Fear of Dementia

It scares me too as my mother died after suffering horribly for 14 years due to Dementia. Her dying was just as bad. I love you, Mom... RIP. Oh dear, I am actually crying.

It seems that there are more and more people being afflicted with Dementia and Alzheimer's. Mom's younger sister died due to Alzheimer's and now their only surviving brother has the early stages of Dementia.

Makes my 2 sisters and I worry that we will also be victims.
 

Wow Jules..I didn't know there was that many forms! I understand you being fearful. Within the last few months I've been wondering if I'm developing it. I'll find myself reaching for the wrong cabinet door or another item when I know that's not where what I need is, or not what I'm looking for. I always catch myself though before I open the door, or take out the item. My sister (half...though we don't use that term) clearly has dementia and her son who's very close to her doesn't seem to want to deal with it. I talked with her daughter about it and sent her some information, hoping she'll share it with my nephew and they'll find a way to deal with it before it gets worse. My sister has a very strong personality and is very stubborn, so I don't know. She gets lost sometimes when she's driving familiar routes, she gets easily agitated even when trying to help her figure things out and like your friend, she repeats herself several times during a conversation and forgets what she's been told.

My mother (not my birthmother) developed what the doctor called vascular dementia in her latter years. I didn't realize it was happening at first. @Pinky you're right, it was very heartbreaking to watch. The last three years of her life were spent in a nursing home. I'd go everyday (unless I had an attack of A-Fib) and sometimes twice a day. In the early morning, she knew me. In the evening (the "Sundowning" period), she'd think I was someone else...her deceased sister or mother. She threatened to sue me and my son (who was her heart) one day while in a demented state. She accused my uncle (her brother in law), who visited her daily too, of chasing her around her room with a knife. She accused me of stealing rent money from a landlord and his wife, each who threatened to shoot her if she didn't pay up. For decades she lived in public housing so there was no "landlord" and "wife". When she was herself my mother was one of the sweetest people you ever want to meet. In fact, the staff called her a sweetheart and their "grandma".

Jules, I keep my brain busy and active, sometimes challenging myself. I'm hoping that helps stave off demential. I hope that there's something you're doing or can do to stave off yours.
 
@OneEyedDiva you‘re really dealing with and have dealt with many issues. When you’ve experienced it first hand, we can’t help but watch for signs. You certainly feel helpless.

If genetics indicate anything for me, my mother didn’t start to show signs until she was in her upper 80s.

My brain stimulator is bridge, online during Covid.
 
I don’t fear it, necessarily, but I often think what a horrible disease it would be to have.

We spend our entire lives making memories, and the older I get, I recall those memories more and more. Take them away, and what do we have?

And I wish I knew what it is like inside the mind of an alzheimers sufferer. Do they go to a happy place in their minds? Or do they live in a blank void? Where are they???
 
MarciKS said:
I live alone and honestly there's not really anyone here to take notice if something goes wrong & I won't be able to do anything about it. I'll just end up somewhere some day not knowing where I am or even being aware I'm lost. I just hope it's not in the middle of winter & I don't accidentally board a flight for another country. That would tick me off if I suddenly remembered who I was and I was in India or something.
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There are many types of dementia so don’t be too concerned. Everyone is worried about Alzheimer’s as that is the most talked about one. I was diagnosed with dementia when I was in my 50’s. I think, can’t really remember 😂.

I have a type that is particular to adults that were physically abused as children and endured a great deal of pain. Under these circumstances your brain does not grow correctly, due to the effect of pain on the brain. Hmm, that rhymes. 😁

I did not ask about the long term effects.
 
SeaBreeze said:
My mother's sister died from Alzheimer's many years ago. I think of dementia often. There's things I forget on a daily basis, even when I was young it happened. Getting busy, rushing around, multi-tasking, etc. I'll often go into the garage to do something, see something else I want to move or put away, then realize I didn't get the first thing done.

I don't mind getting a bit more forgetful in my old age, have to check if I did something a couple of times, etc., as long as I know who I am and who my husband it, that to me is the most terrible effect of AD. One thing I don't do is dwell on it, most of the time I catch myself quickly and do what I need to. I think it's not good for us to fear it everyday and think about it all the time, as Aunt Bea said, we rob ourselves of our precious moments in the present. That is never good.
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I think there is now a genetic test that will tell you if you have the gene which causes Alzheimer’s, also a CT/MRI scan will show if your brain has shrinkage, which can be an indication of Alzheimer’s or an indication you might get it.

