Do we need DOLs for Dad if he refuses respite care?

[Kristo]

Mum is on her knees caring for Dad and needs respite. This has been formally recommended by Memory Clinic. We have an appointment booked at the local care home for a tour and initial assessment next week (Dad doesn’t know yet, we can’t tell him anything in advance as he gets so agitated and this would totally set him off).

How do we even get him to look round? How do we get him to accept a two-week stay? He thinks that there is nothing wrong with him, he thinks he does everything indoors (he can’t even dress himself independently and is now becoming incontinent, but every time it happens he swears blind that it wasn’t him). He has never been an easy person, but I don’t know what happens if he refuses to go into the home? He was diagnosed with mixed dementia over 3 years ago.

He would be self-funding so social services are not interested (I can’t even get them to return my calls). We have POA for both health and finance but I don’t know if Dad has a formal assessment to say that he lacks mental capacity. I don’t want to go ahead with the tour until I know that the actual respite can go ahead. Any advice gratefully received!

PS: I have already arranged for a befriending service to start in about a month, assuming that he will accept a stranger in the house.

Thank you all, this forum keeps me sane!!

 

[Palerider]

Mum is on her knees caring for Dad and needs respite. This has been formally recommended by Memory Clinic. We have an appointment booked at the local care home for a tour and initial assessment next week (Dad doesn’t know yet, we can’t tell him anything in advance as he gets so agitated and this would totally set him off).

How do we even get him to look round? How do we get him to accept a two-week stay? He thinks that there is nothing wrong with him, he thinks he does everything indoors (he can’t even dress himself independently and is now becoming incontinent, but every time it happens he swears blind that it wasn’t him). He has never been an easy person, but I don’t know what happens if he refuses to go into the home? He was diagnosed with mixed dementia over 3 years ago.

He would be self-funding so social services are not interested (I can’t even get them to return my calls). We have POA for both health and finance but I don’t know if Dad has a formal assessment to say that he lacks mental capacity. I don’t want to go ahead with the tour until I know that the actual respite can go ahead. Any advice gratefully received!

PS: I have already arranged for a befriending service to start in about a month, assuming that he will accept a stranger in the house.

Thank you all, this forum keeps me sane!!

Its difficult to get round the care home issue even if it is for respite. I am sure others will be able to offer help and advice. I think the only way is to test the water and take him when his respite is due and see what his reaction is. DoLS is a more restrictive approach and would require an application to be made by the care home / social services

 

[Kevinl]

We live in a free country, no-one can be "detained" against their will without so "legal" process.
The police can arret you, you can be sectioned under the mental health act or subject to a DoLS order (deprivation of liberty safeguarding order) there hàs to be some legal framework to hold someone against their wishes.
I'm sat here looking at the 11 pages, closely typed and typed on both sides ( so 22 pages in effect) of a DoLS eligibility assessment, it's heavy going.
Is there no way you or someone could get him to cooperate? It isn't something to enter into if you can avoid it.
K

 

[SAP]

As others have said, you can’t personally apply for DoLs, a care home or social worker would do this if your dad lacked capacity and couldn’t make the decision for himself in his best interests i.e safety.
It would be a good time to look at a needs assessment for him and possibly a carers assessment for your mum. The stark reality is that if he still has capacity and refuses care there is little can be done. However there is nothing wrong with telling him it’s for a holiday for him or something similar .
You could look to see is there is a carers centre in your mums area where she can get support and advice.

Support where you live | Carers UK

www.carersuk.org

 

[LouiseW]

Hi,
This is a really tricky and stressful time, my Dad went into a care home (self funding and no social services as they refused to help us also) for 3 weeks respite on the residential floor.

Within one week the care home had applied for a DOLS order and moved him to the Dementia floor where they could meet his needs. (They did this in full discussion with me ) I have POA Health and Welfare

For us family carers this was the first time that someone outside the family had recognised how adanced his dementia was and provided the care he needed - until then everyone had believed Dad when he told them he did not need any help and was living independently with few issues.

It was a really really stressful time but after a few months he had settled in and is content and has all the care he needs.
I don't know wether you are looking at respite or a more long term move, and I'm sure you may not know yourselves as coping with dementia is a wild ride and full of ambiguity

But to get her in for respite it may be worth saying it's for your Dads benefit not for hers.

Good luck

Side issue but important for people to know how bad Social Care is right now - the home applied for a DOLS order for my Dad in July 2022 (18 months ago( - Social Services have still not looked at it and when the home contact them about it they get fobbed off with Dad not being a prority for Social Services. It's shocking.

