What is it like to live with dementia?

Boon54

Boon54

Member
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 wonder about it too.

I believe that as long as I’m still wondering if I have dementia, I’m probably fine.

Sometimes I think that dementia is actually harder on our loved ones than it is on us.

Sadly, the longer medical science keeps us alive the more likely we are to develop it.

I hope something simple takes me before dementia becomes an issue.
 
It’s not easy to understand. My wife has moderate dementia and it’s breaking my heart to see her this way. She will ask me the same questions over and over again. Long story short, it’s not easy for either one of us.
See a doctor right away if you suspect you might have it. Meds can slow it down. We waited too long and now she is taking about the strongest med there is. To little, too late I’m afraid.
 

Do not assume that what you have is dementia per say. Brains get tired…and so do bodies. Embark upon an exercise, healthy diet and sleep routine before anything else. Twenty years ago I had days where quite literally I could not come up with family member’s names. Still happens on days I am very fatigued. But I am fine…and a little extra sleep goes a long long ways. Sleep needs to be natural…not sleep that is chemically induced.
 
Aunt Bea said:
I wonder about it too.

I believe that as long as I’m still wondering if I have dementia, I’m probably fine.

Sometimes I think that dementia is actually harder on our loved ones than it is on us.

Sadly, the longer medical science keeps us alive the more likely we are to develop it.

I hope something simple takes me before dementia becomes an issue.
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Yes, I know what you mean. It's so good, isn't it, that we have people like that. Not just our loved ones but also those nurses and carers who tend to us when we are sick and disabled. I've met so many people with such pure hearts that I'm convinced that God exists because they do.

If only we can have a say in how we go.
 
Pappy said:
It’s not easy to understand. My wife has moderate dementia and it’s breaking my heart to see her this way. She will ask me the same questions over and over again. Long story short, it’s not easy for either one of us.
See a doctor right away if you suspect you might have it. Meds can slow it down. We waited too long and now she is taking about the strongest med there is. To little, too late I’m afraid.
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When my uncle had dementia, not sure if it's Alzheimer's, he would talk to me and then 10 minutes later talk to me again as if he just saw me. What are the early signs for you, in terms of noticing when she might need help?
 
Muskrat said:
Do not assume that what you have is dementia per say. Brains get tired…and so do bodies. Embark upon an exercise, healthy diet and sleep routine before anything else. Twenty years ago I had days where quite literally I could not come up with family member’s names. Still happens on days I am very fatigued. But I am fine…and a little extra sleep goes a long long ways. Sleep needs to be natural…not sleep that is chemically induced.
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I find I don't sleep as well as I used to. I used to sleep 8 hrs straight, and then wake up on the dot. No more. I'm wondering if that's normal as well, or something I should tell me doctor.
 
I was watching a video on dementia and someone asked the question, why this explosion of cases compared to fifty years ago. The doctor named three medications used for diabetes, heart disease, and high blood pressure, to make a point. People are living 20-30 years longer than they would have without the medications. We now live long enough to get dementia. If you live past 85, the odds are 55%. Basically, a coin flip.
 
I was caretaker for my mother who eventually had to go into a nursing home because with my heart condition, sometimes I couldn't give the care she deserved. I started noticing it, maybe a year or so before she went in, but I was in denial. She was the most loving mother and grandmother, but sometimes in her demented state, she'd say we were stealing her money and she was going to sue us. She said my uncle (her brother in law), who was so devoted to her and visited almost every evening, was chasing her around the (nursing home) room one night with a knife.

Dementia patients get something called "sundowning", which means they get worse at night. I visited my mom every day (unless I was sick) and often twice a day on weekends. She was pretty lucid when I went in the daytime, but I noticed the changes at night. One day when she had to be taken to the ER, she rebuked me when I got there, saying her landlord pulled a gun on her because she couldn't pay the rent.

She blamed me because I "stole the rent money". And when he left, his wife held the gun on her. Thing is, she was living in public housing at the time and no one ever came to collect the rent in person. We always mailed a check. That's the only time I remember serious dementia hallucinations kicking in before nighttime.

