Advice on care at home

[BOFOX1979]

Hi all,

I was wondering if anyone might be able to help a relative newbie with advice please. My Mum was diagnosed with AD in 2014, aged 60. She lives at home with my Dad and one of my younger brothers. I live in London, whilst they all live in Buckinghamshire

It's been hard to get the support that Mum needs. My Dad has found the situation very difficult to deal with (as we all have). We've rarely agreed on the support Mum needs, but Dad had seemingly started to accept that more care was needed when he gave up work a few months ago.

Unfortunately looking after Mum is proving to be too much for him full-time, and he has accepted a part time job for 3 days a week. He thinks that she can be on her own for a few hours each day, the prospect of which doesn't sit well with me at all as she is so unable to care for herself now

He says that he can't afford to not work, but how much he can afford for care isn't clear to me. It has taken a long period of pressing him to get even power of attorney sorted and to claim PIP for mum.

The local council have been poor at best and borderline negligent at worst (months of inaction and chasing before they suddenly suggested sectioning mum when they finally acted). I'm not hopeful that speaking to them will help the situation at all. At this distance they've often made things worse especially when I've not been there for visits.

I don't think Mum is ready for residential care, but the previous carers who visited for a couple of hours a day were very inconsistent - some were great but some barely seemed interested. My greatest hope is that we can find someone who can provide some activities and personal care for Mum (other things Dad hasn't come to terms with well) in their home. I don't have a clue where to find them though, as Admiral don't seem to be in the area and none suggested by the local information on the AS site are dementia specialist.

Sorry for such a long post. Does anyone have any suggestions for a) helping a carer come to terms with things b) good sources for finding better care?

 

[Beate]

As long as we don't know whether your Mum is self-funding or not, it's hard to give advice but I would always start with your local council. I know you said Social Services haven't been helpful in the past but they are usually the first part of call if someone is not self-funding, and he who squeaks loudest, gets oiled, if you get my drift. So make a fuss! They should provide a support plan consisting of day care, sitters, carers, respite etc. In a day care centre she would get activities, a hot lunch and personal care. Sitters from Age UK etc could come to the house and spend time with her. Carers from agencies usually deal with personal care etc, but they are often very pressed for time so will just do the minimum and not do anything if the person is not compliant and refuses their help.

Can I ask, because you only mention him fleetingly, what is your younger brother doing? Is he offering any help? Obviously, no one can be forced to care for someone else, but if he's living there, he ought to help out as much as he can. Your Dad is elderly and needs all the support he can get, both practical and emotional. Even he could walk away if he chose to, so concentrate on getting help from the one people that have a duty of care for a vulnerable person at risk - the state.

 

[Learner]

Hi BOFOX1979.

Sorry to hear about your mum. Your situation resonates with me. My mum was diagnosed about 6 years ago, and is now only 63, so she was fairly young.

We initially tried to manage supporting her with family and friends, and then gradually introduced carers for a couple of hours each day. Eventually though we had to increase the hourly paid carers to be there nearly all the time, until one of us(her sons) came back from work. It became really expensive(nearly 1K a month) so we spoke with SS.

It did take some negotiation and persistence but they eventually provided direct payments through which we could obtain a live-in carer. The thing I learnt is that as mum deteriorated the level of care she required increased. We didn't plan it very well so it all came on top of us at once. My advice would be;

- engage with SS again, emphasising your mum is getting worse and needs more support. They may be able to offer something like direct payments

- try and find any relevant activities in the area that might be appropriate for your mum
i.e. singing for the brain, memory café etc.
These are really good and at least in the early stages, work really well.
You dad could potentially do these and they are more interactive than just staying at home

- continue to seek advice. I have learnt so many things from our mistakes. We have done our best, but probably could have done better with some strategic planning. This forum and other sources can really help in terms of planning and dealing with a really difficult situation.

All the best
Learner

 

[BOFOX1979]

As long as we don't know whether your Mum is self-funding or not, it's hard to give advice but I would always start with your local council. I know you said Social Services haven't been helpful in the past but they are usually the first part of call if someone is not self-funding, and he who squeaks loudest, gets oiled, if you get my drift. So make a fuss! They should provide a support plan consisting of day care, sitters, carers, respite etc. In a day care centre she would get activities, a hot lunch and personal care. Sitters from Age UK etc could come to the house and spend time with her. Carers from agencies usually deal with personal care etc, but they are often very pressed for time so will just do the minimum and not do anything if the person is not compliant and refuses their help.

