SAFETY FOR STEVE; My 8 Year Fight to Protect Him

Hi. I’m Lin; my adored husband Steve suffered a catastrophic stroke 15 months after our wedding. In that instant, our home, our dreams and all sense of normality were lost. Failed by a system he worked 38 years to support, rehoused without any care for his significant needs. I’m trying to raise funds for a ‘safe place’ where there’s no longer any risk of 'harm' to his health and he no longer 'feels threatened' in his own home.

**I heard it said once that; ‘Everyone is just a day away from an illness or an accident that leaves them with a disability; it’s unthinkable for most of us; I know it was for me, but in that instant, it happened, ‘it changed everything’….

This is our story;

We met in December 2008. He was a kind-hearted traditional gentleman, and the moment he took my hand, I knew I would follow him anywhere.

Our wedding in June 2013 completed our fairytale, but we made plans we didn’t get to live; when Steve suffered a life-changing stroke on September 12th 2014. He was 54.

I can never erase the vision of the moment I found him, collapsed, motionless, eyes staring with no focus, unable to move and unresponsive. The terror was unimaginable.

At the hospital, he lay on a trolley just waiting; he wasn’t conscious. It was hours before the brain scan; it was as if his fate had already been decided.

The stroke was relentless in its voracity; it wiped out 45% of all brain function. The physical disabilities were acute, while Steve's brain and rapier wit were devastated by cognitive impairment. All motor function was lost, along with the ability to perform even the simplest tasks. It took a kind, articulate, hopeless romantic, a wonderful husband, father and grandfather, leaving him a shell of his former self.

His heart function dropped to less than 25%; the prognosis was heartbreakingly bleak. I was told he would die, all monitors and wires removed, and a chair in their place where I sat desperately clutching that ‘oh so familiar' hand, which now lay still, waiting for the inevitable; I was half of a whole, but that first night, was the loneliest I had ever felt.

Yet incredibly, Steve refused to let go… After 4.5 months in hospital and a further four months in a care home, there was little evidence of any recovery. Life became an endless battle with the authorities. Steve was in and out of hospital over the next few years with seizures, heart complications, and a mountain of other health concerns resulting from the stroke. Each time the feeling of losing another part of him was overwhelming. The impact of all of this on Steve’s life expectancy is a constant cloud over our lives. I have to monitor him daily because he can no longer regulate his body temperature.

Everything was gone; strangers packed up our home while I sat vigil at his bedside, then forced to give away more than 60% of our belongings I now had no room to keep. Precious items from my years of working in travel, many things irreplaceable, but I had to be ruthless; my husband depended on me.

In May 2015, we were finally ‘rehoused” and “together again” in what should have been a ‘safe home for life’ adapted to his needs. Instead, after moving in, it was clear that our ‘nightmares had only just begun.

Housing Options ‘failed to have the flat assessed’ to ensure it met Steve’s high needs’, apparently a standard procedure, but I didn’t know that then. Instead,’ medical evidence’ of Steve’s complex physical and cognitive impairment fell on deaf ears. Steve has significant disabilities and being 6ft 5in, with two major back operations pre-stroke and arthritis in his remaining good knee, only adds to the problem. Simple acts such as getting out of bed cannot be done without a significant struggle; there’s no room. He cannot look out of any window or open the front door himself. The doors to his bedroom and bathroom cannot be fully opened because the wheelchair and other equipment have to be stored there. When using the wheelchair, he’s unable to manoeuvre around the flat safely due to its poor design and cannot fit into the tiny bathroom at all. Closing his bedroom door at night breaks my heart, and I often feel a sense of panic until I hear him move in bed the following morning, and I open the door to see his incredible smile. I know this fear will never leave me!

It took 6.5 years to get the flat assessed by the Occupational Therapists, and it was deemed totally unsuitable for Steve’s needs. The space is very small; a slight fall or injury to his good leg could quickly put him permanently back in the wheelchair indoors, and as he ages, this is inevitable. Steve would then be trapped in his bedroom, as he was for the first year plus when we came here. Yet regardless of this, there is still no urgency to move him.

As well as the physical difficulties, Steve has become hypersensitive to noise and other environmental stresses. Just cutting his nails is excruciating for him, and if you accidentally brush by him, it’s like a bolt of electricity straight to his brain. Steve experiences extreme pain and distress when presented with either, yet the authorities continue to ignore this, despite mountains of supporting medical evidence.

