Does dad need f/t care

[Hlwbm]

Hi. I’m new to this forum but not to dementia unfortunately. This is a long post, sorry but I appreciate if anyone has the time to read it and comment on it.

My dad, 80, lives with mum who, while mentally just about ok is physically utterly knackered with both rheumatoid arthritis and osteoarthritis. Plus she had a massive heart attack 2 years ago.

Dad was diagnosed with Alzheimer’s 4 years ago. He’s later stages now and although my mum wouldn’t think it, looking at some of the experiences on here, we are lucky; he is very placid and compliant, no aggression, no massive amount of wandering, no trying to use kitchen equipment etc.

He now has carers 2x day for get up and bedtime. Incontinence issues are creeping in with occasional bed wetting / soiling / not getting to toilet on time. We now use pull ups, but at night he’s been known to take them off and pee on floor. Mum cannot cope with the toiletting behaviours - in her head it’s catastrophic, Neither physically nor mentally can she sort him. So if he has a soiling/ wetting incident inbetween care visits she really struggles. This doesn’t happen lots so far but does happen perhaps once every week or 2.

Social worker believes his needs can be managed at home with day care/ sitting service / regular care calls. I’m inclined to agree BUT my mum just generally struggles with all of this and has always been in denial about dad’s dementia. I think she has come to the conclusion he’ll be safer/ better off in care.

Added complications - I live 100 miles away and until recently have had dad for week long periods of respite for mum quite frequently but this now seems to disrupt him as he loves it so much here he gets extremely despondent and depressed when he goes home. I can’t care for him full time as I work and have a 7 and 12 year old at home.

So my question is this; mum got her head around him going into care but SW believes his needs can be met with at home, day care, and a sitting service allowing her some freedoms.
Does anyone have experience where this can work for a while? What happens when there’s a toiletting incident outside the care hours?

I feel I’m shouldering all the choices and I’m not sure what to do for the best and for whom! I’m guessing social services pretty much wait for a crisis point or carer burnout before suggesting care home? Should I say we’ll trial a more comprehensive home care package but put my foot down if this doesn’t work for either mum or dad?? Writing this here it seems like the obvious answer but I hear various people saying we’re only delaying the inevitable of dad going in a home.

Struggling to do what’s best. Thanks for any constructive replies 🙂

 

[Banjomansmate]

The first question is “Who would be paying for Dad to be in residential care?”. If he has enough money behind him you can make the decision yourself if he is willing to go. If you would be reliant on local Council funding then you would have to go with the Social worker’s plan, usually 4 care visits a day, until it is proven to be not enough.

 

[Jaded'n'faded]

What happens when there’s a toiletting incident outside the care hours?

It's exactly as you would guess: either your mum sorts it out or he sits in it till the next carer comes.

As @Banjomansmate says, much is down to funding and whether he is willing to move into care. If not (or there is no money) you'll have to get SS involved.

I’m guessing social services pretty much wait for a crisis point or carer burnout before suggesting care home?

Pretty much, yes

 

[Violet Jane]

Unless the situation is very extreme Social Services generally want to try 4 care visits a day before they agree to fund a care home. Given your mother’s health problems and distress it seems very harsh that they are insisting on trying the things that they have mentioned. To jump this stage you would have to argue that your mother’s health is being put at risk and that she has reached carer breakdown. Some desperate carers literally have to threaten to leave the home before Social Services take the action they need. Your mother is not under any legal duty to care for your father. She could leave at any time although this could have serious financial implications if your father was moved into a care home funded by Social Services.

Sitters from charities such as Age UK won’t deal with toileting as far as I am aware. Carers providing companionship care should. I assume that day care can deal with accidents but it will depend on the particular service.

As @Jaded'n'faded has said, in between carer visits your mother will have to change your father or leave him in soiled clothes. Although your father doesn’t have accidents very often currently it’s likely that the number of accidents will increase, and he may become totally incontinent. Family carers vary greatly in what they can deal with. For some, incontinence is their line in the sand, and it sounds as if this is something that your mother is not going to be able to deal with. Given her poor state of health I don’t think that she should be expected to. Incontinence creates a lot of additional work on top of all the other tasks that the family carer has to carry out.

 

[Hlwbm]

The first question is “Who would be paying for Dad to be in residential care?”. If he has enough money behind him you can make the decision yourself if he is willing to go. If you would be reliant on local Council funding then you would have to go with the Social worker’s plan, usually 4 care visits a day, until it is proven to be not enough.

Thanks for your reply. Dad has no savings so yes funded by council. Having slept on it I realise we will just have to give 4 visits a day a go even though mum struggles with the idea of carers coming and going at various times throughout the day. My head was so full last night I just couldn’t think straight about it all. Ultimately she’s on a waiting list for knee surgery and he’ll probably have to have another needs assessment at that point for possible respite care.

 

[Hlwbm]

It's exactly as you would guess: either your mum sorts it out or he sits in it till the next carer comes.

As @Banjomansmate says, much is down to funding and whether he is willing to move into care. If not (or there is no money) you'll have to get SS involved.


Pretty much, yes

Thanks for replying. I’m trying to get my mum to accept the fact she won’t always physically be able to clean him and with 4 visits a day he will get sorted at some point. The SW did point out (plus I have experience from my MIL being in a home) residents don’t always get promptly cleaned up in homes if the carers are busy supporting others.

