Dementia

TLB

Just chillin'
Lifetime Member
Jan 6, 2015
14,040
26,202
I don't remember posting this, or why.....

= = = ====

On a more serious note, how many of you have dealt with a family member entering dementia or living with it? How have you prepared for it yourself, if you expect it will come for you?

I ask based on two factors. One, it runs in my family - those that have been long lived (past 80s, into 90's) have all ended with severe dementia. I'm certain I'll get it eventually (I'm somewhat brain fogged as it is sometimes*), but the silver lining is maybe diabetes takes me out beforehand. The other factor, is that my MIL (78yo) recently fell while visiting and hit her head on the concrete as a result. She's been 1w in hospital, 1.5w in rehab, and upon release we were informed she cannot drive, cannot live alone, and aside from recovering from the head injury she has early dementia. We know she doesn't want a nursing home, and we want her with us while we can handle it (we may not recognize when that line is crossed). We're on 2mo now of her with us, wife and I take turns sleeping in the room outside nana's room and my wife takes care of her all day (quit her day job for now). I work from home mostly and pitch in where I can, and my BIL comes from NJ periodically to spend a week and take shifts, sort out the medical bills and help us with legal issues (he has POAtty but is fully aligned with us).

Nana, of course, thinks she's fine. States repeatedly she is going home soon - to the point of causing issues at rehab, and emotionally jabbing her daughter (my wife) frequently. It's a situation where she is aware enough to know she doesn't like the situation, but not enough to grasp WHY this is the situation.

EDIT: *my growing fog is most likely a lack of sleep on my part. The nights I have nana duty we're up about every 2h to pee (one of us, if not both). And, somehow, on my shifts is when everything goes to **** = last time she was up every 10min for an hour trying to pee but not (dehydration, which combined with a UTI she didn't acknowledge, sent her electrolytes out of balance and we entered full blown dislocation from reality for the day and ended in the ER).


Any of ya'll dealt with this? Any tips or suggestions?
 
Last edited:

Nalt

Well-Known Member
Jul 23, 2020
6,804
18,629
Dementia and Cancer are both horrible, horrible diseases IMO. While I haven't had anyone that I had to care fore that had dementia I have with cancer. Currently my MIL has cancer that is incurable. This past week she was to have a stent inserted in her kidney but the surgeon wouldn't because her heart rate was >150 bpm. Off to the E.R. where she was admitted for two days. She is home now but she still isn't sure what to expect next. Fortunately my wife is doing an outstanding job of caring for her, taking her to appointments, cooking, cleaning, etc.

I'm very sorry that you are having to deal with the dementia with your MIL. Prayers and best wishes for her. I will say though, just be glad that your MIL doesn't have vascular dementia. That changes the patient from a very sweet, easy going individual to someone who is vile, vulgar, and almost impossible to be around.
 

CDGator

Not Seedy
Lifetime Member
Jul 24, 2020
15,961
44,277
Yes and you have my sympathies. This is a difficult journey.

I moved my mom up from FL so I could care for her. Since we had two young kids at the time I had to put up some boundaries and couldn’t have her live with us. I visited her every day at assisted living and then the nursing home. She had Lewy Body Dementia.

Seedy is one of 8 kids and they took rotations caring for his parents. Towards the end they also had a service to come in to supplement. It is difficult on the caregivers so please take care of yourself too. Not an easy experience from a physical and emotional standpoint.

Don’t feel guilty if you do have to place her in an assisted living facility but be sure to constantly check on her. Keep her in the house with you as long as you can though would be my advice.
 

Gator515151

Well-Known Member
2018 Pick 'Em Champ
Aug 16, 2018
1,948
5,685
I remember my brother and I laughing at my grandfather when he had a cigarette burning in the ash tray another one in his hand and sat there telling us he quit smoking 20 years ago. In hind sight guess it wasn't so funny.

In another incident my father who was the most mechanically inclined person I ever met had to ask me if the red cable goes to positive or negative. He had tears in his eyes as he said "I used to know things like that". By that time I knew what dementia was.
 

Detroitgator

Well-Known Member
Lifetime Member
Jul 15, 2014
28,438
47,228
Selfishly, I'm glad I'll never have to deal with dementia in my parents/in-laws... cancer got 'em all a lonnnnnnng time ago! :sohappy:;)
 

CGgater

Gainesville Native
Lifetime Member
Jul 30, 2014
10,131
16,377
My mom had Alzheimers before she passed and my dad, gifted with supernatural patience, was frustrated at times. I only saw it during a few visits and dad would vent a little on the phone.

