Does Dad really need to be in a Care Home?

[NormaSnorks]

Dad is 80. Has had Parkinson's for 3-4 years. Has lived alone (Mum died 8 years ago) in sheltered accommodation near me for last 6 years.
Things were getting a bit hard for him, and I had flagged up to his GP that I thought he wasn't coping on his own:

• he wasn't washing / couldn't get in bath etc
  
• wasn't eating proper meals
  
• stopped socialising in communal activities of the building
  
• Losing weight and very low blood pressure
  

we had a carer coming in to bath him 2-3 times a week, and I'd just put in place another one to come in and prepare meals, but then he had a fall which put him in hospital.
He was very confused, so discharged to a nursing home for a period of convalescence, and to give us time to assess how he was once he 'recovered'.

That was a month ago, and he's still there. We now need to decide what next.

GP says she thinks he needs to be in care, but not nursing care.
I took him for a trial visit to a nice residential home, but they said they couldn't take him, as he 'needed too much care' - they said he definitely needed nursing care!

He would be self-funding, so social services don't seem very keen to do an assessment

He seems to find the communal/social aspect of care homes rather stressful, and I'm just wondering if it really is such a good idea, or whether he couldn't still manage at home with numerous carers coming in.

HOWEVER - he was beginning to do things at home which were becoming worrying e.g. putting fresh food away in cupboards until it was green with mould/ putting potatoes in pan on cooker without water/ putting things in weird places (electric razor in fridge/ dirty cereal bowls behind curtains etc)
Sitting in dirty, food-stained clothes, not washing face etc.

I certainly feel a huge relief knowing that he is safe and cared for in a home, but I wonder if it IS the right thing for him?
He can't articulate what he wants - I just don't know how to decide!

[Pumpster]

You're still entitled to an assessment even if he will be self funding. But you don't need one, the home will do an assessment if you don't need ss funding.
I work for ss finance so pm me if you want to know anything and I will try and help.

[XBenedict]

It doesn't sound like he's going to be very safe on his own at home even with a maximum care package. I'm not sure from your description why he would need a nursing home.

Can you ask the residential home what nursing needs they think he needs?

[RustyBear]

One option we were considering for my Dad (102, living on his own at home with carers coming in every day, still mentally agile but with balance problems and failing strength, so he couldn't get up from a fall) was a live-in carer which would have allowed him to stay in his own home, which he was very keen to do.

Sadly, he got a chest infection and died a fortnight ago, but would this be an option for your Dad?

[XBenedict]

Aw Rusty I'm sorry to hear that

[NormaSnorks]

Thanks for the responses.
I think the care home who refused him just didn't really understand his Parkinson's - it can make him very quiet and withdrawn. Being in strange situations makes his confusion / dementia worse, so he probably came across as very needy. His tremor means that he struggles with buttons/ zips/dressing etc so needs help with toilet etc.
He doesn't always seem to have much awareness of what's going on around him. The nursing home he is in at the moment moved him onto the ground floor as they said he was 'wandering' initially, and they were worried he would try to go downstairs. He's a bit more settled now, but still quite mobile and likes to walk around between the lounge and his room etc.

We saw another nice residential home today, which has lovely gardens and lots of activities and residents lounges etc. However I just worry that we will be paying for all those things and he won't really notice them or use them!
For the last few years he has spent a lot of time on his own watching TV and reading etc and I think he spends large parts of the day nodding off/ asleep in his chair.

All the homes seem to be really pushing all the 'activities' they do, and I really don't think he's that bothered, and I think he finds all the sitting at meals with other people rather stressful and tiring. (His Parkinson's already makes eating a slow and difficult process).

[CMOTDibbler]

It can be difficult when someone needs more care than just residential can offer, but not a full nursing package - we had this problem with my grandmother who didn't fit neatly into a category.

But some places are dual registered, or have a mixture of care levels available, so its worth just ringing round and visiting places to see which is right for your dad, now and going forward

[NormaSnorks]

RustyBear - sorry to hear that

How much does a live-in carer cost? I'd assumed that it would be more expensive than a home. Dad's retirement income is only about £22k, and he would have to spend another £18K or so a year to live in a home around here (SE England.)

