

All I can say is I understand and I wish you the best. It is not something Id wish on people.

And now my wife is gone too. Id be willing to bet all that stress took a toll on her and shortened her life. :(
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Re: Living with a Loved One's Dementia

Post by rittchard » Wed Mar 13, 2019 6:27 pm

Thanks for sharing your story. I hope you can provide periodic updates to hopefully help some of us learn from your experience.

I'm currently seeing my mom (82) at the early stages of dementia, and it has been disheartening. Similar to what you mentioned, her short term memory is getting worse and worse, but her longer term memory is mostly intact. She tends to get confused much more so than in the past as well. It seems to have deteriorated fairly rapidly the last year or so, which is really quite scary.
The more serious issue, usually, isn't memory but emotion. It's often said that with dementia the sufferer is aware at some level that something is very wrong, but they are continually frustrated and/or frightened by their loss of capacity.
This is where we are at now, and she has vocalized it, i.e. she knows it's happening, and I think that causes a lot of fear and depression. My dad says she often doesn't want to get up in the morning, she'll just kind of stay in bed and do nothing. She complains that she is dizzy every morning but my dad thinks it's more because she's just depressed. She essentially has no hobbies (aside from watching basketball interestingly enough), so I honestly don't know how she gets through the days. Unfortunately my parents are not the type that would seek help for mental or emotional problems.

Her other biggest "issue" at the moment, though, is with eating. She was always kind of picky to begin with (favoring almost 100% exclusively "real" non-Americanized Chinese food), but now the pickiness has taken on a life of its own. Anywhere we take her, she'll complain about the food and end up not eating much. Even places she used to love, she'll now find issue with. I remember my grandmother (her mom) having similar, almost paranoid, reactions that people were trying to starve her, and now I'm wondering if it's a similar phenomena. My dad is debating moving to a senior community that's closer to a wider variety of Chinese restaurants. The problem with that is it would take them further from me, and she also insists she has to see me often enough (multiple times a week preferably).

Anyway, we are considering various options. Part of me thinks it's inevitable they will need assisted care, so we might as well just start looking for something suitable now. Originally I thought we could hold out in our present situation (we live in the same condo complex) at least until my nephew (sister's kid) graduates from high school in 4 years, but now I don't know if that's feasible any more.

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Re: Living with a Loved One's Dementia

Post by Daehawk » Wed Mar 13, 2019 6:42 pm

I can attest to both the short term memory going and the long term staying good. Also the eating stuff. My mother in law got to where the only thing she would eat was Little Debbie Donut Stix. Thats it..all the time. They eventually forget how to swallow even and their drinks need to be thickened.
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Re: Living with a Loved One's Dementia

Post by em2nought » Wed Mar 13, 2019 6:44 pm

My mom's in her 90s. I don't live with her, but I do most everything that she needs done other than feeding(I do prep food for her), bathing, dressing, & wiping her ass. I stop by almost every night for a few hours until she goes to bed. She doesn't have Dementia, but a couple years ago she had a serious incident at the hospital involving dropping her BP down way too fast way too quick. I think her brain hasn't been the same since that incident. Like being able to figure out which way to move the thermostat for instance. Cognitive?

I would caution you about using disposable wet wipes because THEY AREN'T. You're likely to end up with a plumber having to snake your pipes at the very least. If there's that much toilet paper going down the chute I'd even think about getting some of the septic safe TP.

I bet my dad would have liked having a dog around for his last few years, I wish I had thought of that.
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Re: Living with a Loved One's Dementia

Post by dbt1949 » Wed Mar 13, 2019 6:51 pm

My wife's dementia is pretty mild, as is mine. :? But her's is mainly a result of strokes and her MS. So far it's been 8 years but I'm prepared to go the rest of our lives (hers or mine) if it works out that way.
Her kids will put her in a home (and take all her/my assets) as fast as possible if I go tho.
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Re: Living with a Loved One's Dementia

Post by Unagi » Wed Mar 13, 2019 6:53 pm

Holman wrote:
Wed Mar 13, 2019 5:32 pm
Any advice? Bathroom hacks?
Sounds like he would perhaps appreciate a toilet with a built in bidet. Seriously.

