Part 9 - Coming Home

Henry at his happiest - In the gym

Things became much harder for Henry after this. He worked hard and got back to the gym, but he never got back to his baseline. He could no longer transfer which was a huge loss and he had lost his vision. He was so much more dependent on his Carer. The loss of independence caused huge issues and more and more problems arose. Henry was falling out of his wheelchair, falling when he was trying to transfer and falling out with the Carers because of his anger and frustration.

Henry started to ask if he could move back closer to me because he could no longer manage on his own. I started the process of applying for a suitable social housing flat or bungalow. From start to finish it probably took three years. I had to raise heaven and earth to get him into Band A. When we finally got to Band A the perfect little bungalow came up just round the corner from me. It was an amazing sense of relief when the bid was accepted, and we picked up the keys. I had two weeks to paint it, re-floor it, move in some new furniture and equipment before I brought him home.

Henry - Back in Soham

In the last six months, or so, before I could move home Henry his care had broken down and his accommodation and level of care was completely unsatisfactory. I could only keep pushing hard to get him home.

Two weeks after picking up the keys we drove a van up to Norwich. Henry’s flat was in a terrible state, I took photographs of all the broken furniture and equipment. I took photographs of the mould on the walls, and curtains. I took photographs of the blood in the bottom of the broken fridge and the out-of-date food. It was certainly time to bring Henry home.

We had a freshly painted bungalow all ready for Henry with new furniture, a lovely big garden and even his very own standing frame to use every day. We had a new care company ready to meet him. The gym two minutes from his door and his family round the corner to give him the love and support he needed.

A few months later I got an invoice from Norwich Council for £4,000. The bill for the state of Henry’s flat. I contacted the Housing Ombudsman. I wrote a statement and sent all the photographs. I told Henry we would be going to court if we had to. I received a letter saying the indemnity would be paid by Social Care who put in the care package and Henry would not have to pay the bill. Another battle won.

Henry at Soham
Recreation Ground

The move from Norwich was far harder than I expected. Henry struggled with the change, and I could tell that he grieved Norwich. All his memories were there, from university to adulthood. He was angry and frustrated at leaving all his independence behind and took it all out on me.

Bringing Henry closer to home has been the hardest part of this journey so far. I have had to work hard to protect my mental health and continue to love and care for him. I have to remind myself that it is the disease that is responsible for his behaviour and not him.

Henry is now thirty-one years old. I see him almost every-day. I am involved in every aspect of his care. Living round the corner from me has not been plain sailing. It has just brought all the problems closer to my door.

We had a 24-hour carer who stole all of Henry’s money a few years ago. It took two years of investigation, and he finally went to court last year and was imprisoned for six months. I wrote a victim impact statement requesting that he serve a custodial sentence in the hope he would never do the same to anyone else. It was not about the money but the fact that he was looking after a vulnerable adult in a position of trust, and he broke that trust. That victim impact statement was 2 x A4 pages long.

I now have a new care company that provides Henry with 24-hour live-in care and another care company that provides drop-in care through the day to help with Henry’s complex care needs. It has its ups and downs, but I am grateful to Social Care who provide the care to be able to keep Henry in his own home, living independently in the community. 

Henry

I have wanted to write about Henry’s life for a long time. It has been a painful, emotional process. I have written pages and then put my pen down, gone out with Raffa, my cocker spaniel, with tears pouring down my face. Because the heartache never leaves me, even when I put the pen down. This is partly because it is not just my story I am writing. It is Henry’s story too.

I am going to read this to him when I have finished and hope he sees how much he has achieved, what an inspiration he is and hope he feels proud. When Henry gets angry and upset with me, I must remind myself that it is not Henry, but the disease that is destroying him and taking him away. Taking away the person he would have been, the things he would have done, the places he would have gone, the things he would have achieved and the life he would have built for himself. I want him to know that even through the toughest, darkest times, I love and cherish him.

Henry and Saskia

I also wanted to write about Henry’s life for other parent’s and fellow FA suffers who are also in it for the long haul and those who are just starting out on their journey. When Henry was diagnosed, I felt completely alone. I had no one who understood what I was going through, nowhere to turn. I wanted to read other people’s stories and experiences and how they survived. It might have answered some of my questions and made me feel less alone.

I wanted to share some of my experience of navigating a life of disability through the minefield of institutions, agencies and the Health & Social Care Services. I have many more stories and I have met some amazing people. I call them angels and they shine bright.

Even though the journey has been hard, and still is. I never stop being reminded of how lucky we are to have the infrastructure in our society to help support people like Henry.

Henry and Edward

Grief is a very individual experience. So many people are suffering with their own grief, and it is often hard to talk about. You just have to look around to see all the grief and suffering around us. I don’t want people to think that I see myself or Henry as a victim, or that I live my life thinking `poor me`. I have many wonderful blessings in my life that I am lucky enough to count every day and I try hard to lift myself out of my bereavement bubble as often and, as high as I can. I have never met anyone who has not been touched by some sort of grief. Henry came out of the year group that included Holly and Jessica, the girls who were murdered by the School Caretaker, and I have other friends who have lost children, who are grieving. I think the difference for me is that I have never lost a child, physically. But I have lost Henry and yet I can’t grieve. I must watch Henry struggle and suffer every day, living a life in pain with no quality of life, locked in a body that no longer works, just waiting, marking time.

Every day Henry is battling the minefield of FA. He has never taken any conventional medication, only Amitriptyline to help him sleep and Omeprazole for acid reflux. He decided not to have the Covid19 vaccinations and only suffered a runny nose when he caught it. He has currently got vascular issues and is now in compression wraps, trying to push the blood out of his feet. He stands in a standing frame for 2 hours every day to try and help his circulation. His speech is slowly deteriorating along with his hearing, and he can no longer do things for himself. He suffers with depression which is inevitable with a life-limiting condition and the difficulties it brings. But, through all the bad times we still manage to laugh. It still amazes me that he can laugh. We are praying every day for Omevaloxolone. It might not be a cure, but it is a step in the right direction. It may not have come in time to help Henry, but it gives him something to hope for and focus on. 

Henry on a climbing wall

I have worked in the NHS for 23 years and I always say that everyone should have a Henry in their life so they can understand what is important in life and to realise just how lucky they are. It has made me a better, stronger more caring person and it has helped me live for the day, instead of looking ahead and missing what is right in front of me. I’m so proud of Henry and how hard he has worked to be the best that he can be. I am proud of all the battles that we have fought together, and won. Everyday brings a new challenge or battle. Every day is an effort. I have run miles for Henry, fund raising. I have walked the 3 peaks in 24 hours for him. I have written letters, challenged decisions and tried to give Henry the best possible life that he can have. 

It has taken up to this moment to look back at the last 31 years and all the memories in my memory box. 

I cannot shut the lid on my memory box yet. The lid is still open and the memories keep pouring in, every day. I have to dig deep to find the happy memories but the happy memories are there, I just have to look harder. And I have learnt that however hard our journey is, everyone is on a journey. We are not alone. We are all in it together.