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Who cares about my Deprivation Of Liberty?

Grofit

New member
Oct 18, 2018
5
This will probably sound like a selfish post, but its the truth.
I am married to a PWD.
I am younger, 60, they are 70.
They are still mobile, but incontinent, not motivated, etc. etc.
I used to have a relationship that was:
-Emotional
-Intellectual
-Social
-Physical
All that has gone.

I am still young enough to have the potential for a fulfilling life, but my liberty is restricted due to caring for my PWD.

What do I do?

Stay at home and care for my PWD for however many years before they need a home, all the time resenting and not accepting my loss of liberty.

Family have suggested getting in more home care, but that only supports my PWD. It has to be arranged and timetabled, there is no spontaneity, and so what if someone comes in for 3 hours on a Saturday afternoon, my life needs more than that to be fulfilling.

I can see that my PWD is not yet at the crisis stage that requires a residential or care home.

But does the criteria for a home have to be based solely on the PWD?

I am at crisis, my mental and physical health is deteriorating.

Should the question about when to put a person in a home take a holistic view of the how the PWD+the Carer+the family, and not just focus on the PWD? I would say yes.

Sorry, this seems a bit of a rant.

Thank you.
 

Pusskins

Registered User
Jun 6, 2020
76
New Zealand
@Grofit I agree with all that you say. I, too want a more stimulating environment, but my needs and desires are drowned by those of MH with dementia. For me, I find the decision to put him into care a difficult one to make, but with the way his dementia is progressing, I don't think it will be very much longer before he does go into permanent care. If I look back, every 6 months I see another decline. I am in NZ and I'm assuming you're in the UK. Here, I would be allowed to place him into care anytime from now except 'they' try to persuade me to keep him at home for as long as possible. While this is an admirable aspiration, who's looking after the caregiver? Nobody. Every day I wonder how much longer I can continue this way. I fear that I'm not going to be able to have some kind of a normal life ever again because of my situation, or that I'm not going to have a total breakdown in the meantime. You're not alone, Grofit, but I know that it feels this way.

Are you able to place your PWD into a home or do you have to qualify with some greater criteria than what you currently have?
 

AliceA

Registered User
May 27, 2016
2,858
Stepping back from the emotional pain you are going through it may be helpful to consider what is practical.

Could your husband/wife manage on their own with x number of care visits a day?
Would they agree to go into a home.?
Can they self fund?
Local Authorities are tricky to say the least. Cut backs are a real hurdle even when you qualify.
Would regular respite breaks help, these would probably have to be self funded so as to be able to sell it as a holiday.
can you make changes at home to give you space and time?

recognise that you are grieving, dementia leads to a series of little deaths, at every change we lose a little more, sometimes we can find ways to adjust but it is painful.
do you have anyone to talk to? Family and friends give advice but it can be biased.
do get a check up about your own health, keep the GP on board with the situation.
you are as you say young, your hope and dreams have been smashed.

please get help, get a Carers assessment, get a local service needs assessment to check. You should be able to get this before the financial aspect is considered.
above have self compassion, caring is a very tough area.
 

Olliebeak

Registered User
Sep 13, 2014
145
Buckinghamshire
I logged in this morning feeling really grumpy about my life and wanting to have a rant and, as ever with TP, someone is feeling the same way. I am so fed up with my life as housekeeper (and everything else too boring to list). My OH - 15 years older than me, is not “bad” enough to go into care. He was going for a weeks respite every few months which he enjoyed (and I loved!). Although the home are taking respite stays again, he would have to be isolated in one room and I can’t condemn him to that. He really enjoys the company and has a real thing for the office manager!

As you say Grofit - I could get a carer to come in but I can still get out for the short spells - forwalk or a coffee with a friend. My OH probably needs care 20/7 and can cope at home for periods unsupervised - though I never know what muddle I will have to sort out when I get back.

