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I don't want to be a carer any more

marionq

Registered User
Apr 24, 2013
6,184
Scotland
@maryjoan I really feel for you. I remember we corresponded earlier this year as we were in a similar position. Things have moved on here and my husband is in hospital under section 3 of the mental health act and will be moving to a care home once he is stable. He's only just 62. It's difficult to know when you can't care for someone anymore, but the crunch point came for me at the end of May when a very good friend (someone who had known me for 40 years) told me that I was ill and couldn't go on. She lives more than 300 miles away and used to visit regularly to offer support. We have no family or friends locally as we moved here just before we got married 5 years ago. I knew that I was depressed and anxious, I knew that I couldn't sleep and I knew that I was drinking too much wine, but it took someone else to tell me just how much my mental health was suffering.
In the end I couldn't keep my husband safe, reasonably healthy and happy. He was constantly out of the house talking to strangers, getting too close (and on a couple of occasions being pushed over), he often refused his meds, he hadn't washed at all for about 6 months. He was very confused and anxious, had sudden angry outbursts and couldn't follow conversations. He tended to hit inanimate objects rather than me, but I didn't feel entirely safe. After an incident at the day centre, I was asked by his CPN if I wanted him to have a mental health assessment and I said yes. That resulted in him being sectioned.
Sometimes, I feel guilty because I requested the assessment, but then I remind myself that I was at the point of walking out and there was no-one else to care for him. It was never going to end well. He could have been assaulted or mugged on the street, he could have been seriously hurt. I simply couldn't keep him safe. Now there is a whole team of people giving him his meds covertly, persuading him to wash and looking after his needs. And at the end of their shifts they go home for a well earned rest. That's something that carers never really get.
I know that this isn't my husband's fault and nor is it mine. Dementia is a brutal disease, different in every case and all carers do their best in an impossible and distressing situation. We care out of love and loyalty, but I think that one of the reasons that we often go on caring for too long is because over time we accept and adapt to the way our lives have changed. One of my brothers died in February and I just accepted that I couldn't go to the funeral as I couldn't leave my husband overnight. I accepted the fact that my husband needed to know where I was all the time, that I couldn't work, or visit friends. Our lives have changed beyond recognition over the last 4 years, but it became the "norm." I hope that you are able to find a way out of your situation. There comes a time when we can do no more and someone else, or the state has to step in.
I'm very moved by all of these posts and have another aspect to mention which has come as something of a shock. Since my husband died a month ago my daughters have arranged an astonishing number of outings and events for me which have generated a serious amount of photographs. I barely recognise the elderly white haired woman I have become! My age has crept up on me unnoticed while I was caring. I haven't worn a dress for years because we couldn't socialise after John lost his mobility.

Not too sure how I'm going to deal with all of this but it has given me a lot to think about.
 

White Rose

Registered User
Nov 4, 2018
679
Me too. I have been married for 52 years to a man who has always been a control freak and now that he has MSA with dementia he is even worse. He thinks he is fine even through he can't find his way around the house, can barely walk, sees people who aren't there and undresses in inappropriate places among a thousand other small and large things. I was 17 when we married and he was 28. Now I feel that am wasting my life looking after someone who rarely speaks to me except to demand something or complain about something. Like you I am lonely and frustrated. I can't afford to put him in care and he refuses to go to respite as there is "nothing wrong" with him and it is my duty as his wife to look after him. After 7 years I am almost done.
Hello Avis, I do hope you manage to get some care sorted, it seems like after all those years of marriage to a controlling man you really do deserve to enjoy your later years. Maybe you should put your foot down and tell him he's got to go to respite, tell him a white lie that you're ill!
 

White Rose

Registered User
Nov 4, 2018
679
I'm very moved by all of these posts and have another aspect to mention which has come as something of a shock. Since my husband died a month ago my daughters have arranged an astonishing number of outings and events for me which have generated a serious amount of photographs. I barely recognise the elderly white haired woman I have become! My age has crept up on me unnoticed while I was caring. I haven't worn a dress for years because we couldn't socialise after John lost his mobility.

Not too sure how I'm going to deal with all of this but it has given me a lot to think about.
I've been thinking the same, I feel I've aged just in the last couple of years. Your daughters sound so thoughtful in arranging outings and events for you.
 

maryjoan

Registered User
Mar 25, 2017
1,513
South of the Border
A question he asked me last week, drove me to phoning the Samaritans as the reality of our situation piled in on me......

What was the question?

Simple.....

