In all honesty, the last 7 months have been a whirlwind. They have knocked me for
6 198376484! 2016 was indeed one hell of a year, but this is why 2017 WILL be better.
July of last year saw me bring my second daughter in to this world. The birth went as well as these things can, but a few problems saw us stuck in hospital for a few of days afterwards. Keen to escape and get back to a slightly different “normal”, we headed home. Anyone that has been through labour and the first few weeks of caring for a baby will know what a rollercoaster we were already on.
Just a few weeks after our daughter’s birth, I received a phonecall from Mum. Dad had been admitted to a hospice for symptom management. This call didn’t immediately concern me. Dad had been suffering with the varying and increasing symptoms associated with Parkinson’s Disease for over 20 years. Respite, hospital stays and additional care had become somewhat usual. It was only after speaking with Mum, that I knew things were worse than before.
The problem with Parkinson’s is that it is so unlike other diseases. It doesn’t affect just one area. It attacks all of you, physically, mentally. Parkinson’s affects muscular control – eventually, the muscles just can’t do what you want them to. Not just limbs, but the very essence of all movement. Blinking, talking, balance, swallowing. It was the last of these symptoms that had begun to set in.
An inability to swallow obviously means that it is very difficult to ingest foods and drinks. Not just that though, it means that saliva cannot be swallowed in a regular way, so it builds up & has nowhere to go but out. This also means that speech can be difficult if not impossible.
Nutrition and hydration can sometimes be solved by either tube feeding (through the nose/mouth) or via a peg direct to the stomach. Unfortunately for Dad, neither of these were suitable due to the severity of other symptoms and issues. So that leaves us…?! Oh.
I can’t tell you the pain & anguish involved in that kind of news.
Dad was bought a little more time with some wonderful medication that helped to halt the production of saliva. This at least meant that he could get a few words out, when he wasn’t too tired. It also meant that we were able to help him take in a little liquefied food and drink (despite his best efforts to get us to fetch him some fish and chips). He asked for ice cream and champagne a lot!
Dad was, after a few months moved to a nursing home that specialises in complex care. He was well looked after & had heaps of visitors. His chair from home was brought in for him. Though he then became bed-bound. Not once did Dad ever moan, complain or cry. He was the very essence of composure. He always was. Totally unshakeable.
On the 31st December 2016, Dad passed away, peacefully, with us all at the nursing home – though I was feeding my baby in the family room & missed his last breath by about 30 seconds – something I will eternally beat myself up over. I think & hope he knew that I was there though.
The hospice that Dad was in was St Wilfrid’s Hospice in Eastbourne. The care team there, medical, support and volunteer are just amazing. A real home from home. So warm , welcoming & supportive. It is also incredibly family friendly & peaceful. A real gem in the care sector.
One beautiful Summer’s day, my sister and I were with Dad at St. Wilfrid’s. Dad dozing in his bed, the sun streaming through the open door to the gardens. We decided that we should take on a challenge that could help us to raise money, in a way as a thanks to Dad & all those that were supporting us all.
Nic and I usually take on the moonwalk marathon in London, but we felt we needed to do something closer to home this time. We found the South Downs Challenge – a 50km hike. One of the partner charities was Parkinson’s UK. We discussed at great length whether we should fundraise for Parkinson’s UK or for the St. Wilfrid’s Hospice as they had been so good to him & us. We eventually decided to raise funds for Parkinson’s UK, as they have been working with us as a family for over 20years.
My fundraising page for the challenge can be found here and any donations to our event would be so very welcome!
However, I cannot shake the feeling that I need to do something to say thank you to St. Wilfrid’s for everything they did & the peaceful time that we had there (slightly less peaceful when my baby started to cry… sorry about that!). So, I have decided that I will personally raise money over the course of 2017.
I will be and have been measuring my daily mileage on my fitbit and for every mile I walk/run/hop/cycle/dance/crawl I will donate 10p. I seem to clock up somewhere between 3 & 5 miles in a normal day, so once the big training gets underway for our South Downs Challenge, I’ll be able to get some decent mileage under my belt and a bulging fundraiser for St. Wilfrid’s.
I’ll keep you up to date with my mileage as the year goes on & as the clock strikes midnight on New Years eve, the anniversary day of my wonderful Father’s passing, I shall tally up my total miles and convert it to a donation. I’m not asking for help on this, I’m raising it with my own feet, however, if you do ever wish to add to my pot, please let me know & I will gladly send you details on how to top up the donation fund. The hospice is absolutely worth every penny & if you have ever had need of them, you’ll already know that!
Here’s to 2017, here’s to you, Dad xxxxxby