My sister has dementia too. I seemed to have been the one who noticed symptoms first and thought they should have been dealt with at that time. But this has gotten long, so more about her later. Here is an article that should answer your questions. At the end, there's a comparison between dementia and age related changes in memory. BTW, my son will be 57 soon and he's more forgetful than I am sometimes. A certain amount of forgetfulness is deemed normal. https://www.alz.org/alzheimers-dementia/10_signs
 
Boon54 said:
When my uncle had dementia, not sure if it's Alzheimer's, he would talk to me and then 10 minutes later talk to me again as if he just saw me. What are the early signs for you, in terms of noticing when she might need help?
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The repeated questions is a good start. She would ask me how did you sleep. 5 minutes later, the same question. It’s really hard to put a finger on it as it is different for everyone.
 
@Pappy Have I ever shown you this? I followed this lady all the way through her demntia journey. She had like you.. a wonderful supportive husband and family. She lived with her husband both of them in their 80's, and her one son who was often away working. They employed a cleaner, and a lady who came to see to the lady of the house with her bathing and dressing.. and often she would cook and be very patient when Betty refused to eat or wanted to fight ,but they saw through it all until her passing..with great humour...

There came a time when she didn't recognise herself in the mirror.. and altho' they said they were upset to learn she no longer knew herself, they met it with the humour that they knew she did herself. apparently she'd always been very on the ball, smart and quick thinking lady until the Dementia got hold of her late in life


It's her son who takes all the videos....who you can hear talking behind the camera




 
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We cared for my wifes mother that had full blown alzheimers. She was living with a sister when diagnosed. The sister couldn't provide the care so she asked us if we could. Of course the asswer was yes. My wife flew to Puerto Rico. Then bought her mother a plane ticket on the same return flight she had.

For the most part it was easy. While she was living with us we could be available 24/7. Not a mean bone in her body that was the way she was. Were lucky to have a lot of memories of funny things that occurred while she was with us
 
Younger brother (70's) was just diagnosed with early onset of dementia. Abused drugs & alcohol in his early 20-30s. Maybe paying the piper now. Haven't seen or talked to him in 21 years. It was said our family had weak minds & strong backs. Oldest sister (80's) lives in her own world in a local nursing home.
 
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My brother died of it this past Feb. It is the worse disease ever. Surgery makes it progress even faster. He lost ability to swallow.He died a slow agonizing death.
His only daughter tested positive for possibility of getting disease..her grandmother had it.
I will take my pain no matter how bad it gets,but I pray to keep my mind. I do mind gamed and other - probably useless things,hoping to never get that disease.
 
hollydolly said:
@Pappy Have I ever shown you this? I followed this lady all the way through her demntia journey. She had like you.. a wonderful supportive husband and family. She lived with her husband both of them in their 80's, and her one son who was often away working. They employed a cleaner, and a lady who came to see to the lady of the house with her bathing and dressing.. and often she would cook and be very patient when Betty refused to eat or wanted to fight ,but they saw through it all until her passing..with great humour...

There came a time when she didn't recognise herself in the mirror.. and altho' they said they were upset to learn she no longer knew herslef, they met it with the humour that they knew she did herself. apprently she'd always been very on the ball, smart and quickthing lady until the Dementia got hold of her late in life





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This is so good. Thank you.
 
Knight said:
We cared for my wifes mother that had full blown alzheimers. She was living with a sister when diagnosed. The sister couldn't provide the care so she asked us if we could. Of course the asswer was yes. My wife flew to Puerto Rico. Then bought her mother a plane ticket on the same return flight she had.

For the most part it was easy. While she was living with us we could be available 24/7. Not a mean bone in her body that was the way she was. Were lucky to have a lot of memories of funny things that occurred while she was with us
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You are a blessing.
 
My sister was diagnosed with Parkinson's in her early 60's, and not too long after, with Lewy Body Dementia. From what I have read since that time, it seems Lewy Body is its own disease and comes with Parkinson-like symptoms. In any event, it was a horrible 6 years until she passed away at 68. Hallucinations, paranoia, calling the police on family members with imagined threats.

She did get regular medical care but absolutely refused to take any medications. Well, medical visits, she refused any care. She lived in a small suburban area and the local police became used to her calls. When she said her family told her she had to "get out of the house" they took that opportunity to have EMS take her to the hospital "so she would not be homeless in the cold."