He also only has a tiny retirement flat. It has a 2nd bedroom/ study, but by the time you got a bed in there it would be virtually full! What does a live-in carer do? IS it actually 2 carers on alternate shifts?

[YouReethra]

Hospitals discharge people to care homes as a temporary measure as there is funding because it saves money to get people out of hospital beds. The people then develop a dependency and it is very hard to get people back home.

It is a worrying trend as more and more people will end up in homes before they need to.

Push ss for your assessment that he has a legal right to have.

[CMOTDibbler]

Oh, and one thing I would say is to look for somewhere that is designed to allow 'wandering' - in two places built near us recently (and I look as my mum will need care fairly soon), one has nice gardens that are totally unsuitable for anyone with dementia as they are not secure and just open, the other has very secure gardens designed with twists and turns to make it seem like you can go somewhere, lots of benches and seats, in a really dementia friendly design but not perhaps as pretty to our eyes

[ilikefestivitea]

Normally a live-in carer would be responsible for all care needs (washing, dressing,meals). It is normal for a live-in carer to sleeping at night, with allowances made for them to be woken once or twice at night to help with toileting etc. It can be a good option, unless the client is someone who needa 24 hr care (e.g wanders a lot at night, so carer gets no sleep). Normally they are also entitled to 2 hrs off during the day, so if the client is not safe to be left alone for that time, then a second carer would need to be paid to cover that break.

Anothet option to look into is assistive technology which can provide all sorts pf gadgets to help keep people safe in their own home. Some examples: a locked breifcase for medication that carers can open to provide meds then lock again, a sensor which talks to remind someone to do something / take something with them for safety; a lockable alarming med box which opens at te right time so someonw cAn only access a single dose if medication at the right time.

[RustyBear]

I think it would probably be quite a bit more than a home - it was my sister who got the details, but I think she said £750 a week - and of course there would still be the costs of the house. Though the home that DD worked in for a while charged £1000 a week, so I suppose it depends what you're comparing with.
I think it would be one carer, who would put the elderly person to bed and then sleep themselves, but my Dad didn't get up during the night; if yours does it might not be such a good idea.

One of DD's friends used to work as a carer on duty for 24 hours at a time for an elderly lady, but I don't really know exactly how that worked - I think she did 24 hours, then had 2 days off, so I suppose there were three of them, but I should think that would be very expensive if it was being funded by the elderly person themselves.

[NormaSnorks]

CMOT - I've being doing the rounds of all the care and nursing home over the last month, and I've reviewed and visited 11 ! We'd narrowed it down to these 3...
The nursing home he is in is actually dual registered, and although we chose it as an emergency solution, I've actually grown to quite like it.
The staff seem fabulous, and seem to have got the measure of Dad.
He looks so much better than he has done for months!
But he gives the impression that he doesn't think he is old/ill enough to be there (even though there are people who are more with it/ more able than him living there).
I feel I now have the choice of:
Current nursing home - Pros: seems well run; Dad looks well; like the staff; Could be a good option cost-wise, as they may be able to claim the £108/week nursing contribution (making it that much cheaper per week for us)
Cons: Feels a bit like a hospital - quite a few very ill residents, and lots of equipment around. Communal areas a bit tired & hardly any garden

'Posh' care home - Beautiful Victorian house and grounds with modern facilities. Feels like a country house hotel. Areas to entertain family and friends. Extensive meals & bar available! Busy programme of activities
Cons: I don't know whether my Dad would really appreciate any of this, or whether I'm judging it by the things I like! After we visited, Dad seemed a bit overwhelmed....
It also works out over £5k more per year, so I wouldn't want to go there unless I was sure Dad felt that it was sufficiently better.

[YouveCatToBeKittenMe]

My dad went into a care home and was promptly then asked to leave after 2 days as they couldn't cope with him. His assessment turned out to be rubbish. He was much worse than they thought!

Like you, dad was self funded and SS were not that interested. However by that stage it wasn't an option to send him home so we had to put him in whichever home could take him, which rather defeated the object of carefully looking at all the homes we'd chosen!

