Bringing Dad home.......any thoughts?

[Peapod]

Although we know Dad is getting excellent care at his NH his Lewy Body dementia has progressed to a point where he'd actually be 'less trouble' to look after at home (with all the appropriate help of course!) He's not mobile now due to endless falls and he can't verbalise the hallucinations he had/has.
He still recognises us and is very affectionate - any signs of aggression seem to have left him now. He's not settling in and cries to come home...
He's 'lucky' enough to qualify for Continuing Care under the NHS, so his NH fees of nearly £700 a week are being paid in full by our local authority (who have been marvellous all the way), but we're wondering if the Continuing Care 'payment' would apply if he was at home with carers visiting say 3/4 times a day?
Dad is in the late stages and we're considering the above very carefully; feel free to talk us out of it as he'd be living with Mum (who just wants him home) with the support of me and Hubby.

 

[Margarita]

but we're wondering if the Continuing Care 'payment' would apply if he was at home with carers visiting say 3/4 times a day?

Yes they would. also your mother house would need adaption done it to it first.

 

[Peapod]

Thanks Margarita - the good thing is that Mum and Dad's bungalow is already 'wheelchair friendly' so the only major thing to be done would be adapting the bathroom - and we have a wonderful plumber (who is also a family friend) on standby!
I know it wouldn't be easy, but my mother is quite frail (tho' fighting fit mentally!) and the hour and a half round trip journey to the NH 3 times a week is very tiring and upsetting for her.
There are no nearer EMI homes either - we live in a very remote place.

 

[Lanie]

I think you definitely need to consider this very carefully it is a huge commitment for both you and your Mum. Have you thought about having Dad home for a few days or week first just to see how it goes. Then make a decision, it would be awful to take him out of NH and then find you couldn't cope. 24/7 care is very hard. I admire you for considering it, but perhaps you should make a list of the benefits home versus NH.

I'm sure you'll make the right decision.

Take care

Lanie

 

[Peapod]

Thanks Lanie - I know it would be a huge decision and we've thought about a trial run like you suggest, but feel it would be too upsetting for Dad - it would be all or nothing I think.
The main issues when Dad was at home were the horribly disturbed nights and wandering, but now he can barely talk above a whisper and he certainly can't get out of bed unaided.
Also as the NH is in the middle of nowhere it can't even get TV reception (until we go digital) and it's a small point in the scheme of things, but important surely when life is so 'limited'.
I know that he gets distressed by some of the other poor residents too who are 'shouters' and he's such a quiet man.
Thanks again, I'll pop back tomorrow to see if there are any other thoughts.
XXX

 

[Margarita]

Have you thought about having Dad home for a few days or week first just to see how it goes

As Peapod says that her father not mobile , taking her father home for a few days is going to hard , because her father going to need a hoist to lift him in out of bed into bath. Your right when you say

consider this very carefully

Is that what they do for your father now Peapod ? as in need a hoist to get your father into a shower or bath , Or in out of a chair to bed ?

 

[Skye]

Hi Peapod

Sorry to be negative, but you've talked in other threads about how your dad is unsettled and aggressive at night.

Your mum is very frail - how is she to cope at night?

I undersatand how distressing it is for you and your mum to have your dad in a care home, but you say he is being well looked after. Could you gibe him the same quality of care at home, given that he needs help to get in and out of bed?

Of course, it's your decision, and I know how difficult it is for you. But please find out how much support your mum would get before you make any decisions.

Believe me, evey day I wish I could bring my husband home -- but I know it's impossible. Perhaps it would be possible for you.

Love,

 

[connie]

Dear Peapod, I too would worry about night care.

I know every case is individual, but Lionels mobility has gone to such an extent he cannot even turn himself over in bed.

Unless his position is changed bed sores can easily develope.

Like Hazel I wish every day that I could bring my dear man home.
May even manage it with good day carers, but 2 carers to turn him and change him at night, I know would be impossible to get.

Even carers at prearranged times does not always work.

I was at the home today. I (and another carere) hoisted Lionel from his chair to the bed at 3.00pm We changed his pad and washed him. Beautiful clean bed.

Must have been a leakage of pad or something because he bed was awash at 3.40. All I had to do was ring the buzzer for help.
I wonder how I would have managed at home.

 

[jc141265]

And the other side...

