I need respite

[magenta]

Hi everyone

My husband has gone on declining as inevitable. He is not a nice person most of the time and is now almost entirely dependant on me. He spends all the time in bed except when I get him up to eat at the table. Washing and shaving occurs when he is in a more compliant mood, certainly not routinely. He can walk very little and I usually move him with the hoist. He does get to the loo sometime but generally I would describe him as doubley incontinent. Oddly at night he walks much better, but that also means he falls. Most of the time he does not know who I am am and is lost in time, probably junior school age. He was sectioned over 4 years ago as he was violent and repeatedly left the acute hospital where he had been asked to stay for a few days as his heart failure was causing problems.

So I have a 6 foot, 12 stone, sometimes violent, very dependant man with heart failure and lbd. He never was social, never really wanted company, preferred his books. He is very prone to telling anyone in his room to go away. Most of the time I cope well. I don't actually have a life of my own and the carers' assessment has so far produced nothing. They will provide a 'sitter' but the sitter is not allowed to use the hoist or toilet him. I have no idea how to predict that one!

However my problem comes from my wanting to go to my daughter's exhibition and graduation cermony. I have been to SS but I am not optomistic. The Respite care home manager came yesterday and she sat telling me how they get all the residents up and washed and dressed and they can sit in the dayroom and watch TV or what ever they want to do. I told her that my husband would want to stay in bed. She saw my husband who was in bed and he told her to leave.
When we left him she said initially that she thought the repsite home would manage him but then said she thought care at home would be better and that as she has not seen the SS notes on him she would discuss it with them. I do not feel included. The SW spoke of a private care home that might take my husband but it is 40 miles away so the heart failure precludes that. I don't want to risk his death and that be forever associated with my daughter's graduation!

I want to be able to sleep in the house in order for me to drive to the university and make several trips in the following few days, to bring all my daughters stuff home and my sons stuff from another uni further away. I also have live stock on our smallholding and need to be at home to feed them. I really want my husband in respite care out of the house. I do see that is a problem as I do not actually know how I will move him especially if he does not want to go.

I am not enthusiastic about leaving people I don't know in the house.

The CPN said recently that she thought my husband would be within CHC, but followed that by saying there is ONE CHC respite care bed in carmarthenshire, so you are not likely to get it.

I wondered if anyone has any ideas. It is the first time I have asked for help and don't feel at present as if it is going to happen.

Magenta

 

[Bronwen]

I'm sorry I can't help but wanted to send you a BIG HUG..you have so much to deal with and I wish you all the best in getting some help.

Congratulations on your daughter's degree..I do hope you can attend the graduation and enjoy that special day.
love
Bronwen

 

[danny]

Magenta,my heart goes out to you.
I would have another word with your CPN.You are entitled to respite breaks and in your case you should not even have to ask for it,if you did not provide care 24/7,how much would it cost the state.

I`m afraid you are going to have to get a bit tougher.

Have you got a independent advocate who could fight your husbands corner? Ask the CPN or your local AS group if they know of any,they can help immensely with these type of problems as they know the system and can be quite a powerful voice.

It would be very difficult to find care at home since your husband has quite alot of needs,not many care agencies have staff trained in this type of work.

I hope you get things sorted,let us know how you get on,good luck,Angela.

 

[imac.girll1]

Hello Magenta,

My only thoughts on this situation is to call emergency SS and tell them that you can not cope and that you need respite.

Obviously this may or may not be the right way, but i think you need to actually say to them that you have right to respite and that you require this at this time.

Others will be along with much better advice.

Good luck.

 

[Helen33]

Dear Magenta,

I feel a good start is by being determined that you are going to go to your daughter's graduation ceremony and that this is not much to ask in the grand scheme of the caring that you do. So once that is settled in your mind, then there is the task of doing everything you can to make sure it happens and that your husband gets the best care possible for that few days.

You will need plenty of time to get this organised and so it would be a good idea to contact Social Services and emphasise to them that it is urgent because your husband will need 24/7 for 2 or 3 days on such and such dates as you have to be elsewhere.

I was in a similar situation when I needed a holiday and Alan didn't want to come. I was arranging with Social Services for them to provide care for a fortnight but in the end Alan decided he did want to come after all I was told I would get the cover as it was a one off (or once a year). I suppose you need to think whether you want to just deal with this current situation and try to get what you need because time is of the essence or whether to arrange for rolling respite?

Whatever you decide I will be wishing you well and will look forward to seeing how your situation is resolved

Love

 

[gigi]

Hello Magenta,

You are very much entitled to respite..and amazing for carrying on for so long without help.

This is purely a thought..but if you feel you are getting nowhere with your CPN or SS, you can phone AS and ask to be put in touch with Advocate who will act on your behalf and do the necessary liaising.

Love xx

 

[Winnie Kjaer]

I think respite through SS depends on your financial situation.
Has your husband been assessed if not that is the first place to start. If he qualifies for paid SS care or a contribution to his care, then you should qualify for 4 weeks respite per year.