" Will I still get my pocket money when you are dead?"
 

katydid

Registered User
Oct 23, 2018
58
This thread is so familiar I feel I am walking in your footsteps my husband of 50 years is 5 or6 years into Dementia Now And yet at times he is back with me
As you all know this is heartbreaking
We reached a position where he could not stand walk and had two carers coming 4 times a day
He and I were up all night as he did not sleep
The carers were continually changing and often it could be 6. Yes. 6 different people in one day
Unsurprisingly this did not work. They did not know his needs he did not know or understand them especially at bedtime
I explained over and over again sore arm. Can’t stand doesn’t understand
Eventually my family and his CPN stepped in to offer respite. Good you might think? 7 months later I was still waiting
So I did it myself. I rang homes. I liked op CQC scores. I hunted for beds. I rang Social Services and rang. And rang. And rang.......... Finally at end of my tether I went to SW office and pinned a senior s/w. I then did his job for him by calling the commissioners for care and getting to produce a purchase order for care
The commissioner can do this immediately in the circumstances above, although it’s not usually the carer who instigated this action. You DO NOT. Have to wait for next meeting
So far so good. Next day informed by S/W no bed. Rang care home yes bed. S/w ok will action. Next day care home awaiting s/w call. !!!
I rang Senior s/w. to whom I had spoken.
he was On holiday!!!!
I rang care home. They rang commissioners and S/w........... I think a few more calls etc., but I am too befuddled, disbelieving to remember
How I wish they had been emails
Upshot. I took Len myself. With a taxi and great difficulty to the home with a nursing home bed and he was admitted for “respite care. As an emergency with a view to permanency due to carer breakdown “. This is the important phrase

we have no money and no savings so apparently NO cost to us the nursing home accepts social work payment agreements and has no top up
However he has been there for 8 weeks now and I have had no contact from any s/w despite ringing and writing so have no idea how permanent this is
Apparently new computers are causing delays!!
This is all totally true and now not only the guilt and heartbreak of leaving my lovely husband, but the uncertainty of the future
I cannot believe this lack of organisation and communication exists in this day and age

and finally, Len is now in hospital with a broken hip! Somehow, this Dementia specialist nursing home could not keep him safe
I am sorry for the length of this post, you could not make it up!
 

jenniferjean

Registered User
Apr 2, 2016
773
Basingstoke, Hampshire
This thread is so familiar I feel I am walking in your footsteps my husband of 50 years is 5 or6 years into Dementia Now And yet at times he is back with me
As you all know this is heartbreaking
We reached a position where he could not stand walk and had two carers coming 4 times a day
He and I were up all night as he did not sleep
The carers were continually changing and often it could be 6. Yes. 6 different people in one day
Unsurprisingly this did not work. They did not know his needs he did not know or understand them especially at bedtime
I explained over and over again sore arm. Can’t stand doesn’t understand
Eventually my family and his CPN stepped in to offer respite. Good you might think? 7 months later I was still waiting
So I did it myself. I rang homes. I liked op CQC scores. I hunted for beds. I rang Social Services and rang. And rang. And rang.......... Finally at end of my tether I went to SW office and pinned a senior s/w. I then did his job for him by calling the commissioners for care and getting to produce a purchase order for care
The commissioner can do this immediately in the circumstances above, although it’s not usually the carer who instigated this action. You DO NOT. Have to wait for next meeting
So far so good. Next day informed by S/W no bed. Rang care home yes bed. S/w ok will action. Next day care home awaiting s/w call. !!!
I rang Senior s/w. to whom I had spoken.
he was On holiday!!!!
I rang care home. They rang commissioners and S/w........... I think a few more calls etc., but I am too befuddled, disbelieving to remember
How I wish they had been emails
Upshot. I took Len myself. With a taxi and great difficulty to the home with a nursing home bed and he was admitted for “respite care. As an emergency with a view to permanency due to carer breakdown “. This is the important phrase

we have no money and no savings so apparently NO cost to us the nursing home accepts social work payment agreements and has no top up
However he has been there for 8 weeks now and I have had no contact from any s/w despite ringing and writing so have no idea how permanent this is
Apparently new computers are causing delays!!
This is all totally true and now not only the guilt and heartbreak of leaving my lovely husband, but the uncertainty of the future
I cannot believe this lack of organisation and communication exists in this day and age

and finally, Len is now in hospital with a broken hip! Somehow, this Dementia specialist nursing home could not keep him safe
I am sorry for the length of this post, you could not make it up!
This is horrific. I feel so sorry for you.
 

