I have an appointment at the dental hospital this morning, to let a dental surgeon have a look at a tooth that I broke whilst on holiday a year ago. My own dentist was originally going to extract the broken stump, but I think he chickened out for couple of reasons. Firstly, he thought that he would struggle to extract it cleanly because the roots of the tooth were very curved. Secondly, I think he was a little nervous of my DBS – I think the letter that the DBS nurse at the NHNN sent to him, listing all of the precautions that he should take, made him take the easy option – refer me to the dental hospital, and let them do it!
I leave the house at 9.15 (allowing an hour to drive the 20 miles the the hospital) and arrive a couple of minutes late for my appointment (oops!). The dental surgeon has a five minute chat with me, spends 2 minutes looking at the tooth in question and sends me away to have an x-ray. I leave the hospital (who promise to call me with an appointment sometime in the next 3 months), fill the car with fuel, and drive back to Southrepps.
I wrote some of the script for my weekly vlog while I was sitting in the waiting room at the hospital, so it doesn’t take me too long to finish it. My voice is a little indistinct (to my ears) so I change my neurostimulator settings over to group “B” (the latest program), which does make my voice sound a bit better. I film, edit and upload my video to my YouTube channel before my wife gets home.
I’m feeling a lot of muscular tension and dystonia this afternoon, so I self-medicate with some cannabis, which makes things much more bearable.
I need to recharge my batteries a little. I’m feeling drained after the events of the last few weeks. Consequently, I’m lounging around and not doing a great deal today.
My wife takes the dog for her morning walk, and then sets about making some edible roses with which to decorate her son and daughter-in-law’s wedding cake. I spectate.
I manage to split as few logs, bring in some kindling from the garden shed and fill the log basket in preparation for a fire this evening. I take the dog for her afternoon walk, and them we drive into Cromer to meet up with my wife’s youngest son and his new wife (and our youngest granddaughter, of course). We have coffee and a cake in Morrison’s, and then return to Southrepps.
I light the woodburner and my wife bungs a couple of ready meals in the oven for our dinner.
My arm muscles are stiff and weak, and muscular tension is also making me feel pretty uncomfortable, so I decide to self-medicate with some cannabis. Tremor (although present in my left leg) isn’t troubling me too much at the moment, neither is dystonia or dyskinesia – perhaps I’m just getting used to them…
Today is the wedding day of my wife’s youngest son and his fiancee, so this morning I decorate my car with some white ribbon, and set off to Hevingham to pick up the Groom and his Best Man to convey them (in style) to Derehamregistry office.
We arrive at the registry office in plenty of time, and I find that I have been nominated as official videographer, by virtue of the fact that I have brought my video camera and tripod with me! I liaise with the registrar, and set up my tripod and camera ready to record the ceremony.
The Bride arrives on the arm of her grandfather, and the wedding commences.
All goes smoothly, and 30 minutes later we exit the registry office into bright sunshine. We are invited to the Bride’s grandfather’s house (in nearby Shipdham) for some celebratory glasses of bubbly and a bite to eat, and take plenty of photos (in the garden) of the happy couple and their guests.
My wife and I keep ourselves busy today. Yesterday, a funeral; tomorrow, a wedding.
My wife’s youngest son and his fiancee are getting married in Dereham tomorrow. My wife has made their wedding cake (three tiers), and has covered it in marzipan already. Today she is covering it in icing in preparation for decorating it – the wedding reception is not until Saturday evening, so she has a few days in which to get it right!
I am driving the groom and best man to the ceremony, so I need to make sure that my car is pristine. I spend the day cleaning cars – firstly my wife’s, and then mine.
My wife goes shopping for (amongst other things) some white ribbon to decorate the cars with. I fill the log basket, light the woodburner and vacuum downstairs. I’m now exhausted, my back is aching and I’m feeling fragile – must be time for a beer and some cannabis…
Final preparations for mum’s funeral tomorrow. Additionally, I have committed to helping my wife’s eldest son to write his Best Man’s speech for her youngest son’s wedding on Wednesday this week.
I arrange to collect the flowers for the top of mum’s coffin this afternoon, my wife binds the last few Order of Service booklets, I make further changes to the eulogy and email the (hopefully final) version to my nephew and the lady who is officiating at the service.