I feel I am just existing - with COVID he suggested we sleep separately as I was still going out of the house - until full lockdown happened. So I sleep in the spare room and our room and bathroom has become “my”.

Like you Grofit - every aspect of our once great relationship has gone

His condition is detiorating very slowly which lots of people see as a bonus - except to me it’s just a longer prison sentence. I feel guilty saying that but it’s true

As Churchill said KBO!
 

Vitesse

Registered User
Oct 26, 2016
216
I logged in this morning feeling really grumpy about my life and wanting to have a rant and, as ever with TP, someone is feeling the same way. I am so fed up with my life as housekeeper (and everything else too boring to list). My OH - 15 years older than me, is not “bad” enough to go into care. He was going for a weeks respite every few months which he enjoyed (and I loved!). Although the home are taking respite stays again, he would have to be isolated in one room and I can’t condemn him to that. He really enjoys the company and has a real thing for the office manager!

As you say Grofit - I could get a carer to come in but I can still get out for the short spells - forwalk or a coffee with a friend. My OH probably needs care 20/7 and can cope at home for periods unsupervised - though I never know what muddle I will have to sort out when I get back.

I feel I am just existing - with COVID he suggested we sleep separately as I was still going out of the house - until full lockdown happened. So I sleep in the spare room and our room and bathroom has become “my”.

Like you Grofit - every aspect of our once great relationship has gone

His condition is detiorating very slowly which lots of people see as a bonus - except to me it’s just a longer prison sentence. I feel guilty saying that but it’s true

As Churchill said KBO!
I understand exactly how you feel. My husband is 20 years older than me, and we’ve had a very happy marriage - until this dreaded Alzheimer’s has come to ruin it all. He has deteriorated more during lockdown, but I can’t honestly say he should be in a care home. I can’t understand a word he’s saying any more and he doesn’t know I’m his wife. He wants my attention the whole time And gets angry when I’m on the phone. I feel guilty but every day gets harder to put up with. There must be more fun In Wormwood Scrubs!
 

Buteo

Registered User
Mar 20, 2019
80
I think one of the things that has impacted me is that my wife has deteriorated very quickly in five years. All the adult aspects of our relationship have gone and she's now like a very big, vocal toddler and I'm her parent. Most of her sentences have no meaning and we can't have a simple conversation. She can't be left and I keep an eye on her all the time. She can do very little for herself, she can feed herself and clean her teeth, but I do everything else. I'm tired out and deeply unsatisfied with my life, I used to feel privileged to care for her, but now, though I care deeply for her, I've had enough of treating the woman I loved passionately like a child. It's too sad.
 

Pink-geranium

Registered User
Nov 27, 2019
16
london
No don't just KBO! That's the story they feed us to keep women doing the dirty work.

I'm in much the same situation although we went through hourly care and now have live in - but it's still restricting. Our 2 children have been very reluctant to contemplate a care home but to me it;s the way to freedom. Recently we each wrote down the answers to 4 questions: Best for your Dad / my OH in the short-medium term, best for yourself, best for your dad in the long term; how do we take decisions.

I wrote what was best for me:

"Honest declaration: I’ve been doing this since 2017. I’m distressed by the thought of spending more of my reasonably good years living as I am now, even with brief breaks away.

So, I feel I’ve got myself into a position where I’m bound by your kindness - I feel you are insisting that D’s needs as you see them means he must stay at home, but, the consequence is that I am stuck providing what you see as the best life for D.

I truly question whether you are right or whether we could not create a good or even better life for him in a good care home.

Your question: do I really want simply to give up on D and move away: is a meaningless choice as I will not simply move out and leave you all to struggle. Although I suppose you could have him to live with you.

Therefore, what I think is best for me is that we positively plan to move D to a care home within say the next 3-4 months or so. This would be a timescale I could live with, it would allow thorough investigation of possible care homes, planning for a move of books and furnishings, and for preparing D. I say it again – I do believe it would also benefit D. Actually I think for D, the sooner the better, say September-October. Apparently, high functioning individuals decline much more quickly than others, as he is, and it would be a shame for D not to be able to get the benefit of the right place and to settle in there."

