Huge decision to make. Incredibly long post. Sorry!

Savvy_Sue

Errata wrote: »

I honestly can't see how your needs as you have detailed them can be met,

and my worry would be that they'll say "yes, yes, of course, we'll do all that" but then when you ask about your respite, it won't be possible to arrange it now, or you'll be expected to sort it all out.

schizometric

This must be an incredibly difficult situation for you, especially given that it appeared to be going so well for quite some time. I'm not a psychiatrist by any means (I'm an aspiring clinical psychologist), but it sounds to me like the medication your husband is being given is causing some schizophrenia-like side effects due to the increased dopamine levels in his body. This might be something worth checking out if you are to continue living with him as a lodger as it may be solved by a change in medication if he is taking a dopamine agonist. This may also cause his impulsive behaviour such as jumping on the plane to Manchester.

It sounds like you want to act to protect him as best you can whilst also protecting your relatives and lodger from his actions. I've worked with mainly men, with acquired brain injury, and albiet with a different problem, this is something I have seen a lot. Many people (women mainly again because there is a male predominance) struggle to maintain the relationship when they feel that that their husband is no longer the person that they married, may be a risk to yourself, your family and your finances. I can't imagine how it must feel.

Although no one can tell you what to do in this sort of situation, I feel that, given all you've endured, it may be worthwhile trying to get a referral to a community mental health team, so that providing he moves into a council flat/supported accomodation, they are involved in his direct care provision. Although it is a lot of money to lose from his DLA, you should perhaps consider the effects that having him stay with you might be having on your own wellbeing. As you have said, you will still have the money from the lodger. Do you also have another room you could let out or something to make up some of the difference?

I hope this helps and wish you the best.

KentishLady

Dear all - an update .

Tomorrow we have the care plan assessment meeting at the hospital.

I intend to stick to my guns and insist on:-

1) a carers needs assessment for myself (which I am entitled to by law)

2) a disabled persons needs assessment for DH (which I believe he is also entitled to by law) to take into account both his physical and mental health needs.

I am determined that his care plan WILL be needs led rather than service led (i.e. they won't be allowed to say these are the services we provide - which ones will suit DH. Instead they must identify what his physical and social needs are and then work out how those needs can be met).

3) a phased discharge from hospital by which I mean they start by trying out those activities with DH before he is discharged and allow him "home leave" starting at just a couple of hours at a time when I am available to care for him. I believe it is essential to have the proposed routine in place, and for DH to be happy with the planned activities before he comes home permanently.

As you can probably guess from the above I have decided to have him back home but on my terms, and only if my and his needs will be met.

We will unfortunately have to let the lodger go but this was on the cards anyway as my mum will be staying with us 3 days a week from november so she can look after my nephew when my sister returns to work.

I am currently researching about carers and social/health assessments online and can see that some of the websites refer to direct payments whereby the disabled person or carer is given money to purchase the support required in lieu of services provided by the local authority.

Does anyone have any experience of this? I understand that they are meanstested and wondered what the maximum income was that you are allowed to have before you are not entitled to the payments.

Thanks for your help.

KL.

Js_Other_Half

I've only had experience of Direct Payments with for children with a disability - they are not means tested. The children can use them (via their parents) to have someone help with personal care - getting them up, dressed, out for school, etc - or for social activities.

Errata

I can't help you with the means testing bit, but many people with serious mental health problems are now on Direct Payments. Have a look at the MIND website, there should be good info om DP there and they also have a helpline.

KentishLady

Was scheduled for 11:30 but they made a scheduling error/were running late depending on which version of events I was given. We didnt start until 12:45.

I wont bore you with all the details, but the main points which have been agreed are:

1) discharge will not take place until the care plan has been agreed and support systems in place
2) I will be getting a carers assessment
3) DH will have all of his needs assessed including mental health, social and physical needs. I made it clear I believed that all three were interlinked and it was essential that all three were taken into account when his care plan was set up and implemented.

Some of the professionals were clearly not too happy about my insistance on his social and physical needs forming part of his care plan - I had a few comments along the lines of "We only deal with mental health needs" and "Well that would be the physical disabilities team". They also didnt seem to be too happy that I was insistant on the care plan being in place before he was discharged.

(I don't care WHO does the assessing and HOW MANY PEOPLE have to be involved. I just want him to have a care package that is appropriate, meets ALL his needs, and DOESN'T rely solely on me to provide him with everything he needs).

