Monthly Archives: March 2014

It is now 1 year since Veronica passed away

 

I remember as if it was Yesterday, March 9th 10.20pm the last time I held Vicki in my arms, I never thought it could be the last time and that she would never come home, then the night Vicki passed away 16 days later, will be with me till the day I die.

 

Since Vicki passed away my own health has changed I now use my wheelchair more I also have an electric chair, and Vicki would be pleased that I use her lift more now, she told me to stop being stupid, and yes she was right most of the time.

 

12 months have now passed, the first few weeks were so difficult I couldn’t have got through without the help of my daughter and my 3 granddaughter’s (my girls) as I call them.

Nikki helped with funeral arrangements she chose the casket made from willow, quite fitting really as that is the name Vicki gave to the kitten we adopted 4 years ago. I was happy with the choice I also had a heart pendent for some of Vicki’s ashes to be put in, (she often said she would like her hands round my throat).

 

At first when I went out anywhere I felt guilty simply because I didn’t have to rush back home, I’m still the same, when I come home after a couple of hours away I still call out I’m home my darling, as I didn’t have the luxury of Vicki passing away at home I like to think her spirit is with me.

 

June 21st would have been Vicki’s birthday followed by our 39th wedding anniversary, so I decided to release 60 pink and purple balloons near to where we used to go on Cannock Chase friends and family came and it was a very windy day and raining, but as we parked up the clouds went and the sun shone, I opened the back doors cut the cord and all the balloons were gone in 46 seconds, a second for every year together.

 

After 3 months I decided to decorate the front room I chose the colours and am happy with the change, and so my life has also changed. Also I decided that because Vicki had battled for disability issues for 12 years the last 5 up to 2010 when I decided it was time to stop, from the bed that she was confined too, that I would do what I could to help.

 

I did not want the same to happen to others that happened to Vicki, it was a news letter from the hospital I was reading about MS society and volunteering, so I sent an email and waited, I also registered for social housing on the Isle of Wight, we thought about going to live back there but because of her needs it was a big no.

 

I am now a Neuro Champion for the Black Country Neurological Alliance for MS, MND and PD, I attend meetings road shows and raise awareness of Neurology, so many groups Health Watch, CCG, PPG, A&E Pt forum and trying to get a Neurology unit at my local hospital.

So yes my life has changed in many ways all but one I still talk to Vicki, the usual good morning and good night my love and I still say pardon me when I burp.

I have my immediate family and friends around to help, and my new twitter family, many are or have gone through the same loss and emotions as I, all affected by MS, MND, Cancer in one form or another, and all are a source of comfort and fun.

 

Can’t believe how quick the time has gone, and yet some days go by slowly, one thing I do have is a set of DVD’s of a video that Vicki did for The Open University in June 2007 titled Living with MS Veronica’s Story, one is only 5 minutes, other 3 are about the days filming, their is also an audio The Battle for Funding, I often put them on switch on and turn up the volume to the surround system and I can hear Vicki talking as I move around the house.

I can also see the effort that Vicki put into the day and the tell tale signs that the MS has on her that I never noticed then.

 

So the next few days will be a sad time, not because 12 months have passed so quickly, as for me it is no different, my feelings for Vicki are still the same they haven’t changed one bit, could I have done more, done something different, been more alert to her condition, I don’t think so, I knew it was inevitable I had seen 2 friends in the same condition as Vicki, they both passed away within I year of having a peg feed tube. It still doesn’t make it any easier.

 

Nikki goes to a spiritualist church for her own reasons, I’m not ready for that, I have cried in front of friends and strangers when I talk about Vicki its hard not too, and I cry a fair bit at home where no one can see, I cried each of the 8 times I had to take a pet cat to the vets to be put to sleep, disease is not just for humans pets have the same conditions, heart, brain tumours, cancer of liver and kidney, they are all buried in the garden along with some of Vicki’s ashes.

 

I’m not ashamed to admit I cry, for me it’s part of the process of life, I have been ice skating twice in my wheelchair no doubt I will go again, my girls love to go.