You've already described the difficult challenge - reasoning with someone who doesn't know they lost their grip on reality. Often, the care giver has to take the most abuse - everything is their fault. Mom got frustrated as she began hallucinating what she saw and conversations she had, didn't believe dad could be trusted... Later, she seemed to become more pleasant and at ease.

Sorry to be a bit gloomy. I hope your MIL ends up a bit more "just happy to be here," but I don't know what your odds are.

I wish you and your family the very best!
 

MJMGator

Founding Member
Slightly amused
Lifetime Member
Jun 10, 2014
20,137
41,352
Founding Member
From what I’ve seen, they’re better off in a home. As it progresses, they become violent. I assume it’s simply frustration from not knowing what the hell’s going on or who anyone is.
Wouldn’t wish it on anyone.
 

TLB

Just chillin'
Lifetime Member
Jan 6, 2015
14,040
26,202
we had two young kids at the time I had to put up some boundaries

My BIL has a live in girlfriend, no kids. We have a son (just turned 12) and a daughter (turns 15 next week). We're trying to ensure they have a 'normal' (transient definition, given COVID) teenage time and are keeping them from any of the burden while we try to support their 'normal' activities of sports and such as best we can. It's frustrating the wife, in that we can't BOTH go to events, one has to stay home with nana unless we can bring her, which is always a gamble. That said, both kids are creeped out being around her, it's not the nana they knew. Beyond that, we're soon going to be approaching some boundaries as we've treated nana as a guest but have been letting her dictate our household too much (ie requiring kids to attend dinner even if they aren't eating).

Don’t feel guilty if you do have to place her in an assisted living facility but be sure to constantly check on her. Keep her in the house with you as long as you can though would be my advice.

Yeah, thanks for the reminder and it's been my talking point since the beginning. We HAVE to do everything we can, just to ensure our peace of mind that we did all we could. My fear is if we go beyond what we should/could do and end up damaging our family in some way (ie, wife and/or I burning out). My view is, her choices are facility or us, and so long as we can support her and she gets something from being with us (attending kids activities) then we'll do it. If she gets too disconnected to get anything from it and it is just a burden for burden's sake, then we'll have a serious talk.


I hope your MIL ends up a bit more "just happy to be here," but I don't know what your odds are.

Speaking of 'having a serious talk' she insists on having a call with her Primary Care Physician (PCP) from NJ that hasn't seen her in months and knows nothing of recent events. I'm for it, if only to close out that 'escape hatch' she is looking for. The wife, BIL, and myself intend to have the serious talk with nana this week about facility vs family as the only choices, and we'll see where her PCP fits into the conversation. Nana says she'll follow doctor orders, though all the docs here in PA with the situation are diagnosing and recommending where we are now. She's looking for the old PCP to say she can go home, but that isn't a possibility. Either way, later this week will be something of a come to Jesus moment with her (their whole family is Jewish, lol).

She is the definition of a 'tough old bird/broad' in that she was never ill, still strong (physical and willful) as she ever has been. She took care of her brother (born retarded) most of her life until he passed, and took care of her husband from his heart attacks (40s) until he died (70s), controlling all aspects of their lives. No time for her to breakdown. In the last 12mo she has had spinal surgery, a heart valve replaced, been in a car crash (we strongly suspect she was at fault), and now fallen down on concrete and the early dementia diagnosis. She planned to work until 80, and has been pissed (blaming my wife primarily, but sometimes my BIL, and sometimes work) for her 'forced retirement' (ignorant that it takes her 3h to get up and dressed, and she needs to rest every hour or so). Point is, without someone to take care of, her body is finally breaking down, but her mind is going faster and doesn't recognize the situation. I think we've got her convinced she isn't driving anymore, and she's accepted retirement begrudgingly, now we face the 'where to live' and '24/7 supervision' aspects of her shrinking world that she has to accept.

She's always been tough, and continues to be willful. I'm her favorite, so I got that going for me.
 

TLB

Just chillin'
Lifetime Member
Jan 6, 2015
14,040
26,202
From what I’ve seen, they’re better off in a home. As it progresses, they become violent. I assume it’s simply frustration from not knowing what the hell’s going on or who anyone is.
Wouldn’t wish it on anyone.

Yeah, that's what I saw too during hospital and rehab. A lot of frustration. She's calmed a bit as she's regained some cognitive ability. Initially she was asking what time it was, and if it was day or night - in rooms with windows having full view of outside for day-nite discerning. I think that was the brain injury, as she's recovered from that. But she still shows a lot of disconnected thought processes - riding in the car asking 'alexa call this number', wife says there is no alexa in the car, 'oh, we have google then. Google call this number'. I could bleed out a lot of my frustration here with different situations, but overall we are ALL (the three of us caretakers) doing mostly pretty well handling it and trading off when we need a break. But to your point, I can definitely see where she's struggling to grasp situations and it leads to a lot of frustration. She's a tough woman, but has always been well mannered and respectful (if somewhat socially oblivious like raising socially inappropriate topics at the wrong time) - but never mean or angry. The anger is growing, and only gets out periodically, but I can see it getting worse when she is confronted with living under supervision, and getting worse later when she starts losing more of a grasp of situations.
 

