What is it like to live with dementia?

[seadoug]

My grandmother had Alzheimer's. I remember staying overnight at her house when I was a kid. One of the primary symptoms seems to be going back to childhood. She had multiple dolls that she kept. I had a friend with an aunt who did the same thing.
Apparently, my grandfather was quite the carouser when they were young because she used to put chairs against the doors when we went to bed and tell us she would never let him in, then she would remove them in the wee hours. She used to leave the house in her slip to "walk uptown". It was so tragic to see.

I had another friend with a father who had Alzheimer's and agitation is also a symptom. He used to get angry with her for no obvious reason. He said there were "little people" stealing from him.

It is an awful disease.

 

[Boon54]

At 92, I am fortunate not to have dementia nor Alzheimer's. But, make no mistake, the brain is tricky and can turn off in a New York minute.

Forgetfulness is something entirely different. We all suffer that at different times in our lives. Our brains go on overload and we have what is known as brain freeze for a very short period. Not to be confused with the above mentioned conditions.

Thank you. Sure hope it's so.

 

[Boon54]

My grandmother had Alzheimer's. I remember staying overnight at her house when I was a kid. One of the primary symptoms seems to be going back to childhood. She had multiple dolls that she kept. I had a friend with an aunt who did the same thing.
Apparently, my grandfather was quite the carouser when they were young because she used to put chairs against the doors when we went to bed and tell us she would never let him in, then she would remove them in the wee hours. She used to leave the house in her slip to "walk uptown". It was so tragic to see.

I had another friend with a father who had Alzheimer's and agitation is also a symptom. He used to get angry with her for no obvious reason. He said there were "little people" stealing from him.

It is an awful disease.

Yes. But a possibility we need to face as we grow older. Apparently, the prevalence of dementia increases significantly with age
- About 5-8% of people aged 65+ have dementia
- This rises to approximately 15-20% of people aged 75-84
- For those 85 and older, the prevalence increases to roughly 30-50%.
I hope I'm in the 50-70% who don't,

 

[Twostep]

Yes. But a possibility we need to face as we grow older. Apparently, the prevalence of dementia increases significantly with age
- About 5-8% of people aged 65+ have dementia
- This rises to approximately 15-20% of people aged 75-84
- For those 85 and older, the prevalence increases to roughly 30-50%.
I hope I'm in the 50-70% who don't,

You can worry yourself silly over what if but you have no say so about it.

 

[Amanda76]

I'm now 71 and a little concerned with dementia. I'm still working but finding myself getting a bit forgetful and often forgetting what I wanted to do when I get there. My uncle lived to 100 but had dementia in his final decades (I think from around 80).

My brother-in-law's wife developed Dementia in her mid to late 70s. She could not drive back home from nearby shopping center because of no clue to 'how to get home' which was her very first sign. About three months into it, she could stay home, but she started wondering around in the middle of night. My brother-in-law had no choice but placed her into Nursing Home.
Nursing home for dementia is expensive, her pension along with her SS was taken away. Not only that my brother-in-law's VA also was taken away. Luckily, his pension was intact (his name only), but their home(co-owner) although he could live in until his death.
She stayed in the nursing home for about 7 years until her passing at age 83 due to pneumonia.

 

[Boon54]

My brother-in-law's wife developed Dementia in her mid to late 70s. She could not drive back home from nearby shopping center because of no clue to 'how to get home' which was her very first sign. About three months into it, she could stay home, but she started wondering around in the middle of night. My brother-in-law had no choice but placed her into Nursing Home.
Nursing home for dementia is expensive, her pension along with her SS was taken away. Not only that my brother-in-law's VA also was taken away. Luckily, his pension was intact (his name only), but their home(co-owner) although he could live in until his death.
She stayed in the nursing home for about 7 years until her passing at age 83 due to pneumonia.

What do you mean, "taken away"? I'm thinking it means that it's just that expensive, not that you were scammed. Were there ways, like buying insurance, that we can cover ourselves? It's tragic that after so many years of contributing to society, our final years are filled with fraught.

 

[Boon54]

My brother-in-law's wife developed Dementia in her mid to late 70s. She could not drive back home from nearby shopping center because of no clue to 'how to get home' which was her very first sign. About three months into it, she could stay home, but she started wondering around in the middle of night. My brother-in-law had no choice but placed her into Nursing Home.
Nursing home for dementia is expensive, her pension along with her SS was taken away. Not only that my brother-in-law's VA also was taken away. Luckily, his pension was intact (his name only), but their home(co-owner) although he could live in until his death.
She stayed in the nursing home for about 7 years until her passing at age 83 due to pneumonia.