 

I don’t regret anything, I’m not angry anymore, I was so lucky that Vicki chose to spend her life with me, we had 2 wonderful children and a wonderful life together, our son played bass in a local band in the mid 90s we went to many of his gigs.

Yes I was very lucky to have shared my life with a truly wonderful vivacious woman, who over the last months decided to let her natural hair colour come through a red head again.

 

I look at my young 3 granddaughters the youngest Ellie-Mae she often asks do I miss nanny, before I can say yes Leah and Ashleigh say see you’ve made granddad cry, I tell them its ok, and if I do anything wrong Ellie-Mae shakes her right index finger at me just like Vicki did, she will say nanny with the angels, yes I believe she is, and yes I think Vicki would be very proud of them.

 

I often raise a glass to the memory of Vicki when out having a meal with our friend Lynda, on the 27th March I’m off to London in my wheelchair by train (my first train journey for over 40 years) what an adventure, for a meeting at MS society head office to talk about being a Neuro Champion.

 

All because I shared my life with a wonderful woman and a dreadful disease.

 

 

 

The Last Day

Day 15
Good morning my love, I did not sleep well awake most of the night, thinking of you and your struggle with life.
I feel that it’s time for you to come home, you have suffered enough away from me and your home, so yes it is time, I will ask and arrange it for you, for me.

Had coffee fed the cats it is nearly 8am time to phone the ward, I’m told you have slept most of the night with the mask on.

Lee will come with me he will stay till 4pm, then he’s off to Birmingham for his gig, see you soon my darling.

Arrived on the ward just before 2pm, the nurse came to do the meds, Vicki does not look to good she is pale, Nikki came and lee left he is upset its 3.30.

At 4pm I called the nurse Vicki is struggling to breath, she changes mask for the nebuliser, after 15 minutes it’s not working the doctor arrives and puts in a Canula and started anti biotic’s and asks for some bloods to be taken.
Nikki is very upset to see her mom like this, so I ask her to go home and feed the cats for me, so off she went.
The phlebotomist comes and tries to take blood but can’t so she ask for the doctor to come back to take blood from Vicki’s foot, while waiting I txt Lynda, I ask the doctor if Vicki can be moved to a side ward, she said yes and will arrange it.

Lynda arrived at 6pm, Vicki is getting weaker and I’m scared now I don’t think I will be able to take her home, nurses come to move Vicki to a side ward, they have to move a woman out first, once the move is done I am asked to wait as the Registrar wants to examine her, so while we wait I phone Nikki to come back as soon as she can and be careful.

The registrar comes out he’s been in there for 30 minutes and asks me into the office, he explains to me that Vicki’s organs are slowly shutting down and clinically there is nothing that can be done except to make her comfortable, and to withdraw the medication, he said he is very sorry, he leaves me in the office.

Tears start I try and phone Lee it goes to voice mail I leave a message to phone me urgently, I phone Vicki’s older sister, and tell her to come as soon as she can, don’t know how long we have,
7. 20 I try Lee again he answers I tell him to get a taxi and come back to the ward, I txt Glyn as call goes to voice mail.

That done I go out Nikki is with Lynda, I tell Lynda that they don’t expect Vicki to last the night, she said that she would go as now it is family time, and to let her know, I thank her for being their.
Nikki and I go in Val arrives and a young nurse is getting a saline bag ready, 8pm Lee arrives so I tell him his mom does not have long, the nurse tells us to talk to Vicki as she can still hear us.

This is so difficult not just typing this but I live through this every day, Vicki’s eyes are closed and very pale now, about 8.30 a single tear trickles from Vicki’s right eye down her check and she is gone, I touch the tear with my finger and put to my lips, the nurse feels for a pulse but no, Vicki is now at peace, sleep Love.

My love is now with the Angels; her long fight with this dreadful disease is now over, after a while the nurse is back with the doctor and we are asked to leave, doctor comes out and tells me he is sorry, and to wait while the nurses remove tubes etc and clean Vicki .
I txt Glyn and Lynda that Vicki is now with the Angels.