If he does not qualify then it is down to you to organise private care, even though SS can help you with organising it. Have you had your own carers assessment?

I have used 3 different domiciliary companies over the years and all three are qualified in looking after sufferers in your husband's position. I am no sure why Danny thinks this is not the case perhaps I am missing something.

It would be very difficult to find care at home since your husband has quite a lot of needs,not many care agencies have staff trained in this type of work.

It would unfortunately involve 2 carers as not one person would be allowed to use the hoist by themselves. For me the cboice would always be to have carers in my home, even though I used to hate the thought of it. I have however now got used to it, and relish having most of my housework done at the same time. Bonus.

I don't know when your daughter's graduation is, but as it takes time to organise these things, particularly if going through SS I would commence immediately. You may have to do a lot of pushing, shouting etc. before you get results, however the help is out there one way or another.

I hope you manage to get organised for this important trip.

 

[danny]

Hi Winnie,hope you are ok.
There are not many dom care agencies who have staff trained in managing violent behaviours.This type of behaviour really does need specialist input Winnie.

 

[Winnie Kjaer]

Hello Danny,
I am just fine thank you and hope you are too.

Thank you for putting me straight, yes I agree with you in general but because Magenta wrote

sometimes violent

I feel rightly or wrongly that this is left rather ambigiously to the individual's interpretation. Is it once a year or daily. If very rare, one may wonder if it had to occur at the very respite time that Magenta is away and if it happens more often then IMHO Magenta needs more help anyway.

I do appreciate that I may be speaking out of term as I have no direct contact with violence even though my husband is by no means co-operative when receiving care and will do anything to stop me with his good hand and leg. It takes an experienced carer to support me with distracting him.

I am sure SS will decide what is in Magentas and her husband's best interest as far as the care is concerned in general.

 

[scared daughter]

Hi I wish I had some useful advice, you do need and deserve resbite care, I hope something can be sorted out for you xxxx

 

[magenta]

respite

Thank you all for the thoughts and advice. I actually first asked for respite via the CPN in February as I needed to be referred. SS here at least will not accept self referals.
It took 4 weeks for the SW to come to the house and then he did not have the right paper work. It was another 4 weeks when I phoned and he said he was going to phone to come the next day and it has taken 10 days for the care home manager to come 2 miles to see me.
I am going to phone the SW in the morning and then I will go for an advocate to help me. I have already spoken with GP who said SS will do anything to wriggle out, and he will back me.

My husbands behaviour is very mixed. He can be charming. Generally I have 2 or three days amiable and then for no obvious reason he changes and I get 2-3 days horrid followed by days when he is unpredictable. He hits out with clenched fists and will crush hands and forarms with finger nails pressed in. I usaually can see it coming and get out of the way. He does not move quickly.

The CPN has witnessed him having what compares with a 2 year old's tantrum. I have lorazepam, which is given in food. But it is not always easy to get him to eat when he is being difficult. The CPN has said to leave him alone when he is unco-operative and work with him when I can. I am waiting for him to be reassessed by the consultant but in a rural area I have to wait until they come this way. The CPN seems good but she no longer comes alone. The OT technician (male) comes too. They say this is so he can distract my husband. The OT tech is also familiar to my husband and in the past, when my husband was still mobile, took him out on trips.
The CPN does not think my husband's behaviour is very uncommon.

The local AS lady has said Allied Health care will come out as far as me but I am uncomfortable with leaving people in the house. I was heartened to see Winnie that you have got used to it.

Danny I will have to pay the local authority's charge but am happy to pay £167 for a weeks respite and even that is reduced if not all 7 nights are used.

Always looking on the bright side, in my husbands wanderings lost in childhood he has come out with names from his family's past that have solved mysteries in family history tracing and names of shops he went to with his mother in wartime Leeds.

The cynic in me is sure SS make finding the way so hard so people give up.

Tanks to all for the support and ideas.
Magenta

 

[lesmisralbles]

Hello Magenta

Do not give up

Barb XX

 

[danny]

Hi Magenta,I`m sure yoy will sort things out,please let us know how you get on.

 

[Rosalind]

Hi Magenta

Have you a Carers' Group in your area? When I was in a slightly similar situation to you, I found them, and was told that they were there to help ME, not the sufferer. The woman said that if things became impossible, she would help me take my husband to a hospital or somesuch where there were people who had spent years training on how to deal with dementia patients, and I could just hand him over. It never came to that, but simply knowing that there was someone there to deal with breaking point was a huge help.

I also found that it was no good being capable, 'mustn't grumble' and stoic with CPNs, Social Workers, etc. It cannot be right that you have to cope all on your own, and you need to show them that you are stressed out. Bad hair and wild eyes when seeing them, plus crying, are all to be recommended when dealing with these people, even if this is against your nature.

Of course you must be at the graduation. And you should also have regular respite care so you can do the other thngs that will enable you to continue coping. And keep a diary of how your husband behaves, so you remember just what is happening when, and can report this to the people on the case.

Good luck

Rosalind