Dementia Challenge Groups – would you like to contribute via a second thread?

[Grannie G]

From a carers' or family members' point of view, what could care workers or health professionals do to help you plan for and deal with end of life?

When my husband first went into his home, a residential home for the care of the elderly, not dementia registered, no nursing care, I made the comment I hoped he would not need to be transferred to another home if his condition deteriorated.

I was told by one of the carers my husband would be cared for as long as he needed it.

This was not true, because I was later told he would be cared for only as long as his needs could be met.

This is my dilemma.
My husband is in good physical health and is not at risk of strokes or seizures. I do not really know where we stand so I would like end of life care discussed at annual reviews.

Not everyone would want to discuss this, especially when the resident is in good physical health so I am not really sure how this would be addressed .

Perhaps addressing this area could be clarified so the family of new residents would have a choice.

 

[Amy]

Not everyone would want to discuss this, especially when the resident is in good physical health so I am not really sure how this would be addressed .

Perhaps addressing this area could be clarified so the family of new residents would have a choice.

I don't know....maybe if it was just a standard part of an annual review, then maybe people would become more comfortable with discussing preferred place of care. I think death needs to become less of a taboo subject.

Amy

 

[Brucie]

I think death needs to become less of a taboo subject.

Amen to that!

I was dreading losing Jan and the losing of Jan, if you get my drift.

What I found was that in considering all things, as I went along, and planning ahead, this all made things easier on 22 August 2010, when I lost her.

I didn't have to think about what to do next, because it had all been decided, and I only needed to make a phone call or two and I could concentrate on the important things of being with her.

On Jan's last day, I needed only to be with her all day, and to say my goodbyes, though she was by then unconscious - but comfortable. Having been able to do that, and in the knowledge that I had done all I believed I could for her during her dementia, I didn't fall apart in the event.

If death is not a taboo, but we can recognise it is a release for the person, then the different life afterwards can be managed.

Just my thoughts.

 

[Rozlynn]

I would be very interested in taking part. I contribute as a carer to some of the training organised locally for care homes, domiciliary care and acute hospitals.

 

[Amy]

My husband is in good physical health and is not at risk of strokes or seizures. I do not really know where we stand so I would like end of life care discussed at annual reviews.

Been thinking about this Sylvia...it's important....what questions do you want answered?

Amy

 

[Paulineanne]

I have looked after my mother for many many years - she is now 89 and very frail. She has vascular dementia. I feel physically sick every night in case she dies when I am not around. Is this totally selfish. I can see she is frail, a shadow of who she was, unable to do any tasks for herself but I just cannot bear the thought of the end... Yes, I would like to know who I should turn to for support... it is a lonely space when you see someone you love with all your heart deteriorate.
The care agency send different carers and sometimes they don't bother to show up! The social services are only interested in funding. (or lack of it) and expect me to shoulder all the responsibility. Quite frankly I don't think they have a clue.
The hospital was less that inspiring and my mother came home worse than when she went in. I am still traumatised by the experience. Goodness knows how my mother felt, God bless her she never complained or said a word!...
My mother is living in sheltered accommodation - some of the residents are hostile as they don't think mum should be living there!
A change of attitude is required - more information should be available. I have muddled through for years - trying my very best to make sure I do the right thing. Sometimes at the cost of my own health.
What can be done ... I don't know. sorry for the rant.. I was saying to the scheme manager today - I wonder when things will change?

 

[swcmo]

Dementia Challenge - Quality of Care

I have a friend who has Picks disease (rare dementia) aged 63. I used to care for my father in law who had vascular dementia. I worked for many years as a social worker working with people who had dementia and their carers, also worked for the Alzeimers Society in Ontario Canada. I now work in commissioning as a monitoring officer for providers of home care, residential and nursing care,
I agree with everything that has been said and also feel strongly about the quality of care especially dignity. The recruitment and training of staff underpins the quality of care however the costs involved and the low pay that carers impact upon these areas.
There are many hard working dedicated workers out there who go unrecognised and sadly it is the few who are not that make the news headlines.
Planning for end of life is part of planning now in many care homes as already said death should not be taboo.