She went from the hospital to a nursing home. Even though she had scheduled visitors all day long (we worked out a schedule that some family member or a friend was there from 8 am till 7 pm) she deteriorated rapidly. Became combative at times, took on a persona that was not her at all. Became seductive with male nurses, again very out of character for her.

We had no choice but to place her with Hospice 2 months later and she passed away peacefully 2 months after that.

Since she refused just about everything, even physical therapy, we really could not find out exactly what was going on. I have a strong feeling that she was misdiagnosed. She progressed so quickly.

Her son bought her what is known as an Alzheimer's clock when she was still at home. Everyone must know what it is. A large digital clock with day, date, time with Morning, Afternoon, Evening designation. She would say, "He paid a lot of money for this clock, and it is always wrong." She insisted that she was always right and the rest of the world was wrong.
 
Kika said:
My sister was diagnosed with Parkinson's in her early 60's, and not too long after, with Lewy Body Dementia. From what I have read since that time, it seems Lewy Body is its own disease and comes with Parkinson-like symptoms. In any event, it was a horrible 6 years until she passed away at 68. Hallucinations, paranoia, calling the police on family members with imagined threats.

She did get regular medical care but absolutely refused to take any medications. Well, medical visits, she refused any care. She lived in a small suburban area and the local police became used to her calls. When she said her family told her she had to "get out of the house" they took that opportunity to have EMS take her to the hospital "so she would not be homeless in the cold."

She went from the hospital to a nursing home. Even though she had scheduled visitors all day long (we worked out a schedule that some family member or a friend was there from 8 am till 7 pm) she deteriorated rapidly. Became combative at times, took on a persona that was not her at all. Became seductive with male nurses, again very out of character for her.

We had no choice but to place her with Hospice 2 months later and she passed away peacefully 2 months after that.

Since she refused just about everything, even physical therapy, we really could not find out exactly what was going on. I have a strong feeling that she was misdiagnosed. She progressed so quickly.

Her son bought her what is known as an Alzheimer's clock when she was still at home. Everyone must know what it is. A large digital clock with day, date, time with Morning, Afternoon, Evening designation. She would say, "He paid a lot of money for this clock, and it is always wrong." She insisted that she was always right and the rest of the world was wrong.
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Bless you, Kika, your family and all the people involved, for loving and caring for your sister through this ordeal. I already worry about losing touch with reality and with myself. How much more to lose my mind? Although some of us may find comfort in God, it doesn't stop us from feeling the sorrow and the horror. Thank God for the wonderful people who don't hesitate to help and support those who are suffering.

You know what? I'm scared. But there's naught I can do about it. We just have to embrace our lives and live it. In a way, that's the greatest courage to have. How we handle these final years will show our future generations how life needs to be lived.
 
I'm 90 without any signs of dementia or Alzheimer's Disease. My solution is simply play chess at Chess.com and Civilization VI at Steam.com. Those two games keep the mind functioning at peak levels. I play those games every day during every waking hour! Our mind is just one more organ in our bodies. We must keep it functioning daily at peak levels or it will collapse leaving dementia progressing to Alzheimer's Disease! I never watch TV since that activity makes the brain SLEEP!

If your mind is starting to fail, try those 2 games and see if you can rescue your brain.

Another activity is the one my wife uses. She cares for our dog. Dogs communicate with us using their brains to reach our brains. Thus, caring for dogs can also save you from mental deterioration!
 
Mitch86 said:
I'm 90 without any signs of dementia or Alzheimer's Disease. My solution is simply play chess at Chess.com and Civilization VI at Steam.com. Those two games keep the mind functioning at peak levels. I play those games every day during every waking hour! Our mind is just one more organ in our bodies. We must keep it functioning daily at peak levels or it will collapse leaving dementia progressing to Alzheimer's Disease! I never watch TV since that activity makes the brain SLEEP!

If your mind is starting to fail, try those 2 games and see if you can rescue your brain.

Another activity is the one my wife uses. She cares for our dog. Dogs communicate with us using their brains to reach our brains. Thus, caring for dogs can also save you from mental deterioration!
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Thank you, Mitch. I was thinking of you when I wrote the response above. I try to keep myself busy and my brain occupied as much as I can. Good advice. I will do my best to follow it.
 
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.
 

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