What's the point......

White Rose

Registered User
Nov 4, 2018
355
I left my partner in day care for most of Monday as I had stuff to do - on my way to collect him in the car the thought popped into my head that this disease is the most unimaginable nightmare. Any physical illness you can deal with, you can still talk to the person, they generally don't change in their personalities but dementia is the end of everything - it's a death without death, it's a no hope illness. Forgive me for being blunt but I keep asking myself what's the point? We carers try to stay upbeat, we adjust to every new deterioration, I think we are generally just too busy to even think about it but just read on here what people have to deal with - spouses who no longer know that they have a wife/husband, incontinence and double incontinence, wandering PWD, lack of sleep, verbal and sometimes physical aggression, being responsible for every thing from cleaning to finances to personal care.....and lots more besides. I don't have time to cut my toe nails let alone go to the hairdressers or the opticians, though I find time for my partner to go to the barbers, get a shave, dentist, GP or whatever. I do now have carer help to take him out for a walk and some hours of day care but even so, the house is a mess, the washing piles up, he's now taken to blowing his nose on the towels if I don't watch him. Everyone I know is planning a holiday, friends off to the UAE and Costa Rica, someone just back from the Canary Islands and the Caribbean .... there won't be any more holidays for us, it's too stressful for me and too confusing for him. All of us devote so much time and energy to our PWD, keeping them clean, fed, active, entertained ...... but I ask again in all seriousness 'what's the point'? Because we have no choice? Because we love them? Because we couldn't live with ourselves if we let them suffer? Is dementia on the increase? I never came across anyone with dementia when I was younger, now everyone you speak to knows someone who had/has it.
 

Banjomansmate

Registered User
Jan 13, 2019
1,471
Dorset
People are living longer and now dementia is being recognised and named. My aunt obviously(now) had some form of dementia 45+ years ago but it wasn’t recognised by her family as far as I am aware.
The Banjoman collapsed and died 10 years ago whilst visiting family in France. He was resuscitated and given a pacemaker which possibly kept him alive until he died of other cause, listed as Lewy Body Dementia, in October.
 

Lilac Blossom

Registered User
Oct 6, 2014
545
Scotland
" it's a death without death " - That is so true. Time after time we mourn the loss of everything that makes PWD the person he/she used to be - it's a continuous state of bereavement. No wonder dementia is often described as "the long goodbye"

I can identify with so much of what you have written, White Rose, and wish I had something helpful to say.

Lilac x
 

Yinyang

New member
Jan 20, 2020
7
I agree White Rose. Your caring is way more than mine (parents in a care home) but I keep thinking what's it all about? I watch my parents personality and life slowly ebbing away. There's nothing I can do to make it right for my Dad who is an intelligent man who travelled the world first in the Merchant Navy then as an engineer. I try but it's never going to be enough. Mum's dementia is more advanced and she is much more content.
 

Splashing About

Registered User
Oct 20, 2019
389
I watch my mother’s torturous existence and can’t bear it. I’m going to complete a thorough advanced decision planning form this summer which will say take your pacemaker and fling it somewhere other than in me...
 

Thethirdmrsc

Registered User
Apr 4, 2018
110
Death without a death is very true. My tunnel is slowly closing. I don’t know how strong I am going to be, don’t know when I am going to fold, but I will keep going until I decide to stop.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,391
Kent
As far as dementia goes, even though we have no choice, I would rather be the carer than the one being cared for.
 

TNJJ

Registered User
May 7, 2019
1,054
cornwall
I watch my mother’s torturous existence and can’t bear it. I’m going to complete a thorough advanced decision planning form this summer which will say take your pacemaker and fling it somewhere other than in me...
I have done my advanced directive.It just needs signing. I only want pain relief and to be kept comfortable. No heroics.I have also planned and paid for my funeral. I didn’t want my children to bear the cost..I’m 56 but surrounded by dementia and heart failure in the parents.. It is a “just in case scenario “
 

annielou

Registered User
Sep 27, 2019
495
Yorkshire
My mum has said quite a few times, she doesn't like what is happening to her and doesn't want to be here and as things will get worse 'what's the point'.
Its heartbreaking to hear but I can see why she says it. When we were younger and she saw people on tv in trouble and suffering, unable to look after themselves and live normally mum would say if I ever get like that where I can't look after myself shoot me, in the past 6 months or so she has on occassion said if I had a gun I'd use it.
Thankfully she doesn't and I will always try my very best to never let her do anything like that anyway, which she knows I would always try to stop her, but I can understand where she is coming from when she says it now.
Dementia is a s@@t cruel pi@ of a disease that steals our loved ones lives and ours too.
I too wonder is dementia becoming more common, or is it just being diagnosed and talked about more? I do remember over the years a few people who had relatives they said behaved a little odd or needed looking after cos they couldn't remember how to do things and didn't know who they were, but I don't think that dementia was ever mentioned, it probably wasn't diagnosed or talked about then. Nowadays like you say it seems like everyone knows someone with it. Its scary and depressing just how many people are affected.
X hugs X
 

