• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

I don't want to be a carer any more

MrsDoyle

Registered User
Mar 28, 2019
61
East Mids
I’ve been reading this post and comments because I’m having a bad week. My OH is not as bad as many on here but is forgetful, repetitive and has bouts of confusion. He’s not thinking things through, like walking the dog on a local field in this weather and not wearing wellies so his new trousers are nigh on ruined- I’ve had issues with the family for not having perfect trews ready for him so I’m always under pressure. To be fair, the family have backed off at the moment ( I think someone has pointed out how much it would cost them if they drove me away. I’m not married to him and have no rights).
It’s like having a toddler which was the part of my children’s lives I struggled with.

Tuesday, after the third time in ten minutes of him questioning my route choice in the car, I answered a bit too quickly and he said that I annoy him too sometimes and it would be nice to live on his own. I’d just taken him on an over three hour round trip just to look at fancy cars for 20mins. Yesterday it was a trip to look at flooded fields...
This last week he’s been talking of a friend leaving his wife but couldn’t remember who told him. He’s started asking others for more info so spreading the rumour. It’s not true!

I get a fair amount of time to myself but the more time I have, the more I dread going home. I’ve suffered from depression in the past and I’m so scared of having a break down. It’s only just over a year since my mum died - I visited her four times a week for hours on end but she was as sharp as a tack right to the end. That’s easier than this already.
We don’t have conversations like we used to and I can’t ask him about his day if someone has taken him out as he can’t remember.
I am scared of the future. Many of you will probably recognise this from your earlier days. I don’t want medication but I’m also scared because I’m a fight or flight person to avoid depression and it’s usually flight. I’d be devastated to do this to him. I have my own house but live with him.
Any coping suggestions welcome.
 

Splashing About

Registered User
Oct 20, 2019
434
Gosh that’s hard @MrsDoyle. I was discussing the difference between parents & children and vs partners with a friend today. We both agreed you’d tolerate everything from your children...parents a huge amount but partners could be variable. Having been in a difficult marriage I’m now in a second marriage with very clear boundaries in my head of what will make me leave. But sickness sways this.

It also depends on your history and what you owe someone. Relationships aren’t business transactions but I've realised I was emotionally, physically and mentally bankrupted by my ex husband and this nearly killed me.

I think you always have to look after yourself because you can’t help anyone else if you’re not doing well yourself.
 

MrsDoyle

Registered User
Mar 28, 2019
61
East Mids
Thank you.
We’ve have four brilliant years together but this 5th year has been so hard, with the diagnosis and then a quick dip in his condition. I’ve not been sleeping well so I hope my outlook will improve if I get a decent night’s sleep.
I take my hat off to those who’ve cared for their PWD for years xxx
 

White Rose

Registered User
Nov 4, 2018
679
Thank you.
We’ve have four brilliant years together but this 5th year has been so hard, with the diagnosis and then a quick dip in his condition. I’ve not been sleeping well so I hope my outlook will improve if I get a decent night’s sleep.
I take my hat off to those who’ve cared for their PWD for years xxx
Hi MrsDoyle, sorry to say this is only going to get worse and you've been together such a short time to have this horrible disease rear its ugly head. My partner and I have been together for 17 years, the last 4 have been the 'dementia' years, although signs of it appeared before then. You've got to really love someone to care for them through dementia - either that or you have no choice for financial or other reasons. For your own sanity you'll have to have support in the form of carers, day care, respite or whatever. The constant repetitive questions will drive you nuts, the lack of conversation at home means it's a lonely place, having to help dress, issue instructions on when to shower, brush teeth, having no freedom, the mood swings, having them glued to you all the time, having to do absolutely everything at home, make all the decisions.... ah it's a joy and that's before incontinence starts (I don't have that to deal with yet). So if you're sure you want to go through all that then only coping strategies I've found are keeping a part time job going, having carers in or taking him to the local care home for a few hours and basically just accepting that this is my life at the moment but one day I'll get my own life back!
 

MrsDoyle

Registered User
Mar 28, 2019
61
East Mids
Hi @kindred. I've recommended independent social workers a number of times. When my PWD was first diagnosed we didn't get much help from the social worker. That's when I googled 'independent social worker'. I only did it because I'd heard there were independent social workers who deal with adoption - I guessed that if some specialise in children there might be some who deal with the elderly. Google 'independent social worker' - I've been told I can't name the website here. Once you find it, you can find a social worker in your area and who specialises in Alzheimer's, DOLS or whatever. I emailed 2 late at night and both phoned back the next morning. I had a 30 minute conversation with the first one and chose him. He visited my PWD, wrote a report and explained the options. That was about £400.
He later visited again, wrote another report and confirmed she now needed full time care. He found 2 suitable care homes, arranged for them to visit my PWD, and we then chose one. As it happened my PWD then had a fall and spent 2 nights in hospital. They wanted to discharge her - to an empty house 2 hours from us. Thankfully, miraculously, the independent social worker arranged for the care home to take her a week earlier than planned. On the day, he collected a bag of her things the carer had prepared, collected her from the hospital and drove her to the care home - about 100 miles in total. He stayed with her for several hours, till she calmed down.
The second visit and report, plus arranging the care home and getting her there, cost about another £600.
My PWD is self-funding so I paid from her account.
Finding an independent social worker was the best thing we could have done in the circumstances.
If your PWD is not self- funding there might be less an independent social worker can do but they could guide you through the system and advise you on steps to take. Hope this helps.
 

