Employing a live-in carer or moving to a care home

[Binkie4]

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Building a wheelchair accessible ground floor extension


We hope eventually to live on the ground floor ( @Utsikt ) of our house ( there are two sitting rooms so one can become a bedroom), and for upstairs to make an apartment for a carer. There is an en-suite already fitted to one of the rooms that would be part of the carer's flat, and a fitted wardrobe that we hope could be adapted to. make a small area with kitchen facilities for them. There would also be a boxroom for storage upstairs plus a small spare room for our children to stay.

That's as far as we have got with the thinking. Most rooms downstairs overlook the rear of the house and the garden which we enjoy. The big issue is whether to install a bathroom downstairs. We have the space because part of the garage could be adapted but we have already converted the upstairs bathroom with a walk in bath, and it would be very expensive to have the room built and equipments fitted downstairs. We have a stairlift so could get upstairs and wouldn't need to share the bathroom with a carer. We have a loo downstairs. Still thinking about that one.

I have organised a visit from a recommended but I think expensive care agency next week to discuss a bit. It seems very strange to have actually organised something concrete. We will be 80 soon and I can do nothing but personal care so I think we need to start a plan. We do have a cleaner.

We too have looked at one or two apartment complexes but not felt they were right for us. We like our house and garden but will need more help as we get older. We also have friends here whom I can't see but provide some company for Mr B. They were extremely helpful in offering advice when the planning issue came up next door. It must be difficult to plan for covering 2 generations @Trish.

Can anyone on the forum offer experience with a live in carer?

I think I may have taken this too far off topic @obeat unless you may be interested in a live in carer at some point.

 

[Trish]

Only from others experience that live in carers are very expensive, and you're likely to have a series of carers with changeovers every 2 or 3 weeks if you go with an agency.

 

[Binkie4]

Only from others experience that live in carers are very expensive, and you're likely to have a series of carers with changeovers every 2 or 3 weeks if you go with an agency.

Yes, thanks @Trish. We are thinking of it as an alternative to residential care if the time came when Mr B could no longer do what he does to keep us going. A friend used residential care for a couple of months last year after hospitalisation while recuperating and it cost an utter fortune as well as being unsatisfactory in other ways. We will know more about costs after our appointment next week, but we'll have to add consistency of care to our list of questions. We had to start somewhere since family members are all over 100 miles away. It is quite daunting. If we were both well, we could leave considering this issue longer but with a carer aged 80, with developing health needs, it is beginning to feel we need some ideas.

I do know of the daughter of friends of a friend in her 50s who has severe ME who lives fairly near us who has a live in carer. She is very severe and when her parents visit, after travelling for a couple of hours, they can only stay for 10 minutes because of her tolerance needs. Perhaps I can learn a bit more about how this is organised.

I hope you are getting some ideas @obeat for your situation, and I apologise for going off topic with my post. I think I am currently a bit anxious about the appointment next week but I will be quiet now.

I would like to reinforce the issue of considering noise when building your extension. The house next door but one to us was completely refurbed a couple of years ago and despite the distance, I found the noise levels almost unbearable. I was mostly bedbound at the time and wore earphones on top of wax ear plugs.

 

[Trish]

Yes, thanks @Trish. We are thinking of it as an alternative to residential care if the time came when Mr B could no longer do what he does to keep us going. A friend used residential care for a couple of months last year after hospitalisation while recuperating and it cost an utter fortune as well as being unsatisfactory in other ways. We will know more about costs after our appointment next week, but we'll have to add consistency of care to our list of questions. We had to start somewhere since family members are all over 100 miles away. It is quite daunting. If we were both well, we could leave considering this issue longer but with a carer aged 80, with developing health needs, it is beginning to feel we need some ideas.

You are wise to be exploring this now. I am just restarting having some short visits for personal care (showering mainly). The agency is Bluebird Care. Looking at their current charges to give you a starting point for comparison:
Long term live in care for couples, £1670 per week.
I think most care homes would be around that or more for 2 people.

 

[Binkie4]

You are wise to be exploring this now. I am just restarting having some short visits for personal care (showering mainly). The agency is Bluebird Care. Looking at their current charges to give you a starting point for comparison:
Long term live in care for couples, £1670 per week.
I think most care homes would be around that or more for 2 people

Nearly £90,000 a year. Whew! We had hoped live in care might be cheaper as well as more suited but I think it might need to be privately arranged.

 

[Trish]

For the sake of wider discussion rather than any particular individual's situation, I am aware that in my local area there are also mixed care/nursing home and high dependency sheltered housing developments. The sheltered housing is independent living but with more care provided than in a standard sheltered housing scheme and with the provision of inpatient time in the nursing home/care home as and when when needed.

All very expensive and has to be self funded, so only available to those who can afford it, often by selling their home to buy their sheltered flat or house, and then high weekly charges, but not nearly as high as living in a care home or having live in carers. It means there is always staff on site who can come quickly in an emergency and in house carers you can pay for the number of care hours you need. Some also provide meals in an in house restaurant, again, at a price of course.

I realise most of this won't apply to the many people with ME/CFS who can't afford all this and have to depend on whatever social services and local housing authories deem they need. It also doesn't apply until you're old. I think we really need sheltered housing schemes for self funders that cater for people with disabilities, not just for old people.

 

[Binkie4]

Our experience of Social Services was very brief . We rang to see what advice could be given to elderly people who were beginning to find managing at home more difficult ( I had just been hospitalised with an anaphylaxis and had been discharged with a long list of Consultants I would need to see, and being warned I would need help in sorting all this out) and were sent a single sheet list of care agencies. That was it! I think they checked whether we were self funders first which we will be.

It was similar to when we requested advice with the choice of a wheelchair from the Health Service, having made an expensive mistake with our own first choice . Again there was no advice available. Maybe you have to be referred by another agency to be taken seriously which is unfortunate if you are someone who recognises when you need advice.

 

[MrMagoo]

For the sake of wider discussion rather than any particular individual's situation, I am aware that in my local area there are also mixed care/nursing home and high dependency sheltered housing developments. The sheltered housing is independent living but with more care provided than in a standard sheltered housing scheme and with the provision of inpatient time in the nursing home/care home as and when when needed.

All very expensive and has to be self funded, so only available to those who can afford it, often by selling their home to buy their sheltered flat or house, and then high weekly charges, but not nearly as high as living in a care home or having live in carers. It means there is always staff on site who can come quickly in an emergency and in house carers you can pay for the number of care hours you need. Some also provide meals in an in house restaurant, again, at a price of course.

I realise most of this won't apply to the many people with ME/CFS who can't afford all this and have to depend on whatever social services and local housing authories deem they need. It also doesn't apply until you're old. I think we really need sheltered housing schemes for self funders that cater for people with disabilities, not just for old people.

I agree. I really want in on a sheltered housing scheme but I’m not old enough just yet. Even “over 55s housing” would do