I Have No Friends :(

Founding Member
Gator Bait! It's only racist to dumb Fuchs
Lifetime Member
Jun 14, 2014
3,971
12,827
Founding Member
Strongly encourage looking into a full-time nursing care home for her. Visit daily and make sure to build a rapport with the people who take care of her on a daily basis. While you may deal with feelings of guilt going down this road, the last thing you want to do is destroy your own family in the process.

Another option would be to hire an in-house caretaker for her. This way she's still a part of your daily lives, but you and your wife (and BIL) aren't burning yourselves out watching her on a 24/7 basis. This also allows you and your wife to attend your children's events together; moments in time you'll never get back. Either way, trying to go it alone is in my opinion the worst option you could choose.

You have my sincerest sympathies. I've watched more people succumb to dementia and Alzheimer's than I care to remember. In almost every case, whichever family had the burden of caring for the ill regretted not getting their loved one into a home sooner. Something to consider perhaps.
 

MJMGator

Founding Member
Slightly amused
Lifetime Member
Jun 10, 2014
20,137
41,352
Founding Member
Yeah, that's what I saw too during hospital and rehab. A lot of frustration. She's calmed a bit as she's regained some cognitive ability. Initially she was asking what time it was, and if it was day or night - in rooms with windows having full view of outside for day-nite discerning. I think that was the brain injury, as she's recovered from that. But she still shows a lot of disconnected thought processes - riding in the car asking 'alexa call this number', wife says there is no alexa in the car, 'oh, we have google then. Google call this number'. I could bleed out a lot of my frustration here with different situations, but overall we are ALL (the three of us caretakers) doing mostly pretty well handling it and trading off when we need a break. But to your point, I can definitely see where she's struggling to grasp situations and it leads to a lot of frustration. She's a tough woman, but has always been well mannered and respectful (if somewhat socially oblivious like raising socially inappropriate topics at the wrong time) - but never mean or angry. The anger is growing, and only gets out periodically, but I can see it getting worse when she is confronted with living under supervision, and getting worse later when she starts losing more of a grasp of situations.
My grandmother had Alzheimer’s for about a decade. Watched it ruin the lives of my aunt and uncle that lived with her in her home until she finally had to go into a nursing home. I never visited her in that home. I wanted to remember her how I had always known her...not what she had deteriorated to.
As an outsider, my biggest concern is for you and your family. That kind of stress has gotta be unbelievable.
 

Swamp Donkey

Founding Member
7-14 vs P5 Fire Stricklin First
Lifetime Member
Jun 9, 2014
78,399
110,703
Founding Member
I thought this was a Biden thread.

The truth is we are all dealing with dementia.
 

CDGator

Not Seedy
Lifetime Member
Jul 24, 2020
15,961
44,277
Strongly encourage looking into a full-time nursing care home for her. Visit daily and make sure to build a rapport with the people who take care of her on a daily basis. While you may deal with feelings of guilt going down this road, the last thing you want to do is destroy your own family in the process.

Another option would be to hire an in-house caretaker for her. This way she's still a part of your daily lives, but you and your wife (and BIL) aren't burning yourselves out watching her on a 24/7 basis. This also allows you and your wife to attend your children's events together; moments in time you'll never get back. Either way, trying to go it alone is in my opinion the worst option you could choose.

You have my sincerest sympathies. I've watched more people succumb to dementia and Alzheimer's than I care to remember. In almost every case, whichever family had the burden of caring for the ill regretted not getting their loved one into a home sooner. Something to consider perhaps.

This ^^ Everything your non-friend said.
 

alcoholica

Founding Member
I'm what Willis was talking about
Lifetime Member
Jun 11, 2014
16,754
20,381
Founding Member
I thought this was a Biden thread.

The truth is we are all dealing with dementia.

I expected this to be a thread about uncle joe
I think it’s pretty obvious that Biden has some plastic surgery done since he was VP. Anyone else think that his going under anesthesia triggered the onset of dementia?
 

Users who are viewing this thread

Help Users

You haven't joined any rooms.

    Birthdays

    Members online

    Forum statistics

    Threads
    31,684
    Messages
    1,621,025
    Members
    1,643
    Latest member
    A2xGator