• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Who cares about my Deprivation Of Liberty?

Illy

Registered User
May 11, 2013
35
Manchester
One should not have to be careful when voicing one's feelings, for fear of being rebuked. I understood this was one of the purposes of this forum.
 

PalSal

Registered User
Dec 4, 2011
908
Pratteln Switzerland
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
@Dear Kindred, As I am approaching making this decision to take up a place in the local village carehome, I deeply appreciate your share. I am also rereading Contented Dementia , which has an entire section devoted to care homes. Of course , as with many things with this book, it has a rather unrealistic recommendations in some of its suggestions. Penny Garner states that in her experience over numerous years in the field of dementia "that there comes a stage in almost every case where it is absolutely imperative for the client's well being that they move to a nursing home." That is quite comforting to me, after living so long with the long goodbye. Now more than 50% of my married life.
 

kindred

Registered User
Apr 8, 2018
2,507
@Dear Kindred, As I am approaching making this decision to take up a place in the local village carehome, I deeply appreciate your share. I am also rereading Contented Dementia , which has an entire section devoted to care homes. Of course , as with many things with this book, it has a rather unrealistic recommendations in some of its suggestions. Penny Garner states that in her experience over numerous years in the field of dementia "that there comes a stage in almost every case where it is absolutely imperative for the client's well being that they move to a nursing home." That is quite comforting to me, after living so long with the long goodbye. Now more than 50% of my married life.
Oh so good to hear from you and what a beautiful post. I so agree. This progression is never normally referred to as a healthy or necessary progression and we are left to face the decision against enormous guilt. Thank you so very much for this. with love, Geraldine
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,836
Nottinghamshire
One should not have to be careful when voicing one's feelings, for fear of being rebuked. I understood this was one of the purposes of this forum.
It is an important part of this forum and we are here for all. It’s a place where people can say how they feel without having to worry about upsetting their friends or family. I hope you will continue to share @Illy with people who know how it is.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,250
England
One should not have to be careful when voicing one's feelings, for fear of being rebuked. I understood this was one of the purposes of this forum.


I agree with @Bunpoots, having somewhere to come and just let of steam if you want to is what it’s all about. We all have different levels of toleration and thinking back to my time of caring for my husband I too lost it with our CPN.

My husband needed to be out everyday and we had visited every town, every garden centre within a 50 mile radius of home dozens of times at each one over 7 years. I mentioned to his CPN that I had run out of places to take him. Her reply was don’t worry he can’t remeber them so you can take him to the same one every day. I screamed at her asking what about me, don’t I count? When I think about it I was been deprived of my liberty and even the professional was not seeing the bigger picture.

So please keep posting, we are here to listen when needed, offer advice and share experiences,
 

Kimm

New member
Aug 4, 2020
5
Hello, I read your post with interest as I recently moved in with my elderly mother who has dementia, among other health issues, and have experienced situations and thoughts I had not been able to prepare for prior to moving in. I very much accept that my situation is different from those whose partner is a dementia sufferer, however I would like to offer the following for your thoughts.

While we usually pledge to stick with the one we love through sickness and in health (whether we are married or not) we may not be prepared for what that will actually look like and how it will impact on us day after day.

As with anyone who has any type of lack of mental capacity, we should strive to always act in their best interests. Yet, we must not neglect our own health and wellbeing.

I think you have hit the nail on the head by saying "not accepting my loss of liberty". It sounds as though you have accepted (consciously?) that you must care for your other half 24/7 but that you haven't accepted the loss of liberty that goes with it. My question is: why do you feel that is your only option? I believe most of your needs could in fact be met by meeting (or making new) friends, attending thought-provoking and stimulating talks or learning online, and even finding an activity that will give you almost as much enjoyment and endorphins as a physical relationship. What do you think? The closeness and perhaps emotional support that you may crave is clearly trickier to tackle but it is situations like these that test us and help us look deeper into ourselves as human beings and reach out to friends, family and professionals when we recognise we need them more than ever.

Please speak to your GP or another professional to discuss your situation, if you haven't already, as help is out there but you have to make the first contact! Know that you're certainly in the right place to discuss your experiences and thoughts and should not feel that you have to accept going through such a tough situation alone. So glad you joined the forum and hope it really helps :)
 

Olliebeak

Registered User
Sep 13, 2014
146
Buckinghamshire
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!
So good to read all your posts and feel I am not the only one - I totally empathise with @None the Wiser in waking up to a sinking feeling that nothing has changed.

A friend suggested to me I should stop giving my OH his Donepezil. She took the decision to stop her mother taking it when she (mother) said, in a lucid moment, that knew what was happening to her and she didn’t want it to drag on. Bit of a drastic step?
 

kindred

Registered User
Apr 8, 2018
2,507
Hello, I read your post with interest as I recently moved in with my elderly mother who has dementia, among other health issues, and have experienced situations and thoughts I had not been able to prepare for prior to moving in. I very much accept that my situation is different from those whose partner is a dementia sufferer, however I would like to offer the following for your thoughts.