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Re: Living with a Loved One's Dementia

Post by em2nought » Wed Mar 13, 2019 7:01 pm

Unagi wrote:
Wed Mar 13, 2019 6:53 pm
Holman wrote:
Wed Mar 13, 2019 5:32 pm
Any advice? Bathroom hacks?
Sounds like he would perhaps appreciate a toilet with a built in bidet. Seriously.
That sounds like a really good idea. Over in Thailand they actually mount the equivalent of the kitchen sink hose right on the spot where water comes out of the wall for the toilet. They don't use TP. It works pretty well once you get the hang of it. Maybe a nice tile(impervious surface) everything makeover on the bathroom would be helpful too.
#no collusion #no obstruction #get over it

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Re: Living with a Loved One's Dementia

Post by Xmann » Wed Mar 13, 2019 7:09 pm

I have one grandparent left, my beloved 90 year old grandmother. She lived next to us growing up and I have previous memories of her helping raise me and my brother.

When I moved to Denver 10 years ago, I only got to see her once a year. Two years ago my uncle told me she was diagnosed with Alzheimer's, but her symptoms were mild.

Last summer I made a trip to Florida just to see her for a few days. What I saw absolutely crushed me. She's happy and relatively healthy, but seeing someone who's not the grandmother I adore was almost unbearable. No recollection of me, my deceased father, her life, etc. When I left, I hugged and cried and cried and cried. I expect it to be the last time I'll see her. My uncle, who lives and cares for her told me he'd talk to her about me regularly. I try and call her about once a month, even if it's a couple minutes. I tell her how much I love her, but she knows no difference.

Having been a nurse for many years, I have taken care of countless patients and families with dementia and Alzheimer's and let me tell you, it's a different ballgame when it's someone you love.

This is an utterly cruel disease. It steals memories and loved ones from their families. I f'ing hate it. I tip my hate to you for taking care of your in laws. I'm a nurse and I just don't know if I could do it.


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Holman
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Re: Living with a Loved One's Dementia

Post by Holman » Wed Mar 13, 2019 8:35 pm

Unagi wrote:
Wed Mar 13, 2019 6:53 pm
Holman wrote:
Wed Mar 13, 2019 5:32 pm
Any advice? Bathroom hacks?
Sounds like he would perhaps appreciate a toilet with a built in bidet. Seriously.
Yes! We're talking to our plumber about that.
Much prefer my Nazis Nuremberged.

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Re: Living with a Loved One's Dementia

Post by Holman » Wed Mar 13, 2019 8:39 pm

em2nought wrote:
Wed Mar 13, 2019 6:44 pm
I would caution you about using disposable wet wipes because THEY AREN'T. You're likely to end up with a plumber having to snake your pipes at the very least. If there's that much toilet paper going down the chute I'd even think about getting some of the septic safe TP.
Yep. We've got large friendly trash baskets next to every toilet FIL uses, and we encourage him to treat them as them as the place where paper/wipes go. We change the basket bags every day.

(A few years back our basement flooded with sewage because the neighbor family was fond of flushing wipes and diapers.)
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Re: Living with a Loved One's Dementia

Post by RunningMn9 » Wed Mar 13, 2019 9:12 pm

I can’t help with bathroom tips, but am glad the dementia angle is otherwise manageable. Caring for a family member with dementia will be one of the most difficult things people go through. Not can. Will. It’s only a matter of time.

My MIL was diagnosed with cancer about a decade ago, and it had metastasized and traveled to her brain (that symptoms of that were similar to a stroke and that’s how we found out about the cancer). They removed the brain tumor, confirmed it was metastatic, but they never found the source (didn’t even know that was possible). She separately had thyroid cancer (did not metastasize). To deal with the brain tumor, they used radiation.