My wife and I spend the evening at her eldest son’s house in Hevingham, being entertained by our eldest granddaughter and writing a very amusing Best Man’s speech (with a little help from the internet).
Today I want to finish writing the eulogy for my mum’s funeral, and also print and bind the Order of Service. Before I can do any printing, I need to get some card to print on, so my wife and I head off to Taverham to buy some.
30 copies of the Order of Service, 2 pieces of A4 card per booklet, printed both sides, means 120 pages to print. It takes far longer than I anticipate, especially because the card is borderline on being too thick for the printer, so I end up feeding each page through by hand. My wife makes an excellent job of binding the booklets, hand stitching them together.
With that job done, I concentrate on finishing the eulogy. I email mum’s sister to get some more information on their childhood, and then rewrite sections of it – I originally wrote the eulogy from my perspective, because I intended to read it. I have now realised that there’s absolutely no way that I can read it, so one of my nephews has volunteered to do so, and I need it to make sense when he reads it from his perspective!
I finish writing at a shade before midnight, and email copies to my nephew and the lady who will be officiating at the ceremony.
I need to finish the Order Of Service today – my elder brother (who is preparing the Order of Service for me to print and bind) is going to be away for the weekend after this afternoon, so I need to make sure it is absolutely correct before he disappears. There is a revised copy sitting in my inbox this morning, which looks good, bit I’m unhappy with the photo of mum on the cover – it lets the rest of it down, so I set about finding a decent replacement. My younger brother manages to find a few more photos that he took on his phone, and one of those looks a likely candidate, so I email it to my elder brother so that he can replace the cover photo.
While I’m waiting to receive an updated Order of Service, I script, film and edit my weekly vlog. I’m uploading it to my YouTube channel by the time my elder brother sends me the revised document. I proof-read it for spelling errors and typos, and print a copy to ensure it looks okay (which it does). Another job done and ticked off the list.
The first draft of the Order of Service from my elder brother is sitting in my inbox this morning, so my first task of the day is to check it over. I make some notes about the changes that are required and email them to my brother so that he will see them when he gets up (he’s on Nova Scotia time), and then take the dog for her morning walk before driving to North Walsham to buy some card on which to print the Order of Service. Unfortunately, the stationery store in North Walsham has very limited stock, and doesn’t have what I’m looking for, so I’ll have to go further afield (tomorrow).
I received an email from the lady who is officiating at mum’s funeral with details for the Order of Service, so I review them and send copies to both of my brothers (for approval).
I deal with members of the family who had agreed to read some poems at the service, but have now decided that they will be unable to do so (having had unsuccessful private rehearsals), and with those who have volunteered to fill their shoes.
I walk the dog (again) and vacuum downstairs before getting stuck back into organising mum’s funeral. It’s now almost midnight, and I have just sent the final changes to the Order of Service to my elder brother. Time for bed!
A better day today, in that I manage to keep my emotions in check. I start off by creating a music CD for my wife’s youngest son and his fiancee, to be played at their wedding ceremony next Wednesday. It was preying on my mind a little, because I’m so busy making all the arrangements for my mum’s funeral next Monday, so I’m really glad that it’s done and ticked off my list of things to do!
I send the first draft of the eulogy that I have written to the lady who is officiating at mum’s funeral, along with the poems that we have chosen and a passage from “Under Milk Wood” that my elder brother suggested. I also email my elder brother an example of an “order of service” to look at – he’s a graphic designer and has offered to design the order of service for me to print out.
I speak to a florist and order a beautiful sheaf of white lilies and roses for the top of mum’s coffin.
I take a break, and walk around a very wet and muddy field with the dog, and then split a few logs, fill the log basket and light the woodburner because I’m feeling chilly (even though it’s really not that cold).
I pop over the road to The Vernon Arms to confirm the menu and number of guests for the wake on Monday afternoon, and then I sit down and try to write out the content of the order of service so that I can send my brother something to be going on with by the time we go to bed (he’s in Nova Scotia, so several hours behind the UK).
