Caring

[Anthoula]

Carer? Such a little word but one that means so much. When I first took on the role of carer for OH I really had no idea what the role would require. There was no job description handed to me or anyone to detail how the role would develop over time. It has been, and continues to be, trial and error every step of the way. I compare it to being told to swim and then being thrown in the deep end of the pool blindfolded with nobody there to instruct you as you flounder, sink to the bottom and bob up to the surface from time to time. Yes, I do admit I was given a book to read when OH received his diagnosis, but having referred to it occasionally most of what it contains in regard to carer guidance is more idealistic than realistic and not as simple to apply as the book would lead you to believe.

If you take on the role of a teacher, a doctor, a psychiatrist or any other certified responsible duty you study for years to gain all the necessary skills before qualifying and setting off on your career, but to be a carer there is no ongoing instruction and no certificate to proudly display on your wall. My medical knowledge didn`t really stretch much further than putting on a sticking plaster or a bandage, dishing out paracetamol and wiping away a tear.

It is said that love is blind and I believe there is a lot of truth in that. One doesn`t like to see a loved one struggle and suffer, and you naturally react immediately to help and support them without considering all that may follow, and your own physical and mental welfare. Nevertheless, once you do so that is it, you are then officially a carer. It is a 24/7 commitment, no turning your back and walking away after a shift. Yes, carer is a small word certainly, but there is no doubt it carries a huge responsibility.

I was shocked to recently learn that currently there are well over a quarter of a million people with Alzheimers or Dementia and unpaid carers waiting for assessments in the U.K. The sad thing is that even once they have been assessed there is no guarantee of much, if any, support from services. So what do we do? We just keep caring!

 

[SeaSwallow]

@Anthoula Your post should be read by every politician in the country. As regards to training have you heard about the Carer Information and Support Programme (CriSP) which is run by the Alzheimer's Association in some areas. I think that you might find it useful. In my area the courses are run both face-to-face and by Zoom. I have signed up for the Zoom course starting in September.

 

[Jaded'n'faded]

You got a book? I didn't even get a flippin' leaflet. But I do agree with you, in particular what you said about receiving no training yet being expected to know what to do.

I did very little hands-on caring but take my hat off to those who do - I know I couldn't. On a couple of occasions when mum was in hospital I was called to speak to her or come in to 'calm her down'. I was horrified. I wasn't close to my mum and they certainly had no knowledge of our family history, yet the staff seemed to think I was somehow qualified to deal with my mother's delerium and paranoia, simply because I am related to her. (She never took any notice of me even before dementia!) I'm afraid I told the medics in no uncertain terms that it was their job to deal with mum, not mine, and that I simply wasn't qualified to deal with someone in a psychotic mental state.

 

[sunshine chrissy]

Carer? Such a little word but one that means so much. When I first took on the role of carer for OH I really had no idea what the role would require. There was no job description handed to me or anyone to detail how the role would develop over time. It has been, and continues to be, trial and error every step of the way. I compare it to being told to swim and then being thrown in the deep end of the pool blindfolded with nobody there to instruct you as you flounder, sink to the bottom and bob up to the surface from time to time. Yes, I do admit I was given a book to read when OH received his diagnosis, but having referred to it occasionally most of what it contains in regard to carer guidance is more idealistic than realistic and not as simple to apply as the book would lead you to believe.

If you take on the role of a teacher, a doctor, a psychiatrist or any other certified responsible duty you study for years to gain all the necessary skills before qualifying and setting off on your career, but to be a carer there is no ongoing instruction and no certificate to proudly display on your wall. My medical knowledge didn`t really stretch much further than putting on a sticking plaster or a bandage, dishing out paracetamol and wiping away a tear.

It is said that love is blind and I believe there is a lot of truth in that. One doesn`t like to see a loved one struggle and suffer, and you naturally react immediately to help and support them without considering all that may follow, and your own physical and mental welfare. Nevertheless, once you do so that is it, you are then officially a carer. It is a 24/7 commitment, no turning your back and walking away after a shift. Yes, carer is a small word certainly, but there is no doubt it carries a huge responsibility.

I was shocked to recently learn that currently there are well over a quarter of a million people with Alzheimers or Dementia and unpaid carers waiting for assessments in the U.K. The sad thing is that even once they have been assessed there is no guarantee of much, if any, support from services. So what do we do? We just keep caring!

This post says everything about how I feel right now,well said❤️

 

[JaxG]

It is truly shocking isn't it? My OH has been showing symptoms of dementia for about 5 years and was diagnosed two years ago. I have struggled to deal with his aggression and to live with this stranger, it seems as carers we become invisible, a vehicle to keep them alive, no matter what the cost. I still work, from home, to deal with the debts OH took on, we are still paying off debt and we could not survive without my salary. SS suggested I take him to a dementia cafe and various other activities and yet between his needs and those of my 89 year old mother I have no time for myself , I am exhausted and beaten. I went to the doctor to ask for help and she suggested I leave. I am disgusted that there is so little support but nothing surprises me any more.

 

[Bakerst]

It's more than shocking, I think it's a disgrace, it seems if you suffer with dementia you and your carer immediately become invisible to all. PWD are put to the bottom of any list, the carer a nuisance just underneath.
As well as trying to meet the emotional and physical care needs of a PWD 24/7 without any thoughts for themselves, Carers ( think we should use a capital C ?) have to sort finances deal with medics and authorities and argue and insist when they don't get it right...then get treated like an hysterical nuisance.
To my shame, I had to grit my teeth and say nothing to a 'professional' recently when they spoke to OH like he was 4 yrs old, I didn't want to rock the boat as I was already complaining. Just a small example of having to put up with c... so maybe you can get help ?

