Respite pre-assessment meeting a disaster

[NickP]

So, yesterday a care home manager from a lovely home came to meet my dad who has Alzheimer's, to assess him for going in for a couple of weeks of respite. Mum mum cares for him and really needs a break. We had told dad that it was like a little holiday, staying in a place like a hotel while the doctors sorted his medication.
The meeting was a disaster! He became very cross, adamant that he has no problem with his memory, asking us to give examples of when he's ever forgotten anything (!), saying he doesn't even take medication so why would the doctors would want to adjust it etc. He also said he wouldn't go to the place we were talking about, and if he was made to go, he would be "angry and grumpy and rude." He said that he just wanted to be left alone to live his life as he always had done, in his home, with his wife and child (that's me - I'm 48 and haven't lived at home since I was 18!) He said his life was no different now to how it's ever been.
In the end I had to distract him out by talking about his childhood (his prefered topic of conversation) using a favourite photo of him when he was about 9 years old. This worked and the meeting ended in a friendly manner.
The manager has said she wants to speak to me on the phone (but is not available today!) to discuss what happened, and some of the things he said that may need clarifying.
I just feel so worn out - getting to this stage has taken such a lot of time and heartache, and I just feel like giving up. The thing is, my mum is struggling to cope. I have to keep going for her sake, but I just don't know what else to do.
What happens if the care home won't take him? What happens if he refuses to go? I have PoA for health and Welfare, but can't physically tuck him under my arm and take him there!! What do other people do in this situation?
Everyone agrees that he needs to do a period of respite - the mental health team, social care, the GP, Integrated care, family - but that doesn't seem to count for anything if he simply refuses.
The social worker said he has 'borderline' capacity as he clearly expressed an opinion... but his opinion is based on him thinking he has no problem, that he is still doing everything that he always has done, being unaware that he can't remember what he did 2 minutes ago, doesn't always recognise his wife, has no idea who his grandchildren are, constantly asks where he is (when he is sitting in his home of 26 years) etc. That is not capacity!!
I'm so sorry this is so long - I think I just needed to offload a bit. I am at my wits end. I have my own family, run my own business, have a son doing his GCSEs - I just don't know what to do next.... except cry.

 

[Helly68]

@NickP - I am so sorry you find yourslef in this situation.

The first time a social worker visited, both my parents did an oscar winning performance of "nothing to see here", despite my mother having been diagnosed with mixed dementia by then. My father now has, what I would describe as "fluctuating capacity", and in some situations, it is a nightmare.
I think as soon as the care home manager is back, speak to her. You don't yet know her view. Maybe see if you can talk to the social worker about what can or cannot happen in this situation, in terms of you all agree he needs respite except him. Does this mean it cannot happen?
Would he accept carers coming ot the house, if you don't already have these? My father is very resistant to this kind of "interference" but this may change further down the line.
I am afraid I am not being much help, but you really have my sympathy.

 

[update2020]

I remember this stage well. It’s very frustrating.

You don’t know yet what the ch manager will say. They may still be willing to take him but perhaps think he needs a DOLS. Deprivation of Liberty Safeguarding assessment. That is very common.

If they are unwilling to take him ask why and also if they can recommend anywhere else. That is how we eventually found a suitable place. All care homes are different in what they can cope with.

If that fails try to find someone to stay overnight with your Dad so that your mum can get away. Whether this is family, friend or some kind of paid carer. Starting him off with some day care might help if not already in place.

Tell white lies. Call ‘carers’ ‘friends’.

For years I could only get away when another member of the family stayed with my husband in my place. As the illness progressed that changed.

