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Care & carers

Carer has given 2 weeks' notice

(51 Posts)
Luckygirl Wed 21-Aug-19 11:59:04

Our primary live-in carer has decided that she cannot cope with OH's worsening condition as she fears for her back. I am looking for a replacement via the agency (which is very inefficient - but affordable). She says he now needs two people for transfers.

They have had to reduce his PD meds because they were making him so paranoid, especially during the night. This is why he is worse physically.

It is a toss-up with carers (and me!) having to be up half the night with him fearful he is being poisoned; or carers having to cope alone with transfers and all the care tasks when he is so stiff and immobile. Neither encourages a carer to stay.

DD 1 says he needs to be in a home now, but that would break his heart. DD2 cannot bear the idea of that. And DD 3 is neutral on the subject.

What really annoys me is that the health authority have refused him continuing care funding because he is too easy to look after! Hmmmm.

humptydumpty Wed 21-Aug-19 12:19:01

Lucky so sorry to hear this. I fear, however, that DD1 may be right: when my mother broke her hip, and with dementia, she was assessed by an OT as requiring 2 carers to lift/transfer, and that was the decision made (much like your own situation, I felt a home would be ebst whie one brother diametrically opposed the idea and the other brother sat on the fence).

At the very least I think you need to look at nearby homes and find out what is available, what he would prefer etc.

All the very best.

kittylester Wed 21-Aug-19 12:22:38

I too fear DD1 is right, especially for you, lucky.

I can understand your dilemma though.

EllanVannin Wed 21-Aug-19 12:34:12

What a predicament ! There's no easy way to a solution one way or the other but really, Luckygirl, for your own health and sanity your H needs to at least go somewhere for respite for the benefit of both of you then while there perhaps his condition can be properly assessed.

silverlining48 Wed 21-Aug-19 12:34:28

I am sorry that the carer has given notice lucky. If your husband needs two carers that would be very costly.
Only you can decide what to do now, unless your daughters are giving regular practical help, they can only offer an opinion. Full time care in a home is a very hard decision but it may be the time to consuder this now, caring is really very hard for everyone involved but mostly for you, the carer. It has its advantages though because when you visit you can concentrate on just spending more quality time together. Its a tough one though.
Assume you will have spoken to the gp re medication. Is a care manager involved, would it be an idea to request an assessment from social services.
In the meantime i encourage you to appeal the continuing care decision. I know its a faff but appeals often work out.

MawB Wed 21-Aug-19 12:35:58

Heartbreaking for you Lucky I assume you will still be hoping to find a replacement / replacements. Given your husband’s slight build perhaps a re-assessment by a dr or SS to assess his needs. Surely his deteriorating condition must now be taken into account.

EllanVannin Wed 21-Aug-19 12:41:36

For nearly 6 years I was nursing a terminally ill husband as well as working full time ( because I had to do ) travelling 20 miles a day, 5 days a week. Towards the end it nearly killed me as he was ringing his bell through the night and I was struggling to work next day. I thought I'd go mad !

It's vital that you have a break or risk your own health. Might I add it took years for my mind to heal properly.

Lessismore Wed 21-Aug-19 12:46:00

The " in a home" scenario is so emotive and the language is so emotive.

I am no expert but it really might be worth a try. Could you quietly visit a few, perhaps with supportive family. Sometimes people dread it, and it turns out to be absolutely fine.

Sussexborn Wed 21-Aug-19 12:49:36

Can DD2 relieve you for 1/2 nights each week. If she can manage it would be a bonus. If not she will have a better appreciation of what is involved perhaps.

FarNorth Wed 21-Aug-19 13:05:53

Does your DH have an understanding of his situation and of the toll on you?
Would it really break his heart if he knew that a care home would be best for both of you?

Is there any possibility of a sheltered living situation, where he gets the care he needs and you still live together?

Get his care needs properly reassessed; don't just go by the opinion of this one carer (although she may be right).

Bathsheba Wed 21-Aug-19 14:01:02

Oh Lucky I am so sorry you find yourself in this impossible and heartbreaking situation.

I have no personal experience of caring for somebody (maybe I have all that to come....), but I am inclined to agree with your DD1 and others here, that now it's maybe the time for him to be in a home with round the clock care.

Of course I understand your DH's reluctance - fear even - to make such a move, but do you think it possible that some of his stress is borne of an innate understanding that the present situation simply cannot continue? And that he can see the impact it's having on your health and that worries him too?

It's a terrible decision for you to have to make Lucky, but I truly believe it will be better for both of you. The sheer relief for you, being able to sleep at night, being able to visit him and just relax with him, having your privacy back at home, will be immense.

Good luck whatever you decide flowers

dragonfly46 Wed 21-Aug-19 14:06:50

I am so sorry to hear this Lucky but I also think DD1 is right. I seem to remember your DH was happy in the hospice. Maybe he would feel safer in a home and become more reasonable. I think it is the best solution for your own well being.

Luckygirl Wed 21-Aug-19 15:43:28

Thanks for supportive posts.

I really want to try and keep him home as long as possible as he is fully aware of his surroundings and really wants to be here. The paranoia is much better now one of the PD meds has been removed, but of course this makes him physically worse. And we do not know what the future holds.

