Dementia Action Alliance Carers' Call to Action

[Bedelia]

For anyone who doesn't know about this campaign to highlight the particular needs of dementia carers and recognise their rights, here's the text of a talk I gave about it at the Alzheimer's Show in London on Friday, 16 May:

http://dementiajustaintsexy.blogspot.co.uk/2014/05/not-beige-cardigan.html

You can find out more by following the links in the text. Please make others aware, particularly professionals, such as GPs, social workers, mental health staff, etc.

 

[Kevinl]

You've come to the wrong place to criticise beige carddys
Is someone who has someone in carer actually called a carer, taking my car for a services and leaving it for someone else to do doesn't make me a mechanic?
K

 

[Izzy]

You've come to the wrong place to criticise beige carddys
Is someone who has someone in carer actually called a carer, taking my car for a services and leaving it for someone else to do doesn't make me a mechanic?
K

My husband is at home with me so I have no experience of having someone in a care home. Having said that I am fairly sure that a good number of members who do very much still regard themselves as carers. They might not be doing the hands on caring as they had done in the last but it is a different kind of cafe they provide.

PS I do not own a beige cardi and am never likely to.

 

[Sue J]

For anyone who doesn't know about this campaign to highlight the particular needs of dementia carers and recognise their rights, here's the text of a talk I gave about it at the Alzheimer's Show in London on Friday, 16 May:

http://dementiajustaintsexy.blogspot.co.uk/2014/05/not-beige-cardigan.html

You can find out more by following the links in the text. Please make others aware, particularly professionals, such as GPs, social workers, mental health staff, etc.

You are not the pull-on trousers and the beige cardigan!

Not up to following your article properly but this bit jumped out at me, because no I'm not (but they do help and I love my beige cardy!!! I've had it a long while before any symptoms but it's a bit 'sexy'. Thanks for making me smile

But no, I am not those things but trying to hang onto 'me' isn't easy.

I will try and read it at another time if I can
Best to you
Sue

 

[Sue J]

You've come to the wrong place to criticise beige carddys
Is someone who has someone in carer actually called a carer, taking my car for a services and leaving it for someone else to do doesn't make me a mechanic?
K

Of course you are still a carer when your caree moves into care, you can't turn it off like a tap. People in care homes need advocates when they can't communicate amongst many other things.

You may leave the car at the mechanics and get it back when it's fixed but unfortunately with dementia there is no 'fix'.

 

[jaymor]

I was a carer for 7 years looking after my husband at home. I have been a carer for a further 2 years whilst my husband has been in a nursing home. I will continue to be his carer for as long as he needs me.

I have accepted help in caring for my husband because he needs nursing care and 1:1 24 hour care because of his complex needs. I visit every other day and I am his eyes and ears. I watch that everything is as it should be and as I took a lot of trouble in finding this home (visited in excess of 20 homes) I have not found I anything untoward so far. If I do then they will know about it.

I spend my time talking to him, walking with him, comforting him when he gets anxious and feeding him on days when he is not very well. I have sat with him through several chest infections. I can give him my undivided attention when I am with him, something I could not do at home. I have a good relationship with the carers because they know I care.

For me caring as in love for my husband or caring as in looking after my husband will be my responsibility for the rest of his life. I have help now that's the only difference.

Jay

 

[2jays]

I have "history" with my mum that her (brilliant) Carers in the care home don't have so I can calm her when she is agitated, I can "advise" Carers how to break her agitation when I'm not there. I am "hands on" even when I'm not there at the care home being "hands on"

Once a carer of someone with dementia/Alzheimer's...... Always a carer of someone with dementia/Alzheimer's.

 

[Bedelia]

You've come to the wrong place to criticise beige carddys
Is someone who has someone in carer actually called a carer, taking my car for a services and leaving it for someone else to do doesn't make me a mechanic?
K

Kevinl, just because your relative lives in a care home, you don't stop being their carer. They are there because they have reached a stage where you need other people (and sometimes specialist facilities) to help you care for them; but your emotional - and indeed organisational - caring doesn't stop when they are no longer your sole physical responsibility.

Do you think we just "put away" our loved ones and forget about them? It's nothing like taking your car in for a service! (If you want a better comparison, do you stop being a child's parent when it's in school or hospital? When other people are physically in charge?)

Apart from the emotional aspect (which is paramount), who do you think arranges for everything that's done for someone in a care home? Clothes, funding, personal belongings, toiletries, wine (yes, if they still enjoy that!), music, books, hairdressing, chiropody? Who consults with staff about their medical and personal care and stands up for their well-being when they can't speak for themselves? Who still visits them and loves them, however little they may be able to engage in the end?

