Home care vs care home?

Good evening all,

My dad (80yo) who has early stage alzheimers, had a small stroke and multiple TIAs in the last decade had a major stroke on or around New Year’s Day. We’ve been advised the likely prognosis is that he will require a significant level of care going forwards.

He has lost use of his left leg completely and has only limited use of his right leg (his mobility was poor prior to the most recent stroke anyway), incontinence, difficulty swallowing without aspirating although that has improved slightly so he has been taken off a feeding tube and is able to feed himself with difficulty as his arms are both significantly weakened. He is unable currently to remain sitting upright unaided and unable to reposition himself or sit up independently.

My family’s financial position is such that he will require significant state funding in whatever care path lays ahead of him. His home is a bungalow which he owns with my Mum who is willing to provide as much care as she can but would not physically be able to lift or move my dad if that was required.

My question is, is home care an option? Would carers be able to come to their house to care for my dad or is that something only self funded people have? Or is the level of care my dad would require too great for that?

I guess then if home care isn’t an option we’re also wondering how much say we get in which care home my dad goes to if that is the only option? What happens if we want to change his care home? Is that possible if its not privately funded?

Many questions I know but I guess our biggest fear is that dad will end up in a care home where we won’t be able to visit him much, if at all because of covid rules and he’ll decline in his mental and cognitive health through lack of stimulation. Any advice or stories that might shed some light or give a glimmer of hope would be gratefully received!

Rachael.

Age uk may be able to give you some advice on care that’s available, give them a call.

You are able to visit care homes, at present you book a time slot, take a lateral flow test and you can visit, not sure what the relaxation of covid rules will do, my guess they’ll stay the same for a little while with regards to visiting relatives in care homes. There are some good ones around.

Best wishes

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Hi @r.m.lawer - I think @Mahoney has given you the best advice.

I would just add that when my grandmother had to go into a care home I was able to choose which one, although obviously the home had to have a vacancy. The social worker allocated to my grandmother was very helpful and although she couldn’t make a recommendation, she was able to suggest some places I could approach. It was state funded. A note of caution is that this was several years ago.

I do agree that you need some specialist advice and AgeUK is well placed to provide that.

Good luck.

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Hi Rachael,

Home care should definitely be an option for your Dad if that’s what he would prefer and their home is suitable. My Mum (75) is being cared for at home and carers come 4 times a day to see to her personal care needs (she’s doubly incontinent), give her the PEG tube feed and medication. The cost of this is covered by the NHS/council for the first 4 weeks (used to be 6). Your local council will need to carry out a financial assessment and if your Dad is under the threshold the council should pay the community care costs.

I would also ask about NHS Continuing Healthcare funding as your Dad may be eligible for this. We’re currently undergoing an assessment for this NHS continuing healthcare - NHS

I’ve had to push to get the process started and there seems to be a real reluctance locally to assess people for it, despite me reading that it should have been actioned upon discharge. Mum has been home nearly 10 weeks now and we’re still waiting for the financial assessment process to be completed so haven’t paid anything as yet.

What I will say is that your Mum does need to think carefully about what’s best for her as well. My Dad was desperate to get Mum home but I don’t think he really appreciated just how tough suddenly becoming a 24/7 carer was going to be. He wants her at home but it is a lot to take on, even with carers coming in 4 times a day.

Hope this helps :slight_smile:

Sorry for the lengthy reply, but I felt I had a lot to share which I hope will be of some help…

Hi @Rach55 and @JenP.

I am not sure if we were unlucky, but when we approached AgeUk we found they were not very helpful at all. Maybe this is different depending on the local staff of AgeUK offices. We ended up going to Citizens advice and then doing our own research.

We did find the Stroke Association a lot more helpful including advice on trying to find the best option for care including “self-managed” care package when we were having difficulties with the carers from the council appointed care agency.

With regards to which option is best, our approach was based on what Mum wanted. Before she had the stroke, she had mentioned to us that if she were to fall ill, “under no circumstances should we put her in a care home”.

So this was her wish, but not something she necessarily had control over since if she lost the ability to make her own decisions, we would have to decide for her i.e. under Power of Attorney or Deputyship. As it turns out, following the stroke she did lose ability to make her own decisions and now all decisions are made for her by someone else and judged to be in her best interest.