Vitesse

Registered User
Oct 26, 2016
150
I left my partner in day care for most of Monday as I had stuff to do - on my way to collect him in the car the thought popped into my head that this disease is the most unimaginable nightmare. Any physical illness you can deal with, you can still talk to the person, they generally don't change in their personalities but dementia is the end of everything - it's a death without death, it's a no hope illness. Forgive me for being blunt but I keep asking myself what's the point? We carers try to stay upbeat, we adjust to every new deterioration, I think we are generally just too busy to even think about it but just read on here what people have to deal with - spouses who no longer know that they have a wife/husband, incontinence and double incontinence, wandering PWD, lack of sleep, verbal and sometimes physical aggression, being responsible for every thing from cleaning to finances to personal care.....and lots more besides. I don't have time to cut my toe nails let alone go to the hairdressers or the opticians, though I find time for my partner to go to the barbers, get a shave, dentist, GP or whatever. I do now have carer help to take him out for a walk and some hours of day care but even so, the house is a mess, the washing piles up, he's now taken to blowing his nose on the towels if I don't watch him. Everyone I know is planning a holiday, friends off to the UAE and Costa Rica, someone just back from the Canary Islands and the Caribbean .... there won't be any more holidays for us, it's too stressful for me and too confusing for him. All of us devote so much time and energy to our PWD, keeping them clean, fed, active, entertained ...... but I ask again in all seriousness 'what's the point'? Because we have no choice? Because we love them? Because we couldn't live with ourselves if we let them suffer? Is dementia on the increase? I never came across anyone with dementia when I was younger, now everyone you speak to knows someone who had/has it.
Our lives seem to be running in parallel! This disease is absolutely soul destroying, isn’t it? Like you, I spend my life making sure all is well for my husband and finding things that will keep him happy. Gone are the days when we went to places that I might enjoy, our only social life Is memory cafes and dementia friendly activities, and they are only occasional outings. Any appointments for me are normally postponed or cancelled, because he is having a bad day and I can’t be bothered to try to persuade him to come. I have tried a day Care and private carers but he won’t cooperate and again it’s easier to give up than try to persuade.
Before all this, he always said that if he was terminally ill he would ‘go to Switzerland’ to end it all. He wouldn’t want to be like this and I have to try to be strong to care for him.
Years ago, they used to refer to hardening of the arteries, which was obviously dementia by another name, but people seemed to die more quickly than these days, or so it seemed to the younger me. When you live with it every day, it seems to go on for ever. I know I shall be heartbroken when the time comes, but all too often I am somewhat disappointed that another day dawns on a dementia filled day.
 

PalSal

Registered User
Dec 4, 2011
780
Pratteln Switzerland
I really like what Granny shared above, there is much to be grateful for .....that we are the carers and not the ones being cared for.
White Rose. I can tell you from my own experience, I go up and down emotionally and with my ability to handle the situation. My emotional well-being is certainly linked to my ability to accept my situation and continue to make choices. I can make choices my husband cannot.
But no one here on TP is going to criticize you should you decide not to keep him with you at home. Is a care home an option for you? It does not mean that you would not care for him still, just the intense daily caring you would not have to deal with. Perhaps that is a consideration for you?
Their are many fine examples of carers here who have made that decision and it is working. They are not primary carers anymore but involved in their spouses care, who is in a home.
I am sure that one day I will reach this point of care. I cannot imagine I can go on too many more years at home. But I try to keep it in the day only....one day at a time.
Good luck I am glad you have some walkers and other support as you wade thru your feelings and emotions, and make plans for your next steps.
 

kindred

Registered User
Apr 8, 2018
2,341
I left my partner in day care for most of Monday as I had stuff to do - on my way to collect him in the car the thought popped into my head that this disease is the most unimaginable nightmare. Any physical illness you can deal with, you can still talk to the person, they generally don't change in their personalities but dementia is the end of everything - it's a death without death, it's a no hope illness. Forgive me for being blunt but I keep asking myself what's the point? We carers try to stay upbeat, we adjust to every new deterioration, I think we are generally just too busy to even think about it but just read on here what people have to deal with - spouses who no longer know that they have a wife/husband, incontinence and double incontinence, wandering PWD, lack of sleep, verbal and sometimes physical aggression, being responsible for every thing from cleaning to finances to personal care.....and lots more besides. I don't have time to cut my toe nails let alone go to the hairdressers or the opticians, though I find time for my partner to go to the barbers, get a shave, dentist, GP or whatever. I do now have carer help to take him out for a walk and some hours of day care but even so, the house is a mess, the washing piles up, he's now taken to blowing his nose on the towels if I don't watch him. Everyone I know is planning a holiday, friends off to the UAE and Costa Rica, someone just back from the Canary Islands and the Caribbean .... there won't be any more holidays for us, it's too stressful for me and too confusing for him. All of us devote so much time and energy to our PWD, keeping them clean, fed, active, entertained ...... but I ask again in all seriousness 'what's the point'? Because we have no choice? Because we love them? Because we couldn't live with ourselves if we let them suffer? Is dementia on the increase? I never came across anyone with dementia when I was younger, now everyone you speak to knows someone who had/has it.
I agree. Whether dementia is on the increase is hard to tell. I did my nursing cadetship in a unit for the elderly and it was full of people who, looking back, I can see had dementia but we called it delayed shell shock because that's what folk thought it was. The huge mental hospitals around big cities were full of people with dementia. These were closed in the Thatcher years and put out to care in the community which is at home, or care home. It's in effect been privatised.
Folk at home are trying without training or a supportive team to contain insanity.
Obviously we have to live with ourselves and the decisions we make.
It is surreal that people, carers, have to suffer like this, finding philosophies to keep going. I used to write I must endure 100 times at the end of each day.
all my sympathy, White Rose. Kindred.
 