Thankfully they heard what I said and have agreed that we look to move to a care home before Christmas.
 

margherita

Registered User
May 30, 2017
2,561
Italy, Milan and Acqui Terme
Hi everyone,
I can relate to what you all write in your posts, in particular to @Olliebeak 's statement about slow deterioration.
Over the last year I have often hoped ( I can't say prayed only because I am not religious) a substantial deterioration would take place. I have been under house arrest for months , a sort of lockdown which started long before the epidemic began.
Here in Italy we say "The worse, the better", which doesn't seem to have a precise equivalent in English. It means the worse things get, the greater my chance to get back a bit of freedom.
My wildest dream? One day a month to spend on my own, leaving my husband at home with a paid carer.
 

Pusskins

Registered User
Jun 6, 2020
76
New Zealand
Hi everyone,
I can relate to what you all write in your posts, in particular to @Olliebeak 's statement about slow deterioration.
Over the last year I have often hoped ( I can't say prayed only because I am not religious) a substantial deterioration would take place. I have been under house arrest for months , a sort of lockdown which started long before the epidemic began.
Here in Italy we say "The worse, the better", which doesn't seem to have a precise equivalent in English. It means the worse things get, the greater my chance to get back a bit of freedom.
My wildest dream? One day a month to spend on my own, leaving my husband at home with a paid carer.
I feel for you @margherita . I don't get any free time away from MH either and can't afford to employ a sitter. MH is ok for brief periods, like a half hour dash to the supermarket or dentist, but I wouldn't want to leave him for longer than that. I have a friend who, when told MH has dementia said she hoped it would be a slow deterioration. Well, noooo! A quick one is beneficial for everybody and a little bit of freedom for me. Best wishes to you. 🌷
 

PalSal

Registered User
Dec 4, 2011
902
Pratteln Switzerland
Hi everyone,
I can relate to what you all write in your posts, in particular to @Olliebeak 's statement about slow deterioration.
Over the last year I have often hoped ( I can't say prayed only because I am not religious) a substantial deterioration would take place. I have been under house arrest for months , a sort of lockdown which started long before the epidemic began.
Here in Italy we say "The worse, the better", which doesn't seem to have a precise equivalent in English. It means the worse things get, the greater my chance to get back a bit of freedom.
My wildest dream? One day a month to spend on my own, leaving my husband at home with a paid carer.
@Hi everyone and Margherita....
I know that this is a serious moan by many of our members, and I am sympathetic. But I have to say your post made me laugh out loud. Thanks.
Yes , I agree sadly the worse Nicky gets the better my chance at freedom. As Nicky is on a waiting list for a carehome in our village, I continue to live in this 24 hours knowing that "this too shall pass". I am fearful about the length of time he will spend in care. As I have cared for him well for 18 years he is still so physically healthy, strong heart, strong (but gradually weakening) body. My fear is running out of money completely, it could happen. But I just keep turning it over. I can no longer worry about finances , I must think of my own health-physical and mental. I will have to self fund and my many calculations means that I have about 8 years of self funding, before I am broke, but I can no longer go on like this. My children will have no inheritance, but luckily we gave them all excellent educations and I hope the right principles to make good lives for themselves.
 

None the Wiser

Registered User
Feb 3, 2020
107
Thank you all for your honesty. It seems so wrong to be wishing that something will come along to bring a swift end to this situation, and so good to hear that others are wishing the same. @margherita you are so right that it’s been a lockdown before COVID19 lockdown, or a double lockdown with it! I go to bed hoping that something will bring a dramatic change in the night, and then am disappointed in the morning at having to face yet another day. Maybe a day will come when I will look back and wonder why I didn't appreciate having this time, but at the moment it feels like an imprisonment for a crime I’m pretty sure I haven’t committed!
 