I feel my next step is now to sit down (again!!) and write down literally everything I have been doing for him that has enabled him until now to survive and stay out of trouble.

I really don't think that some of the people realise how much work goes into living with and supporting someone who has such complex problems. I really try to allow him to have as much independance as possible but without allowing him to get into sticky situations which might lead to trouble. Maybe I have been too protective but I am convinced if it wasnt for me he would now be living on the streets or worse. I think he agrees with this although he says he'd probably be living in a bedsit (more likely he'd have ended up dead or in prison in my opinion). When I think back of the times I have slept with our front door keys under my pillow because I knew he was psychotic and didn't want him out in the middle of the night doing god knows what. I shudder to think of the danger I was putting myself in - he could have flipped any number of times in the past 7 years.

Rant over.

I will sit and go through all the little things I do which have helped stuart in the past and type them up. Might post up later for your perusal if your interested. lol.

KL.

miss_corerupted

This brings back memories of me growing up with a paranoid szciphrinic(sp?) father. He would get ill and would beat us and our mother etc. Police would come and he would be sectioned, the hospital would play with his medication for a few weeks, he was then realeased home where it would all start again. This went on for 21yrs and the hospital just wanted him in and out again. It finally came to a head when he moved out and left my mother and i changed the locks and refused him entry when he tried to come back so the hospital had to sort him out proberlly. He now lives on his own where he gets regular checks etc. The hospital just used to abandon this madman on us!!

Make sure they stick to their word and do what they promised, this never used to happen to us and i can still barley bring myself to talk to him now and it wasn't really his fault.

calleyw

Dear KentishLady,

My heart goes out to you. You are having such a tough time.

Good for you sticking to your guns.

I have a husband with acquired brain injury (stroke sept 2006) and by god he is not the man I married. I know I am not the woman he married. I let the hospital discharge him before he was ready to come out of re-hab but that is another story.

People don't realise how hard it is to cope with someone who is like that. I am lucky that my husband is not violent towards me. But when you have to be their emotional support and you don't get any help what so ever. You feel as if you are not their wife any more but just a carer.

I have had to drop my hours because I don't trust my husband at home all day on his own.

It is so easy to for people to say think about your wedding vows. But they don't live with it day to day.

My thoughts are with you and if you want to PM me to let off steam please do.


Take care.


Yours


Calley

Errata

The mental health team are talking rubbish ! Care needs assessments must cover all the domains in the person's life - mental health, physical health, accommodation, social needs, meaningful activities, employment needs & etc.
Clearly mental health professionals have no skills or experience in physical health needs but they still need to be assessed by someone in order for the care plan to be completed.

I've noticed that the only thing you haven't noted is the need for your husband to take whatever medication is prescribed for his mental health problems. One of the biggest problems for mental health workers is encouraging someone to take and continue to take their meds, as often people stop when they feel they are completely stable and consequently deteriorate all the way back to square one. Is this something you've thought of but not mentioned in your posts ?
HTH

KentishLady

Errata wrote: »

The mental health team are talking rubbish ! Care needs assessments must cover all the domains in the person's life - mental health, physical health, accommodation, social needs, meaningful activities, employment needs & etc.
Clearly mental health professionals have no skills or experience in physical health needs but they still need to be assessed by someone in order for the care plan to be completed.

I've noticed that the only thing you haven't noted is the need for your husband to take whatever medication is prescribed for his mental health problems. One of the biggest problems for mental health workers is encouraging someone to take and continue to take their meds, as often people stop when they feel they are completely stable and consequently deteriorate all the way back to square one. Is this something you've thought of but not mentioned in your posts ?
HTH

It is something that i had thought of - however, he is now pretty compliant with taking his meds. I supervise his anti-psychotic and mood stabilising medication - he takes this first thing in the morning before I leave for work and last thing at night before I go to bed. I leave it to him to take his parkinsons meds - he is the one that suffers if he forgets to take them.

I am going to make sure that the care plan covers absolutely every possible eventuality including crisis planning. Basically I intend that this will almost be a contract between DH, his support team and myself so that everyone, including DH, is absolutely clear of what is required of them and what the consequences of non-compliance will be.

I feel like a bit of an ogre after todays meeting but I will not be fobbed off. DH is basically a lovely person who deserves to have a happy & fulfilling life and to have a good relationship with a happy and content wife. I intend to make sure that this happens no matter how much of a fuss and a pain in the butt I have to be .

KL.