Now What? I'm totally lost

A regular ramble does me good, this is for me and my family  to look back on to see how its going. Once I've spewed out my frustrations I feel better I'm not precious about my ramblings so here goes.  

Three years ago I was Steve's wife. He joined the NHS Ambulance Service in 1982 then retired as an officer / manager 28 years later. Along the way he learned plenty about illness, grief, life and death.  He was practical, selfless but above all hilarious. He had the loudest laugh, the craziest sense of humour and was the grumpiest grump sometimes. 

We met as kids, I was 15 still at school,  he was 20. We became firm friends, got married and worked hard. He joined the NHS, I trained as a teacher. We were impatient, spontaneous and optimistic, we'd both had tough childhoods so decided nothing would stand in our way. We made plenty of mistakes but everything always worked out. We didn't take ourselves or life too seriously, we had lots of friends and always looked for the amusing or quirky side of life. 

Steve retired from SCAS in 2007 after 25 years. He was 52, I'd also given up work too as I'd been injured in a bomb explosion in London. This experience made us both realise how precious life is and how things can change in an instant. We decided to do everything we ever wanted to do together as well as with family and friends. We had the best time. We travelled everywhere we wanted to go. We then decided we wanted savings too so both returned to part time employment . Steve retrained as a housing officer and I started up a business making and selling costumes and  corsets, It worked out well, topped  up the coffers and kept us in gin and fresh flowers. At that  time Steve's health and memory was fine. He was bright, sharp. organised yet sometimes became uncharacteristically grumpy and dizzy.  He'd had some heart problems several years earlier but bounced back. 

We achieved absolutely everything we planned, life was fun and  fulfilling right up till 10th January 2018. Steve had a cold which developed into pneumonia.  He didn't recover, he had two further bouts of pneumonia then developed sepsis. Chest x-rays identified he'd developed adrenal gland tumours causing Addisons Disease.  He suffered several Addison's crisis which resulted in heart failure, kidney failure, seizures and  multiple strokes. All of this left him with a particularly challenging type of brain damage to the front part of his brain. Steve suffered physical and severe psychological changes. He lost all executive function so was unable to operate a computer, use a phone, tie his shoes or even open a door. He also lost the ability to recognise faces. He had further frequent life threatening adrenal crisis which each  time caused more brain damage. So within weeks my strong, healthy fit Steve' vanished leaving us with a new very different   'Poorly Steve'. He didn't know us but we knew and loved him all the same. Despite this horrendous  illness 'Poorly Steve' was  kind,  amusing, loving but very scared. He frequently got muddled so had absolutely no idea who we were and where he was much of the time.

I continued to be 'Steve's wife' throughout his illness -  He  needed a year in hospital but after that we looked after him at home.  I refused to call myself  his carer!  As the mother of  children I never called myself the childminder either! In time Steve needed and had the most amazing group of carers. I'll be indebted to them forever.  Steve died at home  December 19th 2020. He was content, settled and pain free. He was surrounded by family, love and humour which was what 'Well Steve' would have wanted. This was a heart-breaking couple of years for us all yet a privilege to provide him with best possible care. Admission to Hospital or a Hospice always remained an option but no intervention from them could have enabled him to recover. In the early stages Steve expressed that he wanted to remain at home with us so I saw my job was simply to carry out his wishes to the best of my ability. 

Steve and I created fantastic kids who married great partners. In turn they made us some wonderful grandsons. We decided to all pitch in and help look after Steve in the same way as he'd always looked after us when needed. Our daughter in law Michaela is an excellent manager / coordinator of care. This meant we were in a position to employ and manage  several other qualified carers and she would manage them ensuring they worked in conjunction with numerous other clinical staff needed to keep him safe and settled at home despite his complex medical needs. 

Steve always had a dry sense of humour and the loudest laugh. No-one ever knew if he was joking or not, He never lost either of these things. Steve joked throughout his life and throughout his illness too.  We had to learn to also embrace the totally unpredictable, confused, muddled world that Steve found himself in. It was heart-breaking but Steve had absolutely no idea what he didn't  know. He was the person least affected by the confusion. 