 

[Kas 0103]

I recently asked for my husband to be referred back to the mental health team, as he seemed to be declining rapidly with his Lewy Body dementia and I wanted to know if his meds could be increased. They visited, listened to what I had to say and told me they would discuss the situation with the psychiatrist. I was called back a week later to say no he couldn’t have the meds increased owing to his slow heart beat. End of. No further suggestions, no alternative meds. I phoned one of the Admiral nurses, who was absolutely brilliant. After some discussion she said she thought it likely that my husband had had delirium, and went through the acronym ‘Pinch me’ which identifies different problems a person could have that would lead to a sudden decline; he had had a number of them.

Fortunately, he seems to have got better on his own and is more like his old self, which is great, but it did leave me wondering, what next? Presumably just a case of managing best I can? The problem is, I don’t know what I don’t know, like all of us, I guess. You find things out by trial and error, or reading other people’s posts. Sometimes it’s the simple things that are game changers, like using puppy training mats under the waterproof sheet, in case it fails. I now need to find out what the best form of protection for my husband is, as clearly the make of pull up pants I am using for him is not sufficient at night, but who can you ask about this? I have had a couple of samples sent by Provide, but they don’t seem to stay put, where do you go to find out this stuff? As someone said earlier we are all learning on the job, and it’s a job none of us wanted, though we do it for love - I’m just not sure I’m very good at it!!

 

[Izzy]

Thanks for the update @Kas 0103.

Has your husband been referred to a continence service? I believe some GPs have a continence nurse and some areas have continence clinics. My husband attended a clinic where he was assessed for the best product and they supplied them.

I hadn’t heard of the PINCH mnemonic. How interesting. I thought I’d put a link about it here in case anyone else would like to read it -

End of Life Care in Frailty: Delirium | British Geriatrics Society

This section of the BGS guidance on end of life care in older people covers the identification and management of delirium in older people at the end of life.

www.bgs.org.uk

 

[Chase my tail]

I recently asked for my husband to be referred back to the mental health team, as he seemed to be declining rapidly with his Lewy Body dementia and I wanted to know if his meds could be increased. They visited, listened to what I had to say and told me they would discuss the situation with the psychiatrist. I was called back a week later to say no he couldn’t have the meds increased owing to his slow heart beat. End of. No further suggestions, no alternative meds. I phoned one of the Admiral nurses, who was absolutely brilliant. After some discussion she said she thought it likely that my husband had had delirium, and went through the acronym ‘Pinch me’ which identifies different problems a person could have that would lead to a sudden decline; he had had a number of them.

Fortunately, he seems to have got better on his own and is more like his old self, which is great, but it did leave me wondering, what next? Presumably just a case of managing best I can? The problem is, I don’t know what I don’t know, like all of us, I guess. You find things out by trial and error, or reading other people’s posts. Sometimes it’s the simple things that are game changers, like using puppy training mats under the waterproof sheet, in case it fails. I now need to find out what the best form of protection for my husband is, as clearly the make of pull up pants I am using for him is not sufficient at night, but who can you ask about this? I have had a couple of samples sent by Provide, but they don’t seem to stay put, where do you go to find out this stuff? As someone said earlier we are all learning on the job, and it’s a job none of us wanted, though we do it for love - I’m just not sure I’m very good at it!!

This post says everything about how I feel right now,well said❤️

This post says everything about how I feel right now,well said❤️

Totally agree we just try our best in a situation which can be really really hard I am pleased Talking Point is something I can read which gives lots of information from the people who know what works best for them thank good ness for advice from other carers and Alzheimer’s Society
What does Acronym PINCH for delirium symptoms mean
Appreciate all advice that is given I feel I can ask for help and good advice when needed Thank you all
Totally agree with the comment about being thrown in the pool told to swim in Anthoulas comment.

 

[Izzy]

What does Acronym PINCH for delirium symptoms mean

It’s explained in this link -

End of Life Care in Frailty: Delirium | British Geriatrics Society

This section of the BGS guidance on end of life care in older people covers the identification and management of delirium in older people at the end of life.

www.bgs.org.uk

 

[JaxG]

Yes, trial and error is the only answer, and getting support from Talking Point. I don't know where I would be without all you lovely people, life doesn't seem so lonely when we share our experiences.

 

[Kas 0103]

Thanks for the update @Kas 0103.

Has your husband been referred to a continence service? I believe some GPs have a continence nurse and some areas have continence clinics. My husband attended a clinic where he was assessed for the best product and they supplied them.

I hadn’t heard of the PINCH mnemonic. How interesting. I thought I’d put a link about it here in case anyone else would like to read it -

End of Life Care in Frailty: Delirium | British Geriatrics Society

This section of the BGS guidance on end of life care in older people covers the identification and management of delirium in older people at the end of life.

www.bgs.org.uk

Thanks for finding that reference, useful to be reminded of what the mnemonic actually stands for! Yes, he has just had a referral and I had a telephone conversation with a nurse with Provide, who sent some sample products, I think I need some slightly heavy duty ones for him than the ones she sent, but I imagine that can be sorted, fingers crossed they will be more suitable,

 

[Kas 0103]

Yes, trial and error is the only answer, and getting support from Talking Point. I don't know where I would be without all you lovely people, life doesn't seem so lonely when we share our experiences.

I feel the same! Thanks for being so supportive. ?

 

[Izzy]

That’s good news @Kas 0103. I hope you get it sorted soon.

 

[Mojo48]

What a brilliant explanation of a CARER for PWD, infact after a difficult period (most days) I have re read your description and it is helpful to know that others feel as I do, thank you. Virtual hugs to all carers ?