My voice is dreadful at the moment – husky, slurred and strangling my words. My tremor (left leg) is also driving me mad, and dystonia (right foot) is also putting in an appearance. It’s likely that this is as consequence of the stress of the last couple of weeks, rather than any failure of my DBS to control my symptoms, so I don’t fiddle with the settings just now. I rely on a little cannabis to help me out (which it does).
Today I am going to attempt to write the eulogy for my mum’s funeral, and also select a couple of poems to be read out at the service. I think that this is the hardest thing that I have had to do so far. When I start writing the eulogy, the fact that she is no longer with us comes crashing home, and selecting the poems makes it even worse. I end up sitting on the sofa in floods of tears, sobbing my heart out while the dog looks at me questioningly.
After a while I manage to pull myself together and take the dog for a walk. I bump into one of our neighbours who sees that I’m distressed and invites me in for cup of tea and a chat, which does me the world of good.
This evening we have dinner in Hevingham with my wife’s family – it’s her youngest son’s fiancee’s birthday today. This does a good job of taking my mind off things, and by the time we leave there to return home, I’m in a much better frame of mind.
I’m going over to my younger brother’s house in Stalham today, to go through photos of mum and choose one or two to print on the order of service, and also to select some music for the service. It’s not as straightforward as you might think… Mum was a big Tom Jones fan, but the two most popular songs of his are about a murder (Delilah) and a prisoner on death row (Green, Green Grass Of Home), so not exactly appropriate. After much debate and playing of YouTube videos, we settle on Matt Monro – “On Days Like These” for the start of the service, Tom Jones – “Funny, Familiar, Forgotten Feelings” for the middle, and Louis Armstrong – “What A Wonderful World” for the end. I return to Southrepps with a box full of my mum’s photographs to go through – we were unable to agree on which photos to use, so I’m just going to use my judgement.
Daylight is fading fast when I get home, so I dash out with the dog before it gets too dark, then bring in a basket of logs and light the woodburner.
Today my brother and I have a meeting with the lady who will be officiating at mum’s funeral. So, after we have done all of the usual Sunday morning things, we drive over to my brother’s house in Stalham. The meeting goes really well, and the lady gives us some excellent pointers for writing the eulogy, which I am going to do over the next couple of days. I have a busy week ahead of me, because I have volunteered not only to write the eulogy, but also to design and print the orders of service, and to sort out the flowers to go on top of the coffin.
When we return home to Southrepps, I fill the log basket and light the woodburner while my wife walks the dog, and then send emails and text messages to various family members asking them for their memories of mum for inclusion in the eulogy.
My tremor, which had been fairly well controlled this week, is breaking through in my left leg a little more strongly today, so I self-medicate with some high THC cannabis oil that I was sent last week – very effective! I will try turning my DBS off (when I get a few hours to spare) and see if it is as effective as vaping the plant itself.
I’m going to pick my car up from East Bilney Coachworks this morning, so my wife and I are going to combine this task with a shopping trip to Norwich – my wife needs to buy herself an outfit for her youngest son’s wedding on 22nd November, and I need to buy myself a suit for my mother’s funeral that can also be worn to the wedding (provided I manage not to spill any food or drink over it at the funeral/wake).
The car looks fine, and the new paintwork matches the old, so I was worried unnecessarily. It’s good to hand the little courtesy car back and fire up my Porsche – I’ve missed it!
We drive into the city centre, get parked and go shopping. My wife finds what she wants and I find a suit that my wife likes (which is very important) in double-quick time, and so we move on to the cake decoration warehouse, where my wife purchases cake boards, cake boxes and ribbon necessary for decorating (and keeping safe) the wedding cake that she is making for her son’s wedding.
We are home just as it its getting dark, and my wife walks the dog while I bring some logs in and light the woodburner.
I’m feeling completely knackered, so I slump on the sofa while my wife prepares dinner. I do manage to summon up enough energy to pop open a couple of bottles of beer! It’s my son’s birthday today – Happy 20th Birthday, Son! I raise my glass to him – any excuse, eh?