See my previous post:

http://dementiajustaintsexy.blogspot.co.uk/2014/04/lets-get-real.html

And for the record I wasn't criticising beige cardies or anyone who likes to wear them! Merely saying that there's a tendency to judge by appearances and for the carer (at whatever stage in the journey - in the home, the community, or with a relative in residential care) to be subsumed beneath the caring identity.

Everyone, person with dementia or carer, deserves to be seen for the themselves, whatever that truly is. And if that means wearing a beige cardie, fine; wear it with pride - so long as it's your choice, not everyone else's assumption!

 

[Kevinl]

"Apart from the emotional aspect (which is paramount), who do you think arranges for everything that's done for someone in a care home? Clothes, funding, personal belongings, toiletries, wine (yes, if they still enjoy that!), music, books, hairdressing, chiropody?
It's arranged by the people your funding source pays to do it be it self funding SS or whoever under your guidance.
Essentially the problem isn't careering it's more about how to manage those who are doing the caring for you, maybe the Guardian can move on from how difficult it is to manage your childcare to how difficult it is to manage your parents care, from a distance be it a boarding school or a retirement home.
Many here have after years of struggling to keep someone they love at home with them have had to finally crack and use a carehome as a last resort as they can no longer cope physically or mentally and I've seen how they grieve over taking thata decision.
Your long and eloquent argument against bringing the elderly into your home will go down well with some specially as you say " when you have been used to your own space and privacy" funny your parent might have said the same when you were born, but somehow I doubt it,

K

 

[Noorza]

When a person manages the carers they are not doing so because they "care" about the carer but because they "care" for the person in the home. It's not an abdication of responsibility but a change to it.

Caring is so more than just arranging the practical things although of course that is a vital part.

Speaking as a parent and a carer, I see them very differently, I chose to become a parent, it was a conscious decision and one that I relished. Being a parent also brings with it the responsibility of caring for that child throughout their childhood and nurturing them to the best of my ability.

A daughter/son of an ill parent didn't make those choices and therefore legally and emotionally doesn't have the same responsibility.

Of course placing a loved one in a care home is emotionally draining, whilst it may be in the loved one's best interest to get the stimulation, the 24/7 care they need it also means admitting that they are near the end stages of life and that is naturally devastating.

 

[sistermillicent]

As i read it the article is more about the wellbeing of carers, providing support to them and not using a one size fits all approach. Good thing too.

My dad is fortunate that he has things from his GP like phone call consultations if he can't get out because of mum, home visits ALWAYS for mum, and an open invitation from mum's respite care home to help or advise him if he needs it about pretty much anything. The manager is always available for dad to talk to. The local chemist know what drugs mum is on and keep an eye on him too.
The local care company, not a nationwide one, just a local one, have also helped him out and asked if they can assist more when things have been tougher, not for more money but in whether they can do a little more around the house to ease the pressure.

There are so many ways that lives of carers can be made just that little bit more bearable, and it isn't all from social services, in fact I haven't mentioned them because they haven't been a whole lot of help. Dad is now waiting to find out what happens when mum's last respite is done next month, don't even know if there will be a bed for her any more. And that's been ongoing since january.

Yes, we need better services for carers, And no, I don't really consider myself to be one as I just step in when needed.

 

[Bedelia]

"Apart from the emotional aspect (which is paramount), who do you think arranges for everything that's done for someone in a care home? Clothes, funding, personal belongings, toiletries, wine (yes, if they still enjoy that!), music, books, hairdressing, chiropody?
It's arranged by the people your funding source pays to do it be it self funding SS or whoever under your guidance.
Essentially the problem isn't careering it's more about how to manage those who are doing the caring for you, maybe the Guardian can move on from how difficult it is to manage your childcare to how difficult it is to manage your parents care, from a distance be it a boarding school or a retirement home.
Many here have after years of struggling to keep someone they love at home with them have had to finally crack and use a carehome as a last resort as they can no longer cope physically or mentally and I've seen how they grieve over taking thata decision.
Your long and eloquent argument against bringing the elderly into your home will go down well with some specially as you say " when you have been used to your own space and privacy" funny your parent might have said the same when you were born, but somehow I doubt it,

K

Kevinl, I think you have totally misunderstood the point of the article. Like thousands of others, I am one of those people who has struggled for years to keep someone I love at home and finally cracked - that's the point of the whole campaign to support all carers, whatever their circumstances. I'm certainly not arguing for people to be put into residential care before they absolutely need it - far from.

(And the point about "space and privacy" was meant to apply equally to the person needing care - don't assume that all elderly people are keen to share their space and privacy, particularly when they are unaware of the severity of their needs and still consider themselves to be independent and resent help from others.)