While we usually pledge to stick with the one we love through sickness and in health (whether we are married or not) we may not be prepared for what that will actually look like and how it will impact on us day after day.

As with anyone who has any type of lack of mental capacity, we should strive to always act in their best interests. Yet, we must not neglect our own health and wellbeing.

I think you have hit the nail on the head by saying "not accepting my loss of liberty". It sounds as though you have accepted (consciously?) that you must care for your other half 24/7 but that you haven't accepted the loss of liberty that goes with it. My question is: why do you feel that is your only option? I believe most of your needs could in fact be met by meeting (or making new) friends, attending thought-provoking and stimulating talks or learning online, and even finding an activity that will give you almost as much enjoyment and endorphins as a physical relationship. What do you think? The closeness and perhaps emotional support that you may crave is clearly trickier to tackle but it is situations like these that test us and help us look deeper into ourselves as human beings and reach out to friends, family and professionals when we recognise we need them more than ever.

Please speak to your GP or another professional to discuss your situation, if you haven't already, as help is out there but you have to make the first contact! Know that you're certainly in the right place to discuss your experiences and thoughts and should not feel that you have to accept going through such a tough situation alone. So glad you joined the forum and hope it really helps :)
Thank you, that is very thought provoking. I am the far side of this now and can look back with more clarity at the hell I endured being sole carer for OH. I would not have had the energy to reach out to groups or do courses. The one group I did attend, a lovely little church group, I could only attend for a short time as in my absence my OH would set about destroying the house and I would come back to a radiator pulled off the wall or the duvet stuffed down the toilet. I could not recharge my batteries. I am heartbroken at the loss of a wonderful man, the love of my life, but I am glad it is over. I wonder if any of us really recover. Warmest, Kindred.
 

imthedaughter

Registered User
Apr 3, 2019
506
So good to read all your posts and feel I am not the only one - I totally empathise with @None the Wiser in waking up to a sinking feeling that nothing has changed.

A friend suggested to me I should stop giving my OH his Donepezil. She took the decision to stop her mother taking it when she (mother) said, in a lucid moment, that knew what was happening to her and she didn’t want it to drag on. Bit of a drastic step?
I doubt the donepezil is actually prolonging life in any meaningful way - it is supposed to slow down the decline but most people with dementia die of something else anyway.

My question is: what if you weren't there? Can they look after themselves? Who would look after them? Social services have a duty of care. If a carer is at breakdown they have to step in.

I lived too far away from dad for this to become a problem but I put him into residential before I thought he was too bad, but we didn't have a lot of other options. Even I thought it was temporary. In fact it was good timing as he's declined but has been under the watch of the home - this whole 'bad enough/not bad enough' debate has to be put aside and should take unpaid carers into account.
 

Illy

Registered User
May 11, 2013
35
Manchester
I agree with @Bunpoots, having somewhere to come and just let of steam if you want to is what it’s all about. We all have different levels of toleration and thinking back to my time of caring for my husband I too lost it with our CPN.

My husband needed to be out everyday and we had visited every town, every garden centre within a 50 mile radius of home dozens of times at each one over 7 years. I mentioned to his CPN that I had run out of places to take him. Her reply was don’t worry he can’t remeber them so you can take him to the same one every day. I screamed at her asking what about me, don’t I count? When I think about it I was been deprived of my liberty and even the professional was not seeing the bigger picture.

So please keep posting, we are here to listen when needed, offer advice and share experiences,
Thanks, I know I can vent on here, I was just taken aback by being told by one post "that one has to be careful" when people were expressing how they felt. It felt nothing short of a rebuke, perhaps I was being oversensitive.
 

Duggies-girl

Registered User
Sep 6, 2017
2,090
There are some really heartfelt and very honest posts on this thread and I am sure that it comes as a relief to many of us that our secret thoughts are often shared by others and are in fact quite natural I don't know what the answer is but I now realise that all the encouragement I got from other people to carry on and the well meaning phrase that I often heard 'you are doing so well' and the real killer phrase that I was often told 'if it wasn't for you, he wouldn't be here now' were of absolutely no help to me at all. I am not really sure who they helped. I remember my cousin telling me 'let's hope he makes his 90th birthday' this was a year or so before he died and I remember thinking 'can I do that, can I really do another year' but I did and I actually tried to get him there at huge cost to myself.

If only someone had took me aside and said 'you can't do it anymore' especially when dad was in hospital and should never really have gone home. Perhaps people think they are helping but in reality they are not. I have read @Jaded'n'faded post about her mums last 3 years and I thank god that dad and I was spared that horror.