MrsDoyle

Registered User
Mar 28, 2019
61
East Mids
Hi MrsDoyle, sorry to say this is only going to get worse and you've been together such a short time to have this horrible disease rear its ugly head. My partner and I have been together for 17 years, the last 4 have been the 'dementia' years, although signs of it appeared before then. You've got to really love someone to care for them through dementia - either that or you have no choice for financial or other reasons. For your own sanity you'll have to have support in the form of carers, day care, respite or whatever. The constant repetitive questions will drive you nuts, the lack of conversation at home means it's a lonely place, having to help dress, issue instructions on when to shower, brush teeth, having no freedom, the mood swings, having them glued to you all the time, having to do absolutely everything at home, make all the decisions.... ah it's a joy and that's before incontinence starts (I don't have that to deal with yet). So if you're sure you want to go through all that then only coping strategies I've found are keeping a part time job going, having carers in or taking him to the local care home for a few hours and basically just accepting that this is my life at the moment but one day I'll get my own life back!
Yes, the eyes in the back of your head plus making sure he doesn’t get upset because he can’t do things. I have to tell him several times a day, every day and as if it were the first time, that he’s not allowed to drive anymore. I must also hide the car keys as he’s always looking for his keys..

He’s always looking for me and sometimes I go to bed to read when he’s watching tv but he’s there with me within minutes even if it’s only 8.30pm.
He’s recently had a fall and couldn’t get up which is worrying so we’re getting a personal alarm system installed which recognises gravity.
I suppose the mild symptoms have been there 2-3 years but this last year, he’s declining fairly quickly and slowing down. He has mixed dementia, mainly vascular.
I really empathise with MaryJoan, yourself and others down the line.
 

Splashing About

Registered User
Oct 20, 2019
434
I think a big issue is also family support. Many people experience absent family members downplaying the symptoms and not wanting any money spent on care/carers/house modifications etc. Bearing in mind what you said about family and the fact you have no legal status here I would put a hard head on and consider what will happen if decisions need to be made about finances, housing and what support you will get coping day to day. As everyone says it will just get harder.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
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 am so sorry for you having this awful experience. It’s heartbreaking.
I have stepped back from the whole CH & SW situation. I email & no replies from SW! Despite safeguarding being investigated??

I find the less I do the more chaotic it gets - but by stepping back it gives me leverage!

as for the broken limb, my Granny fell infront of my Mum ( when she was a carer )& broke her hip- there was nothing she could have done!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
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.
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.
going to take on board this post & think this could be a way forward
 

kindred

Registered User
Apr 8, 2018
2,495
Hi @kindred. I've recommended independent social workers a number of times. When my PWD was first diagnosed we didn't get much help from the social worker. That's when I googled 'independent social worker'. I only did it because I'd heard there were independent social workers who deal with adoption - I guessed that if some specialise in children there might be some who deal with the elderly. Google 'independent social worker' - I've been told I can't name the website here. Once you find it, you can find a social worker in your area and who specialises in Alzheimer's, DOLS or whatever. I emailed 2 late at night and both phoned back the next morning. I had a 30 minute conversation with the first one and chose him. He visited my PWD, wrote a report and explained the options. That was about £400.
He later visited again, wrote another report and confirmed she now needed full time care. He found 2 suitable care homes, arranged for them to visit my PWD, and we then chose one. As it happened my PWD then had a fall and spent 2 nights in hospital. They wanted to discharge her - to an empty house 2 hours from us. Thankfully, miraculously, the independent social worker arranged for the care home to take her a week earlier than planned. On the day, he collected a bag of her things the carer had prepared, collected her from the hospital and drove her to the care home - about 100 miles in total. He stayed with her for several hours, till she calmed down.
The second visit and report, plus arranging the care home and getting her there, cost about another £600.
My PWD is self-funding so I paid from her account.
Finding an independent social worker was the best thing we could have done in the circumstances.
If your PWD is not self- funding there might be less an independent social worker can do but they could guide you through the system and advise you on steps to take. Hope this helps.
Thank you so very much. My husband has died but I have friends who need help and the SS don't give any round here … this is so helpful. Thankyou.
warmest, Kindred
 

Joyt

Registered User
Jun 30, 2018
49
@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.
Hi,
I just wanted to say how much I agree with you about the devastation dementia wreaks, and how other degenerative fatal illnesses are treated. This one gets both of you. My husband, now 66, is in full time care and I’m in ‘recovery’.
 

Joyt

Registered User
Jun 30, 2018
49
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.
Yes. I agree. I think it nearly killed me and if wasn’t for my daughters and closest friends taking control of my situation, I think it would have
 

Pink-geranium

Registered User
Nov 27, 2019
16
london
I have been doing this now for a few years, but I don't want to do it any more
He is positive he is fine, the dementia doesn't affect him, he has conversations with me, he doesn't need a carer, life is fine and dandy...... I cannot even talk to him about his dementia as he so much doesn't think it affects him

I hate this half life of doing everything for him, whilst he thinks I do nothing......
Could Citizens Advice or one of the charities advise on this? The Care and support gov.uk document is long but does set out rights and responsibilities. I can see this coming up for me maybe 18 months time. Much more difficult as OH occupies our house.