My husband has brain shrinkage, I do not.
 
officerripley said:
This is something I worry more & more about, also not just dementia but what Huzz and I are going to do when we can no longer safely drive (coming soon for him and I think maybe already for me) since we never had kids who might possibly help. There are things we could do now--move to a smaller place, move to a place where we could walk to places we need to go--we're within walking distance of nothing now--but Huzz is in total denial about it, says he's never moving from here, is never ever going to give up driving, etc. and refuses to discuss it any further. So I get more & more worried every day. Have I told him how worried I am? Yep; his reply? "DON'T worry; just stop it." So I'm out of luck.
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My husband is reaching a time when he should stop driving, but he refuses to acknowledge it as well.
 
My dad is 91 and has a form of dementia. He is still in good physical shape but mentally he is declining. He still recognizes me when I visit him and tries to engage in conversations at times but his memory won't connect with the people, places or things that we are trying to converse about. Plus he has had some minor strokes in the past so his brain won't allow for his words to form properly at times. Around this time 4 years ago I took him to his doctors and he was told that he shouldn't drive anymore. It was the first time I have seen him cry in a long time. I'll never forget that moment. My brother in law died of Alzheimer's a couple of months ago. He was only 67. So yes, I do worry about it for myself at times. I do seem to have more "senior"moments with my train of thought but I do keep my mind active and I have told my doctor about my concerns but he does not seem to think that it is an issue at this point so I do take comfort in that. If I do show signs sometime down the line I will take action then but in the meantime I try not to think about it too much. Instead I'll concentrate on my dad and do all I can to engage with him. When he does get frustrated about not remembering things we end up just laughing it off although it hurts inside of me to see him that way. I have been told many times that the worse thing one can do is try to push the memory of someone with dementia.
 
Aneeda72 said:
My husband is reaching a time when he should stop driving, but he refuses to acknowledge it as well.
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In the Uk, if the doctor thinks that we should not be driving any more, he will send details to the DVLC, (Driving licence centre) which deals with driving licences for every driver in the whole of the UK... and they will take steps to deal with it by issuing a renewal licence for just one year if the dementia isn't too bad, or cancelling the driving licence immediately.

By law the driver or family member should inform the DVLA long before the doctor has to ...or face £1000 fine


from the DVLA website...

Based on the doctor’s report, medical advisers at DVLA/DVA will decide if the person can keep driving.


There are several possible results at this stage. DVLA/DVA may:


  • renew the person’s licence, usually for one year (see below)
  • cancel or ‘revoke’ it straightaway
  • ask for more information, such as more medical details
  • ask the person to take an on-road driving assessment before making a decision. This is the least common of the possibilities.

In all cases, DVLA/DVA will tell the person in writing.
 
I just turned 88 in January and I do not worry about Dementia or Alzheimer's as if it is to be, so be it. .We lose thousands of brain cells daily which are never replaced. I take Aricept and have been taking it for many years now. Actually it isn't recommended until Dementia sets in, but I told my doctor long ago, why not use a low dose as a preventative or at least a delaying method to forestall this problem? He agreed and while I am still fairly sharp, I do see myself reaching more and more for stuff in my memory.
 
I would imagine that outside of the cities the people like @MarkinPhx dad who was so upset when told he could no longer drive, is more palpable compared to the Uk with our excellent transport services due to everything being so close. Villages close to towns , towns bordering cities etc... so in reality there's very few places in the Uk that doesn't have a bus /train/ tube/ taxi service.. which wouldn't have to cost a fortune to go many miles to the next town as they may in the USA .
 
Lewkat said:
I just turned 88 in January and I do not worry about Dementia or Alzheimer's as if it is to be, so be it. .We lose thousands of brain cells daily which are never replaced. I take Aricept and have been taking it for many years now. Actually it isn't recommended until Dementia sets in, but I told my doctor long ago, why not use a low dose as a preventative or at least a delaying method to forestall this problem? He agreed and while I am still fairly sharp, I do see myself reaching more and more for stuff in my memory.
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you're sharp as a tack Lois.. can't imagine that you'd let dementia in through the door.. god willing...
 
hollydolly said:
I would imagine that outside of the cities the people like @MarkinPhx dad who was so upset when told he could no longer drive, is more palpable compared to the Uk with our excellent transport services due to everything being so close. Villages close to towns , towns bordering cities etc... so in reality there's very few places in the Uk that doesn't have a bus /train/ tube/ taxi service.. which wouldn't have to cost a fortune to go many miles to the next town as they may in the USA .
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His reaction was more based on the idea that his independence was being taken away from him. In a strange way he was reverting back to the boy that he was before he had a license. It was tough thing for him to accept.
 
