Respite was a mistake - what now?

[Bassetlaw Badge]

I've just had to put my dad in respite for a week. And it was a mistake.

He's had the 'flu and I'd had to move in with him for a fortnight, leaving my hubby and seven year old son at home. Husband is currently off work with anxiety disorder, not helped by the fact I am dad's full time carer. However, he lets me get on with it and understands we don't really have much alternative.

Anyway, at the start of last week dad fell (he's 73 and other than the vascular dementia is very fit). He cut his head open and the hospital said he couldn't be left alone. I'd only just moved back home and gone back to work (I only do 12 hours a week) after being off for a fortnight looking after dad. I felt I had no alternative as the hospital got SS involved and said he couldn't be left alone. So I put him in respite care.

They were nice people. It was a nice place. But everyone seemed to be very different to dad. Everyone was older. They didn't really move or do anything all day. There wasn't any conversation. Whenever I went to see him he was sat looking at a wall or asleep.

So, I've brought him home. But he doesn't seem to recognise his home anymore. He's been like this since he had the 'flu. Obviously I've got to give him chance to get over it, but what is the advice when a dementia sufferer no longer recognises his own home? I'm thinking extra care housing? There seem to be no facilities in our area for dementia patients who are younger and quite active.

We are self funding so affordability is a major issue. But I don't know what to do for the best and I'd welcome any advice.

 

[lambchop]

This must be very difficult for all you. Is your dad distressed at home? It could simply be that his experience in respite and the fall has unsettled him and that he will, in time, be ok. I would firstly ask his GP to check him over and see if there is any other reason your dad might be out of sorts ie blood tests etc. Also, do you have a Psychiatrist or clinic your dad goes to regularly where you could mention your concerns? The GP should be able to help in this regard.

It can also be that, given a different, more stimulating respite home, dad would have settled and been more comfortable. In any case, the most important thing now is to hopefull get dad back to 'baseline'. Don't be hard on yourself - you weren't to know that respite wouldn't work. Nobody can predict anything in dementia.

Best of luck

 

[jugglingmum]

My mum is in extra care housing and it has been fantastic for her, however, she is in her own flat, has 3 lots of 15 minute care calls and that is it. She gets herself to restaurant at lunch and makes her own breakfast. It is a lot cheaper than a care home, but it does need some independence to not just be looking at 4 walls of your flat all day.

I think extra care is fantastic for early stages, where PWD are aware of their surroundings, but I suspect your dad wouldn't settle - there is certainly no one checking up regularly on my mum. If he wouldn't know how to use his pendant, he could be fallen for hours.

Perhaps have another look at other homes, as this one was an emergency placement and it doesn't sound like enough activity for your dad.

There is no ideal care home because everyone is different, your dad needs to be safe, and you need to work out an environment that can provide that.

A phrase I've oft seen repeated on TP is dementia will take everything the carer gives and still want more. You need to decide on your ability to cope with work and a 7 year old who needs an unfrazzled mummy to do fun things with him - daytrips in the Easter hols, egghunts, and if you spread yourself too thinly you will break.

When crisis hit my son was 8 and it was clear mum couldn't stay with us for his sake, if the extra care flat hadn't worked out I would have put her in a care home, as it wouldn't have been fair on my family, I work 3 days out of house 8am until 6pm so have limited time to provide support. I would have tried to find a best fit but the thing with dementia is it is progressive and the PWD will only get worse.

 

[carolynp]

My mum is in extra care housing and it has been fantastic for her, however, she is in her own flat, has 3 lots of 15 minute care calls and that is it. She gets herself to restaurant at lunch and makes her own breakfast. It is a lot cheaper than a care home, but it does need some independence to not just be looking at 4 walls of your flat all day.

I think extra care is fantastic for early stages, where PWD are aware of their surroundings, but I suspect your dad wouldn't settle - there is certainly no one checking up regularly on my mum. If he wouldn't know how to use his pendant, he could be fallen for hours.

Perhaps have another look at other homes, as this one was an emergency placement and it doesn't sound like enough activity for your dad.