 

[northumbrian_k]

Hi @Kristo. My wife had a few respite stays in a 5-bedded respite centre that was on the same site as a day centre. After the first one I got back from a short break to find that application for a Deprivation of Liberty Safeguarding (DoLS) Authorisation was underway. The respite centre initiated this on advice from a Best Interests Assessor. I had no issue with this as it meant that my wife could be kept safe under lightly restrictive conditions during her subsequent respite stays. I did not equate this with her being "detained".

When she later moved to become a permanent care home resident, the original DoLS Authorisation was ended and a new one initiated. That was because Authorisations relate to one specific setting. They are also time-limited and renewable.

I did not discuss the idea of going into respite with my wife or take her to see the centre. Her carer/befriender took her to the respite centre the first time. When I picked her up a few days later she thought that 'we' had been staying at an hotel. Her default response to any new suggestion was 'no' so asking her if she would go for respite care was pointless. This was also true when she moved into her care home.

To some extent, it depends upon the person's level of awareness. Not discussing it beforehand worked in my wife's case. It was when she talked about leaving to go 'home' that the respite centre decided that a DoLS authorisation was needed. She could no longer process relatively complex information nor make a rational decision about where to live. For her, home was with her (long dead) parents, somewhere that existed only in her memory.

 

[Kristo]

Thank you all for your advice, I am going to speak to the care home to confirm their policy for if dad refuses or says he wants to go home. His main difficulty (apart from all the other symptoms of dementia) is that he shadows my mum everywhere, and can’t cope if she isn’t there, even if she just goes to the toilet! She really really needs a break, and I can see it turning from respite into something more permanent once the professionals see and assess his needs in the home. I’ll keep you all updated, keep everything crossed for me!!

 

[LouiseW]

Will do Kristo x

 

[Irisivyclara722161]

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Thank you all for your advice, I am going to speak to the care home to confirm their policy for if dad refuses or says he wants to go home. His main difficulty (apart from all the other symptoms of dementia) is that he shadows my mum everywhere, and can’t cope if she isn’t there, even if she just goes to the toilet! She really really needs a break, and I can see it turning from respite into something more permanent once the professionals see and assess his needs in the home. I’ll keep you all updated, keep everything crossed for me!!

I have a similar problem at the moment
We feel mum needs a care home for her best interests as she gets frightened and anxious when I take her home and wants me to take her out everyday…even to work which I refused
Similar scenario that as she’ll self fund for a while SS don’t need to be involved but I wanted their back up to keep her in the home as she played up when she went in for respite and my brother had to get her back to her flat
Her Doctor yesterday told me to ask The Care Homes policy if mum won’t settle and wants to come home
It’s all very distressing as mum doesn’t want to go but it’s only because she doesn’t know what it’s going to be like
Good luck

 

[Kevinl]

Care homes have different policies, some don't take people with challenging behaviour, some specialise in that area.
Specialist care homes usually have a higher staff to resident ratio so costs are usually higher.
Good luck in your search.
K

 

[try again]

I put mum in respite a couple of years ago. She kicked up such a fuss I had to fetch her back.
She managed two weeks , as it happened her central heating really did break when she left so the two weeks just got me time to get it fixed and get the bed, furniture and carpets deep cleaned so the place went from a stinky cold house to a warm sweet smelling house.
Sadly I didn't get the rest I was hoping for. 🤔

 

[Kristo]

Part of me is really worried about paying nearly 4k for 2 weeks respite when he is likely to try to walk out. Ironically, the “real” him would be horrified at losing out on getting his money’s worth for such a luxurious stay *sigh* We have not tried him in daycare, respite or carers coming in yet - I think maybe I need to do this in stages, but I worry that mum just won’t cope much longer with him on her own.

 

[Rayreadynow]

Mum is on her knees caring for Dad and needs respite. This has been formally recommended by Memory Clinic. We have an appointment booked at the local care home for a tour and initial assessment next week (Dad doesn’t know yet, we can’t tell him anything in advance as he gets so agitated and this would totally set him off).

How do we even get him to look round? How do we get him to accept a two-week stay? He thinks that there is nothing wrong with him, he thinks he does everything indoors (he can’t even dress himself independently and is now becoming incontinent, but every time it happens he swears blind that it wasn’t him). He has never been an easy person, but I don’t know what happens if he refuses to go into the home? He was diagnosed with mixed dementia over 3 years ago.

He would be self-funding so social services are not interested (I can’t even get them to return my calls). We have POA for both health and finance but I don’t know if Dad has a formal assessment to say that he lacks mental capacity. I don’t want to go ahead with the tour until I know that the actual respite can go ahead. Any advice gratefully received!

PS: I have already arranged for a befriending service to start in about a month, assuming that he will accept a stranger in the house.

Thank you all, this forum keeps me sane!!

You should maybe get a needs assessment first from the Social Services and think about Home Care first and see how everyone gets on with that. For £4k you could get a couple of months home care. Once in respite care the care home will do everything they can to encourage you to keep him there so you should be prepared for him not to return.

