James’ Move – The Hardest Decision to Make

When James was much younger his dad, Darryl, and I discussed that by the time James was in his mid-twenties perhaps he should be living somewhere else and not with us. You say these things when your children are young and it feels like you have a whole lifetime before you reach that point. Time passes quickly. James was 25 yrs old in June 2021.

Why?

There were two main reasons for feeling this way. Firstly, and most importantly, I felt strongly that I wanted to be in complete control of choosing where James should live. I’ve seen it happen that due to illness or the death of a parent, young adults like James have been accommodated wherever a place is available. This may be quite far from their home, family and all that is familiar to them. In an emergency situation this is done with no forward planning or preparation. I could not bear for that to happen to James. Secondly and more selfishly, whilst a part of you feels you can care for your child forever, unless you have experienced it you cannot understand how physically and emotionally exhausting it is caring for someone with James level of need year after year. And in the meantime, you are not getting any younger. That’s not to say I wouldn’t have him back in a heartbeat if the placement fell through.

Reassurance

Darryl and I had a conversation with someone from Social Services a couple of years ago. We did this to be forewarned and hopefully to allay our anxieties about what type of accommodation might be available. It didn’t do that. In fact, it made me more anxious when she spoke about homes that would be an hour or more away from us. Not only taking James away from us but from the rest of his family, friends and day services he has been attending since he was 19 yrs old. We had no intention at this point to follow this up.  We knew that it can often take a very long time to find a suitable placement.

First steps

 Last year, during lockdown, I heard of a supported accommodation unit for adults being built less than a mile from where we live. Whilst I didn’t really feel ready, I had to look into it as good homes can be few and far between especially as close to us as that. I contacted the company director myself, explaining our needs briefly. She was lovely and invited us to visit. James has a very large special bed and whilst the accommodation that was on offer was good it was not suitable for James space wise. However, they were renovating another home just under 10 miles away. I reluctantly agreed to go and visit. I felt this was too far away. In reality it takes between 20 and 25 minutes door to door.

Decision time

Of course, it’s not only about the accommodation. We spent time talking with the company who would run the home, about their practices, ethos and values. We were quite impressed. I took Harry, my younger son and my sister Joan to visit and meet with staff. I spoke with other professionals we were involved with who had worked with this company too. It seemed we had stumbled across something good and the flat that was available was also good. James would have his own bedroom, lounge/kitchen, bathroom and a shared garden.

After several weeks of deliberating, we had to make a decision whether we were going to proceed. It was the hardest decision of my life. One thing I had done was to check, as James was moving further away, that he could continue to attend his current day services. I couldn’t take him away from everything he knew. Once that was confirmed I expressed our decision to go ahead with the placement. Afterwards I cried.…a lot. That was August 2020.    

Tough conversations

There were other things going on too, which complicated matters. We were in and out of lockdown and I was waiting for hip replacement surgery which had been cancelled due to the Covid pandemic. We hadn’t been seeing my parents due to covid. I visited them to tell them about our plans. This was always going to be a hard conversation to have.…and it was. My parents and I cried together. They love my boys very much and James adores his grandparents. I think for them, whilst understanding James difficulties, they always knew that however James was, whatever happened in his day he was always coming home to me and so he would be ok. They knew where he was, they knew he was safe. They wouldn’t be able to just pop into my house anymore and see him, things were going to change a lot. I promised them I will always make sure they see him and I will. 

Planning was key

On the day I was at my parents I got a call from the hospital to say my hip surgery was 3 weeks later. That was now going to have to take priority. Having said that the staff at what was to be James’ new home were fantastic. A transition plan was put in place whereby James’ staff team would be visiting and spending extended amounts of time at home which would helpful to me whilst I recovered from surgery. They’d come early morning to bath James when Darryl had gone back to work when I was unable to do it. They made visits all times of the day. They came with me to drop off or pick up from day services and visited in the evening too. They did everything they could to help me which reassured me of their commitment to James and our family.