We've done it and Mum couldn't be happier having Dad at home again. Mind you she has enough help available so that she can sometimes go away days at a time, and a carer stays at the house when she does so...and I think this is very important, that your Mum will be able to still have her own life.
Like you though we realised that Dad was now at a point that he could be brought home again...it is much easier to care for them at home once the aggression eases off and when they are less capable of being threatening or difficult to manage.
Although many may say its not a wise thing to do, it really depends on the individual's situation. Mum ultimately came to the decision because she missed Dad so much, missed having him by her side and frankly the distance she had to travel to visit him at the home he was staying at was very exhausting for her anyway.
Mum however is a pretty robust 63yr old (although not without the occasional health concern, she was in hospital a month or two ago). So I guess your family has to decide whether the goods outweigh the bads. Whether your Mum's own health will be put at risk, and definitely make sure you have the right equipment, i.e. she may need a hoist if your Dad is difficult to move. The other side is, perhaps your mum's health wil be put at more risk if she doesn't bring your father home, I know that it was slowly but surely killing my mother to have Dad locked up and so far away, not being able to sleep beside him, not being there when he needed her. Some couples are just like that, they don't feel whole without the other...how many times have you heard of a spouse dying not long after the other one dies and people acknowledge that they can understand this?
Its not about having a stronger love its just about the individual.
Last thing I will say on the topic is a reiteration of what I said above though, I think it is very important that if you bring your Dad home that your mother is able to still have her own life. Whether she becomes a member of a club or something that gets her out of the house and away from your Dad sometimes. I say this because I worry a lot about how mum is going to cope when Dad does die. To have him there with her day in and day out, and so dependent on her, it is surely going to leave a big hole when that dreaded day comes to pass. You need to make sure that your mum will have something to carry her through after he's gone.
Best wishes,

 

[Skye]

Can I just add that it takes two people (one each side) to use a hoist without risking injury to the patient.

 

[Peapod]

I appreciate everyone's comments; we've got a lot of thinking to do! We're bringing Dad home for a visit for a couple of hours on Monday armed with a folding wheelchair and revolving seat pad for the car - I think he's really looking forward to it!
It'll be good to prove to him that his house is 'still there' after more than 3 months away - dementia is such a challenging illness that it's strange to think that the more poorly sufferers are the easier they can be managed!
Even a short trip out a couple of months ago was difficult because of his behaviour and when he could still 'get around' by himself he just couldn't sit still without everyone being on tenterhooks lest he should fall.
Anyway, thanks again for your thoughts; nothing will be rushed into - at the moment we're going with the flow!
Take care XXXXX Nicky

 

[Skye]

Good luck with the visit on Monday, Nicky, I hope it goes well.

It will give you a better idea of whether or not mum could cope.

Love,

 

[Margarita]

we've got a lot of thinking to do! We're bringing Dad home for a visit for a couple of hours on Monday

Wishing you all the best for Monday , I hope that when you get the time , your post how you all got on xx

 

[Peapod]

Deed done! And we think Dad enjoyed himself; he did seem to recognise his house when we gave him the grand tour and we all had a bite of lunch together. I think Mum is realising how difficult (impossible) it would be to have him home - he may be almost immobile but he still tries to stand to say, go to the loo, which is such a shame because he's been incontinent for some months and he naturally hates not 'going' normally.
Our real struggle was getting him in and out of the car and into his wheelchair despite a revolving seat (We ache all over!).
Anyway, it did give Dad pleasure tho' he got a little agitated when we got back to the NH; think it was all the 'fussing' mainly.
Hopefully he'll have a good night's sleep after all the excitement!
Take care, Nicky XXXXX

 

[Margarita]

Anyway, it did give Dad pleasure

Am please to read that. Also hopfully a nice warm bath for you will cure those aches

 

[Peapod]

A nice hot bath AND a glass of cold white wine coming up!

 

[Skye]

Nicky, well done!

You've had your dad home, given him and your mum some pleasure, and convinced all of you how difficult it would be.

I hope your dad settles OK tonight, and you enjoy your well-deserved glass of wine.

Love,

 

[lesmisralbles]

Dear Connie

Must have been a leakage of pad or something because he bed was awash at 3.40. All I had to do was ring the buzzer for help.
I wonder how I would have managed at home.

With a great deal of difficulty, or not at all
Like you have said, it is not as bad if the person is mobile, but if not mobile
That is my biggest fear with Ron. If he goes off his feet

Barb X