Duggies-girl

Registered User
Sep 6, 2017
2,044
This will probably sound like a selfish post, but its the truth.

Should the question about when to put a person in a home take a holistic view of the how the PWD+the Carer+the family, and not just focus on the PWD? I would say yes.

Thank you.
I prayed that dad would just go in his sleep one night. He didn't, but I wish he had.
 

Jaded'n'faded

Registered User
Jan 23, 2019
895
High Peak
My mum got 'bad' instantly after a fall landed her in hospital. I had to move her immediately to a care home - previously she was at home alone and was 'early stages' getting worse but no major problems. She had a quality of life then.

Once in the care home her life was over really. She was there for 3 years before she died but all that time I wished for a dose of pneumonia (or a lightning bolt) to give her a quick end. As it was, she was perpetually unhappy, anxious, confused, aggressive, non-compliant and lived almost entirely in her room, totally bewildered. It took me a week or two after she went in to realise she was never coming back. It was a shock as she'd changed so much from the way she was before the accident.

So she had 3 totally pointless, agonising years at the care home (at enormous expense!) If I could have pressed a button to put her out of her misery I would have done, because that's what it was - total misery (and worse.)

Mum had made a Living Will, years before. This was her worse nightmare - everything she didn't want.
 

MrsV

Registered User
Apr 16, 2018
187
Northamptonshire
My mum got 'bad' instantly after a fall landed her in hospital. I had to move her immediately to a care home - previously she was at home alone and was 'early stages' getting worse but no major problems. She had a quality of life then.

Once in the care home her life was over really. She was there for 3 years before she died but all that time I wished for a dose of pneumonia (or a lightning bolt) to give her a quick end. As it was, she was perpetually unhappy, anxious, confused, aggressive, non-compliant and lived almost entirely in her room, totally bewildered. It took me a week or two after she went in to realise she was never coming back. It was a shock as she'd changed so much from the way she was before the accident.

So she had 3 totally pointless, agonising years at the care home (at enormous expense!) If I could have pressed a button to put her out of her misery I would have done, because that's what it was - total misery (and worse.)

Mum had made a Living Will, years before. This was her worse nightmare - everything she didn't want.
Hi Jaded N Faded,
I agree with you totally. My Mum is in a CH and is like a zombie now, zero quality of life, just stares into space, cant communicate, doesn't recognize any of her family, doubly incontinent. Its like gods waiting room in those places. I certainly wouldn't want to end up like that, I'd rather do what they do in Holland and take the civilized option; at a time and place of my choosing, with my loved ones gathered around to say goodbye. more dignified. I realise this may not be popular with a lot of people on here.
 

Janey B

Registered User
Aug 15, 2019
39
Northwest
Oh how I empathise with you all
Retired May 2019 and OH diagnosed September the same year.
All our plans and dreams shattered. Unable to function properly for a while “had to” get organised (distraction techniques) POA , Wills, Attendance allowance, advanced directives, planning permission for house alterations.
Then the New Year arrived such a low, usual jobs of booking holidays and planning the year ahead seemed so hopeless.
Then the pandemic arrived, lockdown and the opportunity to make the best of the time we had left “gone”.
I love him dearly but my life is SO BORING I don’t want a slow gradual decline for him or for me, it will be a living hell for us both.
I know he wouldn’t want it either, he has said in the early stages “it’s time to go now” lately he does not know anything is wrong.
Don’t know how we will go on, as the only release is death and how can I wish for that
At times it’s unbearable, how people go on with such commitment and caring I don’t know.
 

kindred

Registered User
Apr 8, 2018
2,493
I volunteer at the nursing home where my husband died. For years I struggled as sole carer. It was hell. I know we see patterns and similarities in our people with dementia, but they are, in essence, insane. For one person to care in this situation for years is beyond what we should ever have to do. But for a team of skilled folk in a nursing home it is all in a days work.
Once, one if the district nurses who came to see my husband said, have you thought of residential? And I said what the social services had said to me, that who did I think was going to take care of my husband if I could not, The district nurse said from what she had seen, going into a care or a nursing home should be regarded as a healthy option for situations like this. I found that so comforting.
with love, Kindred
 

