Extra care home?

[Theresahairbrushinthefridge]

So....

90 year old diabetic. Now managed and not needing insulin.

Permanent catheter. No dementia. Reasonable mobility with walker. Needs help washing. Cannot prepare own meals.

Lives alone. 4 care visits a day. 1 45 min. 3 30 min. Always different people. Random timings. Put to bed for 13 hours a night. Getting pressure sores and distressed because of the long time in bed.

Contribute approx £120 per week to carers. On a direct payment scheme. We have private carers in place 4 days a week doing a mid morning 2 hour visit.

Has 20k savings. No other assets. In a council one bed first floor flat. Nowhere for anyone to stay.

safeguarding complaints for the second time. She ended up in a and e on Sunday. One with this agency. One with the previous one who we sacked. She was afraid of the carers and they lied.

We are at our wits end.

Council have no capacity with two other agencies who are supposed to have a better reputation.

They are suggesting extra care home. I have read about these and it doesn't appear to offer the support she needs.

What on earth do we do?

My mum was in an extra care sheltered home until she became too ill with dementia to manage even with carers.

Her one was very good. There were carers on site so you had the same care team every day (different people each time throughout the day but the same faces over a week).Mum needed help with medication and also had help with washing when she'd had a fall and was a bit bruised.

Meals we did via meals on wheels (actually Apetito as they do that scheme here). We used to do frozen sandwiches for her lunch and the carer would take them out in the morning for her (she'd then put them back then eat them frozen which is when we realised her dementia had got to the crisis stage...but it would have worked well a couple of years ago when she really understood what was happening).

Mum's extra care home had a restaurant downstairs which did subsidised meals - breakfast through to dinner - the carers used to take one lady's meals up from the restaurant for her each day as she was housebound and it worked for her.

It's worth going to see one - getting in is the problem but your relative would have a good case if a place were available.

I'd definitely go into one myself if I were getting to the unable to manage completely but still able to cope stage. Mum's place was new build and very, very nice.

The Extracare Charitable Trust homes are excellent. I've visited most of them for work, and they all share high standards and have an activity focused ethos that supports the residents to remain active and engaged. My mum has said that if my dad passes before her, she will sell her house and move into one of the EC villages.

I'm not sure about the other chains of extra care homes though, they could be very different but I have no experience of them.

Is she council funded at the moment, it sounds like she is having the maximum home package. I would ask her g.p. to make a home visit, to make a referral to the social workers and occupational therapists to carry out a full care needs assessment. The pressure sores are a safeguarding issue, I would email the adult safeguarding lead, copy in the c.q.c. does anyone have power of attorney for her. She may be able to manage in a residential home, it depends of how much nursing care she needs. Ask for a community care assessment, is she still in hospital.

Thanks for your replies. She is back home. UTI. Probably caused by the failure of the carers to connect her night catheter on a number of occasions.

Certainly not picked up by the carers. When I took her home there was urine left in her night catheter bag which contained a mixture of sediment and blood.

She is council funded. This seems to be the difficulty as we are beholden to their decisions and timescales.

We feel she is at risk at home. UTI. Multiple district nurse call outs and a fall in the last three weeks.

When the carers are on time and consistent it works reasonably well. Sadly that rarely happens.

From what I read about extra care - it sounded like she would have less individual support not more. At the moment she relies on carers to feed her. Dress her. Empty the catheter 4 times daily and put her to bed and connect her night catheter. Would that happen in the ECH?

The extra care charitable trust look like they offer this, it's individually tailored to people's needs. A residential carehome in the u.k. could manage her needs. A residential carehome in the u.k does not have a registered nurse on duty but carers are trained to give medication, feeding, catheter care, pressure areas and call district nurses to do things like injections and dressings. There are staff on duty 24hrs a day.

Anyway she can move in with you?

Not without us moving. I would feel much happier if she was with us.

It's a complex situation. Her sons live far away and their wives both have different debilitating life limiting illnesses. That leaves us without any authority but having to pick up the pieces.

It's a lesson in not burying your head in the sand and getting things in place whilst it is still possible to do so.

Does anyone understand how extra care is funded. They talk of renting or buying. But she doesn't have enough money to do anything long term. No assets. No house. Council tenant.

If she decides she would like to go into a carehome then the social services will carry out a financial assessment for her to get funding, they can also do a care needs assessment to see how much help she needs. They can then go back to their panel, look at what kind of place can look after her safely, give you a list of the homes that have vacancies in that price range and the council pay for it. Alternatively the council may be able to move her into sheltered accommodation but that wouldn't be much different than where she is now except for having a warden on duty, care alarms fitted , she would still have the carers gping in. Are you in the u.k. who is talking about renting or buying.

Thanks you are being so helpful.

She is in the UK. Southwest.

When I googled extra care homes I the area it seemed to suggest that you needed to buy or rent.

I think from your advice our first step is to go back to her GP. I will get her son to contact them tomorrow. It's really tough, we are not in control but are involved day to day and have to pick up the pieces.

Our concerns (amongst others) are about the length of time she is left for overnight. She is increasingly using her panic button to call out for catheter issues both perceived and actual. Presumably this is what we should emphasise if we want her to move to somewhere with greater supervision.

I know the South West quite well. Extra care is also called assisted living, some of the homes offer enhanced care which means there are staff around 24hrs a day but I don't know what help they offer, these seem to be rented properties for people who are quite independent. Looking to the future maybe a residential home would suit her, all her care would be done by the staff, she would have her own room, staff are on duty 24hrs a day, the council could fund this, a nursing home offers a bit more nursing care but if she had a community assessment they would see what help she needs. You can Google it, it's called c.h.c. checklist and it's done on a kind of points system. I agree it would be best to speak to her g.p. first, say you are concerned about her, it's her future care you need to think about, she doesn't want to keep moving and they may agree to finding her somewhere near you, that depends on the social services but no harm in asking. It might also be worth trying for power of attorney while you can if she agrees, it makes life a lot easier, good luck with it all.

Thank you. Your help has been invaluable. I am going to get this sorted.

I looked into assisted living near us. Bristol. I phoned several places when she was discharged from hospital last year. They all said that they could not take her on as her needs were too high and that she needed a nursing home. So I am surprised that assisted living is being suggested now.

It's very difficult as her sons deal with this side of things.

Since then she is no longer on insulin injections but her catheter issues dominate her life.