After treatment everything was going great, until separate blood clots in each lung. The fallout from that has been awful. An immediate physical decline (she was in her 50s I believe when this started). A few years ago, she was diagnosed with vascular dementia, as a side effect of the surgery and radiation. It has been rough. I wouldn’t wish it on anyone.
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Re: Living with a Loved One's Dementia

Post by mori » Wed Mar 13, 2019 10:10 pm

My 86 year old mother has dementia. She has been in assisted living for about 5 years and last year we had to put her in a memory care center which is crazy expensive. She was certainly aware of dementia setting in and she had some depression but it was manageable.

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Re: Living with a Loved One's Dementia

Post by Kraken » Wed Mar 13, 2019 11:21 pm

My mother died of Alzheimers in a nursing home. It was a nice one (an Eden Care facility, if you know about those) and her social security check almost covered the monthly price, so that was good. And she ended up dying in her sleep, as she had always hoped she would, so that was good too. Her mind was long gone by the time her body stopped, so I suppose that was good-ish. But those were the only good things about it. Dementia is a sad, sad end.

I couldn't take on the burden that you're doing, and I salute you for it.

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Re: Living with a Loved One's Dementia

Post by Daehawk » Thu Mar 14, 2019 12:03 am

Reading this thread reminds of all me and my wife went through in ours lives. It also brings home the fact that Im now alone and I have no idea what would happen to me in a case like this...or many others.
https://www.gofundme.com/please-help-di ... -wife-died ....Help for me to take care of stuff . Wife died Jan 3 2019 after 31 years. My soulmate.
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Re: Living with a Loved One's Dementia

Post by morlac » Thu Mar 14, 2019 11:04 am

rittchard wrote:
Wed Mar 13, 2019 6:27 pm
Thanks for sharing your story. I hope you can provide periodic updates to hopefully help some of us learn from your experience.

I'm currently seeing my mom (82) at the early stages of dementia, and it has been disheartening. Similar to what you mentioned, her short term memory is getting worse and worse, but her longer term memory is mostly intact. She tends to get confused much more so than in the past as well. It seems to have deteriorated fairly rapidly the last year or so, which is really quite scary.
The more serious issue, usually, isn't memory but emotion. It's often said that with dementia the sufferer is aware at some level that something is very wrong, but they are continually frustrated and/or frightened by their loss of capacity.
This is where we are at now, and she has vocalized it, i.e. she knows it's happening, and I think that causes a lot of fear and depression. My dad says she often doesn't want to get up in the morning, she'll just kind of stay in bed and do nothing. She complains that she is dizzy every morning but my dad thinks it's more because she's just depressed. She essentially has no hobbies (aside from watching basketball interestingly enough), so I honestly don't know how she gets through the days. Unfortunately my parents are not the type that would seek help for mental or emotional problems.

Her other biggest "issue" at the moment, though, is with eating. She was always kind of picky to begin with (favoring almost 100% exclusively "real" non-Americanized Chinese food), but now the pickiness has taken on a life of its own. Anywhere we take her, she'll complain about the food and end up not eating much. Even places she used to love, she'll now find issue with. I remember my grandmother (her mom) having similar, almost paranoid, reactions that people were trying to starve her, and now I'm wondering if it's a similar phenomena. My dad is debating moving to a senior community that's closer to a wider variety of Chinese restaurants. The problem with that is it would take them further from me, and she also insists she has to see me often enough (multiple times a week preferably).

Anyway, we are considering various options. Part of me thinks it's inevitable they will need assisted care, so we might as well just start looking for something suitable now. Originally I thought we could hold out in our present situation (we live in the same condo complex) at least until my nephew (sister's kid) graduates from high school in 4 years, but now I don't know if that's feasible any more.