Also, was it so sudden? Or were there signs before that?

 

[Amanda76]

What do you mean, "taken away"? I'm thinking it means that it's just that expensive, not that you were scammed. Were there ways, like buying insurance, that we can cover ourselves? It's tragic that after so many years of contributing to society, our final years are filled with fraught.

It means that NursingHome for dementia made a charge/cost for their care to her condition. Practically, it's money for her care. It's not scam. Actually, one of reputable nursing homes.

 

[Amanda76]

Also, was it so sudden? Or were there signs before that?

Not sudden, she was forgetful prior to this.

 

[papa tiger]

As we age we get concerned about many things we took for granted when we were younger.

If one decides he wants something, needs to pick it up, Say his Glasses say to yourself 3 times.
"Go Get my Sunglasses off the Desk by the puter." Take what you plan to do seriously. Say again.

Don't be distracted. Go get the Glasses first. Then say get a glass of water, repeat. Use your brain.
Don't get distracted by other stuff that just in the way of your needs.

The example of why is, when you were young and in school you repeatedly repeated stuff to remember.
The mind is constantly changing. Deep Sleep! Aging laze's us.

 

[Boon54]

Not sudden, she was forgetful prior to this.

Yes, I am looking for these early signs. Hopefully, I can do something early about it. Anything.

 

[Boon54]

As we age we get concerned about many things we took for granted when we were younger.

If one decides he wants something, needs to pick it up, Say his Glasses say to yourself 3 times.
"Go Get my Sunglasses off the Desk by the puter." Take what you plan to do seriously. Say again.

Don't be distracted. Go get the Glasses first. Then say get a glass of water, repeat. Use your brain.
Don't get distracted by other stuff that just in the way of your needs.

The example of why is, when you were young and in school you repeatedly repeated stuff to remember.
The mind is constantly changing. Deep Sleep! Aging laze's us.

Good advice. I realised quite suddenly that as I get older, I cannot take my physical self for granted. I need to take care of it. Work at it. Not easy, eh?

 

[Boon54]

It means that NursingHome for dementia made a charge/cost for their care to her condition. Practically, it's money for her care. It's not scam. Actually, one of reputable nursing homes.

It impossible, but I do wish there are better support for us. I'm in the same camp as you, but not yet requiring that much care. Not sure I can afford it.

 

[Boon54]

You can worry yourself silly over what if but you have no say so about it.

True. But if there's something I can do about it...

Interestingly, worrying itself can make it worse. The trick is not to worry beyond doing what you can about it and accepting life as it comes.

 

[Amanda76]

It impossible, but I do wish there are better support for us. I'm in the same camp as you, but not yet requiring that much care. Not sure I can afford it.

Look for Support-group, both locally and here, Internet.

 

[Boon54]

Look for Support-group, both locally and here, Internet.

I mean financial support, lol.

 

[Amanda76]

I mean financial support, lol.

Well, it's hard to say about financial support.
In general, Nursing home is not cheap. When my late husband stayed for about one month after Cancer-surgery to recover, it was about the same charge, close to $6,000 per month as seeing housing, meals, some special exercise and etc., it's quite understandable in comparison to the hospital stay. Luckily, both Medicare and BCBS took care of all of costs. But, just one month, not 7 or 8 years' stay. My late husband told staff in Nursing home to get back home not burden financially to me, his wife. Afterwords, he passed away in his own bed
My mother-in-law on the hand, she was regarded being 'no income' just SS as she transferred her house to one of his sons prior to having Cancer. She did not need to pay any money having stayed in the Nursing home. She stayed there for about five to seven months and passed away in Nursing Home at age 85.

 

[Twostep]

What do you mean, "taken away"? I'm thinking it means that it's just that expensive, not that you were scammed. Were there ways, like buying insurance, that we can cover ourselves? It's tragic that after so many years of contributing to society, our final years are filled with fraught.

There is long-term care insurance and you will have to research its availability. Premiums as as to be expected steep. Please let SF know what you find out.
Admitting to a facility when not being able to make decisions?

 

[Twostep]

True. But if there's something I can do about it...

Interestingly, worrying itself can make it worse. The trick is not to worry beyond doing what you can about it and accepting life as it comes.

What can you do about it? Have financial resources for a good facility and your legal paperwork in order?

 

[Disgustedman]

I'm now 71 and a little concerned with dementia. I'm still working but finding myself getting a bit forgetful and often forgetting what I wanted to do when I get there. My uncle lived to 100 but had dementia in his final decades (I think from around 80).