 

[Hlwbm]

Unless the situation is very extreme Social Services generally want to try 4 care visits a day before they agree to fund a care home. Given your mother’s health problems and distress it seems very harsh that they are insisting on trying the things that they have mentioned. To jump this stage you would have to argue that your mother’s health is being put at risk and that she has reached carer breakdown. Some desperate carers literally have to threaten to leave the home before Social Services take the action they need. Your mother is not under any legal duty to care for your father. She could leave at any time although this could have serious financial implications if your father was moved into a care home funded by Social Services.

Sitters from charities such as Age UK won’t deal with toileting as far as I am aware. Carers providing companionship care should. I assume that day care can deal with accidents but it will depend on the particular service.

As @Jaded'n'faded has said, in between carer visits your mother will have to change your father or leave him in soiled clothes. Although your father doesn’t have accidents very often currently it’s likely that the number of accidents will increase, and he may become totally incontinent. Family carers vary greatly in what they can deal with. For some, incontinence is their line in the sand, and it sounds as if this is something that your mother is not going to be able to deal with. Given her poor state of health I don’t think that she should be expected to. Incontinence creates a lot of additional work on top of all the other tasks that the family carer has to carry out.

Thanks for taking the time to reply. The whole thing has messed with my head. I know lots of people are dealing with this kind of thing now so I’m going to try and think clearly today about how a care package may work in the short-medium term. It’s all just delaying the inevitable. The SW actually asked my dad if he wanted to go into care. In fact she asked him lots of things. He only replies in gestures or single words and of course he said ‘no’ to going into care. Which made me feel rubbish as ultimately that’s where he will probably end up. (Not sure why she asked him lots of things when he doesn’t even know what day it is the poor man, but that’s another conversation!)

 

[Sarasa]

Welcome to Dementia Support Forum @Hlwbm. I think you are going to have to try the four visits a day, but to me it sounds like not only does your dad need the 24/7 care that is available in a care home, but that your mum is probably getting to the stage where she may become too ill herself to manage. Can you and your mum keep a diary of things that are happening to show the SW that four visits won't help for long.
Social services are very stretched financially so I think that's why I think the SW is being slightly disingenuous. She might be new to the job but most people with dementia will say no to a care home, or indeed to anything that is outside their normal routine so asking your dad is a trifle pointless. As for having to wait to be seen to if there is an accident, that may well happen, but in a good care home it isn't likely to be the four hours or so that their will be at home, and also there are staff available to deal with problems overnight.
Do keep posting, this is a very friendly and supportive place.

 

[canary]

The SW actually asked my dad if he wanted to go into care. In fact she asked him lots of things. He only replies in gestures or single words and of course he said ‘no’ to going into care. Which made me feel rubbish as ultimately that’s where he will probably end up. (Not sure why she asked him lots of things when he doesn’t even know what day it is the poor man, but that’s another conversation!)

Im afraid that taking someones view into consideration, even if they have lost capacity, is something that is enshrined in the Mental Health Act. If your dad does not consent to moving into care (yes, I know, none of them do) then SS can only override this if he has lost capacity AND he is demonstrably "at risk". Before this they have to try the "least restrictive option". If the cares 4 x a day do not work, then there is no other option and SS will override his wishes. Keeping a diary of all the things that make him "at risk" when carers are not there is a good idea.

 

[Banjomansmate]

Mum having knee surgery might be just the trigger for Dad to go for respite residential care and not coming back home. 🤞

 

[Dave63]

Hi @Hlwbm

It's such a difficult time for both you and your mum and I can't really add anything to the excellent advice others have already given. I know you mentioned your dad doesn't have savings and I'm not sure whether they own their own home but something to consider, if not already, is does anyone have LPA (legal power of attorney) for your dad or mums affairs? It may become a factor later on especially if your mum also became poorly and had to move into care.

 

[Hlwbm]

Hi @Hlwbm

It's such a difficult time for both you and your mum and I can't really add anything to the excellent advice others have already given. I know you mentioned your dad doesn't have savings and I'm not sure whether they own their own home but something to consider, if not already, is does anyone have LPA (legal power of attorney) for your dad or mums affairs? It may become a factor later on especially if your mum also became poorly and had to move into care.

Thanks…yes LPAs in place fortunately we did this when I suspected something was up a few years ago.

 

[Hlwbm]

Im afraid that taking someones view into consideration, even if they have lost capacity, is something that is enshrined in the Mental Health Act. If your dad does not consent to moving into care (yes, I know, none of them do) then SS can only override this if he has lost capacity AND he is demonstrably "at risk". Before this they have to try the "least restrictive option". If the cares 4 x a day do not work, then there is no other option and SS will override his wishes. Keeping a diary of all the things that make him "at risk" when carers are not there is a good idea.

Ok thanks that’s useful to know and yes a diary is a good idea. It’s awful because I don’t want him to go into care and I know he probably wouldn’t want to. We never had that discussion prior to the dementia and I kind of wish we had had a frank, honest talk so I knew what his thoughts were.

 

[Hlwbm]

Welcome to Dementia Support Forum @Hlwbm. I think you are going to have to try the four visits a day, but to me it sounds like not only does your dad need the 24/7 care that is available in a care home, but that your mum is probably getting to the stage where she may become too ill herself to manage. Can you and your mum keep a diary of things that are happening to show the SW that four visits won't help for long.
Social services are very stretched financially so I think that's why I think the SW is being slightly disingenuous. She might be new to the job but most people with dementia will say no to a care home, or indeed to anything that is outside their normal routine so asking your dad is a trifle pointless. As for having to wait to be seen to if there is an accident, that may well happen, but in a good care home it isn't likely to be the four hours or so that their will be at home, and also there are staff available to deal with problems overnight.
Do keep posting, this is a very friendly and supportive place.

yes we’ll just have to see how it all goes. Thank you so much.