Local Paper Feature Made by Blood Boil!

[Seaholly]

Our local free rag has just published an article promoting care for the elderly and people with dementia. I absolutely acknowledge that for many carers, respite care is a huge boon and is, at times, a necessity. However, to back up the advertisements for local care homes, there's an article that suggests families consider placing their PWD in respite while they get on with their Christmas preparations!

I have written to the Editor to suggest he considers running a second feature on how families can adapt and compromise to accommodate their PWD over the festive season, should they wish to do so. There's so much that can be done and we've learned by trial and error and yet there's still so little in mainstream media about managing and adapting. I just think a more balanced approach would have been more professional journalism.

I just found the whole concept of excluding less able loved ones during the season of goodwill in order to crack on with mass consumerism sickening. If caring for a PWD means cutting back on visiting other relatives, or going to parties, or indulging in big shopping sprees...................so what?!!! Remind me again what Christmas is supposed to represent!

I'm not out to shame those who genuinely have extremely tough choices to make at this time of year; perhaps juggling PWD with other seriously ill friends and family, or additional care commitments, but the tone of this particular article was basically suggesting consumerism should trump the needs of people with dementia.

Last Christmas, we had a whale of a time. We ditched the big table and the full family get-together and 3 of us huddled around a small table, enjoyed a simple dinner and the whole day revolved; minute-by-minute, around our beloved PWD. Other family members ended up enjoying the freedom to do their own thing too.

 

[RosettaT]

My OH thrives in a family setting, I guess hosting comes into it and I am very careful that he doesn't get over tired. I was considering going away for 3 nights with him 24th - 27th Dec but on reflection decided that it would be too much of a hassle with everything I would need to take and be out by 10am and rearrange carers for him at the holiday accommodation, so decided we would have 25th & 27th with the family and he can have 24th & 26th in bed.

 

[Jessbow]

Try and book respite- you cant normally for love nor money.

 

[Izzy]

Perhaps they should take a look at the Alzheimer’s Society fact sheet!

How to support somebody with dementia at Christmas.

 

[canary]

For the past two years Christmas has been a non-event in my house. No decorations up, no presents bought, no cards sent, no Christmas food, no visitors and we couldnt even get to church. No celebrations at all - it was a day like all other groundhog days.

This year I am determined to celebrate Christmas, but my goodness it is going to be hard. I dont intend to have a consumer based Christmas - I will probably just send the family money and perhaps a couple of small items sent by internet, but I would like a Christmas tree up and some turkey. My goodness, though, it takes time and effort to do only that and time is something that I just dont have. I cannot involve OH in any of the preparations as he is no longer able to do it. I would love to go Christmas shopping, see all the lights and buy roast chestnuts, but I cant leave him for that long. and he is completely unable (and unwilling) to come with me.

I suspect that the article in the paper is aimed at people like me. I am already considering a few hours respite from Tu Vida so that I can get some things done. Most people do not willingly or lightly organise respite and need that bit of encouragement that, actually, it is OK.

 

[Agzy]

Perhaps they should take a look at the Alzheimer’s Society fact sheet!

How to support somebody with dementia at Christmas.

@Izzy not having read that particular fact sheet I have just done so to find I am quoted in it. Wow and early Christmas gift! ?

 

[Izzy]

@Izzy not having read that particular fact sheet I have just done so to find I am quoted in it. Wow and early Christmas gift! ?

Wow! ???

 

[Seaholly]

Sadly, the article wasn't aimed at people who just wanted some respite cover to spend a few hours enjoying the festive atmosphere: it was aimed squarely at helping advertise nursing homes. I hope you do manage to soak up a little festive spirit this year @canary.

I will send the link with the Christmas guidance to the Editor. It's so well known among care professionals that PWD who are faced with a change in living arrangements can go downhill for a few weeks or even moths before they settle and adjust, so to me, the concept of choosing the weeks before Christmas for respite (and then possibly finding the day itself and the following few days are actually much more difficult) is one that should be promoted only with caution, not sold as though it's going to be some super-fabulous party for the PWD and no consequences for the carer!

I still have nightmares about Mum's 'respite' break even though it was 4 years ago now. I was desperate and promised the world on a stick. What I got was a Mum who went in able to feed herself and was generally fairly lucid and the person we took home was unable to feed herself; unable to process where she was and basically 'shut down'. It took weeks of fairly intense observation and effort to get as much of her back as we could.

When I complained to the Manager, I was told, "It's a known fact they go backwards for a few weeks: what did you expect?!" Actually, it seems only to be a 'known fact' once you've handed over £1,600 for the privilege. If we'd brought Mum home for a planned family Christmas the following day, or week, it would have been chaos!

 

[Duggies-girl]

Christmas with dad was always a quiet event but it was a lot of hard work. I had to take everything from my house to his, including food, pots and pans and cooking implements because he had thrown all his out, he only had one tiny saucepan and that didn't have a lid. It was a bit of a rigmarole but dad enjoyed it so it was always a good day.

Last year was the first year without dad and there was covid as well so we didn't worry too much and it wasn't the same anyway. My husband bought me some nice socks, I think I bought him a CD There really isn't a lot to buy in our house. We have had the same tree forever, it's a nice one and we have lots of lovely decorations so nothing to buy there. None of us like roast dinners so we have an Indian takeaway on the table complete with poppadoms and pickles.