I will appreciate your experiences with dementia, whether as a carer or as a patient. Thank you in advance.
PS: I'm not asking for medical advice but if you're a doctor, nurse or carer, feel free to share your expert advice.

Mom went Alzheimer's about 18 months before she passed. She reverted to when she was about 8-12, except when I was around. She remembered me and her youngest daughter, but not her oldest.

She never was violent, just quite and simple. We were very lucky she didn't stretch it out over a long period. I've had families tell me they were envious at the short span, instead of 20 years of slow decline.

 

[Mike]

I'm now 71 and a little concerned with dementia. I'm still working but finding myself getting a bit forgetful and often forgetting what I wanted to do when I get there. My uncle lived to 100 but had dementia in his final decades (I think from around 80).

I will appreciate your experiences with dementia, whether as a carer or as a patient. Thank you in advance.
PS: I'm not asking for medical advice but if you're a doctor, nurse or carer, feel free to share your expert advice.

I wouldn't worry about forgetting things, I have been doing so
for years, loose the thread of what I am speaking about, forget
why I went into the kitchen, or any room when I forget, but I am
still bright, I can do complicated projects, I can write fairly well,
without any spell checker prompting me.

All of the above happens as we age, I know several people who
suffer from this, if you worry about it, you might cause a lot more
damage than if you accept and that you are not getting demented!

Mike.

 

[Boon54]

Well, it's hard to say about financial support.
In general, Nursing home is not cheap. When my late husband stayed for about one month after Cancer-surgery to recover, it was about the same charge, close to $6,000 per month as seeing housing, meals, some special exercise and etc., it's quite understandable in comparison to the hospital stay. Luckily, both Medicare and BCBS took care of all of costs. But, just one month, not 7 or 8 years' stay. My late husband told staff in Nursing home to get back home not burden financially to me, his wife. Afterwords, he passed away in his own bed
My mother-in-law on the hand, she was regarded being 'no income' just SS as she transferred her house to one of his sons prior to having Cancer. She did not need to pay any money having stayed in the Nursing home. She stayed there for about five to seven months and passed away in Nursing Home at age 85.

Thank you for this detailed reply. I live in Australia and we have both Medicare and private insurance. I'm happy to live within Australia's welfare system. I don't need much anyway and don't expect people to care for me the way my family does. I think I'm lucky enough already not to have to live in the slums like so many poor people do.

I don't want my family to sacrifice their hard earned money to give me a life I may not be able to appreciate. When my time comes, I'm happy to go. I've lived a reasonably good life for over 70 years and all I want to do is to do my best to live as well as I can until I go. I don't expect anything from the world and I can see that many people have life a lot worse than me. I just want to know what I can do for myself.

So, I really appreciate all this you're telling me. I probably won't be able to afford it. Whatever is good enough for the rest of Australia who also can't afford it is good enough for me. I'm not in the lower income levels and whatever we can afford at that level is good enough. I'm very thankful I'm not living in a country where there's no welfare system at all.

 

[Boon54]

I wouldn't worry about forgetting things, I have been doing so
for years, loose the thread of what I am speaking about, forget
why I went into the kitchen, or any room when I forget, but I am
still bright, I can do complicated projects, I can write fairly well,
without any spell checker prompting me.

All of the above happens as we age, I know several people who
suffer from this, if you worry about it, you might cause a lot more
damage than if you accept and that you are not getting demented!

Mike.

LOL. My way of worrying about it is to find out what I can do about it and do that. This includes, apparently, learning not to worry about it, LOL. You're right that worry can make things worse. But I'm not a happy-go-lucky type of guy.

 

[Boon54]

Mom went Alzheimer's about 18 months before she passed. She reverted to when she was about 8-12, except when I was around. She remembered me and her youngest daughter, but not her oldest.

She never was violent, just quite and simple. We were very lucky she didn't stretch it out over a long period. I've had families tell me they were envious at the short span, instead of 20 years of slow decline.

Yes, my uncle was like that too. He was the loveliest of people, all the way to the end. It made it a lot easier for people to care for him. I hope I decline like that too. I'm a Christian and all I want from God is an quick and easy death. Ideally, to have all my faculties until I die and to die in my sleep, LOL.

 

[Boon54]

What can you do about it? Have financial resources for a good facility and your legal paperwork in order?

I do have some money saved up and both Medicare and private insurance. I think that should do me. My family is probably more concerned about the care I might get than I am. I've always lived not expecting anything from anyone else and I feel very fortunate to live in a country like Australia.

Yes, I've got my will and stuff sorted. All I need to do now is to take the best possible care I can of myself. The rest I leave to God.