We are surrounded by second-hand smoke here, potentially lethal to Steve because of his fragile heart. Ill-fitting doors allow neighbours' smoke to filter into the corridor, which seeps into our flat. It also affects the communal garden and balcony, leaving nowhere safe for Steve to go. During the pandemic, the building had four lockdowns, leaving us as continual prisoners in the flat, with all concerns for Steve’s vulnerability repeatedly dismissed. We’re in a permanent lockdown here with no escape and no one willing to help us.

The issue with noise in the flat is relentless, especially from above, with the resident stomping purposely up and down, stopping immediately whenever the carers come. Steve struggles to cope with this constant disruption because of the damage to his brain, even if he is wearing earplugs to block out the trauma. I was forced to reach out to the resident concerned, only for Steve to be verbally assaulted because of this, causing considerable distress and stripping him of any remaining confidence he had. Then when someone tried to force their way into the flat, I was glad he was focused on his football and unaware of it.

These are yet more reasons why he cannot leave the confines of our ‘unsuitable’ flat alone and why he’s too afraid to join in any of the organised activities, including the Christmas celebrations, causing us extreme isolation.

The noise is so loud at times, and often we have days of it with little respite. The landlord has been asked to speak to the resident about this anti-social behaviour on a number of occasions, yet nothing has been done to help us, and Steve is left to suffer the consequences. The flat also sits above the bedrooms and bathrooms of an older person’s rehab centre. There are no carpets. Although currently closed, for the five years it was open, my husband was permanently distressed and frequently very tearful in the morning because of the constant shouting and scraping of furniture across the floor. It was unbearable for him. I constantly worry about when it will reopen and what the space will be used for next.

So many years of this have taken its toll on both of us; my husband’s tears are so heartbreaking to see, and knowing that I’m powerless to help him is the worst feeling in the world. My 29-month battle with long Covid on top of major hand surgery has left me feeling worn out and even more of a failure in my efforts to try and protect him.

The housing authorities have told me a move will take years, so my getting help elsewhere is our best option. Since then, my parents have been trying to find a way to help us, and I love them for that. Sadly it's not been possible. So I’ve started this ‘GoFundMe’ account to help find that ‘safe space’ for Steve, where he can regain some independence and quality of life lost with the stroke. Where his 7-year-old grandson can finally stay over, it’s not allowed here. A place close to my parents. With the pandemic and Steve's vulnerable health, we've hardly seen each other these past few years. A daily phone call is no substitute. I miss them so very much. Steve’s stroke was so massive; that our lives were changed completely. The physical is extremely challenging, and the cognitive damage heart-breaking, but when some of those closest to you begin to walk away, there is unimaginable pain and isolation.

Every day with Steve is a blessing; he’s a fighter who’s defied the odds and survived. I have never been prouder of anyone. Having a married life together whilst we still can, finding a ‘safe home’, with space for Steves's equipment and being able to put those essential adaptations in place for him, is still only a 'dream', but with your help, I hope to make it a 'reality’. A 'safe space' where we can learn to laugh again, concentrate on Steve’s recovery, and continue the fight to reclaim more of the man he once was, a battle we’ve never given up on, despite it taking 18 long months before he could even say my name.

Everyone deserves a quality of life, yet I’m still begging for ours. I never imagined such a tragedy was just around the corner, so early on in our married life. My husband was a hard-working, honest, kind and loving man, yet in his time of need, he has been repeatedly failed by the system designed to protect him. It is beyond comprehension.

Thank you for taking the time to read our story. I apologise for the many words; it’s been a long, hard-fought battle for my husband’s right to a ‘safe place and a meaningful life’… If we’re lucky enough to raise more funds than we need for our ‘safe and adapted home’, there could be a chance for some specialist rehab, the possibility of stem cells even, and some essential equipment, like the ‘Neomano Glove’ (£2,250.00). All of which could bring us closer to achieving that all-important goal of a ‘two-armed hug’? I think lockdown has taught us all the 'true' value of a HUG!

ANY contribution would be a gesture of faith in Steve and his fighting spirit, which would be everything to us. To have a ‘safe home’, to heal within, to rebuild our family and even to achieve that long-awaited ‘two-armed hug’. That’s my miracle, but I can’t do it without your help…

From the bottom of my heart, I humbly ask that you share this link with friends and family and, if possible, in-giving; (I know how hard things are right now, but any amount will help and be most gratefully received)

Thank you all so very much for your kind support..