Creating James’ home

It was hard work, intrusive at times because of the amount of time staff were in our home.  It was important that they got to know James and his routines and that he got to know them too. I spent some of my recovery time online furnishing his flat and as soon as we were able, we were there painting and making it a home for James. We filled it with his favourite things, his puzzles, books, posters of his friends and family. Everyone was involved, Harry, my sister and my parents. The only person who knew nothing about it at this point was James. It broke my heart when I looked at him knowing his life was about to change and he didn’t know.

Postponement

Two moving dates came and went due to lockdown. I actually felt relieved. I got to keep James home with me a bit longer. Eventually the move was planned for 26^th April this year. Transition was very thorough. I was welcomed to staff training sessions, I produced a folder of information for staff about James routines, his diet, his likes and dislikes etc. I made James a life story book on Snapfish and a month before the moving date I started to take James on visits to his new home. I’d take him every Thursday increasing the amount of time we spent there, staying for lunch and building up to leaving him with staff. Darryl and I took him for visits on the weekends too.  We read his life story book a lot.  

Moving day

On moving day James went to his day service as normal. Because James has a large cot bed, we had to have Hampshire equipment services here early that morning to dismantle the bed. There were four large vans outside and half a dozen guys here. This would have been far too stressful for James. It was better for him that he had his normal day. Whilst we had already taken lots of James things to his new flat there were obviously last-minute things that couldn’t go until that day e.g. his feeding pump. James not being home meant I could get those things packed up too. After the bed was dismantled and loaded Darryl went over to James flat to ensure everything was set up correctly so that when we did arrive later with James everything was calm and organised.  

Settling in

At 2.30pm Darryl, Harry and myself picked James up from his day service and we drove to James new home. Once there, staff left us to settle in. I took James into his bedroom to show him his bed, he shook his head. Anyone who knows James also knows that he shakes his head to most things!! (apart from puddings!) We spent a couple of hours doing James’ puzzles, looking at his books and generally doing the things we would normally do. All the time being painfully aware that the clock was ticking. We had arranged that we would leave James when it was his teatime which is then followed by bath time so that he would be busy after we left.

Walking away

Actually, saying goodbye to James that day was one of the hardest things I have ever done. I kissed him, told him I’d see him soon and I walked out. I looked back as Darryl and Harry were saying goodbye to him too and saw James looking at me as I walked away. I cried in the car. We stopped at our local chippy and then came home. Once indoors I dissolved into a heap. It’s a day I will never forget.

6 Months later

Almost 6 months on this is still hard to write about. James has done so well. There have been some teething issues just around getting James meals right etc but those have worked themselves out. I might not be physically looking after James every day but I feel that between us and his staff we are a partnership. I genuinely feel they have James’ best interests at heart and they are very receptive to my suggestions and feelings. That’s how it should be.

A new routine

Our lives have changed completely though we’ve yet to really feel the benefit of that due to covid restrictions. I’ve also just had my second hip replacement so that has limited me greatly. We see James twice every week. I pick him up on Tuesdays and he comes for tea.  We visit him and take him out at the weekend. He sees his grandparents weekly and Auntie Joan regularly too. Occasionally James comes and stays overnight and I get to tuck him up in bed. 

Emotions run deep

I struggle at times accepting that James no longer lives with us. It’s always hard to say goodbye and that’s something I will need to come to terms with. I think it is going to take a long time if I ever really do. The mum guilt, thinking he should be here with us is a hard thing to live with sometimes. But going back to what I said at the beginning about the reasons for James moving, I’m so glad we did this whilst James has all his family around him to support him in his move. I am so, so proud of how well he has adjusted and coped with such a huge change ……I just want for him to be happy and lead his best possible life.

Coming next time…..

I can only speak for my family of course but in my next post I am going to give some tips and ideas for those of you who may be, or will at some point, be going through this transition process. The things that I felt helped or worked for us. One thing I will say is that you have to accept that emotionally this will be a very bumpy ride and go with it. There is unfortunately no easy way, you just have to work through your emotions……and cry lots like I have done writing this today. It will get easier. 

If I can help, or be a listening ear please do get in touch.

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