Kathleen’s Place said:
I don’t fear it, necessarily, but I often think what a horrible disease it would be to have.

We spend our entire lives making memories, and the older I get, I recall those memories more and more. Take them away, and what do we have?

And I wish I knew what it is like inside the mind of an alzheimers sufferer. Do they go to a happy place in their minds? Or do they live in a blank void? Where are they???
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Both my parents suffered through dementia. I had a no contact relationship with them for 8 years until my brother asked me to meet up with them again, knowing he couldn’t care for them.

When I first met them my moms dementia was obvious. There were rotting banana peels and fruit flies throughout the house as well as 16 bags of garbage in the basement. My mom clearly hadn’t been out shopping for new pyjamas or under garments in years and would even forget to wear them. What was wonderful is she forgot that she resented me so was more loving towards me than she’d ever been in her life and loved when I’d ( we’d) go up to see her. My father had regressed into a world of internet as a possible form of coping.


Long term memory with her wasn’t as good yet my father ( who was 5 years older ) could talk about car rallies he’d been on with his pal from the 60’s & 70’s with explicit detail along with stories about his father that I’d never heard before. It was actually fascinating. My grandfather was a barber 💈 and he shared so many things that I’d never known before.

My mom could remember my husband telling our dog that if she shook her tail as much as she did, it would fall off and we’d have to buy her a new one but we couldn’t afford a silver one so she’d have to have a blue one. It was actually really cute.

She’d want to go for walks with us but couldn’t push her Walker through the sand so we’d push her around in a wheelchair which she enjoyed. Oddly enough she was actually the nicest & happiest I’d ever seen her. She showed true compassion which you could clearly see in her eyes and facial expressions but then she had a stroke which greatly affected her mind and body and she was never the same again. She had to stay in hospital long term until a nursing home was available which drove my father crazy.
He missed her so much it was heart wrenching to witness.

My fathers memory wasn’t as bad but his cognitive recognition was completely off. His drivers licence was taken away years ago yet he was still driving and no amount of reasoning would work. To him, he figured he could drive just fine yet I was told by the people at the hospital that he had driven around the parking gate onto the hill so he wouldn’t have to pay the parking fine. He also had the imprint of someone else’s licence plate embedded in the front of his car.

Once I realized this I took his keys and started driving him back and forth to see my mom. This I did over 40 times. He needed to be wheeled around in the wheel chair also and when we did see her she’d curse us every time.

At the time this really upset me but now that more time has passed , I understand that her mind was quickly failing her. She had no reasoning ability. This was the main reason why I had to find a nursing home for them both. My husband still worked and I could not look after them myself.

I had to finally hide my fathers car on their property since he still was driving to see my mom ( with another set of keys ) so I’d reason with him by saying I’d drive him. This he’d accept but I was hours away from him which made this very difficult. After researching and visiting many nursing homes I helped him fill out the forms and finally found one which was 15 minutes away from me. It was a lovely home where I could visit them both.

I explained the procedure that was needed and my father insisted he accompany her through a mobility service which would pick him up then pick her up at the hospital and bring them both down and my father would be driven back but this didn’t happen. My father held tightly onto my moms hand and wouldn’t let her go and no amount of reasoning changed his mind. The driver couldn’t do anything so they got driven back to their house where my father couldn’t possibly look after my mom.

Without going into details , she needed help with every area of care and he just couldn’t do it. The only decision I had was to call the police and ambulance for my mom to make sure they were both ok and have them both put into hospital while taking over the POA but I was so upset by the things said that I called government services who dealt with it after the entire Thanksgiving and it’s something that haunts me to this day. The only person happy about this outcome was my brother which I won’t get into.

I was so upset about this for close to a year and I’m not sure I could have gotten through it without my husbands help. He offered complete support and helped me understand the complexity of the situation. It was unbelievably difficult for reasons I can’t explain but my husband said many times that although it was wrong for my father to drive without a licence and ultimately kidnap my mom at the very end, he would have done the exact same thing for me. THiS is what saved my sanity throughout all of this. He helped me understand something I couldn’t.

Having said all this, my only advise about dementia for those with kids and those without is to keep in contact with someone who knows you; whether this be your neighbour, a friend, a family member, medical nursing aid or social assistance. There are services out there if you research. I got my parents government assistance as soon as I was reconnected with them and realized how desperately they needed help but unfortunately they can’t do everything in the one hour they are there.

