- G
- L
For those reading, my name is Rob. I'm just 64, and I have a terminal illness.
I'll start at the beginning, 6 years ago I had a catastrophic brain hemorrhage with a 1% chance of survival (the doctors' words, not mine). The scans I've seen of it look pretty scary. I had two lots of brain surgery, and they thankfully stopped the bleed. During it all, I also developed sepsis, but somehow I survived. I'm just glad my wife Vikky was insistent with the ambulance, then hospital, when they said it was a migraine. We've such a close bond, she just knew something major was wrong. Eventually, I got home. Rehabilitation and recovery were slow, but I was alive, as Vikky kept saying, that's all that mattered. I'll compress the years to follow. I had a further 2 strokes, numerous TIAs, problems with my memory, hearing, change in personality, swallow reflex, certain limbs, tiredness, and lots more. I put a lot down to my brain hemorrhage and the Strokes, some very sad & stressful family events until things became too difficult to ignore, so I saw my GP, who agreed things were not right. I failed the test they do as a quick check for Dementia. Every person beyond that to whom I was referred, I failed all their tests, so I knew things were looking bad, as each failure was another tick for dementia. After 12 long months of tests, blood tests, and brain scans, in early December 2023, I was diagnosed with mixed-type dementia, which comprises vascular dementia and Alzheimer's. I've been told it's terminal and I've been given a prognosis of 3 plus years if I'm lucky, I could have as much as 10 years, or if I'm unlucky, not.
Im not going to lie im totally bricking it, worrying if i'll fit everything i want to do in life in.
Every single thing I read that says it will extend my life with dementia, I take it or do it. I also take a strong dementia medication that is supposedly slowing my dementia down. My dementia team knows that as soon as any breakthroughs happen, I'm happy to try it anything to stay with my wife and stepdaughter as long as possible. I'd like to say my whole family, but since my diagnosis, I've not heard from the majority of my immediate family.
My dementia team has told me to make memories while I can and make a bucket list, which is hard when I obviously can't work. My wife gave up her job as a nursery nurse to care for her disabled daughter, now me too. She also has her own health issues; she had a stroke a year ago with all the stress, has ME too & now severe asthma thanks to our previous home , she also is being investigated for a brain disorder, our bad luck with health is endless & financial struggles ,I just want lovely, happy memories while we can have them together.
I've debated and talked myself out of setting up a fundraising page since I was told to make memories, as I feel it's begging and it doesn't sit right with me. But we're currently saving every penny to take Lilly to Disney for her 21st and as she is almost blind, & has so many disabilities herself so that is for her memories, and it's broke us completely along with my supplements, transportation to hospital etc so after that, there will be no more memory-making for a long time as that has stretched us completely!
I see the alzheimer's & dementia nurses very regularly, some weeks are good, other weeks there is a decline. The admiral nurses are amazing for Vikky which is great as we have no family support apart from her mum who is great, which is tough, but must be tough on her, it's all such a roller coaster & scary time !
I'm just so scared of leaving my little family with not enough memories. There are a few places I've never managed to visit, some places in Scotland I'd love to show Vikky & Lilly while I'm able, id also love to show them the Glasgow big walk that happens every July and I hope I can visit my grandsons' grave a few more times and my father's grave in Scotland too.
Ive many sporting heroes and music heroes id love to see live, papa roach, metallica so many more so id love to go to a rock music festival, that would be just amazing and to see a big named boxing match ,ive also recently been watching ufc & id love to go to a ufc match , I think paddy the baddy is bloody awesome!
My ultimate hero from Glasgow rangers has to be gazza then Ally mcoist and boidy to ever see , meet any of these would be a dream.
James Arthur is another idol hos music is very special to me and my wife , I asked her to be more than a friend in my life years ago by his song 'can I be him'
I also want to visit the mighty ibrox a few more times if possible maybe even for an old firm day! #watp
One major dream but it's big so probably not possible with insurance etc is to visit my family in Canada one last time to say goodbye, as my Canadian family have always been there for me & they've been very supportive since my diagnosis .
I'd also love to go to new york to see the huge Christmas tree they have and to Glastonbury & vikkys desperate to take me to stonehenge for the summer solstice to touch the healing stone, she into spiritualism, she grows allsorts to add to cooking to try to help me, anything that says it boosts the brain, bless her.
We also love little day trips when I'm feeling good and have a rare day of no appointments.
Obviously, all of these are pipe dreams but one thing about dying is your allowed to say all the things youd like to do or wish you could so here it is,
all of this costs money that I simply don't have, along with some of the amazing dementia products that are simply not available on the NHS, expensive supplements that are recommended to me, transport to my very many appointments, those kind of things, maybe even treatment abroad or in private hospitals, me & Vikky are constantly researching for any treatment or therapies that might prolong my decline & life, I'm on lists with many private companies & organisations if treatments become suitable for me.
I just don't want to leave my little family.
The list goes on.
I totally understand the rise in financial difficulties for a lot of families right now and understand fully the impact of how a donation could burden another family.
So if this isn't something you're comfortable with, can we ask instead that you please share the page wherever possible, or perhaps you may know of someone who is able to help me or able to donate?
Please kindly consider forwarding my details and page to them.
This came out of the blue, and I certainly didn't expect the news we were given. We're only in our third year of marriage and eighth year together. We should be having the time of our lives, not all this heartbreak, which it feels as if we've always had for the last few years, now we want nice memories.
Thank you for reading, even if you can't help us make some memories, beyond this will be expenses after my life vikky will have to find it really is just unfair, why is live so cruel and short, every memory i achieve i thank you all for helping me with, so every little helps thanks so much
Rob Wynne-clark