I wanted him to have a home with a garden as that was his big hobby, but TBH it wouldn't have mattered, he didn't really notice his surroundings. Also similar was the fact that my dad was very mobile and liked to wander around (usually very noisily!) but always hated communal activities. He was happier to spend time just sitting in his chair.

I think it is important that your dad feels comfortable in the home rather than the amount of activities etc that they do but I found that it did matter to me that I liked the home too.
I moved my dad back to the original home in the end, but to the section that could cope with him as I felt happier with that one, it had a lovely garden and allotment but sadly by then he wasn't interested. We never used any of the ares to entertain family, or the bar / meal areas. The second home was actually slightly cheaper (but still £900 a week!).
If your dad seems overwhelmed by the second home I would leave him where he is. I moved my dad because some of the staff didn't try at all to interact with the residents and it was, quite frankly smelly! but the move did confuse him.

[outtolunchagain]

Have you looked at Very Sheltered Care , own flat , own front door but much more care than sheltered .Own front door means more privacy , own sitting room etc but you often can access a higher level of care than a care home

[NormaSnorks]

I don't think extra sheltered care would be an option at this stage.

The fact that Dad has had a fall/ ended up in hospital seems to have changed eveything rapidly.
I think if that hadn't happened then he probably would have continued on 'OK' at home for perhaps another year (or two?) with ever increasing levels of carers coming in. We had just increased his no. of carers to cover meal prep, but sadly they'd only been in a couple of times before his fall.
I just wonder if it's too later now to 'turn the clock back' and get him living on his own again, with carers say 4 times a day?
The main problem is that he's not 'with it' enough to call/ ask for help if he needs it. He had an emergency call button system, but never used it (and now doesn't seem to understand the concept). The risk of him being alone is that he would fall and could be there for hours until the next carer came in (especially overnight).

I don't know what he wants really (probably not to be in a care home!). I asked him how he rated where he is at the moment and he said 5/10, so I thought he would really like the 'posh' home instead. He said that was also 5/10 !
It's hard to justify over £40K a year!

I'm possibly thinking a bit selfishly too, as I know if he goes back home them I will still be responsible for sorting everything out like the carers/ shopping/ appoitnments etc whereas if he now goes into a home it will be largely taken care of.
I work freelance, and I've had to almost give up work to look after Dad's affairs over the last couple of years. The stress is really beginning to show on our family - we need my income, and the kids need their Mummy back .

[ilikefestivitea]

Very sheltered housing is a good idea - i've been in a few complexes that are 'very sheltered' and.they have the care levels of a.residential home but each resident has their own contained.flat, often with the possibility of.eating in a communal dining room for at least one meal in the day.

[CMOTDibbler]

It does sound like the posh place would be too much for your dad - could he really access the grounds and activities ?
If things are going well where he is, that sounds like the best option, and realistically, you aren't going to be faced with moving him again as his needs increase

[GrimmaTheNome]

Its very tough. One thing to bear in mind is that whatever his needs right now, he will almost certainly need more - you say he doesn't cope well with being in a strange situation so want to avoid a solution that works for a while but then isn't sufficient and have to disrupt him again.

The nursing home he's in may therefore be a sensible solution looking to the longer term. Some places will let residents eat in their rooms if they don't like being in a dining room, would that help(if its possible).

[YouveCatToBeKittenMe]

I can sympathise completely. I took over all my dad's affairs and it was quite stressful. I have put my job searching on hold now as it was impossible to fit everything in.
My dad never understood the call button either. They gave him a mat in the end which set off an alarm if he fell over in his room.

I liked the care home because I knew he was safe, well fed (he was only eating burgers everyday at home!) and cared for and there was always someone there 24/7. You can visit at any time and they can stay in their room if they prefer, although they are usually encouraged to mix especially at meal times.

Would the care home actually be more expensive than carers coming in that often, what happens if one cancels? That's what worried me.They would have to come in a lot and wouldn't your dad need night time care too?

I sound like a care home advert! I wish I'd put my dad in sooner so he could have enjoyed the safety and the ability to potter about without any responsibility. But he was a stubborn old man and wouldn't have gone into one until he had no choice.