Because of her stated desire, we opted to care for her at home, though we did initially look at care homes because we were told by the stroke consultants that caring for her at home might be extremely challenging due to the severity of the condition and that “there are some very good care homes out there”.

Trying to decide what was best for her, we visited a few care homes that were “recommended” but found them to be unsuitable for one reason or another. In our case, the council social worker assigned to Mum and the hospital were keen to get Mum discharged from hospital asap and we were being “pushed” to choose a care home. So effectively, by the time we had seen the third home we were told we had to choose one of these. Since we felt they were not going to meet Mum’s care needs as she would have wanted, we decided to go for the home care option.

For us this was a big challenge as the home was totally not suitable and needed adaptations to allow Mum to be cared for properly. But again, we were pushed to take her home and then the adaptations would be done once she was home. This is actually quite crazy when you think about it, but we got the feeling that the prognosis or expert opinion was “Mum would not likely be around for too long”, though they never used these words. Btw - nearly 3 years later and she is still with us and getting better by the day :smiley: :pray:

Either because we were pressured, or because we got frustrated, we brought Mum home after some initial minor amendments to the home i.e. converting the downstairs living room into a bedroom for Mum (she had her bedroom upstairs but we felt she would be better off downstairs). To cut a long story short, then Covid struck and all visits etc. were effectively stopped and Mum was stuck in her downstairs room with adaptations on hold. It was a nightmare time with Mum effectively isolated in a 4m x 3m space that was filled with a medical bed, manual hoist, recliner chair and trolley.

We had help from agency care workers 4 x a day and Mum was/is totally dependent with everything. She is double incontinent and PEG fed (now coming to 3 years).

It was nearly 9 months after Mum came home that the minor adaptations finally got done – widen the door so a wheelchair can be easily used to take Mum in and out of the room and a ramp to allow her to be taken outside. This was a very stressful time for us and we can imagine for Mum too as she was effectively locked into the 4m x 3m room for the best part of 9 months with only care workers as her human contacts.

But despite this, we (the family) feel we made the right choice to bring her home. We believe, her condition is too severe for a “normal” care home to cope and she would not get the “personal” one-to-one she gets at home. Her care needs are very challenging and we can only guess how much they would cost if we were to find a home capable of providing the level of personal care she now enjoys. We can only say that for her, maybe she is lucky that the family is able to care for her with some help from agency care workers.

Just to add, it has been very stressful and emotionally draining at times and family relationships have been tested to the hilt, though we are pleased to say somehow we have managed to survive Covid and the stress and strains of looking after Mum and for us caring for her at home is definitely the right option.

We have had feedback from others who have said that they were not able to offer the same to their loved ones, or their loved ones chose to be cared for in a home etc. So from that, we conclude it may also be a personal choice thing coupled for affordability since it may require some sacrifices. Being a 24/7 carer means I can no longer go out to work and my social life is significantly different to what it was before I became a 24/7 carer. There are many things to consider.

Finally, from experience and from posts on this forum, help for SS and Carers varies widely even in the UK, so I guess each situation has to be reviewed based on needs and availability of support.

So home vs care home?

ManjiB

Am glad you have managed to keep your mum at home. Mine still in hospital pending discharge but as I don’t live nearby and can’t afford to move, our option is limited to a nursing home. My mum has all issues you have mentioned so she will need 24/7 care.
I know it’s hard but you won’t regret it. :heart:

Hi Rachael,
Hope you are making progress with plans for your Dad.
I have similar dilemmas with my brother who is a young 67 but suffered a severe stroke after kidney surgery (cancer, clot).
With mobility and toileting (as it is called) being the main concern. His cognitive capability, and humour (thankfully) is good.
So although a Care/Nursing home is looming as he exits Stroke ward in hospital, we went through the following options:
Return Home - not possible.
Stay with family - not practical - yet
Find a private rented home - live in carer? How? 40k+/year
A private rented home - visiting carers - not suitable as need overnight contingency. 12k rent plus 20k carers (guess).
Care Home - most obvious. Have the facilities. But so expensive. 50k/yr+
Specialist Rehab Centre - residential - do ANY exist? Cost?
Foreign Care - Marigold hotel style. I really see a lot of potential here, for 6-12 months, if transit can be managed. Plenty of physio and care and maybe <20k/yr

Hope this helps? Any other options?