Can I ask, because you only mention him fleetingly, what is your younger brother doing? Is he offering any help? Obviously, no one can be forced to care for someone else, but if he's living there, he ought to help out as much as he can. Your Dad is elderly and needs all the support he can get, both practical and emotional. Even he could walk away if he chose to, so concentrate on getting help from the one people that have a duty of care for a vulnerable person at risk - the state.

Thank your for replying. It's helpful to be reminded that the squeaky wheel gets the oil when it comes to the council. They've visited and left Mum outside the house on her own at the end of the appointment before, which really damaged my faith in them, but you're right that they are the gatekeepers to a lot of help so I mustn't give up on them.

I actually have 3 younger brothers, all of whom are struggling in their own ways. The one who lives at home has been a great practical support, but none of us are great at expressing our emotions to one another. I keep trying to get everyone to talk, but it doesn't come easily. The two youngest are significantly younger than me (in their 20s) so they tend to rely on me. And my other brother has a young child and works very long hours.

My Dad gets all of the information so I'm not entirely sure on whether Mum is self-funded. I believe not as Dad has been offered one day a week of paid care (which he has yet to take up).

 

[BOFOX1979]

I am in v similar position to your Dad. I simply could not look after OH with early onset AD full time for either of our sakes or for financial reasons. There are companies and charities that do not provide banks of carers but proper 1-1 companions. If you PM me I can send you some details of the ones I know. They work with both self-founders and those funded by social services.

I now have companions for OH six hours a day and five days a week. It costs all of his PIP plus occupational pension (taken early) plus some of my income, but it is so worth it. He is more stimulated and happier and we both benefit from the emotional relief of not being together 24/7.

Thank you for replying, and I'm sorry to hear that you are coping with the same problems as my Dad. It's so hard watching my parents struggle with this, and I'm glad you are finding a way to get some respite.

I'm not able to PM as a member yet, but as soon as I can rack up enough posts I will do. It would be enormously helpful to have some suggestions.

 

[BOFOX1979]

Hi BOFOX1979.

Sorry to hear about your mum. Your situation resonates with me. My mum was diagnosed about 6 years ago, and is now only 63, so she was fairly young.

We initially tried to manage supporting her with family and friends, and then gradually introduced carers for a couple of hours each day. Eventually though we had to increase the hourly paid carers to be there nearly all the time, until one of us(her sons) came back from work. It became really expensive(nearly 1K a month) so we spoke with SS.

It did take some negotiation and persistence but they eventually provided direct payments through which we could obtain a live-in carer. The thing I learnt is that as mum deteriorated the level of care she required increased. We didn't plan it very well so it all came on top of us at once. My advice would be;

- engage with SS again, emphasising your mum is getting worse and needs more support. They may be able to offer something like direct payments

- try and find any relevant activities in the area that might be appropriate for your mum
i.e. singing for the brain, memory café etc.
These are really good and at least in the early stages, work really well.
You dad could potentially do these and they are more interactive than just staying at home

- continue to seek advice. I have learnt so many things from our mistakes. We have done our best, but probably could have done better with some strategic planning. This forum and other sources can really help in terms of planning and dealing with a really difficult situation.

All the best
Learner

Thanks Learner.

That's all very helpful practical advice. Sorry to hear you are dealing with a similar situation. It feels so devastating that just as my parents might finally have had some time to enjoy together, and a new grandchild via my brother, that so much is taken away from them. We weren't even able to celebrate Mum's 60th properly sadly. I hope everything is working out better for you at the moment.

My Dad is receiving direct payments, but I don't know how much. Part of my problem is that he finds the situation so difficult to talk about, added to by Mum's constant suspicion that something is wrong and not allowing him to make calls. That also provides him with a good reason to not make calls/appointments etc. I keep on trying but it's been a hard road so far. I wish that he would go to things like the singing cafe, but his main course of action so far has been to try keep things as much as they were so far.

James

 

[canary]

I dont think anyone has mentioned day care (apologies if I missed it)
I would have thought that this would be the obvious thing to explore so that your mum would have stimulation, people who would be able to deal with personal care and a hot meal to boot - especially as your dad is working part-time. SS should be able to advise on this too.

 

[Beate]

I mentioned day care as I also think it's the obvious choice.

 

[canary]

So you did Beate - I missed it. Sorry

 

[BOFOX1979]

I dont think anyone has mentioned day care (apologies if I missed it)
I would have thought that this would be the obvious thing to explore so that your mum would have stimulation, people who would be able to deal with personal care and a hot meal to boot - especially as your dad is working part-time. SS should be able to advise on this too.

Thanks, that would be a good direct question for the council.