It's not about the distinction of what is or isn't a "carer" - you can make up your own mind about that. (Although I would take issue with your argument that once a person is in a care home, everything is organised by "the people your funding source pays to do it". Who would that be then? In my case, my mum is technically self-funding, which in practice means that I arrange the funding, as well as everything on a practical level. I don't get paid for that by anyone. But my point it not one of payment, but emotional attachment - that doesn't stop, wherever your loved one is; and if a person is in local authority care, do you think that "the people your funding source pays to do it" will attend to their personal needs beyond the admin of ensuring that their fees are paid and boxes are ticked? That they will know all about their past and their likes and dislikes, their family history, and most importantly will love them too?)

There was a range of family carers speaking for the DAACC2A campaign at the Alzheimer's Show - some of the others may have an experience more directly comparable with your own. We were all asked to share our personal experience to show that spectrum. That's the thing, people care in all sorts of different circumstances.

Please don't make this an argument about who is worthy of the term "carer". The point is anyone who is responsible for someone else's care, in whatever circumstances, should also be entitled to support and to be seen as a person in their own right. That's all.

All the best to you.

 

[BeckyJan]

Clothes, funding, personal belongings, toiletries, wine (yes, if they still enjoy that!), music, books, hairdressing, chiropody?

When my husband went to nursing care I still did the above – because I wanted to. I saw his new GP and made it clear I was his wife and still cared – I needed to be involved with all medical issues as well as the nurses.

The point is anyone who is responsible for someone else's care, in whatever circumstances, should also be entitled to support and to be seen as a person in their own right

I totally agree but also think it is for that person/carer to make their own efforts to be ‘seen as a person in their own right’ so need to seek and accept support when offered.

 

[sistermillicent]

Feeling quite strongly about this one.....I think the support is often given in an inappropriate way for many. That is not anyone's fault, just the way the system works at the moment.
I don't think it is the responsibility of someone like my dad to change the habits of a lifetime and seek out social services when he is suddenly faced with the devastating realisation that mum can't function like she used to and it is going to get worse and worse.
Where is the logical place that Dad would find help and support to get him and mum into a manageable situation? His family, the younger generation.

I was only able to help out because i was allowed to take unpaid leave and at one point given compassionate leave by my lovely work place (nursing, non nhs).
My sisters who both work as nurses in the nhs were not given one single solitary hour of unpaid leave or anything to assist. And I think that is the norm. So that needs to change.

The first person outside the family and nhs that dad spoke to about mum's dementia was the estate agent who came to value the house. her mum had had AD, dad had never met her before but they had quite a heart to heart and he didn't feel quite so alone afterwards.


What about the people who have no families, who face caring alone? I can't answer for them but someone on here will know.

How about having GP surgeries where the receptionists have proper training, at present i understand they don't have any at all in most surgeries. Perhaps an awareness that if someone is a carer they need that appointment just a bit urgently.

 

[Padraig]

Kevinl,

You're outnumbered as the only male, so I'll join you and support your views.
Though I took on all the daily work of house keeping, shopping, cleaning, cooking etc etc in addition to honouring my wedding vows, I never considered I was a carer. I was simply a husband who ensured my wife received the best quality of life that I could provide.

My greatest regret was to have handed over the care of my wife to strangers; i e in a Nursing Home. Worst of all, it was when she could no longer talk, walk or feed herself.
The best action I took was to take her home and try to be the best husband possible. So much for all the experts who said it was impossible, and that she had only days to live.
You can't beat the system. The stages are laid out. Medication is the answer to most problems, never mind about the underlying causes. One approach fits all. 'Train' the carers just like at school to take the same exam. But keep saying each person is different.
Well thank God I'm different and will continue to think 'out side of the box.'
In our case the 'experts' were wrong. One had the decency to admit it, and one other was open-minded enough to record interviews with me regards my approach to Alzheimer's. It proved for both himself and his students.
I'm no expert, just some one who chose to be a husband to my wife in her time of need in every sense of the word. The great pity is that there appears to be very few who chose to go down the path of one to one care 24/7, 365 days year on year to the very end.
What now? I miss those final years with my wife. I live alone, most days I see no one and it's a case of waiting to join her. Was there any point in writing my story? I really don't know. I'd hoped to pass on some of what I learned to the 'experts'.
Sorry for taking up much of your time with this ramble. No doubt some will be pleased to learn that I wont post much in future.

