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Dementia’s journey
- Thread starter Dutchman
- Start date
It’s funny you should ask that question, Chris, as I’ve been wondering what used to happen to people with dementia in the past. Obviously, as life expectancy has increased there are more people with dementia. I think that in the past as people with dementia became frail they succumbed to infections which can be successfully treated today. I assume that many ended their days in the workhouse or awful mental asylums if their families were not able or willing to look after them.
I think this is right. There have always been institutions to care for those not looked after at home. But in the past there were fewer means of staving off death from infections or cardiac events. I’ll never know what really caused my husband’s death. He has AD on the death certificate but it was very likely something else due to his (non-intervention) care plan. The words on the certificate are just words.
Also we are not living close to one another anymore. No popping round to see how mum or dad is. Sharing of the care was easier.
We lived 2 minutes away from my Nan and my mum was always round there for shopping, a chat, General care. Aunts and uncles would visit more as they didn’t have far to travel.
My generation was the first to move miles away for work without a thought of eventually caring of older relatives. When my dad found himself on his own it was expected that he would live with my family. It was frowned upon when I said no. But I was a bus ride away so I could visit often.
Thank heaven that we have a half decent care system. Yes it could be better but at least we have one.
We lived 2 minutes away from my Nan and my mum was always round there for shopping, a chat, General care. Aunts and uncles would visit more as they didn’t have far to travel.
My generation was the first to move miles away for work without a thought of eventually caring of older relatives. When my dad found himself on his own it was expected that he would live with my family. It was frowned upon when I said no. But I was a bus ride away so I could visit often.
Thank heaven that we have a half decent care system. Yes it could be better but at least we have one.
In the past, many women left the workplace when they married or had children and only returned (if at all) if they could fit their work round their caring responsibilities. They cared for children and then elderly or sick family members. There was also an army of middle aged women looking out for elderly neighbours or, if they were churchgoers, elderly parishioners. These women are now at work and / or looking after grandchildren. People are, I think, not as neighbourly as they used to be as community bounds have weakened. Many churches have declined and consist largely of elderly people, with fewer younger people to support them. Of course, there is a vast difference between keeping a friendly eye on a frail person, running errands and doing bits of shopping for him/her and actually providing care; very few friends and neighbours will provide that, and that is very much seen as the responsibility of whatever family the person has. In the past, frail people without family support were moved to care homes earlier. These days, they are supported to stay at home for much longer even if, in my opinion, the situation is not always very satisfactory with a meagre care package leaving the person on his/her own for most of the day.
Whilst many families do not provide hands-on care most will act as an advocate for their relative. I think that it's a pretty bleak situation if a person - particularly a person with dementia - has no family at all willing and able to step up and act as an advocate and attorney.
Whilst many families do not provide hands-on care most will act as an advocate for their relative. I think that it's a pretty bleak situation if a person - particularly a person with dementia - has no family at all willing and able to step up and act as an advocate and attorney.
it used to be that the youngest daughter stayed at home and when married, the husband would move in as well so that the parents had the carer.
When we got married we moved to a village that everyone had heard of because on the edge of it was a large mental hospital. It took patients from towns miles away. It was opened in 1864 as an asylum. It changed its name to a mental hospital in the early 1920‘s and dementia patients were looked after there as well as other forms of mental illness.
In the early 1980‘s when Care in the Community came into force the residents with dementia were moved into care homes, several of them in the vicinity set up by redundant staff from the hospital. The extensive grounds and the site of the hospital are now a large housing estate turning the village into a small town. We also lost our small cottage hospital and that is now houses and apartments.
There is a mental hospital around 25 miles away with a secure unit, I have no idea if they cater for dementia or just other forms of mental health.
Both of these hospitals were invaluable but are lost and replaced ‘for the better’ with what?
In the early 1980‘s when Care in the Community came into force the residents with dementia were moved into care homes, several of them in the vicinity set up by redundant staff from the hospital. The extensive grounds and the site of the hospital are now a large housing estate turning the village into a small town. We also lost our small cottage hospital and that is now houses and apartments.
There is a mental hospital around 25 miles away with a secure unit, I have no idea if they cater for dementia or just other forms of mental health.
Both of these hospitals were invaluable but are lost and replaced ‘for the better’ with what?
it used to be that the youngest daughter stayed at home and when married, the husband would move in as well so that the parents had the carer.
While I’m here I’d like to share something this morning. It’s Sunday and usually I’m quite sad because of the memories Sundays hold when Bridget was here very disturbed by time, seeing me as a stranger and always having UTI’s due to poor personal care.
But I’ve reluctantly come to an understanding that I was coping just because I didn’t want my life to radically change from Bridget here to losing her to a care home. Her company was everything even during the bad times. I suppose it could be seen as a weakness on my part but you don’t finish 30 years of a good marriage away without a fight. I lost and she lost in the end to dementia.
And to know on that last day when she left that afternoon that she would never stand on the carpets again , never sit on our sofa, never walk up the path and disturb my silence after so long, well it it hit me like an express train. Everyone then said it’s for the best but it’s not till now do I appreciate she’s in the best place. That’s not to say I don’t harbour thoughts of her return here when we could be a couple again, if God could cause a miracle and restore her. But fantasy is useless, it just messes with my mind and i miss her being here so much.
She’s content now. Before she was angry, frustrated, frightened and very ill.
Bless you my love
But I’ve reluctantly come to an understanding that I was coping just because I didn’t want my life to radically change from Bridget here to losing her to a care home. Her company was everything even during the bad times. I suppose it could be seen as a weakness on my part but you don’t finish 30 years of a good marriage away without a fight. I lost and she lost in the end to dementia.