I have left out quite a bit about Vicki’s life and time while in hospital including her last moments, as it is very personal to me and I feel that I have shared and bared my feelings and my love to the woman who made my life so complete, I will miss Vicki till the day I die.

I have written many pages from the day I met Vicki, all I remember about her that day is the red hair, her big boobs and the blue mini dress and although I didn’t know at the time we would one day be married, that is how lucky I was, to have met someone who knew from the first meeting that she would marry me, she was so confident.

Good bye my love god bless.

Day 2 of 15

Day 2

Been awake since 4am had couple of hours sleep, cats fed 6.30 on my second coffee then brekkie, I’m stocking up on caffeine so 1 more coffee.

It’s 7.30 I phone ITU and I’m told Vicki had just woken up, she has had a fairly comfortable night still very drowsy, possibility she will be moved this morning, and I will be informed.

Phone call at10am its reception in HDU the Dr wants to see me ASAP, I tell her I will about 20 minutes.

I arrive in HDU the Doctor and staff nurse introduced them selves and take me into the family room, as the Dr explains in detail Vicki’s condition the nurse holds my hand and the tears start to flow.

He said Veronica’s condition is not good the problem is that MS has devastated her body; plus being underweight the muscles are not helping the bodies organs work, clinically if her heart was to stop they could not resuscitate her, the time may come when her organs start to shut down, she has been very lucky, so I must be prepared, If that happens they will withdraw any treatment and make her as comfortable as possible.

He asks if I have any questions, anything at all, I’m struggling to think, I ask about the sodium levels; he said they are still high and her kidney function is 90%, its early days and they will keep me informed at all times. I thank him and staff nurse;

I compose my self and go and see her, again I’m shocked to see Vicki and all the equipment that is by the bed, as I talk to her I try not to cry, she has a full face mask on and tries to speak but I can’t hear, I talk holding her hand and tell I have to leave but will be back soon, she looks very fragile and very frightened, I tell her I love her very much and I will be back at 1pm not sure if she understands.

Back at HDU 1pm, another nurse looking after Vicki introduced herself, and explained about the equipment at the bed side and said to ask if I needed to know anything. I tell her about the MS and about Vicki’s immobility, her right arm and left leg are both fixed, can’t use left arm or hand can only use index finger and thumb on right hand.

Visiting in HDU is 1-2 4-7 pm,

Vicki keeps asking about the TV, she can’t change the channels and the remote isn’t working also she can’t see the clock; she thinks she is at home.

I try to explain to her that she doesn’t have the remote it’s at home.This is when I realise she is hallucinating I ask the nurse about Vicki’s meds from home, she explains that they stopped them while on stronger meds on the ward.

Her white cells and blood sugar are both high, she is on Insulin sodium levels still high but coming down slowly.

Mask is off and she asks again why she is in hospital, I tell she is very poorly, because Doctors not sure how long Vicki has, it’s so difficult I have tried to explain to family and close friends of Vicki’s condition, so they will be here at various times.

I ask the nurse if they can apply the face cream in the morning instead of water and she said yes, so I explain in the cream in order.

There is a large chart by side of the bed, its quite visual colours and graphs with all different meds on it.

Our son and daughter are here, it’s understandable that they are upset seeing their mom in this condition, especially as its mothers day.

Well from now every day Vicki is alive is a bonus, Doctors didn’t think Vicki would make it to Monday, I wonder how much does she understand about her condition, not sure if I should ask her, is it better that she does not know?

All too soon it’s time to go, we have not been apart since 1986, when I  worked away from home, and again Vicki asks me to stay the nurse said 15 minutes. I stay till 8pm Vicki whispers that she loves me I tell her I love her very much she smiles as I kiss her goodnight then I’m gone.

Our son has gone back to Bristol, but will be back at the weekend, back home I have some messages on machine I sort them and return phone calls.

Write days events in my diary then it’s off to bed, I’m sleeping in Vicki’s bed it’s easier than unfolding my bed, plus I feel she is with me, can’t get used to the air mattress, at least it’s better than the old social U bend of a bed that Vicki had, she loved this Bakare bed she said it was very comfy.