RESPITE - OUR RIGHT

Respite

  

The photo on the right shows Marie on her way to respite earlier this year. (2013) She is holding onto her bag (not realising the strap around her neck keeps it secure) as well as trying to walk without falling, and doing those two things at once take a lot of concentration as the effort shows on her face.

All she knew that day was that she was  going in the car to 'The house' and having no concept of time did not think too far ahead. One day - fourteen days - is all the same to this now 48 year-old woman..

It took me ages to pack the car but it was done with great enthusiasm as I loaded her wheelchair, clothes and all her favourite things including a big plastic container of Duplo bricks. Marie also takes her own top sheet and blankets. The Home only provided quilts and Marie is unable to retrieve and fix a quilt into place once if falls off her bed. She likes the comfort and security of being tucked in and when at home, sleeps like a baby, although I always have one ear cocked during the night just in case she gets out of bed. 

I have mixed emotions when Marie goes to respite. Of course I'm glad of the break and with respite now reduced to 21 days a year, (with no guarantee until it's approved each year) I am drained by the time it comes around. I spend ages wondering how to best use the 21 days and try to spread it out over the year. Marie went to the Home for a weekend in June and then two weeks in July. I have diabetes and arthritis in my hands and wanted to get as long a break as possible without wasting any days. I have 3 nights left until next April then I will have to wait until May for the next break because although the new year starts in April the processing time for the respite application takes almost a month. So that's 3 nights respite in 10 months.

Because of Marie's challenging behaviour the Home will only take her if the Social Services pay for a one-to-one around the clock support. She does not settle at night when she is away from home and is in and out of bed, sometimes only having one or two hours sleep. Long term the lack of sleep would seriously affect her health but in the short term, she catches up when she comes home, so much so that for the first week I have to shake her awake at lunchtime just to make sure she is still alive.

I could be considered lucky because lots of carers across the UK don't get any respite because their local Councils seem to look upon it as a luxury rather than a necessity.

Also lots of carers across the UK no longer have the energy to navigate the over-complicated application process since the Government removed allocated social workers who used to bridge that gap between bureaucracy and home. 

Unfortunately so many Government changes have been implemented to special needs support services. Parents/carers have also found themselves submerged in reams of paperwork and rounds of unnecessary appointments. Expecting us to fill out 24 page assessment forms to see if our adult/children are eligible for work when they know full well that they aren't, is an abuse of a carers time and energy. With all this extra paperwork and limited respite lots of carers end up having no time for themselves and nothing to look forward to.

Don't these local Councils realise it's because we love our sons and daughters and want to be the best Mums and Dads we can be, that we need these breaks to recharge our batteries? 

My kind of heaven

People asked me what my plans were for the two weeks Marie was away. That was the longest break I'd had in six years and as a full time carer I found I had neither the energy or the resources to take myself on holiday. The important thing was to enjoy the break even if it was only at home. There was plenty to do. I loved spending time alone in the shed catching up on my writing. Just switching off from my usual routine was my respite and being able to come and go as I pleased. 

However, I was delighted to see Marie when she came home. I could almost hear her breathe a deep sigh of relief when she sank into the chair- she was worn out through lack of sleep and I was rejuvenated with plenty of sleep and we soon settled back into our daily routine.

The day will come when I am no longer here to look after her and she won't be returning home, so for now I thank God for my health and stamina and for blessing me with such a lovely - special person to share my life with...  

To the Government I say: Being a full time carer is a labour of love. We carers are saving you millions of pounds in caring for our loved ones at home and not relying on you to provide 24 hour care, so please do not just look upon us as 'Benefit Scroungers' but rather acknowledge the enormous contribution carers make to the British economy and repay our dedicated hard work with decent respite breaks....

Part Two

2007 - 2 weeks after she returned home

Respite hasn't always been this uncomplicated - indeed it hasn't
In 2007 Marie returned home after a long spell living in a residential care unit. She'd been happy there for quite a few years but her needs changed and her behaviour became unmanageable. The staff could no longer take her out in the community because of her screaming and screeching and sitting down in the road. It was too far away for regular family support and I think she was feeling lost, but she was also painfully thin and seriously under nourished, so after many sleepless nights and many raised eyebrows, I felt there was no alternative but to bring her home. 

There had been lots of changes in the learning disability support system since Marie had last lived at home. Now I had two choices for Respite. Either the Social Services would provide respite in a residential placement or we could have the payment for respite to employ people of our choice to look after Marie at home. I wanted to give Marie time to settle down so that she felt more secure so I opted for the home respite. It was for 21 days a year and then our lovely agency social worker, Jan Porteous, (employed by Liverpool City Council) pushed for 28 days and we got it. 