And to know on that last day when she left that afternoon that she would never stand on the carpets again , never sit on our sofa, never walk up the path and disturb my silence after so long, well it it hit me like an express train. Everyone then said it’s for the best but it’s not till now do I appreciate she’s in the best place. That’s not to say I don’t harbour thoughts of her return here when we could be a couple again, if God could cause a miracle and restore her. But fantasy is useless, it just messes with my mind and i miss her being here so much.
She’s content now. Before she was angry, frustrated, frightened and very ill.
Bless you my love
Thank you @update2020. I hope so, I hope I’m getting better, but grief is always hanging around ready to ambush me again.
Peter
I sometimes wonder what it will be like in say 12 months time. Bridget could survive for some time and I suspect will get progressively worse with more TIA’s, falls and general deterioration of her brain capacity. At the same time I’m having to learn to live alone and make some sort of life for myself which I stumble through each day.
Another Christmas and it marks a point almost 3 years ago where she couldn’t accept me, the family or friends. Another 8 months and she was gone to the home.
You know, there are places and things in the house I haven’t touched since she left. I seem to live in a bubble where all I need is in my bedroom, front room, bathroom and kitchen. And if it wasn’t for the occasional phone call from me or to me, if I died I wouldn’t be found for some time. I have these dark moments
Another Christmas and it marks a point almost 3 years ago where she couldn’t accept me, the family or friends. Another 8 months and she was gone to the home.
You know, there are places and things in the house I haven’t touched since she left. I seem to live in a bubble where all I need is in my bedroom, front room, bathroom and kitchen. And if it wasn’t for the occasional phone call from me or to me, if I died I wouldn’t be found for some time. I have these dark moments
Big mistake!! I’m looking for blank Christmas cards as Bridget used to collect them all year round. I find a box of cards but these are cards we sent each other which we kept as reminders of each special date - birthdays, anniversary and Christmas or just to say I love you.
In them I can see over the years a deterioration of her handwriting, her struggles to say how much she loved me, the mix up of grammar, but she so loved me and couldn’t express this the way she wanted.
I’m so unhappy at the thought of how much she must have wanted to say but her brain stopped her. The fear and confusion she must have felt. And it’s only now do I fully appreciate all of this.
I write this to those still going through all this to try to remember that our love ones are still in there somewhere. Try to have as little regret as possible once they’re gone. My mistake was to pretend it wasn’t happening as my coping strategy. I could have been more kind and thoughtful but generally I wasn’t. All gone now and the cards are tucked away till I feel better
In them I can see over the years a deterioration of her handwriting, her struggles to say how much she loved me, the mix up of grammar, but she so loved me and couldn’t express this the way she wanted.
I’m so unhappy at the thought of how much she must have wanted to say but her brain stopped her. The fear and confusion she must have felt. And it’s only now do I fully appreciate all of this.
I write this to those still going through all this to try to remember that our love ones are still in there somewhere. Try to have as little regret as possible once they’re gone. My mistake was to pretend it wasn’t happening as my coping strategy. I could have been more kind and thoughtful but generally I wasn’t. All gone now and the cards are tucked away till I feel better
Peter, what you write goes straight to my sorrowing heart. Thank you for telling us your thoughts. It’s so poignant to read about her handwriting deteriorating. I used flash cards and a toddlers word book to try to keep Keith’s reading skills going, but his writing went so quickly. I too wonder what on earth that feels like. Kindredx
How does anyone cope on their own? Bridget would have looked after me, fussed, made the phone calls, advised me what to do. I’ve hurt my leg and can’t walk more than 200 yards. The doctor is phoning this afternoon and I’m afraid I may have broken something. Don’t really know what to do for the best.
So our love ones leave us with dementia and suddenly we’re having to cope with all of it in addition to seeing them regularly and struggling with those emotions. All too much for me today
So our love ones leave us with dementia and suddenly we’re having to cope with all of it in addition to seeing them regularly and struggling with those emotions. All too much for me today
Oh dear @Dutchman you are suffering today- so sorry to hear you are struggling, I was wondering what had happened to you when there was no post from you yesterday. I do hope you get something sorted out with your bad leg. Many of us are thinking about you.
Sending a big hug- brace yourself!
Flopsy
Sending a big hug- brace yourself!
Flopsy
I’ve been lucky. I phoned the doctor out of hours and managed to see a paramedic at the surgery who advised I had torn my thigh muscle and I’m on really strong pain killers till next Wednesday. Keep walking as much as possible. Going to take some time.
Thanks for the concern and encouragement
Peter
Thanks for the concern and encouragement
Peter
I’m on strong pain killers now and I’m walking on air
. Visited Bridget today and she was having her feet tended to by a Podiatrist which she hates. Funny how she has a good vocabulary when it comes to her feet being messed about!
I think she sees us as being boy friend and girl friend now and she’s always ready to kiss me. That’s something I suppose but all the deep intimacy built up over 30 years is obviously gone. That’s what dementia does, it destroys most of the wonderful feelings, ordinary and mundane but wonderful, and it leaves Bridget operating at a shallower level.
This increases my loneliness because yes, I’m on my own, but the deeper feeling are mine alone and I can’t share them any more.
. Visited Bridget today and she was having her feet tended to by a Podiatrist which she hates. Funny how she has a good vocabulary when it comes to her feet being messed about!I think she sees us as being boy friend and girl friend now and she’s always ready to kiss me. That’s something I suppose but all the deep intimacy built up over 30 years is obviously gone. That’s what dementia does, it destroys most of the wonderful feelings, ordinary and mundane but wonderful, and it leaves Bridget operating at a shallower level.
This increases my loneliness because yes, I’m on my own, but the deeper feeling are mine alone and I can’t share them any more.
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