 

[Sarasa]

Oh dear @NickP, sorry that meeting didn't go well. I hope when you talk to the manager she is still able to accept your dad or as @update2020 said suggest somewhere that will. This is such a tricky stage as the person with dementia can seem quite credible to outsiders. When mum had her assessment I didn't tell her who the people were, just said they were friends of mine who'd phoned me up on the off chance that I was visiting my mum as they were in the area. The assessment was mainly about mum coming to stay near me in a nice place that my 'friends' also knew. It meant that mum was very charming and I think the manager got a bit of a false impression of how my mum really was. However they did manage to settle her when she did move in and wasn't very happy about it all. It's something that all good homes are used to and can cope with.
When it comes to taking him in, just don't discuss it at all. Say you are going out for a drive and then just arrive and say you are popping in for a coffee. Sneak his bag in while the carers distract him. I know it sounds underhand and that your dad should have a say in what happens to him, but it sounds as he really doesn't have the capacity to make those sort of decisions any more.

 

[Tilly13]

Hi @NickP
Really understand how you are feeling - it is so very hard - my Mum is just the same re fluctuating capacity!

My situation is a bit different - both parents have Dementia ( Dad Alz ) ( Mum Mixed Alz / Vas plus other mental health problems )
Up until Mar 21 for 2 years it was me visiting , doing everything, they lived at home . Mum was always anti any help but a crisis occurred when she started accusing me of stealing, taking the house and refusing me entry.
At this point using POA / self funding I organised daily Carers with strict instructions on allowing Mum to feel she still had control and that they were helping her. I said don't worry about personal care as it's important she trusts you first.
They didn't wear uniforms and my Mum thought they were my friends and were coming to help with hoovering.
They were excellent and because of Dementia they kept to the same 3 or 4 Carers visiting . We had them come twice a day initially.
After couple of weeks of Mum asking if I was on holiday I was welcomed back...but we kept the Carers .Mum was also prescribed Risperidone.
I guess what I'm trying to say is I'd prefer not to have got to a crisis but I think that is sometimes how change comes about as the PWD progresses - obviously you don't want to have a crisis and so you are doing the right thing for both your parents.
Could daily carers be helpful to your Mum - giving someone new to your Dad to talk to and Mum time to have time alone or at an activity she enjoys?

Is there a Day Centre locally with activities that Dad could go to , giving your Mum some respite? My parents went to one once a week, I initiated it ( phoning to talk to the Manager ) and took them , we paid for it. I said it was a Club for people who enjoyed quizzes ( my Dad ) and painting ( my Mum ) .
I wouldn't say they loved it and I wouldn't say in advance too much that we were going but once there they participated and joined in with everything especially enjoying the lunch!

Are these options for you and your parents or have you already got to the stage of needing Care Home respite?
Agree with @update2020 don't like doing it but 'love lies ' are really necessary sometimes !

 

[jugglingmum]

I haven't had direct experience of this but some of this may help in conjunction with as mentioned above to discuss as little as possible with him and take him without telling him that's what you are doing.

I am assuming your dad is self funding and this might not apply if he is relying on SS funding.

I recently moved my mum into a care home and didn't have time to research them (all homes local to me aren't currently operating waiting lists so had to keep phoning for vacancies).so engaged an independent social worker to do the initial phone calls re vacancies and discuss her care needs - mainly because I didn't have time but also I found it hard to discuss my mum's current issues.

It is harder finding respite so might be considerably more expensive - but this cost me £270 - 3 hours @£90 an hour - very little compared to a week in a care home when permanent stay is envisaged.

An independent social worker might also be supportive in assisting in assessing capacity as council social workers tend to say PWD have capacity when this is blatantly not the case. They might also help you understand the right sort of care home for your dad. It is a completely lottery out there as every home offers different things and approaches things in a different way.

I've found it very hard to navigate the dementia issues as support is very fragmented and no one tells ypu what to do. I learnt a lot on here.

Good luck to your son in his GCSEs. My son is year 12 and the last few years have been hard for them.

 

[NickP]

Good luck to your son in his GCSEs. My son is year 12 and the last few years have been hard for them.

Thank you @jugglingmum - the exams seem to be going ok so far thanks, but as you say it's been so hard for them... we've just said get through them, do your best and let's get into college and take it from there!

 

[NickP]

Hi @NickP
Really understand how you are feeling - it is so very hard - my Mum is just the same re fluctuating capacity!


Could daily carers be helpful to your Mum - giving someone new to your Dad to talk to and Mum time to have time alone or at an activity she enjoys?