 

[sallyanddon]

Dementia Challenge groups

Sounds a great idea and very much needed!
Having experienced the best and worst of what services have to offer for my early-onset husband, I now feel its important to lend my voice to getting all the issues addressed.
Just let me know what the next step is, and I'm there!
Sally

 

[alex]

Question 1.

I think the most important quality a carer can have is empathy, having the ability to share someone else's feelings or experiences by imagining what it would be like to be in their situation would be a great advantage. I think if the carer has empathy then everything else you have stated automatically falls into place....... compassion, understanding, an ability to enter the patient's world, willingness to provide 'hands-on' help etc etc

I also think it’s important to try to keep independence for as long as possible, it’s so easy for carers to complete a task, it’s another matter to give sufferers the time and patience needed for them to do it themselves.

Question 2

There’s a period when everyone knows the end is near

Ummmmm, I’m not sure I agree with that one, some people are stronger and/or more practical, but for some it’s very easy to “not hear” or “not see” what’s obvious to everyone else.
I had the privacy, the hints dropped, even talks about being “On the pathway” but I didn’t hear, it went over my head.
I know my situation was a little different to most but right up until the last few days I was too involved in the “Fight”, not so much to keep him alive, but more to give him every chance (due to his age)
I had never experienced death before (or not close up) so through stupidity and/or ignorance did not recognise the signs. Then right up to the last few hours I was clinging to hope.

So yes I would agree that it would be very helpful to prepare the relatives, but maybe instead of being “told” it could involve some participation? For example (and I know this sounds stupid) being given some literature on preparing for a loss (as sometimes seeing it in black & white helps it sink in????)

I think death needs to become less of a taboo subject.

Yes, Death is a part of life but Death is painful and therefore people are reluctant to talk about it as it may cause pain, therefore it will always remain a taboo subject, as already said maybe literature is the best way forward.

I was given a leaflet after the event with information about obtaining death certificate etc etc, maybe to get one before the event might be more helpful?

For me the helpful topics might have been:

• Facilities available to relatives
• How to inform relatives.
• Arranging last rite (or similar for different religions)
• Making the last hours comfortable.
• Planning funeral arrangements.
• Obtaining Death Certificate.
• How to arrange burial plots, headstones etc
• A list of local Funeral Directors, Churches, Contact numbers etc
• Support for relatives - Cruise, Counseling, websites etc

Maybe this already exists in some places?

Regards
Alex

 

[Amy]

Hi Paulineanne,

Does your mum have any involvement with District or Community Nursing? I know that District and Long Term Conditions Nurses are involved in caring for people dying in their own homes. Maybe you could speak to your mum's doctor about what support you would have if mum received end of life care at home?

The care agency send different carers and sometimes they don't bother to show up!
Complain, put it in writing. Emphasise the need for consistent care. Let them know that carers not turning up is putting your mum at risk and that you will hold them responsible. My experience is that those people who make the agencies accountable do get better care.

Amy x

 

[Amy]

So yes I would agree that it would be very helpful to prepare the relatives, but maybe instead of being “told” it could involve some participation? For example (and I know this sounds stupid) being given some literature on preparing for a loss (as sometimes seeing it in black & white helps it sink in????)


It doesn't sound stupid Alex. I know with mum, I wanted to know the 'signs' to look for. Mum's organs closed down gradually, her extremities became cold and cyanosed, her pulse changed, her breathing changed. I think as a society we have generally become so removed from dying that we nolonger know the signs. Mind you....not everyone is the same.

I do think that knowledge empowers though.

Amy x

 

[Brucie]

Just one point i want to make here... I don't want to be thought to be leading this thread. I would ideally like any members who feel they have something to contribute - whether it has been mentioned already, or not - to do so.

I'm there on the Champion Group to contribute from my own experience, but felt vulnerable doing that as - as we all know, every journey with dementia is different.