There was also a choice for day support. Instead of using the traditional Day Centre, I opted for 18 hours a week Direct Payments and had a support worker (of our choice) to cover that post for 6 hours a day 3 days a week.  

After 6 months at home.

The agency I used for respite blended in very well. I spread the 28 days over the year and used it for odd nights or maybe just a Saturday or Sunday with no overnight care. 

Anybody who worked in our house worked as part of a team. We all sang from the same hymn sheet when it came to interacting with Marie. None of us responded to her screaming and screeching and she soon got out of the habit as we encouraged her to communicate in other ways. She thrived on the one-to-one attention and came on leaps and bounds. She looked upon the support workers as her friends and everybody loved her.

Marie had been at home for two years when the following incident happened showing me that the best laid plans can go astray. I went to bed on this particular night at around eleven-thirty and woke at one in the morning with pains in my chest. I lay there for an hour thinking I had indigestion and although the pain didn’t get any worse, it didn’t get any better. I have type 2 Diabetes which had never really caused me any problems but I wondered if it could be related. Half an hour later I decided to go downstairs and take my blood pressure. Suddenly my mouth began filling with saliva and wouldn't stop. I grabbed a bowl from the kitchen and sat with it under my chin so I could empty my bloated cheeks every few seconds. My blood pressure was extremely high and I didn't know what to do. I began to feel scared and thought I should go to the hospital. Marie was tucked up in bed and sleeping soundly. I sat in the sitting-room for a few minutes trying to think of the best way to handle the situation. If I rung for an ambulance they’d never let Marie go with me - and she would be taken into emergency care. The very thought of it brought tears to my eyes and I couldn’t let that happen.

I slowly walked upstairs, got dressed and then woke Marie out of her deep sleep. Almost three in the morning on the last week of November is not the time to put on your clothes to go out, but Marie will do anything for me and sat quietly whilst I dressed her. Part of me was in shock. How much easier if this was happening during the day. That night I felt we were the only two people in the world.
I held onto Marie's hand as we slowly walked down the stairs. I wrapped her in my three quarter padded coat, which hung well below her knee like a big duvet to keep her warm and then I rang for a taxi, which came almost immediately. I was still emptying my mouth into the bowl when we went out into the cold. Marie linked her arm through mine as we carefully walked down the steps and got into the cab. I had my cash card and two mobile phones in my pocket so I could contact the agency when I reached the hospital. I asked the driver to stop at a cash point. Although I had a little money on me, I wanted to withdraw more cash to give to the agency staff when they came to collect Marie from the hospital just in case they wanted to take her out or do something special.

We must have looked pathetic when we stepped out of the taxi and crossed the forecourt slowly making our way into A & E. at the Royal Liverpool Hospital. Marie, in a coat three sizes too big and me holding the bowl to my mouth. 

The nurses quickly escorted us to a side-room where I lay down on a trolley. Marie sat on a chair beside me. I apologised for bringing her, explaining that I was about to contact the agency to come and take her back home. It was the early hours of Saturday morning and Melanie, who supported Marie for eighteen hours a week through Direct Payments, was off duty, enjoying time with her own two small children so there was no way I could ring her.

I rang the agency immediately. The on-call did not answer the phone. The doctor came in and examined me and as soon as he left I rang the agency again. Still no answer. Half an hour passed, then one hour, then two, and still no answer. The nurse gave me aspirin and an injection in my stomach. My blood was then taken to see if I’d had a heart attack. A doctor told me I would have to remain in hospital until the results came back early evening. And all this time Marie is sitting quietly on a chair beside me.

The A & E sister asked several times if she could contact my son or daughter, but I asked her not to. Anna who lives in Manchester, was on a weekend course in a hotel with her counsellor colleagues. She had rung me the previous day to let me know her phone would be switched off and left in her room, just in case I was worried if I tried to ring her and got no answer. Patrick was working in Bristol and there was no way I wanted him jumping in a car and dashing up the motorway. 

By ten o’ clock the agency was still not answering the phone and I had to go for an x-ray. Poor Marie - no breakfast or medication and no complaining. The emergency ward-sister approached me again and this time asked if I’d like her to ring the duty social worker. I knew she meant to take Marie into emergency-care so I said no, that I would try and sort out Marie's care myself.

The staff treated us with such kindness. They knew I was doing my best to arrange cover for Marie and didn’t put any pressure on me. The nurse accompanied us to the x-ray Dept. I was attached to a mobile drip and the wonderful radiographer stood holding Marie’s hand behind the screen as my chest was x-rayed. 