[XBenedict]

"I'm possibly thinking a bit selfishly too, as I know if he goes back home them I will still be responsible for sorting everything out like the carers/ shopping/ appoitnments etc whereas if he now goes into a home it will be largely taken care of.
I work freelance, and I've had to almost give up work to look after Dad's affairs over the last couple of years. The stress is really beginning to show on our family - we need my income, and the kids need their Mummy back"

This is really important. It must be having an enormous impact on yours and your family's life. It's not selfish to have the feelings you are having. I don't think he sounds safe to be on his own.

I work on a rehab ward with many patients at risk of falls. We have all sorts of procedures in place to prevent falls happening, alarmed cushions, rounding tools but still falls happen.

Grimma's point about his needs being greater in the future is an extremely important one to consider especially as you describe his dislike for change etc. If the place he goes to doesn't provide stepped up care as required he is sure to need to move again.

It's such a difficult and emotional time for you. I hope you find somewhere you are both happy with.

[whataboutbob]

Hi Norma this is just a general message. I was next of kin for my grandfather because both my mum and grandmother pre deceased him. He had depression after gran died, and Parkinson's with increasing dementia. No one prepared me for this responsibility. To cap it all, he lived in France (was French in fact). There came a point where he could no longer live in his beloved appartment- he kept falling over, and was too weak to get himself up. He was admitted to hospital and then I had to find him a nursing home. He didn't want to go anywhere except back home. It's a bit hard saying this, but I think Parkinson's does something to someone's personality. It is a depressing condition in itself, but because it affects the brain I think it alters people. Nothing I could do was going to meet with his approval. The French system is quite directive, the social worker there basically told me to stop feeling sorry for myself, that he needed to be in a home and i had to find him one. I felt guilty for years and am just over beating myself up, because I didn't move in with him to nurse him- I knew it would have done me in, but still couldn't let go of the guilt for a long time.
It's just to say you have to act in his best interests, given the current situation and that does sound very much like he needs to be in a home. It's not selfish to think of yourself. It is a difficult situation , you are facing up to your responsibilities (some don't) and helping your Dad.

[twentyten]

More support from me too. My fil and now mil have both gone into care in separate homes. My dm lives up the road but has needed increasing care.
We underestimated the impact on dd.
You deserve your life too and work is important on many levels. Sounds like your dad is being cared for- in our experience it is the people that matter most. Be kind to yourself.

[DowntonTrout]

You know, if the staff in his current home are fabulous, then maybe you should leave him there.

Having great staff makes a home, not loads of activities or high tech facilities. Also if it is residential and nursing then it sounds like they can cope with his needs as he deteriorates. Moving people when they are settled somewhere is an awfully big disruption and can have detrimental effects on their health.

Mum has dementia and is in a home and although the paintwork is a bit chipped in places she is getting the best care in a warm and friendly environment. That's what mattered to us.

[NormaSnorks]

Thanks to everyone for these replies - it really helps just to get some other views.
A quick update - I saw Dad the day after we visited the 'posh' home and he seemed to be telling me that he was worried about it. Separately I had asked the current home whether there was a chance he could have a better room, and they offered him a newer, bigger room on a more secluded and quiet corridor. He's now moved into it, and seems so much happier there, so I think we've reached the logical conclusion - that he stays there after all.
He really seems to have regressed though - even after a month he still calls him room his 'flat' and today he was talking about needing to go shopping to get some groceries in .

Originally I was thinking about taking him back to his flat to chose some pictures/ belongings etc for his room, but now I think it might just upset and confuse him more?
Does anyone have any experience? It seems so cruel that he was whisked off to hospital and hasn't been home since...

[YouveCatToBeKittenMe]

I didn't take my dad back home. i did bring some familiar things in (which went missing), but when he talked about going home we realised he meant back to his mums house and not to where he had been living

Similar to your dad wanted to go shopping, my dad used to think he was in a restaurant at meal times and was always surprised we didn't have to pay.

I'm glad your dad seems happier now. Perhaps you could 'furnish' his room with some familiar pictures and objects from his house to make it feel more recognisable. My dad's Alzheimers was too advanced for him to ever really appreciate the care home facilities.