There is no ideal care home because everyone is different, your dad needs to be safe, and you need to work out an environment that can provide that.

A phrase I've oft seen repeated on TP is dementia will take everything the carer gives and still want more. You need to decide on your ability to cope with work and a 7 year old who needs an unfrazzled mummy to do fun things with him - daytrips in the Easter hols, egghunts, and if you spread yourself too thinly you will break.

When crisis hit my son was 8 and it was clear mum couldn't stay with us for his sake, if the extra care flat hadn't worked out I would have put her in a care home, as it wouldn't have been fair on my family, I work 3 days out of house 8am until 6pm so have limited time to provide support. I would have tried to find a best fit but the thing with dementia is it is progressive and the PWD will only get worse.

Very well put. Well said and well done you! So hard but you worked out priorities, thank goodness. I am lost in admiration. Love Carolyn.

 

[marionq]

I would think carefully about extra care housing. My SIL has been in Very Sheltered housing in her own flat with managers on site and communal services. It has been great for many years but now in a money saving ploy they are removing the managers and using Alert a Call where the tenants have to clock in every morning basically to show they are still alive.

For a dementia person it is essential to have a level of supervision. At some point he will need a care home. Probably better to look now at suitable ones.

 

[jugglingmum]

Very Sheltered housing in her own flat with managers on site and communal services. It has been great for many years but now in a money saving ploy they are removing the managers and using Alert a Call where the tenants have to clock in every morning basically to show they are still alive.

the definition of extra care is there is a team of carers on site, and a restaurant, (it is regulated as to needing both of theses to comply and registers with CQC as such) so instead of my mum having carers from an external agency, she has them on site and a 15 minute call is a 15 minute call, as there is no travelling time. This is a big step up from the above, which is a variant on sheltered - and what you describe has happened a lot as a money saving exercise. Conversely many councils are funding extra care, as many people who previously have gone into care homes can be supported in extra care, and so it saves money.

I have googled to see what there is for my MIL in her part of Scotland and it is non existent, with very little sheltered as well.

My mum's is described as sheltered extra care but compared to sheltered it is much nearer to a care home but with your own flat. The 'extra care' definition isn't widely understood I don't think and whenever I see posts on here about it, there is a confusion between sheltered and extra care. In my mum's case in 2014 I did look at sheltered developments, and they were not at all suitable for my mum as they didn't provide anything like the level of support she needed.

Although I am an accountant, I have worked with clients in the social housing sector for over 20 years (they are so enthusiastic they love to talk about it - and have had relatives with dementia) who are involved at a high level with implementation of these schemes across the north west, and there is a desire to try and develop a good model for those with dementia, but understanding their needs of a small world and reduction of anxiety, and there is are prototypes in development where the PWD have their own rooms, in a big flat, with carers present at all times in the kitchen to support meal prep etc. A bit like an Abbeyfield for PWD I guess, so in the future there should be better provision for PWD without needing to go straight from home to a care home.

 

[canary]

To my mind the fact that both the hospital and SS have said that your dad should not be left alone is the clinching matter.
How can you possibly do that when you also have work, an unwell husband and a child?

He needs a care home where there are people around 24/7. If this place doesnt have much stimulation, then find another one that does. Dont worry too much about the age difference, mums care home had people of all different ages - from a lady who seemed to be in her 60s through to people in their 90s, yet none of the residents seemed to notice

 

[fortune]

It is possible there are other aspects and it is not just the week in different surroundings. I understand that vascular dementia typically develops in 'steps' ie the PWD will go along fine for a while then suddenly deteriorate, then go along at that level until it happens again. I'd also have a think about the fall, how it happened etc. It might have been a 'normal' mistake, or it might be related to the dementia. Many PWD experience dizzyness as a symptom. Also he may have some element of concussion from the bang on the head. I think carers often blame themselves when things go wrong for their person but perhaps forget, in the midst of the upset, that dementia is a progressive disease and new symptoms and difficulties can present with little or no warning. Things the PWD could be relied on to manage OK become unmanageable or even dangerous, and you don't get any warning.