Having been so involved with TP for so long, I thought what a wonderful opportunity it would make to bring in our members to broaden what I can pass on.

Talking to the forum this way is unique within the Champion Groups; while there are some focus-type groups, there is not a more general feedback from those who have been through the process, or are currently doing so, or are fearfully contemplating they will have to.

It is a great thread so far, so do please continue to contribute.

I'm not able to be on TP very often, so please don't wait for a post from me here - unless you feel we can do better - and you have a positive suggestion to make that happen! I'll spot that and try to reply ASAP.

 

[Amy]

Should health care professionals have a role in preparing carers for what what is to come? I know that this may happen informally, but is more needed?

Amy

 

[Brucie]

Should health care professionals have a role in preparing carers for what what is to come?

I really don't know" is my reply, on pondering.

Everything I learned came from fellow members on TP or from a friend who had lost her husband. Sort of a drip feed over time.

It never seemed to be the appropriate time to talk about it with Jan's GP at her care home - she was a very approachable and very capable GP - because there could be no idea of even what year might be the end of Jan's ordeal. The GP always said "there's no way of knowing, and Jan has already lasted longer than anyone else in my experience"... and this was a GP specialising in people who have dementia.

As part of Jan's care plan at her care home I completed the bits that covered religion and whether I could be called at any time [well, of course!].

There is perhaps one benefit of a long slow rundown, and that is there is also a long ongoing grieving process at the same time. As such, it can make things less of a surprise at the end, and one may be in a better situation to work things through at that time.

Nevertheless, it is always a shock, and the second wave of grieving can come quite a long time after, like a tsunami reaching shore ages after an earthquake in some far distant place.

 

[Amy]

I think I was thinking more of earlier stages Bruce. When a relative is first diagnosed, people generally have little idea of what to expect in terms of changes in behaviour, possible problems they may incur. It was suggested to me that maybe a requirement of receiving 'carers' allowance was attendance at a half day/day course where carers could be given an insight into the future/names and addresses locally of where to find support/AS contact details/information about TP...you get the idea...bit of a one stop shop. It would also put people in touch with other carers in the vicinity. We do all the time bang on about how professional carers require the correct training, yet how do we educate and support those caring at home? There are a couple of other threads running which refer to allegations of abuse being made against carers....maybe carers should be given advice on how to ensure that they don't become a victim?

Amyx

 

[Brucie]

I think I was thinking more of earlier stages Bruce

Ah, that was going to be the problem with posing two different questions within the same thread.

I was replying to the second question, about end of life.

Training for family carers?

Well, maybe, but only if they elect to have it, and no allowance should be dependent on that, in my opinion.

I'm pretty sure that I would not have lasted the course had I know what dementia had in store for Jan. I found that coping day to day, reviewing each new symptom as it arose - and checking with the doctors - worked for me and, I hope, us.

To a degree, ignorance was bliss for me, and I learnt as we progressed.

Take a thing that happened recently. I know someone who is over 90 and had a fall just over a year ago, sustaining bad concussion.

I never really knew how concussion affects some people - for this lady, it was horrifically like suddenly jumping into mid term dementia. I was recognising all the same symptoms that Jan showed, but I knew she had been ok before the fall.

Even the consultant was sure this was quite bad dementia, but I kept reminding all the medics about the fall.

Only by moving her in with us for the odd day here and there, could we bring her back to her normal self. We have continued to spend a lot of time with her and this has been very beneficial. One doctor prescribed mild anti-psychotics - we never had that prescription fulfilled. Several times I thought that the consultant must be correct, but we have brought her to a stage that is very close to how she was before her fall.

Yes, she has some old age dementia, but is still pretty sharp.

Now, had I been new to dementia, and had I been on a course, I would have accepted what the doctors were saying and taken things at face value, and I'm pretty sure she would have been in a care home by now.

Being on the course of learning by my own experience taught me to think my way around the behaviours.

