A New Journey Begins…

‘You can’t explain what it’s like to mourn someone who is still alive until you have experienced it’ Soto

Hi everyone. Well it’s been 9 weeks since I arrived in the UK to spend time with dad as he fell further in to the grips of his dementia. It’s been both a challenging and rewarding experience being here, but I’m so grateful I have had time with him….I think I got the best of the last of him. It’s been a roller coaster ride- some days he’s so utterly lost and incapacitated that he couldn’t get out of bed….one day I sat by his bedside as he lay, foetal like, feeding him chocolates as he struggled to stay awake. Other days he’s been Ross….sarcasm, the eyes rolling, the shooting look, the frown, the laughter. But through the weeks the trajectory has been discernibly downwards. When I first arrived he was occasionally in the communal lounge, preferring to be in his room on his chair. He could shuffle with aid from chair to bed, and occasionally would forget his legs no longer worked and fall out of the chair. By the time I left he was completely immobile, with a hoist being used. His speech has deteriorated and short term memory completely erased. He needed help feeding and often had hideous chocking episodes. He could no longer be in his room on his own, so had to be wheeled to the lounge and plonked in front of a screen to fall asleep.

It is so utterly true what they say…that with dementia there is the long goodbye, that anticipatory grief, that sense of multiple experiences of loss as each week a piece of him ebbs away. It’s excruciating. My views on euthanasia and assisted dying are well known. They have certainly been amplified these past few months as there is nothing that can persuade me that this is ‘living’….it truly is gods waiting room but you get to pay extortionate fees to sit there and wait. I know dad wants to go, I know he’s ready to go….the only saving grace, if there is one, is that he has no idea about his own deteriorating mind and body. If he did he’d be utterly distressed and mortified. At least he’s saved from that trauma. But it then falls on Alison, his partner, and his kids, to suffer that trauma on his behalf.

It’s also been quite an eventful few weeks, away from the nursing home. I did get in a few days of cycling – the Surrey countryside is simply beautiful, with some stomping climbs and pictures postcard villages. But the weather….oh, the weather….cold and wet and windy! I don’t mind cycling in that usually but day after day of crap weather meant being unable to ride. I also had a nasty experience of having my bank account hacked and emptied….i won’t bore you with the details suffice to say I like so many fell victim to fraudulent transactions when these gobshites hacked in to my account. It meant all my cards had to be cancelled and new ones sent to the UK via Inge (thanks a million Inge) which meant not having any access to my own funds (that which remained!) for weeks! I’ve managed to get some of the thousands taken back from the bank but there’s a rather large hole in my account still!

I also fell victim to the crazy high pollen here -it’s spring and gee, the pollen count goes off the charts. I usually only have a mild reaction but this was full blown hay fever with hideously itchy eyes….anyone who has hay fever will sympathise….its horrible.

I’ve also met some wonderful people on my few rides a did, especially from a cycling group from Horsley who welcomed me in to their group rides and Gerry providing me a workshop to work on Bob!

During my time here I stayed with dad’s partner Alison for 4 weeks and spent 5 in a chalet type place in someone’s back garden! Renting here in Surrey is so expensive as it’s the bedroom of London so they can charge like an injured bull….and they do! Like everything here. Paying $8 for a coffee in Windsor set the bench mark! Mind you it was an excellent coffee, unlike just about every other coffee I had.

I also took the opportunity to catch up with old acquaintances here in Surrey where I lived with my dad from the age of 10. My old landlady, Mary, my first girlfriend who I hadn’t seen for 38 years, Sally, her mum Jan, and boys brigade friends Nigel and John. Nigel was kind enough to provide me with clothes and shoes to wear (as I’d look stupid in Tescos in lycra!) and a lap top too, which meant I could do some work to earn a few shillings!

Perhaps most delightful was meeting Alice and Ron, who ran the Boys Brigade I went to. When my dad took on a scrawny, chaotic and deeply troubled 10 year old boy (me!) he in desperation turned to a work colleague to ask if there was something in the area I could become engaged with. She recommended the Boys Brigade. Ron and Alice ran the Company. And they took on this deeply troubling kid and their influence turned me around! Alice remembered me (not sure that’s such a good thing after 40 years). Ron has, like dad, advanced Alzheimers and is in a care home. Each Monday the care home take Ron to a coffee morning at the same church where the BB was held, where he can spend time with Alice, so I popped in to see him. His response to ‘hi, I’m Tony Kemp….do you remember me’ was priceless ‘oh, the idiot boy?’ Yep….I resemble that remark! Such a joy to see them both and to be able thank them for all that they did for me. Both Ron and Alice back in the day worked in the learning disability space and through my Duke of Edinburgh award I did my community service at the hospital Ron worked at….the rest, as they say, is history! I can say with absolute certainty that had it not been for Ron and Alice, and of course my dad’s support, I would have ended up in prison, or certainly in a life of criminality, addiction and unrest.

So I leave Surrey with a heavy but grateful heart. I know it’s a privilege to have had this time together, as so many people don’t get that opportunity. It’s been humbling to give something back – to feed him, wipe away his dribble, read the paper to him, comfort him, hold his hand, just ‘be’ with him even when no words are spoken.

So now it’s time to restart a journey to see where the road leads. I need to stay reasonably close to the UK so I can return when the time comes, so Europe is where I’ll head first to see some of the Alps and hopefully some of Eastern Europe too. I’ll keep you all posted.

I’ll send some photos. I’ll be heading off down the canal trail around lunchtime-rain and 30mph headwind awaits, but only 50k today to get the legs moving again! Safe cycling to you and everyone. Tx