I could have had documents drawn up to give me POA which would have made all of this much easier but in the end, glad I didn’t. I’m just glad I’d cared for them when they needed it most and did the essential work to get them both into nursing homes. The last I saw them they were sharing a room together, were being taken care of and seemed very happy and content. The home offered so many activities to keep them entertained, did all their laundry and fed them wholesome food with a variety of choices.
I’m finally at peace with my actions and how I dealt with it over those 3 plus years.
 
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Keesha beat me to it while I was about to post this but here's my version of "advice".

For those who are living alone and fear that no one will ever find them if they go lost or other fears, I encourage you to build a "family" right now...anyone can network, even from home. Of course, I would say church is one way, but if that's not appealing to you then there are book clubs, senior center groups, and volunteer groups. If you don't show up then they will know something is wrong.

Or if Covid is an issue, or you just can't leave home then there are online neighborhood websites where you can develop a group you trust and all agree to check in on each other online. If you don't have one you can start one. If you don't know how then Social Services could help you.

For instance the seniors here on the island who are able to get out on the beach meet as a group in the early morning hours before the sun gets too hot and they clean up the beach especially during rental season. I never see anything left on the beach...spotless..great exercise too), and there are so many more groups available everywhere.
 
hollydolly said:
I would imagine that outside of the cities the people like @MarkinPhx dad who was so upset when told he could no longer drive, is more palpable compared to the Uk with our excellent transport services due to everything being so close. Villages close to towns , towns bordering cities etc... so in reality there's very few places in the Uk that doesn't have a bus /train/ tube/ taxi service.. which wouldn't have to cost a fortune to go many miles to the next town as they may in the USA .
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Yup public transport is not great here and I cannot climb, andI mean climb, onto a bus. The steps are too highly spaced. Once I am pulled, pushed up them, my back is done and it’s wheelchair time. A lesson sadly learned
 
Aneeda72 said:
Yup public transport is not great here and I cannot climb, andI mean climb, onto a bus. The steps are too highly spaced. Once I am pulled, pushed up them, my back is done and it’s wheelchair time. A lesson sadly learned
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Here the buses drop the platform down electronically to allow Wheelchairs, prams, people who can't step up high etc on the bus
 
Aunt Marg said:
I doubt it, Mellow.

It started for me in and around the 50 mark, and most everyone I talk to experienced the same right around the same age.
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Unless I talk to a person and they use their name, every single day, the name is gone, it won’t stick in my memory. Movies, nope, even when I just saw it, loved it, and want to watch it again, I have to look up the name. I think these kinds of issues are common to us all.

Besides when we were younger we had similar issues, with so many children it was Tom, no response, Steve, no response, Joe, no response, look kid whatever your name is get over here now. 😂
 
Btw, I've read many a post from many a member and I've never noticed memory loss from anyone.
You all either don't have it or you are really hiding it well...or maybe I just don't remember ;)

I'll admit, I do have short term memory problems. I asked my doctor and she said, you're not getting dementia or alzheimers. I said, but how do you know. She grabbed a piece of paper with a circle drawn and numbers like a clock...but no hands. She said here, draw the hands for 7:50. I actually did it and then had to change one of the hands...it freaked me out. She said, you don't have dementia and showed me examples where the efforts were much worse....sometimes unrecognizable.

I said, but maybe mine is "early onset" and it helps to be caught early sometimes. Okay, now she was just tired of me :giggle:
 
Lara said:
Btw, I've read many a post from many a member and I've never noticed memory loss from anyone.
You all either don't have it or you are really hiding it well...or maybe I just don't remember ;)

I'll admit, I do have short term memory problems. I asked my doctor and she said, you're not getting dementia or alzheimers. I said, but how do you know. She grabbed a piece of paper with a circle drawn and numbers like a clock...but no hands. She said here, draw the hands for 7:50. I actually did it and then had to change one of the hands...it freaked me out. She said, you don't have dementia and showed me examples where the efforts were much worse....sometimes unrecognizable.

I said, but maybe mine is "early onset" and it helps to be caught early sometimes. Okay, now she was just tired of me :giggle:
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Alzheimer’s is not forgetting where you put your keys, it’s forgetting what keys are for.
 
Talking of buses , in 2 weeks time I can apply for a free bus pass...now I'm almost at retirement age!! I told my o/h that I'm going to use it when I need to go short distances, why pay for petrol, and parking charges ( all our public car parks are chargeable , including many supermarkets)... so for the first time in about 30 years I'm going to use a bus to travel into town..and leave my car at home sometimes
 

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