I receive a phone call from East Bilney Coachworks to tell me that my car is ready to be collected. In feeling slightly nervous about it because last time they did some paintwork on my car, they got the colour horribly wrong and ended up having to do the job again and again until they got it right. They have had the car for almost 2 weeks now (for a job that shouldn’t have taken more than about 3 days) which would suggest they have been struggling to match the paint colour again… I won’t be able to go and fetch it until late this afternoon (and then the daylight will be fading) so I arrange to pick it up tomorrow morning instead.
After walking the dog this morning, I pop into The Vernon Arms to talk to the landlord about arranging a buffet for my mum’s wake on 20th November.
That done, I get to work on my weekly vlog, which this week is about the stigma attached to the use of cannabis as a medicine, and how my mum never let on to me that she knew I used it. I write a script, film myself (with minimal re-takes, for a change), edit it and upload it to my YouTube channel (taking a break to walk the dog again, and to light the woodburner – its definitely getting a bit chilly now) before my wife gets home from work.
After dinner I pop open a beer, self medicate with a little cannabis and settle down in front of the telly to watch an episode of Dexter on Netflix.
Today is spent dealing with paperwork relating to my mum’s passing on Monday, and arranging her funeral.
So, after a quick walk around the village hall playing field with the dog, I head over to Stalham to pick my younger brother up, and we drive to North Walsham to the registrar’s office to register mum’s death. Then we are off to Cromer to complete the necessary paperwork at the funeral directors’ office. Finally we pay a visit to the crematorium, just so that my brother can be reassured that it’s a fitting place for mum’s final journey.
I drop my brother off in Stalham and return to Southrepps just in time to walk the dog before it’s completely dark.
My wife’s two sons, their fiancees and children pay us a visit this evening, armed with bags of fish and chips from the local chippy in Roughton.
My wife is looking after both of our granddaughters for a few hours this morning, so I drive over to Hevingham to join her (after walking the dog) which helps with keeping my mind off things for a little while.
I return to Southrepps around lunchtime and decide to split a few logs, fill the log basket and then vacuum downstairs to keep myself busy.
I take the dog for her afternoon walk, intending to light the woodburner when I got back indoors, but the exertion has warmed me up and I no longer feel the need. I wait until I’m starting to feel the chill, and light the fire in plenty of time to make the cottage nice and toasty by the time my wife gets home.
Today has passed in a bit of a haze. My wife has been running around after me (as usual, but even more so) making me drinks, checking that I’m okay, not wanting me to do anything.
I send messages to my two brothers to make sure they’re okay, and then prod my younger brother into action – we have to make an appointment at the local registrar’s office to register my mum’s death, start organising the funeral, complete various pieces of official paperwork, notify various official bodies. My brother calls the registrar’s office and makes an appointment for Thursday morning.
I accompany my wife to work, just to keep myself busy and take my mind off things. My wife finishes work early and we return to Southrepps where my wife walks the dog and I light the woodburner.
My elder brother summed it up when I sent him a message (he lives in Nova Scotia) to let him know that our mum had passed away. “The world feels a little emptier today” he said – and so it does.
Our mother finally gave up the fight against Parkinson’s Disease, and slipped away peacefully this morning. My heart (and those of my two brothers) is broken, and this world will never be quite the same again.
My wife is busy baking a wedding cake for her youngest son’s wedding this morning, so I busy myself responding to the many messages that I have received on social media, and then I take the dog out for her morning walk.
This afternoon we drive over to Stalham again to sit with my mum for little while. She is still warm and comfortable and unconscious. We chat away to her, and stick a Tom Jones album on the record player.
My speech is getting quite slurred on my current settings (group “B”), so I change over to group “A” settings for while, and my voice gets a little clearer – the annoying tremor in my left leg remains.
It’s getting chilly by the time we return to Southrepps, so I fill the log basket and light the woodburner after walking the dog again.
My daughter and I are spending some more time with my mum today, so after the dog has been walked, we’ve had cups of tea/coffee and breakfasted on bacon and eggs, we drive over to Stalham.
Mum is much the same as she was yesterday – unconscious, but warm and comfortable and not in any pain. My daughter and I talk to her about family members who have sent their love, hold her hand, tell her how much she is loved…
Eventually we return to Southrepps to have some dinner, before my daughter has to leave and drive back to York where she is at university. She’s glad that she got to see her grandmother, and I’m pleased that it has given her some comfort.