Onlookers and those with no experience of what carers give up just have no idea or understanding of what life is like for carers and once the caring has ended there is no acknowledgement of what has been endured and the carer is just supposed to just become like everyone else again which as far as I can see is all but impossible because we are not like everyone else anymore. I know I am not, I am a different person now.

I am not saying that I wish I hadn't looked after dad, I just wish that I hadn't had to.
 

kindred

Registered User
Apr 8, 2018
2,507
There are some really heartfelt and very honest posts on this thread and I am sure that it comes as a relief to many of us that our secret thoughts are often shared by others and are in fact quite natural I don't know what the answer is but I now realise that all the encouragement I got from other people to carry on and the well meaning phrase that I often heard 'you are doing so well' and the real killer phrase that I was often told 'if it wasn't for you, he wouldn't be here now' were of absolutely no help to me at all. I am not really sure who they helped. I remember my cousin telling me 'let's hope he makes his 90th birthday' this was a year or so before he died and I remember thinking 'can I do that, can I really do another year' but I did and I actually tried to get him there at huge cost to myself.

If only someone had took me aside and said 'you can't do it anymore' especially when dad was in hospital and should never really have gone home. Perhaps people think they are helping but in reality they are not. I have read @Jaded'n'faded post about her mums last 3 years and I thank god that dad and I was spared that horror.

Onlookers and those with no experience of what carers give up just have no idea or understanding of what life is like for carers and once the caring has ended there is no acknowledgement of what has been endured and the carer is just supposed to just become like everyone else again which as far as I can see is all but impossible because we are not like everyone else anymore. I know I am not, I am a different person now.

I am not saying that I wish I hadn't looked after dad, I just wish that I hadn't had to.
Thank you, that is so interesting. Could you say more about being a different person? I so agree. I think I gave all my courage to the situation and for a long while after my husband died I was frozen and trying to overcome timidity. As you so well say, no acknowledgement of what we had endured. I had I think become an object of pity locally which I loathed. Pity sucks but people so like to rub noses in it. I am slowly becoming less defensive. I volunteer in the wonderful nursing home where my husband died and find that slowly I am coming back to life, but not as the same person. Thank you for raising this.
With love, Kindred
 

Duggies-girl

Registered User
Sep 6, 2017
2,090
Thank you @kindred I know I am different to before. After dad died a group of friends (all female) invited me away for a weeks holiday. I have been away with them many times before but not in recent years. I have very good memories of those trips with them and I would have gone. Of course it didn't happen because of the lock down. I will maybe go with them next year but I won't be sharing a room like I did before. I need my own space and the thought of sharing a room fills me with horror. I would like to go with them but on my own at the same time. It is an activity holiday and not something my husband has ever been interested in which is why I go with this group of friends. I will be part of the group but on my own at the same time. I was never like that before. Perhaps it is timidity or maybe I just want someone to go with without the constant need to mix.

I know what you mean about being an object of pity which is why I used to be annoyed whenever I received praise for doing so well. I felt like it was being given to bolster me up so I would continue when what I really wanted was to talk about how it really was. Nobody wanted to talk about that, it was like it was taboo to vent my real feelings. The only person who I could really talk to about it who actually listened was my husband who was helping me and already knew how it was.

I thought the world of dad and I am working on remembering him from before the dementia because he was always so truly lovely. Dad died and we went straight into lock down and now I am dealing with all the legalities, probate, etc, clearing and selling the house and unhelpful relatives when all I want is a bit of peace and quiet. I spend a lot of time in dads house because it gives me a kind of closeness to him and I need to wean myself from this but in my own time.

Thank god we have talking point.
 

White Rose

Registered User
Nov 4, 2018
679
This is an interesting thread it really throws up the dilemma of wanting to care for our loved ones but not if it's at the cost of our own mental and physical welfare. When my partner is being difficult I try reminding myself that it's not him it's the disease and he didn't invite it in. He would be horrified if he knew what his behaviour was like and what he has become thanks to this horrendous disease. So sometimes I do wish an end would come, but to release him from the disease as much as to release myself from the burden of care, because I don't want him to have to go into a care home and I don't want to see him reach stage 7, stage 6 is bad enough.
Occasionally when he's had a really furious outburst he'll come back to me and say he's sorry. I feel terribly sorry for him really. But it's a real strain being a carer for a PWD and I think one of the most difficult things to deal with is the spiral of deterioration. So you've just figured out how to deal with one situation or accepted one level of care when another downward step comes along and you've got to adapt again. In 4 1/2 years I've been through the usual rollercoaster of emotions and the only way I can deal with it now is by having carers in so I can work part time and occasional respite so I can have a life of my own. But I realise I'm lucky that we have the funds to pay for outside care.