My lovely wife, Edwina
A personal story, by Bryan Hancock, featured in our January 2022 Newsletter

My lovely wife, Edwina passed away with Sporadic CJD on 28th October 2020. She was 73 and we had been married for 51 years.

Edwina was a wonderful wife, mum and Nana with a very witty sense of humour. Strong in character yet humble and non-assuming, respected by her family, friends and neighbours. Small in stature only five feet tall, she was described at her Memorial Service as a ''pocket rocket''. A beautiful lady with lovely speckled eyes and wonderful smile. She was my rock.

August
In August 2020, Edwina enjoyed a relaxed Covid month; BBQs with family and friends, lunch with her best friend, meals for both our birthdays and a weekend looking after our youngest grandsons.

September
In September, as we visited our eldest grandson and his partner for lunch and had a week away together in Canterbury. It was then that I began to notice Eddy was quieter than usual, anxious at times and – for the first time ever – she asked to sleep alone in the second bedroom. 

As September progressed, Eddy became more withdrawn. During a 4-day visit to us with her mum our niece - Jean - noticed some unusual behaviour and suggested I take Eddy to see our doctor. On 23rd, Eddy set off on the familiar drive to see a good friend. Becoming distressed and confused on the way, she had to call for her help to get her home. Two days later, Edwina saw her doctor alone as I waited outside due to the covid restrictions.

 

The following day, after a visit from our daughter and her husband for fish and chips, Eddy had difficulty sending an email. She began struggling with technology - becoming unable to use the TV remote, laptop or her phone.

On 30th September Eddy had an MRI scan and two days later we both attended an appointment with her doctor. Starkly, she gave us the news “I believe Eddy has CJD, and it’s fatal”. We walked home together in silence and shock. The following day, Eddy’s friend visited us at home again and sat comforting Eddy who was strangely calm. The next day, my son visited with his wife and my nephew. There was little interaction.

October
On October 6th, a Neurologist conducted various tests including asking Eddy to “write down 20 animals in one minute”. An avid and lifelong animal lover, Eddy could only name one – a cat! By now I realised that Eddy was in serious trouble and that I could not help her as I wished – I felt totally inadequate, it was a very stressful time for all of us.

Over the following week, close family, neighbours and Eddy’s friend visited – something which was very upsetting for everyone. On the 10th, Eddy and I went out in the car to the beach for tea and a bun. In retrospect she must have been so strong to achieve this. We hardly spoke, she sat watching passers-by, and just wanted to go home.

As her symptoms progressed, Eddy began losing mobility, couldn't speak clearly and was hallucinating at night. She gradually lost her appetite, refusing food at dinner - I thought it was my terrible cooking. Helping her up and down the stairs became a struggle and assistance with dressing took an eternity, she could hardly participate. Showering was an issue too, she found it very difficult to step in and out of the shower tray. There was some light relief; as I helped her with washing, she giggled loudly! Incontinence was a late problem; such accidents would have appalled her.

My wife was admitted for 10 days to a hospital Neurological Ward on 14th October and my son James came to stay. Edwina had daily visits from close family members and fantastic care from nursing staff, some of whom had never 

encountered CJD. There was a noticeable decline during this time with muscle spasms an issue. Much of the time she was unresponsive, and eating and drinking was difficult. I wanted a calm and sympathetic environment for my wife's last days, free from the noisy ward she was in, so we moved her to a local Hospice, where she again, had wonderful 24-hour care. I am grateful that I was able to stay overnight on her last two days, and was at her bedside when she passed away at 7.15am on the 28th October.

The first year without her
Bereavement for me was a real struggle, battling with the loss of my soulmate of 51 years. There were plenty of tears and emotions when talking to family members and indeed complete strangers. Somehow, I felt that I had to share my experience with them. I faced grief, anger and loneliness.

The initial period following Edwina’s passing was busy with organising her Humanist funeral. Due to Covid restrictions, only 25 attendees were permitted. Though I felt too emotional to deliver my eulogy, my elder niece deputised very well. A little time later I collected her ashes from the undertaker, contained in a lovely wooden casket inscribed with her name. It was comforting to have this in our lounge, until another service and internment could be arranged.

