Dementia is cruel

[unclebilly]

I had to fly to my dads place with a couple days notice to take him to a medical appointment. I spent 2 days with him.

It’s not good. Really not good. He’s stubborn.

The medical people keep telling me that he has the right to live at risk.

I hate this but in 6 months or less, I’m hoping he will be in a better place (not dead, a place where he is getting the care he needs whether he wants it or not).

[flatbutt]

That's rough Billy. My Mom was furious when we put her into assisted living but we had no other option. She needed 24/7 care. The place was not good but all we could afford.

If he continues to refuse it may take an accident to get the care he needs. Sorry brother.

[WPOZZZ]

I'm sorry to hear this Billy.

My grandmother had dementia and it was the most cruel disease ever. She only went up to the 6th grade, but was a smart woman. She was good with money and made good use of her money.

My friend's dad, who was also a business mentor to me, was a brilliant man. He was well educated and was a whiz at investments. We would go drinking with our bunch of businesmen a couple times a week. He stopped coming out about 7 years ago when he got shingles. He came out about a year later and was not the same. Before, he was a buff guy, full of confidence, brilliant, with a cocky strut. Now, he was hunched over and tentative. He didn't even remember that bars closed at 2 am. Something was definitely wrong. Another year later, I was talking to one of his sons and was told he had dementia with Lewy bodies. That is the absolute worst dementia to have and about 6 months later, he was placed in a care facility.

Like my grandmother, he had good care, but it was so cruel to see once brilliant people unable to recognize you, or even put together complete sentences. My mother had mild dementia and I took care of her until the end. It was difficult for me, but mom did not want to go to a home and I did my best. This will be a big life change, but could you look after your dad at your home?

[pwd72s]

The thread title is an understatement. No advice, just a ton of sympathy.

[oldE]

Oh geez, Billy. I'm so sorry to hear this.
The " Right to live at risk" is scary as hell for those of us who have to try to keep our loved ones safe..
Every time the phone rings can trigger anxiety.
Can you get him to live closer to his grand kids?

Best
Les

[wdfifteen]

Sorry to hear this. Dementia is indeed a cruel disease, probably more for the family than for the afflicted.

Originally Posted by oldE

The " Right to live at risk" is scary as hell for those of us who have to try to keep our loved ones safe..

Amen. I suppose if someone wants to skip meds or not eat they have that right. For us it was more a matter of the risk my Dad was to others, and I don't think that is a "right."

We had to sneak all the guns out of the house. My mom was at most risk, but she was little help. Long story there...

Getting Dad's driver's license taken away took months. The police caught him and brought him home a dozen times, but would not revoke his license. I would get phone calls from police departments 30 miles away. Dad was lost again, come and get him.

We tried to keep him off the road, but though people with dementia are forgetful, they aren't stupid.
We hid the keys. He would find them.
I would disconnect the battery. He reconnected it.
I finally put a completely shot battery in his van and took his battery charger home with me.

[jcommin]

It is a situation that doesn't get better.

My mom had dementia and was in assisted living for 4 years from 1994 to 1998. So I feel for what you are going through. I had trouble coping with this especially after she passed on. I lost her twice: once when she ceased to recognize me and when she finally passed. I felt I had no closure.

At times, I still have trouble with this as does my brother.

Be strong and do your best.

[astrochex]

We are going through this now with my mom.

After my father died in November, my sister and brother took turns staying at the house because she could not be left alone. In January my sister took her to live with her and my brother-in-law because the prior arrangement was unsustainable. It was took difficult for my sister because of my moms dementia with the anger and mood swings. Mom is now at an assisted living and memory care facility not far from my sister. They do not have phones in the rooms. She was at my sisters recently so mom was facetiming with us kids. It was great yet a little sad to talk to her. My mom still wants to go back to the home she lived in for 60 years, that was just sold.

I think cruel is the perfect characterization of the disease, the person reliving the same pain over and over again.

My best to all who has to or had to deal with dementia in loved ones.

[wdfifteen]

Originally Posted by jcommin

It is a situation that doesn't get better.

My mom had dementia and was in assisted living for 4 years from 1994 to 1998. So I feel for what you are going through. I had trouble coping with this especially after she passed on. I lost her twice: once when she ceased to recognize me and when she finally passed. I felt I had no closure.

At times, I still have trouble with this as does my brother.

Be strong and do your best.

I'm sorry Jim. We went through something similar.

Looking back, the situation eventually got better for us.
When Dad was in the early, agitated stage he was angry, paranoid, and a danger to people he decided he didn't like. We were heartbroken that this was happening to him and scared, worried, and afraid all at the same time.
As his mental capacity faded, he became more docile. At that point we were just sad, and it was a relief.

[billybek]

When my parents moved into assisted living due to my dad's Alzheimer's like symptoms, it was a very hard for them to leave the little bungalow they had lived in for about 60 years.

The very last time I really "saw" my dad was when I was leaving to fly home. He asked me where I was going and I think he was implying why are you not taking me home? It was so sad.

My dad was a very smart man. It was heartbreaking to see how someone loses their ability to perform even the most simple tasks that was part of their everyday life.