 

[Kevinl]

Kevinl,

You're outnumbered as the only male, so I'll join you and support your views.
Though I took on all the daily work of house keeping, shopping, cleaning, cooking etc etc in addition to honouring my wedding vows, I never considered I was a carer. I was simply a husband who ensured my wife received the best quality of life that I could provide.

My greatest regret was to have handed over the care of my wife to strangers; i e in a Nursing Home. Worst of all, it was when she could no longer talk, walk or feed herself.
The best action I took was to take her home and try to be the best husband possible. So much for all the experts who said it was impossible, and that she had only days to live.
You can't beat the system. The stages are laid out. Medication is the answer to most problems, never mind about the underlying causes. One approach fits all. 'Train' the carers just like at school to take the same exam. But keep saying each person is different.
Well thank God I'm different and will continue to think 'out side of the box.'
In our case the 'experts' were wrong. One had the decency to admit it, and one other was open-minded enough to record interviews with me regards my approach to Alzheimer's. It proved for both himself and his students.
I'm no expert, just some one who chose to be a husband to my wife in her time of need in every sense of the word. The great pity is that there appears to be very few who chose to go down the path of one to one care 24/7, 365 days year on year to the very end.
What now? I miss those final years with my wife. I live alone, most days I see no one and it's a case of waiting to join her. Was there any point in writing my story? I really don't know. I'd hoped to pass on some of what I learned to the 'experts'.
Sorry for taking up much of your time with this ramble. No doubt some will be pleased to learn that I wont post much in future.

Best post I've ever read on here, should he ever exist then God bless you Padraig.
K

 

[gringo]

Well this male disagrees. I am tired of people making me feel inadequate on this forum. I did my best to keep my wife at home, but it was not enough. Well into my 80’s I simply could not exist with little sleep and still provide the kind of nursing that was essential for my wife’s complex needs.
One size does not fit all. I admire those who can manage, but I wish they would stop coming on here to tell me what a rotten husband I am because I could not follow their example and had to call for help.
I visit each day to do what I can and ensure that everything is in order. I have not abandoned her and deeply resent the implication that those who put their much loved relatives into CH’s do not care. It’s not an easy option and the pain of it is deep and un-relenting. So get off my back.

 

[Izzy]

I have no experience of having anyone in a care home. We managed to keep mum at home until she died but I have to be honest and say we were reaching the stage where I was finding it hard to cope.

I obviously want to keep my husband at home with me as long as I possibly can. I am not naive however and realise and accept that it might not be possible for him to remain at home. I have no idea how I will cope with that but I know that like Gringo I will have to call for help if I need it. I do feel for you Gringo and all of the others on the forum who are or have been in your situation. At the moment there but for the grace of God as far as I'm concerned.

Take care.

 

[Grannie G]

My priority was to keep my husband at home but the time came when all care funding was withdrawn because it was considered we were both at risk.

I really do feel upset for those of us who are made to feel inadequate for resorting to residential care. We know it is the last thing we wanted.

 

[Padraig]

It was not my intention to make anyone feel inadequate and I'm sorry if my post came across that way.
It was only in the final year of supporting my wife with AD that I purchased a computer. The purpose was to join an AD website intending to share and learn from others supporting spouses at home on a one to one basis 24/7. My search proved unsuccessful and I was informed that it was impossible. When I explained that I was doing just that for a number of years I was invited to tell our story. It was a US site and they titled it: Padraig.... My Story......My Wife.... and interestingly enough I've just Goggled it and there it still was.
I'm only too well aware why it is impossible for most people to care for a loved one at home and I've mentioned the reasons in my book. There are many and varied circumstances why it is impossible to keep a LO at home. As for feeling guilty, who does not feel guilt? It's an emotion like any other; sadness, happy, anger, frustration, fear etc. If one does not feel guilt they have a major problem. We get over these emotions in time.
There was one advantage I had, when it came to caring; I was well trained from an early age. Among the kids 'serving time' with me, a number of us were nobodies child and therefore required we to water, feed and look after the livestock seven days a week, all year round. All the other kids were left out on licence to their parents, at Christmas, Easter, Summer holidays and the odd weekend.
Gringo, Now I'm in my eighties and each day and night I live with great pain after cancer surgery. It is very doubtful that I could have looked after my wife in my present circumstances. Also I did go through the 'putting my wife away' stage, as she once remarked, so I experienced the heartbreak.
I was privileged to have shared those final years with my wife, in addition to learning so very much about AD. As a result I wanted to share my experiences with others by offering a free download of my book. It covers how I managed; loss of weight, refusing to eat, rigidity, seizures, loss of speech and movement. Just about every subject that is raised on the site. I'm no one special, I came from the very bottom of the heap, but I have a voice. Once again my apology for any offence caused, none was intended.