I just want it all over and done with so I can welcome 2022 which I expect will be a new beginning and a fab year for everyone, please.

 

[MartinWL]

I really don't see a lot of harm in this promotion of care homes and the last thing we want is care home closures leading to a shortage of places. If people take up the respite offer it could mean a struggling care home could survive, avoiding the distress to the remaining residents of having to move. I hope @canary gets a well- deserved break and a chance to do something seasonal for pleasure.

 

[AbbyGee]

Can't say I'm relishing the idea but I'll still crack on with Christmas, albeit a pared down version just for the two of us. The tree will be decorated at the end of this month and may still be there mid January. My little ancient and rather decrepit Nativity scene will be unboxed and displayed and there will be batteries aplenty for the flame effect wax candles.
I'll do a small portioned turkey dinner then suffer the leftovers in whatever way I can (although I'm already planning the pies, curry and soups afterwards).
So that's my plans, though what transpires may be totally different.

 

[Melles Belles]

Lots of care homes are struggling with recruiting and retain staff. The minimum wage will rising in April. They still need to use a considerable amount of PPE which also costs. Imagine how much their fuel bills will be rising as they need to keep the frail residents warm. Food inflation is another increasing cost they have to factor in. I expect it affects smaller companies more.

 

[AbbyGee]

There's such a lack of care homes around this area that, when the time comes, I despair for my OH's future.

I've never understood why carers have been treated as little more than cannon-fodder, poorly trained, low paid, yet expected to perform to a high level. It doesn't surprise me there's such a turnover in staff and that recruiting proves difficult.

What does get my back up are the ads that state "Carers required. Immediate start. No experience necessary."

 

[DreamsAreReal]

@Seaholly I agree with you. It sounds utterly cynical and heartless.

 

[Suesue.G.]

Once again this forum has helped me with a concern. We have 4 grandchildren and have never spent Christmas with them. My sons' in laws have always had that Blessing. I have to admit that I have often had a few tears, privately, on Christmas day, but we, my daughter lives with us, have adapted our own Christmas for the 3 of us, and the dogs. Unfortunately, my younger son's marriage has ended and he promised to bring our grandchildren to us for Christmas! I even got excited! Our ex daughter in law has moved the goal posts and it looks unlikely. Now, here comes my confession. I am, secretly, almost, relieved. My OH has deteriorated quite a lot in the past few months and I don't think he would get much from a big family Christmas, now. I feel it is too late for that now. He gets exhausted by visitors, even his beloved grandson's Tuesday with us, completely wipes him out. And, I am so out of practice of having more than us 3 to cater for. I even get a little anxious myself at the idea of it! Reading the concerns and comments of all you Wonderful people, on here, makes me feel a bit less of a terrible grinch, who just wants the whole thing to pass us by.

 

[Jaded'n'faded]

If you think that newspaper article was bad, I got one of those 'news' alerts on my phone today about Alzheimer's. It turned out to be from the Daily Mirror and the headline reads: 'Breakthrough on Alzheimer's cure as jab found to restore memory - for just £15 a dose.'

Restore memory??? Sheesh.

Now that makes my blood boil.

 

[Seaholly]

There's sadly, so many empty promises out there around dementia and oddly, they all seem to come at a price!

I don't have a lot of sympathy for care homes. The staff who are given inadequate training and underpaid for the responsibility they take on and the service they provide - yes, I do feel for them. I have, however, never actually met an owner or manager of a care home who was exactly strapped for cash, or struggling to put food on the table.

I stand by what I wrote: it is cynical, manipulative and entirely unrealistic to offer respite in the run-up to Christmas for most people with dementia. I also absolutely maintain that Christmas is about looking after the weak and vulnerable, so whatever form that takes for you and yours - that is what is ethical and right.

What is totally not right is offering that 'lifeline' to stressed out and vulnerable carers without the massive caveat that such a big change in surroundings and routine can knock a PWD right back and it can take weeks to get things on an even keel again. In my mind, that's utterly irresponsible and if that's what it takes to pay their staff, then perhaps some care home owners should consider some adjustments to standards of living further up the food chain!


We've had 4 Dementia Christmases now and the only one that didn't end in tears was the one where we broke with tradition and that's fine.

 

[Melles Belles]

This is a result of having council run care homes closed years ago and the private sector taking over with some making big profits, usually the large chains. Mind there have been large chains going into administration in the past causing untold stress and misery to residents, their families and the staff. It is a very broken system.
Another thing I do not understand, is why we have hospices (charities) managing so much of EOL care, why doesn’t the NHS do this for those who want to die outside hospital?

 

[Jaded'n'faded]

This is a result of having council run care homes closed years ago and the private sector taking over with some making big profits, usually the large chains. Mind there have been large chains going into administration in the past causing untold stress and misery to residents, their families and the staff. It is a very broken system.
Another thing I do not understand, is why we have hospices (charities) managing so much of EOL care, why doesn’t the NHS do this for those who want to die outside hospital?

I agee. Surely EOL should be entirely the responsibility of the NHS. (i.e. paid for by the NHS, wherever it takes place.)