 

[Kristo]

You should maybe get a needs assessment first from the Social Services and think about Home Care first and see how everyone gets on with that. For £4k you could get a couple of months home care. Once in respite care the care home will do everything they can to encourage you to keep him there so you should be prepared for him not to return.

That’s good advice, I think my mum is a bit “all or nothing” - she hates the thought of carers coming in and has resisted help for so long, but in her lowest moments she tells me to just phone the care home and get him in there. It’s so hard isn’t it? We have a care agency coming to do an assessment next week, and I need to contact the daycare centre to get him in for a trial session. Think I’ll try that route first. Thank you!

 

[try again]

. Once in respite care the care home will do everything they can to encourage you to keep him there so you should be prepared for him not to return.

Not in my case. They practically begged me to bring her back. 😂
They have no authority to keep them against their will without a dols

 

[Liiz]

That’s good advice, I think my mum is a bit “all or nothing” - she hates the thought of carers coming in and has resisted help for so long, but in her lowest moments she tells me to just phone the care home and get him in there. It’s so hard isn’t it? We have a care agency coming to do an assessment next week, and I need to contact the daycare centre to get him in for a trial session. Think I’ll try that route first. Thank you!

My mum has moderate Alzheimer's but is totally adamant there is not a problem. My dad also has quite a few needs. We have just got a care agency in as we had reached a crisis point. Which sounds like where you're at.

We played along and have said the carers are there for my dad not my mum, but they are there for her.

It has been great. Taken a pressure of us the children. Over time I will be visiting day centres with her, in the hope that I will be able to drop her off and then pick up. She will obviously need residential care at some point or a full-time carer at home for both of them. I would get quotes from as many care agencies as possible. You could start it as 30 mins every couple of days and slowly build up?

Alternatively can you have a live in carer at the house for a couple of weeks and your mum goes away?

We tried a befriender but that didn't really work for mum. Someone coming in to do a particular task (cook dinner) seemed to make a bit more sense to mum. Also because their in uniform my mum argues less.

Sending love - dementia is a horrible road to walk

 

[Rayreadynow]

Not in my case. They practically begged me to bring her back. 😂
They have no authority to keep them against their will without a dols

Yes, that is true.

 

[Mumlikesflowers]

I haven't read all this but I can share my experience. 1) I did not take Mum to the care home until the day I was moving her in. 2) I was convinced she'd go livid and tear the place down and I'd gone on about the DOLS to the care home beforehand. 3) She did not and they never had to do the DOLS. 4) My challenges, which are considerable, with the care home, are now all about getting her needs met.

Previous to all this, it was similarly almost impossible to get support at home or in the community, due to Mum's refusal to engage. Hence my pessimism at the huge change of a care home. All steps that you take are scary and big and it's good to give yourself credit for attempting any of them rather than just allowing things to fester on in an unsustainable way. It's very easy to suggest, try x or y, and another to follow through.

 

[Rayreadynow]

I haven't read all this but I can share my experience. 1) I did not take Mum to the care home until the day I was moving her in. 2) I was convinced she'd go livid and tear the place down and I'd gone on about the DOLS to the care home beforehand. 3) She did not and they never had to do the DOLS. 4) My challenges, which are considerable, with the care home, are now all about getting her needs met.

Previous to all this, it was similarly almost impossible to get support at home or in the community, due to Mum's refusal to engage. Hence my pessimism at the huge change of a care home. All steps that you take are scary and big and it's good to give yourself credit for attempting any of them rather than just allowing things to fester on in an unsustainable way. It's very easy to suggest, try x or y, and another to follow through.

I think there is a big difference between a resident with capacity and lacking capacity. Anyone lacking capacity automatically has a DoLS applied for by the Managing Authority (Care Home) to the Supervisory Body (Local Authority) and unfortunately it puts a lot of power in the hands of the Care Home Manager and indeed in some cases they can use it to make life easier for the carers if it is too restrictive.

 

[northumbrian_k]

I can say with certainty that the Deprivation of Liberty Safeguards Authorisation that has been applied to my wife and renewed annually has made no practical difference to the care that she has received. It exists simply to allow her to be kept within the care home behind a locked outer door. This is for her own safety and gives me peace of mind too.

My wife can't process complex information or make rational choices. She would not be able to do so now, but when she first moved in she was quite capable of leaving the premises in pursuance of her wish to go home. Unfortunately that 'home' was the one she remembered as a safe place from her childhood. It no longer exists. I would rather that she had the minimal restriction that has been imposed than have her wandering the streets at great risk.

I don't understand the assertion that a DoLS authorisation puts power in the hands of the care home manager. A proper process exists to represent and protect my wife's welfare, including my appointment as her Relevant Person's Representative.