I was fortunate to spend Christmas at my son's home with his wife and my two young grandsons, aged 6 and 8. My daughter and husband also joined us and there was lots of excitement and fun to enjoy. A bonus was to have Boxing-day lunch with family and a cousin who was Edwina’s bridesmaid. The New Year brought new hope everywhere.

 

Covid vaccines were being developed and the country was optimistic. I still felt Edwina's loss throughout every day, but knew she was with me. Odd things, maybe coincidence, occurred, all positive.
I had great support from family and friends. Involving myself with Eddy’s friendship group was particularly helpful, many were long-standing, and I knew them too.

Walking and fresh air by the sea and in the forest was great for exercise and clearing my head. It also gave me an opportunity to talk to complete strangers if they were so inclined. These people were a wonderful help on my journey. We were lucky to have such a beautiful retirement location, and I was grateful that Eddy shared nearly ten years with me there.

A celebration of life
I was heartened with the task of organising Edwina's 'Celebration of Life Service', it was very therapeutic, planning a suitable personal programme dedicated to my wife. I considered every detail and included 8 popular songs from the 60's and 70's from her favourite artists, such as Gene Pitney, Rod Stewart, Queen, Lionel Ritchie and Whitney Houston. All offered personal lyrics of great meaning to me. My two children, or should I say 'friends', read two lovely poems. 'Memories of Edwina' were sought from family and friends, and so many replied. They were presented by my cousin, a bit of a Thespian and ideal for the job.

 

I had the opportunity to deliver my own memories of our life together, which - understandably I guess - was a little long! It was a joyous and upbeat Humanist Service with 80 attendees, in July, exactly 9 months after Edwina’s death.

 

As the year has progressed life has been a little easier. I have benefited from some counselling sessions at the Hospice, learned some new domestic skills, particularly cooking, and stayed with my family and longstanding friends, who have been so important. I have yet to tackle the garden properly or play golf again but that will come in good time.

Eddy is with me, and always will be.

At the CJD Support Network Family Support Day in November 2021, it was comforting to meet with other people who are intimately familiar with the curse of CJD and the effect it has on a loved one and their family.


 

Great benefits from attending a Family Support Meeting
by Sandra & Mike Walshe

In August 2007 my sister in law Kay died of Sporadic CJD, leaving us all devastated and unable to make any sense out of what had happened to her over the last five months.

Three Months later my husband and I attended the family support meeting, not something Mike would have even contemplated under normal circumstances.  Initially his thoughts were;  "Why would I want to sit down in a meeting all day with people I don’t know, what will I be expected to do, do I really want to talk to strangers about loosing my Sister while I’m still feeling traumatized & upset". But these were not normal circumstances, no one he spoke to knew anything about CJD, the Doctors treating Kay had not met anyone with this disease before, it felt like a closed shop when it came to finding out any information other than through the CJD support network helpline which really did feel like a lifeline at the time. On reflection now he thinks it was the best thing he ever did to start the healing process of coming to terms with his loss. He felt that for months nobody he spoke to knew anything about  CJD and then he found himself sitting in a room full of people who all knew something about the disease.  It felt almost serene.

Everyone who attends the meeting is affected by CJD in some way or other, families with someone newly diagnosed, people who are living with the disease or the threat of it and sadly those who have lost someone either recently or some time ago.  Everyone has a common bond and without exception benefits from the mutual support of one another. People generally arrive feeling a little anxious and uncertain as to what they are letting themselves in for, but always leave with a smile, better informed and reassured that they are not alone. Experts in the field of CJD give talks about things of interest, they are on hand to ask questions either in a group or discreetly over coffee or lunch,  Some people just want to listen and take it all in.  There is never a better opportunity to raise the un-answered questions and talk to people in the same position, in a warm, friendly environment.    We are looking forward to the extension of the family support meeting over two days this year; it will be good to have more time to spend with families who we have got to know over the years.    

Do consider coming to the Family Support Meeting, I'm sure you will not be disappointerd.

Sandra and Mike

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