My symptoms were beginning to clear. My blood pressure was down and I no longer needed a bowl, but I couldn’t relax because I was still trying to get through to the agency. By eleven that morning, a nurse came to admit me to the day-ward and told me it was illegal to take Marie in with me. I looked at poor Marie and realized with still no sign of any agency support for her that I had no choice but to ring Melanie. 

When I we reached the nurse' station in the day-ward I assured the sister-in-charge that Marie’s support worker was on her way to collect her so she broke the hospital rule and let me take Marie into the ward with me. Melanie arrived soon after with her son and daughter and took Marie home in a taxi. I knew Melanie had a family event late afternoon and couldn't stay at the house for too long so she was determined to sort out the agency cover when she arrived home with Marie.
Melanie rang the agency on and off for hours and when the phone was eventually picked up, (we had been trying for 11 hours) the on-call staff member told Melanie they had no staff-cover for Marie and that because Marie was not contracted to their agency (by the local council) and was booked privately, they were not responsible for her.  

My results came back clear at six o’ clock. I was free to go. The nurse gave me a spray to use under my tongue just in case the symptoms re-occurred. They never did.

When I arrived home Melanie stepped into the taxi that I stepped out of. It had been a long eventful day and I was glad to be home again but I was also a bit scared. I would have liked an agency support worker to have stayed with us for 24 hours until I knew I was out of the woods. 

My experience that day demonstrated how the best laid plans can go astray. I had opted for respite care at home. The agency support had been so successful that I'd been for 2 weekend visits to stay with a friend in the Isle of Man. 
The agency staff (usually the same woman) had slept in the spare bed in Marie’s room, which enabled her (agency staff) to have a good night’s sleep, knowing that Marie was nearby and safe. Marie hates to be alone and was absolutely delighted to have a 'friend' sleeping in the same room. BUT, no matter how much you scrutinise an agency, their strength and reputation is built on how supportive they are in a crisis. We had been using them for over a year but they were no longer any use to us. The time and energy I spent building up a support system with this particular agency was disheartening to say the least. Now it seemed it had all been a waste of time and I had to start the whole process of finding support for Marie all over again.  

After the dust settled I wrote to the Director of Nursing at the Royal Liverpool Hospital and told him about my emergency visit. I don’t know how often a parent turns up at A & E in the early hours of the morning with a severely disabled daughter in tow. I told the Director how appreciative I was of the treatment Marie and I received from the hospital staff, and asked him to thank them all. When I received a reply a few weeks later, I discovered the letter I wrote to him had been copied and sent to 12 different departments in the hospital. 

I let Christmas come and go, and early in 2009 and after much searching, I phoned yet another agency that specialised with clients with a learning disability. I told them what had happened at the hospital and how let down I felt by the previous agency I had used. I explained how I needed back-up in an emergency and that I never wanted a repeat of our hospital experience. They were aghast that such a thing could have happened and assured me they’d never let me down. That was good enough for me.

The respite girl - we’ll call her Agency Girl - was introduced and shown around the house. She then came to spend time with Marie and me, Marie and Melanie, and Marie alone. She spent the night, and I showed her the routine, and the following morning she got Marie up and dressed without any problem. I felt so happy to have found this agency and I crossed my fingers for the future. 

I was aiming to spend two nights in Manchester on my daughter, Anna’s birthday. Melanie would cover the one day I was away. Agency girl would arrive at four in the afternoon to relieve Melanie, stay the night and swap over at ten in the morning.                            

                                                             

My short break was approaching and Agency Girl assured me she was quite happy with the arrangement. One of the things she liked to do with Marie was french plait her long hair and of course Marie was in her element with all the attention. I suspected they'd get on extremely well while I was away.

So the day came for me to set off for Manchester. I’d wanted to avoid the heavy traffic, but Agency Girl arrived half an hour late, just as a snow storm descended in the North West. By the time I reached the motorway I was driving through a blizzard that almost stopped the traffic as it covered the lane markings. 

I was happy to leave Marie in her comfort zone with a woman she’d taken to without any hesitation. Marie’s file, which I painstakingly put together, covered anything and everything that could possibly go wrong and how we responded to any challenging behaviour Marie might present. Patrick and Anna’s cell numbers were also included with mine in case of an emergency.   

That night I rang Agency Girl from Anna’s to check that all was well. I rang the next morning as Melanie was about to relieve Agency Girl so I could speak to them both. Everything was fine. 

At last I could relax with the satisfaction I had achieved a balance. The future looked good. These breaks were important to my health and well being, and would give me a lot to look forward to. I am a home bird at heart. There’s nothing I like more than curling up with a good book, but I knew it was important to get out of the house and mix with people. The success of Agency Girl would now afford me special time to go places with Anna and Patrick or friends – places Marie would not enjoy visiting. 