It wouldn't work for everyone, and every situation is different anyway, but making people attend a course to get their allowance would also not work universally.

Sorry to ramble... just my thoughts and opinions, as ever!

 

[Christin]

There are a couple of questions I would like ask.

I would like to see everyone have access to a psychologist. I really believe that some of the behaviour that carers experience can be calmed and alleviated if we only understood what was causing it in the beginning. To be honest, I don't think carers can always be expected to cope and provide strategies if they do not understand what is causing the behaviour. We made a request for my FIL to see a psychologist as we felt that his continual searching for my OH was down to the fact that he lost a child many years ago. There was no grief counselling back then, and he learnt to hide his feelings, but towards the end of his life they resurfaced. This is something that could continue to happen to many other people in the future and needs to be addressed.

So my question here is: Should everyone have easier access to a psychologist?

End of life is another area where I would like to see some changes. On the Saturday that we first received a phone call to say that an out of hours GP had visited and had said that he was fading, my OH was out of range of contact and I visited with one of my sons. When we arrived we were told that the out of hours GP had left a written prescription for end of life medications. I could see immediately how much he had declined and as the NH had no one available to collect these items for him, I went myself. I couldn't find a chemist that had all three items in stock, the local hospital pharmacy was closed and no chemist would give me one item and let me keep the prescription for another. In the end I managed to get two of the items and I returned to the NH, with a promise of an emergency order for the third. My point here is that the paper prescription should not have been left with the NH in this way. My FIL did make a very small recovery and died two weeks after this, but it still concerns me that it could have been very different. We had previously discussed that my FIL should stay at the NH for end of life care, I think that may have been quite a new idea at the time. It was no doubt more difficult because of the weekend. Perhaps it has already changed, but these medications should have been more readily available for him.

I do not complain about the care given to my FIL at this time, the carers were brilliant, and he was kept clean, and fresh at all times. We did mention that the care at the very end of his life seems to cause him some distress, just washing him and changing pyjamas caused his breathing to change. It was a very sad time indeed.

So my question here is: I have read of 'hospice at home' care, should it be arranged for residents in permanent care?

I still believe that my FIL suffered unnecessarily because of his age. We heard the phrase 'Well, he is very elderly.' from professional people more than once. It didn't help him, or us, one little bit. I do sometimes wonder if he was given a diagnosis, but we were never told, or did he simply fall below the radar because he already lived with us?

 

[Brucie]

Hello again, everyone

I just wanted to reassure everyone that the replies here have not been forgotten.

There was a meeting of the Champion Group in London earlier last week.

With such a large group of people, and so much ground to be covered, things are being considered in chunks, each meeting, and in sub meetings in between.

As someone who is not involved professionally in the topics being discussed, I am in awe of just how much is going on in this country in so many areas related to dementia. The Department of Health, the NHS, organisations such as Alzheimer's Society and those dealing with palliative care, etc are all involved. I begin to understand why it is so difficult to link things together in an effective way. The scale and complexity of the problem is what makes things so very difficult, that and the lack of any idea of what causes the condition and remedies that can make it better permanently.

It is encouraging that examples of good practice are being discussed as exemplars to roll out more widely.

The contents of this thread so far - and any new contributions - will be placed, in a suitably effective form, within the remit of the Champion Group.

Thanks for your help!

 

[Brucie]

Publication of first Campion Group progress report

Members of the Champion Group were invited to Downing Street on Thursday, to mark the occasion of the publication of the first progress report for the group.

We have been asked to promote the report, and the new Dementia Friends website, Facebook page and Twitter #dementiachallenge and #dementiafriends hashtags.

The progress report and an annex may be found at http://dementiachallenge.dh.gov.uk/2012/11/08/report-on-progress/

I know that most members will find it hard to dedicate their valuable time to reading a large document, when they have urgent caring issues on their hands, but I do recommend it, should you find the time.

 

[Brucie]

I just popped a link and recommendation for TP on the Dementia Friends Facebook page - it will be interesting to see if it stays there!