Sorry to hear of the continuing problems with your dad, Scott. As someone already had mentioned, a trip to the hospital for an accident will trigger a placement in a facility, any facility that has an opening. Probably you and your dad will be unhappy with where he will be placed.

[unclebilly]

We’ve tried to move him closer to us unsuccessfully. He got in his car and drove home with no license.

The way this has to play out is for him to get placed on long term care, then we will move him closer. There is just no other way when they won’t cooperate.

I took him for a long drive yesterday and another on Tuesday after his medical appointment. We drove past a couple houses he built and he didn’t even remember them or know where we were.

He called me at 12:30 am last night to see how I was doing. He couldn’t believe how quickly I got home (I flew).

It’s painful to see him like this. And he has no idea.

[rfuerst911sc]

Moved my mother in law into assisted living facility near us two years ago. The final decision maker was when she lost sight in one eye . She was 88 years old and living alone in her home . Was still driving up to that point .

Sold her house and moved her to a facility 10 minutes away from us . Now 90 years old her short term memory is very poor . The facility is basically split in half . One half assisted living the other half memory care .

I can see the time coming when a move to the memory care side will be needed . It is sad but if you live long enough it is going to be part of life . This woman always treated me with respect and love . You couldn't ask for a better MIL .

[GH85Carrera]

It is indeed a horrible thing. My FIL was a man that refused to have anyone come to the house to do work on his things. He dug his own water well. He moved a load supporting wall in the living room to open up the kitchen. He replaced the entire central AC and furnace unit. He rebuilt the engine in his diesel truck. He taught me what I know about automotive AC and I still use his refrigerant recovery setup to remove and store the old refrigerant in my cars before doing AC work.

Then his brain just started shutting down. He turned into a adult size infant. My MIL kept him at home for as long as she could physically do it. When she moved him to a nursing home, she had her attorney provide the nursing home a very clear DNR, and he lasted another 6 months as less than a one day old infant. It was just horrible.

[unclebilly]

Originally Posted by GH85Carrera

It is indeed a horrible thing. My FIL was a man that refused to have anyone come to the house to do work on his things. He dug his own water well. He moved a load supporting wall in the living room to open up the kitchen. He replaced the entire central AC and furnace unit. He rebuilt the engine in his diesel truck. He taught me what I know about automotive AC and I still use his refrigerant recovery setup to remove and store the old refrigerant in my cars before doing AC work.

Then his brain just started shutting down.

This sounds very familiar. Dad won’t let anyone apart from me do anything on the house, even cleaning. He tries to micromanage everything to the point that my brother can’t deal with it.

The place needs work and a good top to bottom clean that just can’t happen when he’s there. He had a cleaner for years that he ran off (or she quit because of his behaviour). Now he has nobody and I’m struggling to find anyone.

It’s a disaster made worse by a health care system that enables this sort of BS.

[jhynesrockmtn]

My Mom has been on a steady decline for years. She'll be 87 in June. Her quality of life sucks. She's in a great memory care unit but of course doesn't know why she lives there. Her short term memory is so bad I can take her to church and an hour later she doesn't remember going. She can't track a conversation for more than a minute, constantly asking the same questions over and over. She really doesn't remember anyone but me and my sister. Her grandkids, our spouses, etc. are a fuzzy notion.

She is getting increasingly agitated, demanding to move, buy a small house, etc. She can't live by herself and in home care is not feasible. She can't live with either of us because we all still work at least a few days/week.

Drugs have gotten so good at keeping the physical body going, with the brain left behind, I fear we are creating a generation of elder zombie types who can't function or keep themselves fed/safe. Her primary care doc agrees.

[cstreit]

Sorry to hear this.

I think the more independent we were in our younger years - and sounds like your Dad was one of them - the harder time we have turning control over to someone else. After spending your whole life with the "I can do it myself" approach - it can't be easy to make that change.

[911 Rod]

Sorry about your dad Unc.
Everyone's stories make me very sad.

[herr_oberst]

Sorry you've been dealt this hand, unclebilly. I'm sure it's not easy for anyone in your tribe, especially your dad. I have no advice, but I just want to say hang on and remember the best times.

Seeing this thread and the life expectancy thread at the same time, well, obviously we may have an idea of how long we might live but there's no guarantees as to what those years look like.

Best to you and your family and anyone who's finding themselves in similar circumstances.

[matthewb0051]

This medical condition is the worst thing ever. I watched my mother-in-law go from a vibrant, loving, adult, to a regressed child that had strange memories and didn't know the people around her. She even would say that my FIL beat her, pretty sure she said I did as well.

She died in a nursing home in the summer of 2020, height of the "pandemic". Luckily, the people there had a heart and let my FIL be present with her to the end.

[3rd_gear_Ted]

My FIL was a 15th Army Air Corp WW2 POW @ Stalag # 6 for the last year of the war and he survived three wives, when his memory and cognition started to go wife #3 shuffled him out to a care home, some days he would think he was back in the prison camp. Having him look @ you and think your a prison guard was the worst experience of my life. My own parents passing was nothing compared to the horror of that situation.
Now 13 years later:
On what would of been his 100th birthday his ashes that I pried from wife#3 are going to be buried with full military honors U.S. Army style this May in Boulder City NV.
I can finally start to feel some closure, hang in the there Mr. Billy.