maryjoan

Registered User
Mar 25, 2017
1,513
South of the Border
This thread is so familiar I feel I am walking in your footsteps my husband of 50 years is 5 or6 years into Dementia Now And yet at times he is back with me
As you all know this is heartbreaking
We reached a position where he could not stand walk and had two carers coming 4 times a day
He and I were up all night as he did not sleep
The carers were continually changing and often it could be 6. Yes. 6 different people in one day
Unsurprisingly this did not work. They did not know his needs he did not know or understand them especially at bedtime
I explained over and over again sore arm. Can’t stand doesn’t understand
Eventually my family and his CPN stepped in to offer respite. Good you might think? 7 months later I was still waiting
So I did it myself. I rang homes. I liked op CQC scores. I hunted for beds. I rang Social Services and rang. And rang. And rang.......... Finally at end of my tether I went to SW office and pinned a senior s/w. I then did his job for him by calling the commissioners for care and getting to produce a purchase order for care
The commissioner can do this immediately in the circumstances above, although it’s not usually the carer who instigated this action. You DO NOT. Have to wait for next meeting
So far so good. Next day informed by S/W no bed. Rang care home yes bed. S/w ok will action. Next day care home awaiting s/w call. !!!
I rang Senior s/w. to whom I had spoken.
he was On holiday!!!!
I rang care home. They rang commissioners and S/w........... I think a few more calls etc., but I am too befuddled, disbelieving to remember
How I wish they had been emails
Upshot. I took Len myself. With a taxi and great difficulty to the home with a nursing home bed and he was admitted for “respite care. As an emergency with a view to permanency due to carer breakdown “. This is the important phrase

we have no money and no savings so apparently NO cost to us the nursing home accepts social work payment agreements and has no top up
However he has been there for 8 weeks now and I have had no contact from any s/w despite ringing and writing so have no idea how permanent this is
Apparently new computers are causing delays!!
This is all totally true and now not only the guilt and heartbreak of leaving my lovely husband, but the uncertainty of the future
I cannot believe this lack of organisation and communication exists in this day and age

and finally, Len is now in hospital with a broken hip! Somehow, this Dementia specialist nursing home could not keep him safe
I am sorry for the length of this post, you could not make it up!
I had a phone call from Carers UK on Friday about the possibility of filming for the BBC with regard to being a carer - I have been on Breakfast TV before - hence the call.
IF the producer decides to go ahead and send a crew here - I thought to my self.......
DO I TELL IT AS IT REALLY IS? ( as you have done here ....) or

DO I TELL THEM THE NICE SANITISED VERSION THAT THEY WANT TO HEAR?

Two different things, I think you will agree.

It is horrendous in this day and age that carers are being treated like this, and the people they care for as well.

What I find totally unacceptable is that we are expected to take on roles that we are totally unqualified to do - so where is the 'wellbeing' they talk about in that??
 

kindred

Registered User
Apr 8, 2018
2,524
I had a phone call from Carers UK on Friday about the possibility of filming for the BBC with regard to being a carer - I have been on Breakfast TV before - hence the call.
IF the producer decides to go ahead and send a crew here - I thought to my self.......
DO I TELL IT AS IT REALLY IS? ( as you have done here ....) or

DO I TELL THEM THE NICE SANITISED VERSION THAT THEY WANT TO HEAR?

Two different things, I think you will agree.

It is horrendous in this day and age that carers are being treated like this, and the people they care for as well.

What I find totally unacceptable is that we are expected to take on roles that we are totally unqualified to do - so where is the 'wellbeing' they talk about in that??
Yes, please tell it like it is. Once upon a time I would say don't because it will terrify people at the early stages, but now I think the time has come. Please, for all of us. Thank you. with love, Geraldinexxx
 

kindred

Registered User
Apr 8, 2018
2,524
Hope this question sits OK on this thread. Do any of us have any experience we can share about using independent social workers? how to get hold of, what they charge, what they do, how they help etc?
Thank you, warmest, Kindred.
 

silver'lantern

Registered User
Apr 23, 2019
166
Please be our voice! tell it as it is. I certainly wouldn't be doing this job if I had understood all that is to come. But there is no where I can say that, except on here! I know it's going to get worse, but that doesn't make any of it easier to live at the moment. In fact it makes it harder. As I know it's going to get worse with no or little support. Some days I just want to pack a bag and shut the door.....whos case and which door I can't quite work out.
 
Last edited:

RosettaT

Registered User
Sep 9, 2018
514
Mid Lincs
You need to tell it as it is maryjoan. They may well chop & edit what is said but hopefully you & they will get the message out there. I wrote to my MP who is standing in the next election and asked how she was going to support the social care greenpaper if she is elected and suggested she read some threads on this forum to get a picture of what life is really like for carers.
 

Whisperer

Registered User
Mar 27, 2017
231
Please, please please tell it warts and all. It seems the only chance of changing things. Being polite just gets you a pat on the head then ignored. Barbara Windsor pictured having tea at number ten with the PM. Promises made in his door step arrival speech. Translation please. Oh I see another review, then a report in years to come which will not be acted on. In my day called “ kicking the can down the road into the long grass”. If a moderator wants to hit the delete button just stop for a moment and think. Is any of the above factually incorrect? I think not. Delete my comments and you become part of operation ignore and sanitise. Is that the role you want for your organisation. It is time to speak up, even if it may upset some people in their detached safe zones. Go for it, at least you will have tried.
 