Illy

Registered User
May 11, 2013
35
Manchester
Thank you all for your honesty. It seems so wrong to be wishing that something will come along to bring a swift end to this situation, and so good to hear that others are wishing the same. @margherita you are so right that it’s been a lockdown before COVID19 lockdown, or a double lockdown with it! I go to bed hoping that something will bring a dramatic change in the night, and then am disappointed in the morning at having to face yet another day. Maybe a day will come when I will look back and wonder why I didn't appreciate having this time, but at the moment it feels like an imprisonment for a crime I’m pretty sure I haven’t committed!
I agree, it's such a relief that others feel the way I do. I had convinced myself I was just a selfish, evil person. My prison is the kitchen, which I share with the dog. The lounge is his and our bedroom is his and I have the spare room - he even threw out the sofa so I couldn't sit in the lounge. After 25 years I feel I don't even know this person now. Lockdown has made absolutely no difference to us, it's been just the same as usual - for the last 5 years.
 

Hazara8

Registered User
Apr 6, 2015
512
I think one has to be very careful in all of this. The desire for an ending to what can be almost impossible to realise - the cure for dementia and thus the state of things which we outline here in our individual cases - is wholly understood by those who have trodden that path or are still doing so. After all, when we fall ill and need professional advice or professional cure, we turn to our GP and then perhaps to the surgeon who is going to correct the problem and all being well, return to normality and our life.
With dementia the " patient " falls to your care because there is no cure. The illness moves forward and presentations likewise with everything that they set before you as challenges, ranging from the moderate to the extreme - this being ungoverned and often unpredictable, perhaps violent and psychologically draining and painful, an unremitting onslaught on your capacity to sustain what is an endless prospect of one directional commitment, minus respite and a forfeiting of a right to live the only life you have with at worst a fleeting degree of joy to claim as your own.

No surgeon to repair the patient and restore all to as before. Just you and the loved one you Care for. So one day you leave the room, closing the door behind you and you get on with your life.
But of course you don't. Because there is just you and the one you Care for, and unless you abandon them there is no option. And despite the hostility or the obliviousness or the endless "nursing' and perpetual topsy turvy daily routine and all the rest of it, the PWD remains innocent despite all of that and whatever we might think. Therein lies the dilemma. It is the dementia we dearly wish to abandon but it is housed in the person we know and love and cannot separated. And most important of all, nobody can know what that person is feeling or indeed thinking at any given moment. We have cognition, we can feel frustrated or wasted or cheated or helpless or desirous of " freedom" from this unwanted burden, this unasked for vocation of tedious, perpetual, exhausting nurturing without so much as a " thank you" but moreso a rebuke and no prospect of a change or a ray of recuperating light! What do they feel? Do their tears go unseen? Does that tantrum actually hide a plea for help? Does that once so articulate, fun loving, kind and compassionate soul deserve any of this? Does that kind and compassionate one who is Caring deserve any of this?
There is no cure at the moment and medication alleviates temporarily. So we have to look at the one thing that we possess over and above all else. Our humanity. And that must apply to all, not just of our choosing. It must apply to the one who has become the Carer as much as he or she being cared for. And once any notion of a wish for things to come to an end clouds the mind, then we must look to ourselves and ask why we might defer outside help or why we feel a sense of betrayal or defeat.

The dementia imposter cannot make claim to your life nor welfare because you have one life and like all lives, it is sacred. It has claimed one life already and you can do so much to Care for that loved one it inhabits and no more. Then others can provide continuity of Care in a manner which sustains that Care.
The love and compassion which resides in the heart applies to us all. Even dementia cannot taint that.
 

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