Banabarama

Registered User
Dec 28, 2018
52
Sussex
It’s a hard road for sure, White Rose. If as people say what doesn’t kill you makes you stronger, we will be very strong when we come out the other end of this nightmare!

I currently have my husband home after four weeks in hospital. He is unlikely to be able to walk again and is presently confined to bed. It is impossible to move him with just one carer as there is no cooperation and he’s a heavy man. But he seems a little calmer and is no longer kicking/screaming/biting ( he has LBD) and is instead sleeping a lot. But obviously not sure what the next few weeks/months will bring. I am hoping for that increase in strength to keep going.

But please make some time for yourself. Can a friend look after your husband while you go to the hairdressers and for other essentials (and also treats). It is so important.
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
The psychological torture of caring for a PWD is never ending. You are damned if you do (look after them at home, if you can), damned if you don’t (opt for a care home, if it’s too bad). No wonder we are in a bad state. I am now a SP looking after my piglet and I have become a piglet too, see The Selfish Pig’s Guide to Caring.
 

White Rose

Registered User
Nov 4, 2018
355
I have done my advanced directive.It just needs signing. I only want pain relief and to be kept comfortable. No heroics.I have also planned and paid for my funeral. I didn’t want my children to bear the cost..I’m 56 but surrounded by dementia and heart failure in the parents.. It is a “just in case scenario “
Well done @TNJJ , I'm with you on that one and have given my daughter instructions.
 

White Rose

Registered User
Nov 4, 2018
355
Thank you all for responding on this thread, agree with everything said and @Grannie G yes better to be the carer than the cared for. @kindred mentioned the huge mental hospitals, yes maybe that was why we didn't see so much of dementia then, thank goodness there's an improvement on those though - some of the care homes now are positively luxurious. I know I'm better off than so many people who contribute on this site because my partner has the funds to pay for care. Even so, like everyone I still carry the emotional burden as much as physical. We carry a 3 part burden really - there's the physical caring element, there's the emotional side of losing the personality of our loved ones (perhaps you might call it their soul?) and then the third element is having to watch them deteriorate from being intelligent adults to becoming large toddlers and then even vegetables and the indignity of all they have to go through.
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
Thank you all for responding on this thread, agree with everything said and @Grannie G yes better to be the carer than the cared for. @kindred mentioned the huge mental hospitals, yes maybe that was why we didn't see so much of dementia then, thank goodness there's an improvement on those though - some of the care homes now are positively luxurious. I know I'm better off than so many people who contribute on this site because my partner has the funds to pay for care. Even so, like everyone I still carry the emotional burden as much as physical. We carry a 3 part burden really - there's the physical caring element, there's the emotional side of losing the personality of our loved ones (perhaps you might call it their soul?) and then the third element is having to watch them deteriorate from being intelligent adults to becoming large toddlers and then even vegetables and the indignity of all they have to go through.
Yes, yes and yes to all these points.
P.S. And money helps obviously but that’s not what gets you in the end. You still have to endure all these things.
 

White Rose

Registered User
Nov 4, 2018
355
I agree White Rose. Your caring is way more than mine (parents in a care home) but I keep thinking what's it all about? I watch my parents personality and life slowly ebbing away. There's nothing I can do to make it right for my Dad who is an intelligent man who travelled the world first in the Merchant Navy then as an engineer. I try but it's never going to be enough. Mum's dementia is more advanced and she is much more content.
So tragic for you to see both parents suffer. Your burden is no less than mine even if they are in a care home, you still have the emotional trauma. Like your Dad, my partner was a very intelligent man and loved to travel - he still asks if we can go places, but I just can't take him overseas now, too stressful for me and too confusing for him, it hurts me that I can't take him on safari to see the animals, he loved that so much - going to take him to Longleat in the summer, not quite the same though!