Bolded last part. It is 100% inevitable you will need assisted care at some point. And probably quicker than you expect. The biggest tip I can give is to have an unlimited supply of patience. Most of who they were will be gone at the end, there will be glimpses of their old self here and there but they will mostly be gone. Anticipate and accept this, it is heartbreaking.

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Re: Living with a Loved One's Dementia

Post by Scuzz » Thu Mar 14, 2019 2:55 pm

All I can say is I respect you for taking care of them yourselves. My father went from living on his own, with some slight dementia (but mostly short term memory loss), to breaking his hip and being gone in 2 months. We were told that a very large percentage of seniors with dementia will be dead in 6 months after breaking a hip. My FIL currently lives about 5 minutes from us in an apartment we arranged for him and he has some problems that are often worsened by his problems with short term memory. Did he take his pills or not?

I am not looking forward to old age.

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Re: Living with a Loved One's Dementia

Post by Isgrimnur » Thu Mar 14, 2019 2:59 pm

Scuzz wrote:
Thu Mar 14, 2019 2:55 pm
Did he take his pills or not?
Pill bottle timer caps
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Re: Living with a Loved One's Dementia

Post by Scuzz » Thu Mar 14, 2019 4:48 pm

Isgrimnur wrote:
Thu Mar 14, 2019 2:59 pm
Scuzz wrote:
Thu Mar 14, 2019 2:55 pm
Did he take his pills or not?
Pill bottle timer caps
We have tried several things and that is something we have thought about.

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Re: Living with a Loved One's Dementia

Post by Smoove_B » Thu Mar 14, 2019 9:58 pm

I can only reiterate support of what others have shared. My grandmother ultimately died from complications associated with a brain tumor and her final months were spent in a full-time care unit. She had absolutely no idea who she was or what was happening and not surprisingly she was constantly agitated. It's been close to 20 years and it still haunts me to remember her like that.

I have a friend with parents that are in their 80s and his mother was slipping into dementia. They tried what you are doing now, but ultimately I don't think there were enough able-bodied adults to assist with the full-time care it required. She was also ultimately admitted to a care unit and died about a year ago.

My only impression from all of this is that there's likely going to be a point at which you will collectively decide you can't handle it. Whatever that line is will be different for everyone, but I don't think there's any shame in recognition you are collectively incapable of offering what is necessary.

Best wishes for you and yours.

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Re: Living with a Loved One's Dementia

Post by dbt1949 » Thu Mar 14, 2019 10:09 pm

We need the suicide center like they had in Soylent Green.
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Re: Living with a Loved One's Dementia

Post by em2nought » Fri Mar 15, 2019 8:05 am

Holman wrote:
Wed Mar 13, 2019 8:35 pm
Unagi wrote:
Wed Mar 13, 2019 6:53 pm
Holman wrote:
Wed Mar 13, 2019 5:32 pm
Any advice? Bathroom hacks?
Sounds like he would perhaps appreciate a toilet with a built in bidet. Seriously.
Yes! We're talking to our plumber about that.
You might try this add on bidet first to see if it's viable before spending the money on the plumber.
https://www.amazon.com/SlimEdge-Attachm ... 19V521F5SK
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Re: Living with a Loved One's Dementia

Post by Grifman » Wed Mar 20, 2019 1:38 pm

Unagi wrote:
Wed Mar 13, 2019 6:53 pm
Holman wrote:
Wed Mar 13, 2019 5:32 pm
Any advice? Bathroom hacks?
Sounds like he would perhaps appreciate a toilet with a built in bidet. Seriously.
Even if they can manage it now, soon enough, they won't be able to manage that.

FYI, my cousin never lived with me, but I was legal guardian for him for around 5 years as he descended into the stupor that is Alzheimers. Feel from to send me a PM and I would be glad to discuss my mistakes and learnings with you or anyone else that needs advice that comes from experience.
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