One of the carers recommended to me a new better agency and I have been in contact with them - they do seem to look after their carers better, which is important, and their interviewing and vetting and training are a lot better. They are CQC registered. They also actually come out and visit to assess the client before trying to make a match. It is £50 a week more but the money that SSD are coming up with (soon I hope!) should cover that and more. House still in danger of having to be mortgaged though, whether at home or in a "home".

I am trying to get some new equipment that might make standing and transferring him easier.

dragonfly46 Wed 21-Aug-19 15:47:34

That sounds positive Lucky. I hope you find a more suitable carer.

Callistemon Wed 21-Aug-19 15:59:39

I am sorry to hear that Luckygirl

I can't remember if you said you have a hoist for your DH or not; I know that you and the carer would have to have training to use it but that could help instead of physically lifting him.

If the house is also your home would you have to raise money by re-mortgaging? The person from the HA who thinks that he's easy to look after should perhaps spend a night caring for him although he or she is probably built like Ironman.

This must be so worrying for you just when you thought things were working out a bit better.
I think that your DD1 may be right.

Luckygirl Wed 21-Aug-19 16:21:16

We have a standing aid called a Mackworth which is very good (and we could not have managed till now without it) but he has to pull himself up on it (and he finds that hard as he has a trapped nerve in his neck which causes him acute shoulder pain) and also it is incredibly heavy to push, even when he is not on it.

The physio was going to refer him for a motorised standing aid which would not involve him in any pulling up. But as always these things take time and I think it has to go to a panel to decide whether he deserves it!! I keep trying to get hold of him; and also the OT who was referring him for a special chair.

Iam64 Wed 21-Aug-19 16:27:59

Lucky - a friend challenged that “easy” to look after conclusion. He got help from another friend , retired senior l.a manager who knew how to navigate the Health - social care aspects.
I know you arent unfamiliar with that kind of border dispute. Can u get support to challenge this ludicrous decision.
I empathise with your family differing views of residential care. What about respite, an assessment of your needs could help with that. It’s something a good s,w helped us with, mum accepted she needed respite, dad agreed she did. It was a huge help

FarNorth Wed 21-Aug-19 17:12:16

That aid sounds inadequate for his needs now, although it has helped.
Respite care, where his needs can be assessed, would be a good idea if you can get it.

Luckygirl Wed 21-Aug-19 17:39:32

He has recently had a respite stay at the hospice and I do not think they would take him back just yet - he is markedly worse since then though. The difficulty is that he is desperate not to do that again.

I am fighting my corner still for continuing heath care funding. There is an organisation called Beacon that specialises in this and you can get 90 minutes free legal advice over he phone. I have had 30 minutes and on the basis of that I have put together appeal documents and arranged supportive letters from the PD nurse and from the hospice doctor. I get another 30 minutes next week and he will critique what I have done.

clementine Wed 21-Aug-19 17:47:00

What a dilemma for you . I hope the new agency works out and you manage to get two carers . One thing I would recommend, based solely on experience with my late mother would be to suss out a nursing home now, that you feel would meet your husband's needs , location, feels right etc and put his name down ! Otherwise in an emergency and with no time to have a look round, social services can step in and he could end up in a home that would not be your choice . This happened to a friend of mine , and it was a stark warning to me with my mother .

I hope it never comes to that but just a bit of advice.

Luckygirl Wed 21-Aug-19 20:18:11

Thank you for that.

There is a good residential home just down the road from here and in fact we used to live opposite it. The staff there know him as it was in the catchment of his surgery and he often visited there - indeed I would not be surprised if he had not delivered some of the staff!

There are lovely rooms there and less lovely ones, but they have him on their list - although he does not know that at present. Also, as he gets worse he may fall out of their remit.

I went to see a sister nursing home to this home when looking for respite and I hated it - just hated it. A friend came with me and she said it was not for him too.

Wherever he might go, if it comes to that, it will require a huge financial outlay again - even more than we are paying now. The system is set up to place more worries on people's shoulders on top of the original illness.

notanan2 Wed 21-Aug-19 21:12:07

DD2 cannot bear the idea of that.
Is DD2 offering to do the night shift "double-ups"?
I'm afraid I would have some harsh words with her.
He may not need residential care immediately, but sounds like he will at some point, would DD2 rather he was injuried in sub-optimal transfers at home just so that she gets to say "we didnt put dad in a home"?

Dillyduck Wed 21-Aug-19 23:32:41

Apply for a new CHC application due to worsening condition.
Social Services MUST meet assessed needs if CHC not granted, so tell them what the agency has said.

sodapop Thu 22-Aug-19 08:29:53

Life should not be such a struggle when illness strikes, the system seems designed to make things harder not easier Luckygirl You have my respect and admiration for the way you have cared for your husband and fought his corner all the way.
I agree with notanan2 it's time to seriously consider residential care. At least then you will be able to spend precious time with him instead of running yourself ragged over organising his care etc.

silverlining48 Thu 22-Aug-19 14:12:39

I expect it’s being considered, but it looks like mr lucky is against the idea and if so it’s difficult to insist on something he clearly doesn’t want at the moment which makes it very hard for Mrs lucky who has the care responsibilities which are exhausting. I feel for you both.
I hope your phone call with Beacon helps. I would say again definitely appeal the CC.