White Rose

Registered User
Nov 4, 2018
679
I had a phone call from Carers UK on Friday about the possibility of filming for the BBC with regard to being a carer - I have been on Breakfast TV before - hence the call.
IF the producer decides to go ahead and send a crew here - I thought to my self.......
DO I TELL IT AS IT REALLY IS? ( as you have done here ....) or

DO I TELL THEM THE NICE SANITISED VERSION THAT THEY WANT TO HEAR?

Two different things, I think you will agree.

It is horrendous in this day and age that carers are being treated like this, and the people they care for as well.

What I find totally unacceptable is that we are expected to take on roles that we are totally unqualified to do - so where is the 'wellbeing' they talk about in that??
Hi maryjoan - I agree with everyone here - TELL IT LIKE IT IS. I am horrified reading about the problems people have in getting even just some respite care. I realise I'm hugely lucky in that my partner has a very good pension so I can have private carers or send him for day care. I'm reluctant to try respite overnight care yet but I guess it will come to that because like you I just want my life back, just to be able to go and see my daughter in London if I want to, just to go out with friends, simple things non-carers take for granted. From reading what people write on TP it seems that we are the forgotten members of society, unless we shout and yell and scream for help we are just left alone to cope with this horrendous disease. My partner gets his meds but other than that there is no contact with the GP or any other services regarding his Alzheimer's. I imagine the majority of carers of PWD are older and therefore have their own health problems and frailty of age, how on earth can they be expected to deal with all the horrendous issues that come with caring for a PWD. Then there are the younger ones caring for parents when they have their own kids/jobs, etc. Let us know when the programme airs, will be interesting to see how it pans out. About time a bright and brilliant spotlight was shone on the issue of dementia, what carers have to deal with and how little help is available.
 

Justmary

Registered User
Jul 12, 2018
87
West Midlands
Please tell it as it is. I wish they would read some of the posts on TP and start realising how difficult it is for everyone involved with this awful disease.
 

Violetrose

Registered User
Jul 18, 2017
68
Didsbury Manchester
I was pondering this scenario. I divorced my ex husband because of unreasonable behaviour. His behaviour was due to a mental illness but everyone supported my decision recognising that neither I nor my children were safe with him.

If that mental illness was dementia/Alzheimer’s would people have recognised the need to keep me safe? Or are you sacrificial?
I have thought this on many occasions. If the behavior that my husband displays was not due to Alzheimer's he would get very different care. He would be diagnosed with a serious and enduring mental health problem. He would fit the criteria for being Sectioned under the Mental Health Act as he is a danger to himself and to others. He would automatically get NHS care. Social Services and Mental Health Services world undertake a risk assessment. But get a diagnosis od Alzheimer's and you get none of that. As carers we are expected to carry on quietly caring for someone who is displays all the symptoms of a serious mental health problem. It is utterly discriminatory and Ageist.
 

Roseleigh

Registered User
Dec 26, 2016
325
I'm reluctant to try respite overnight care yet but I guess it will come to that because like you I just want my life back, just to be able to go and see my daughter in London if I want to, just to go out with friends, simple things non-carers take for granted.
I did a weeks respite for exactly the same reason: to have a weekend visit to daughter (plus GS) in London !
I felt so free, it reminded me of the feeling I got when my kids (three in all) were small and I got away alone, rare as there was usually at least one in tow in those days.;)
It gives you a chance to try out care homes too for when the time comes for permanent care.
 

Moggymad

Registered User
May 12, 2017
500
Hope this question sits OK on this thread. Do any of us have any experience we can share about using independent social workers? how to get hold of, what they charge, what they do, how they help etc?
Thank you, warmest, Kindred.
In case your question isn't answered I remember @Normaleila mentioning using an independent social worker.
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Though not a carer myself, I echo other comments that it's important to Tell it as it really is.
@kindred - not the same as paying an independent social worker, but my sister has been in touch with an ex-social worker who advised her to leapfrog her allocated social worker and team, and write to the Director of Adult Services regarding the unsatisfactory level of "help" to date from his department. We're still drafting the letter, which includes a clear statement that she is not coping now, is close to collapse, and she will not be willing to carry out any further care for her husband beyond a certain date next year, even if she has not had a complete nervous breakdown by then.

Her GP has confirmed that SS only have the capability (capacity) to deal with crisis mode. So the letter is waving that flag, and building another layer in the paper trail. Following a visit yesterday by the Mental Health team (who are very supportive) a mental capacity test by them and 'functionality' test by occupational therapy are being arranged for the coming weeks, to help prove to SS that my BIL needs full-time care and would not be safe left alone (SS's SW seemed to think he could manage 'independent living' with 4 carers!). She feels that progress is being made, even if it's incredibly slow.
 

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