Is there a Day Centre locally with activities that Dad could go to , giving your Mum some respite? My parents went to one once a week, I initiated it ( phoning to talk to the Manager ) and took them , we paid for it. I said it was a Club for people who enjoyed quizzes ( my Dad ) and painting ( my Mum ) .
I wouldn't say they loved it and I wouldn't say in advance too much that we were going but once there they participated and joined in with everything especially enjoying the lunch!

Are these options for you and your parents or have you already got to the stage of needing Care Home respite?
Agree with @update2020 don't like doing it but 'love lies ' are really necessary sometimes !

Thanks @Tilly13 - it's so helpful to know we are not alone and others are experiencing similar challenges.
I've organised 3 hours a week when a carer comes in and takes dad out, so mum gets a break - that started last week. Social care have offered another 3 hours but dropped that when things escalated and we realised 2 weeks would be better... but I've spoken to social care this morning to update them and they're going back to organising that
They were offered a day centre but refused it as an option!
Social Care have jjust suggested 'live in' respite, where a carer comes to stay, like a friend, in their home and mum can be there but go out, or could go away for a few days - wondering if that might be better for them? Has anyone used this type of service?
Btw I noticed you mentioned your mum went on risperidone - dad has just been put on that too and it has really helped

 

[NickP]

Thank you so much to everyone - I still haven't got the care home on the phone... but have spoken to social care, who are now wondering about 'live in' respite... has anyone any experience of this?
It is really helpful to know that we are not alone, and to hear about other people's experiences... especially knowing how things change in terms of how difficult/ easy it is to implement support as the illness progresses, and others sharing stories of 'oscar winning performances' - Dad certainly does that!
I still feel we are in limbo and not sure where we are going next... but certainly feel much less alone and much less like crying, so thank you!

 

[update2020]

Thank you so much to everyone - I still haven't got the care home on the phone... but have spoken to social care, who are now wondering about 'live in' respite... has anyone any experience of this?
It is really helpful to know that we are not alone, and to hear about other people's experiences... especially knowing how things change in terms of how difficult/ easy it is to implement support as the illness progresses, and others sharing stories of 'oscar winning performances' - Dad certainly does that!
I still feel we are in limbo and not sure where we are going next... but certainly feel much less alone and much less like crying, so thank you!

It may be the best way forward. As I mentioned above when my husband was in the middle stages I only managed to get away overnight if someone else stayed with him in our home. A few care homes did try but none would keep him more than a couple of hours. I don’t have any experience of SS or anyone else organising this for us, so cannot comment on that aspect.

 

[MartinWL]

The social worker said he has 'borderline' capacity as he clearly expressed an opinion... but his opinion is based on him thinking he has no problem, that he is still doing everything that he always has done, being unaware that he can't remember what he did 2 minutes ago, doesn't always recognise his wife, has no idea who his grandchildren are, constantly asks where he is (when he is sitting in his home of 26 years) etc. That is not capacity!!

You are right and the social worker is wrong. Being able to express an opinion is not relevant as that is not how capacity is assessed under the Mental Capacity Act 2005. Remind the social worker that the first requirement under that Act, in order to have capacity for a specific decision, is that the person understands information given to him in relation to the decision. Quite clearly he does not understand that he has an illness, what the Act calls a disturbance of the mind or brain. That is clearly relevant to the decision. Therefore in law he does not have capacity and as his attorney under the POA you must make this decision for him.

 

[MaNaAk]

Dear @NickP,

I know you probably haven't heard from the care home yet but they may still be willing to try him for respite in which case you will have to tell love lies. If the care home don't accept and you try another care home introduce the manager/manageress as a friend. This is what I had to do with dad he went in for respite before going in permanently. He viewed the care home as a hotel, a school and his old telephone exchange! Do not mention care homes. When he goes in for respite and he will let us know and come back on here so that we can advise you on how to get him settled. The one good thing about your meeting is that the manager will be able to tell if they can cope with that behaviour and if they can't you will need to look for another home but you need to describe your dad on a bad day in order to find the right home.

Good luck

MaNaAk