Despite being very high maintenance he was happy and settled. He always tried his best but his best was bizarre to say the least!  His carers and I made a joint  decision once his confusion took hold that He would always be right! 

The hassle and agitation that resulted from trying to have things  correct wasn't worth the upset. It was kinder and safer for all concerned to never argue or question anything. If Steve decided it was breakfast time at 3 in the morning  then breakfast time it was!  Months of bizarre activity and conversations took place simply because was easier for everyone involved not to upset him by reminding him that the world he found himself in was not real to us. 'Going with the flow' gave us a peaceful happy life free of drama, agitation and upset. Steve was able to maintain his dignity. He didn't spend his final days depressed, despondent or fretting about what he couldn't do or remember. He didn't know what he knew and didn't know what he didn't know either. Our number 1 rule was he was not to be considered disruptive, nor a nuisance. Quite simply he was ill and it was for us to look after each other so no one got overly stressed. Steves happiness was all that mattered. We all knew our time with him was limited. We saw it as payback time in gratitude for the selfless generosity, love and care he'd given us over the years.

Steve deteriorated to the point where we  simply became familiar faces. He remained chatty, laughed and joked but had no idea who  hell we were sometimes! Grandsons were mistaken for our son; Steve decided I was "The night Staff" probably because other family members and professionals helped during the day so I could sleep from being up all night with him. He loved hot cross buns, pork pies and Asian sweets bought round by the kiddies from next door. He unfortunately told the  diabetic nurse to **** off and that he was going to die anyway when she tried to discuss not eating cakes and his blood sugars. He was generally content, comfy and very well cared for but mad as a box of frogs. He had no idea he was at home and although he didn't really know us he did love and recognise his dog Dino right to the very end. He got us chasing  imaginary rabbits and frogs out of his room. He decided there were fish were inside his bed. We fixed a doorbell to the table by his bed - (a daft  exhausting idea - not to be recommended as he rang it 24/7). He insisted on cot sides on the hospital bed we had on loan as he worried about falling out. On the downside he had to be constantly watched because in the middle of the night he'd wake up and climb over the top of them and fell on to a safety mat we had to have on the floor because  he completely forgot he couldn't stand or walk anymore. 

I regularly cooked Steve a full English breakfast at 3 am when he decided it was breakfast time. Days and nights switched round with alarming regularity. It was easier to cook than manage the upset that followed if I dared  suggest it was night time.  I was bloody exhausted. I felt like I had jet lag mostly BUT it was 100% worth it to avoid him becoming upset and difficult and I'd do it for him all over again. He was a huge strong bloke confused anger was best avoided.

Steve's at rest now.  His vascular problems, heart, blood pressure and breathing difficulties finally got the better of him. He died peacefully free of pain surrounded by love laughter and affection. I desperately miss the pleasure and fun we shared. I also miss the chaos and routines of those final two years. Steve contributed so much to our lives, he taught us all a lot in sickness and in health. He saved countless other lives himself over the years showed kindness and compassion to people when he worked for the ambulance service. 

Our boys are stars, they were young teenagers yet helped with feeding, bathing and keeping Steve occupied. They remained involved but not overwhelmed. They got used to accepting bizarre behaviour. They understood Grandads brain injury from illness made him quirky and confused. Steve's illness taught our boys what love compassion and tolerance is all about. Although young they became acquainted with fear,  uncertainty and ultimately loss when Steve died. Their involvement I hope helped them learn and share their feelings in our safe secure supported home. 

My challenge now is to do what Steve asked me to do when he was first diagnosed  - He said " Just make sure you do everything you want to do,  take care of yourself and the kids". That was typical of my 'Well Steve'.  I later found out by chance he'd also asked some of his friends to look out for me too.

So .. Here I am working on being happy as Steve requested -  a huge ask!  I'm heartbroken. I lurch from drama to drama because I don't know what I don't know about living on my own! I relied on Steve not just for laughs but for so much more than I ever realised. I always let him hold all the cards. I was quite lazy really as he did  nearly everything so now I'm playing catch up.