I have had so many messages of comfort and support from people who subscribe to my blog and my vlog, from people who belong to the same Parkinson’s groups on Facebook that I do, as well as from friends and relatives – it is very touching, and very much appreciated.
A difficult day. My vlog this week is about saying goodbye to my mum, who is fast approaching the end of her life. I didn’t want to do it initially – I didn’t think if be able to do it. I sat on the sofa when I got back from walking the dog, and started writing a script. Once I got started, the words flowed readily enough, and I soon had something that I thought I could film without getting too emotional.
I filmed myself in short bursts – taking time out to compose myself when I felt myself struggling. I edited it as best I could, uploaded it to my YouTube channel and published it.
I walk the dog again, and then drive over to Stalham to sit with my mum for a little while. My daughter is driving down from York this evening, wanting to say her goodbyes to her grandmother, and I wanted to be sure that she wouldn’t be too distressed by her appearance. Mum is unresponsive, and appears to be peacefully asleep, her breathing getting shallower with each passing day.
My daughter arrived around 10pm and we went to Stalham straight away. Mum seemed comfortable, and my daughter said that she thought she had reacted to her voice, so that was a comfort to her.
It’s another day (or at least part or it) of sitting with my mum, so I drive over to Stalham as soon as I have taken the dog for her morning walk. She’s much the same as she was yesterday, not giving any indication that she is aware of me being there. They do say that the sense of hearing is one of the last things to desert us when we leave this world, so I talk to her about her grandchildren, tell her that I love her, and battle with the lump in my throat.
At 2pm I have to take my leave of her and dash back to Southrepps. I’m having a trailer-load of logs delivered and have to be there to move them off the road and into our back garden. The logs arrive, and I load them into my wife’s pink wheelbarrow and take them into our back garden and stack them against the garden wall. By the time I finish, it’s getting dark and I’m extremely grateful to a couple of my neighbours who see me struggling and come to my aid – I thought that I would have sufficient energy to do it all myself, but I was wrong.
A hot bath and a shave make me feel (slightly) more human again.
I go to Stalham today (after walking the dog), to sit with my mum. She has advanced Parkinson’s, has been semi-comatose for a number of days, and now appears to be giving up the fight for life. I can’t say I blame her, really. She has had a hard few years, with Parkinson’s taking not only her ability to do the simple things in life that gave her so much pleasure (leaving her unable to walk the half mile into town, or tend the vegetable patch in the back garden), but also her dignity and her will to live. She said to me recently, when she was having a particularly bad day, “It’s not worth going on, is it?”, and I found myself unable to disagree with her.
Yesterday, mum was aware that I was there – she reacted to my voice, she opened her eyes and saw me. Today she just appeared to be asleep all the time that I was there – there was no reaction when I spoke to her or held her hand. It’s very hard to sit and watch someone that you love fade away before your eyes.
To those people who have reached out to me with messages of support (you know who you are), I thank you from the bottom of my heart for your kind words.
I have to take my car to East Bilney Coachworks today, so that they can rectify some dodgy work that they did. I wait until rush hour is over, and then drive the 20 miles or so to their depot in Norwich.
Whilst I am completing the necessary paperwork, I get a call from my younger brother telling me that our mother is seriously ill and that I need to go to see her as soon as possible. I pick up the courtesy car that the garage is loaning me, drive home as quickly as (legally) possible, walk the dog and then get myself over to Stalham to see mum.
My mum has advanced Parkinson’s Disease and has been in a semi-conscious state for several days – a state that she has been in (and recovered from) on a couple of previous occasions. This time is different, and it really is looking like this is the end of the road for her. She recognises my voice and knows that I’m there. She sees me, but she cannot talk and can scarcely nod her head in response to any conversation directed towards her. She hasn’t eaten for days and her fluid intake is practically nil. Her doctor says that she is comfortable and not in any pain, and says that she is better off where she is rather than sending her to hospital. It breaks my heart to see her this way, and I hope that the end comes swiftly, for her sake.
I (and my wife) sit there with her most of the afternoon, playing her old Tom Jones records to her on her record player, until we have to return to Southrepps to attend to the dog.