The next morning, just after nine, Anna set off for work. I was gathering my things together and looking forward to seeing Marie. I was brewing a coffee when my phone rang. It was Melanie. 

“Hello Melanie! You’re at the house very early” I said, “is everything ok?”

And she said, “Michelle, you need to come home right away, the police have been at the house and there was a different agency-worker sitting here this morning when I arrived. But Marie’s ok.”

My heart went bumpty-bumpty-bump.

As soon as Melanie clicked off my phone, I rang the agency. They confirmed police were called to Marie. I asked why nobody had contacted me. The agency manager couldn’t apologise enough, but I felt too numb to talk and told him so. I said I would ring him when I arrived home. I threw my things in the car, got some petrol, and drove home. I was there in forty minutes. 

The scene I was met with gave no indication of the drama that had unfolded whilst I was away. There was Marie sitting quietly with her colouring book and pencils, and poor Melanie, involved in yet another of our dramas, gave me an “I just cannot believe it” look. 

Melanie told me that Agency Girl had called her just after eight, that morning, telling her she’d better get to our house quick because she (Agency Girl) was no longer at the house with Marie. With a justified sense of alarm, Melanie called a taxi, dropped her children off early at the nursery, and went to my house. On arrival, the front door was wide open, and a stranger was sitting with Marie. The woman told Melanie the police had been at the house when she arrived at half past midnight to relieve Agency Girl of her shift. Agency Girl had been asked to remain at the house all night to make it easier for both new staff member and Marie but had refused and had wanted to go home.

I picked up the phone and rang the agency. They couldn't apologise enough.

I was told that when Agency Girl put Marie to bed just after ten o’ clock, Marie started screeching because she hadn’t wanted to go to bed. Agency Girl then rang the on-call agency staff manager, and told him Marie was being difficult, and she (Agency Girl) did not want to stay on the shift. The on-call agency staff manager told Agency Girl to explain to Marie (as if?!) that she had to go to bed. If Agency Girl had any more concerns about Marie’s behaviour she was told to ring the on-call back.  

 Agency Girl rang the on-call staff member back ten minutes later. She told him she was afraid Marie was going to hurt her. The on-call staff member told Agency Girl if she felt Marie was a threat, to dial 999. And that’s what she did. 

The police went straight to our house, more than likely expecting an altercation with some strapping middle-aged woman, only to find 5-foot Marie sitting on the sofa unaware of the developing situation. The police sat with Agency Girl (to protect her from Marie) for one-and-a-half hours until a staff replacement could be found and then they drove Agency Girl home. Yes, that’s what I said - the police drove Agency Girl home. 

The Manager apologised again and assured me all the staff involved had been called into the office to explain why they took the actions they did. 

But to me, the damage had been done. It was scarey to think this agency claimed to specialise in people with a learning disability. 

I was devastated. Absolutely devastated.

After the weekend, I went with Marie to the Police Station to ask for a copy of the incident report. The police-woman behind the desk said that due to data protection they were not allowed to discuss the incident with me. Even though police had been in my house, they had been there to protect Agency Girl.

“From her?” I asked the policewoman, indicating Marie sitting quietly in her wheelchair. The officer opened her mouth in surprise and told me to wait whilst she tried to get some information. She returned a minute later and said that no police report had been made because when the police arrived at my house Marie hadn’t appeared to be a threat. 

And so it was goodbye to another agency and back to the drawing board.

 After this last incident I decided to look around and see what respite facilities were available for Marie because respite obviously wasn't working out at home. I found a small home about 30 miles away and wrote to the owners explaining our situation. I was invited to go and meet the owner and have a look around and then the owner came to our house to see Marie on familiar ground. Of course, Marie sat beside me like a little angel but the owner listened with interest and understood and accepted the problems that might arise. After our meeting I was happy to go ahead and contacted the Social Services to ask them to start the ball rolling.

Introducing Marie was a long process. Her first visit to the Home was for an hour, accompanied by Melanie. I dropped them off and walked around the shops to kill time. The second time was for two hours and I walked around the shops for a bit longer. Eventually I dropped Marie off on her own for a couple of hours, then an afternoon, a day, then she stayed for one night and then two and so it went.  

So that's how our respite panned out with many trials and errors, but I'm happy to say we got there in the end. Oh, and Marie now has a bag packed at the ready containing a weeks supply of clothes, her notes and medication (which is replaced every month as it goes out of date) so that we are all prepared in case of an emergency.

Part of this blog has been adapted from my book, With a Little Help From My Friends, which was published October 2012. It not only documents my struggle to defend Marie's rights over the last 40 years but also pays tributes to the friends and professionals that helped us along the way.