Eleanor’s Story
Eleanor and her partner recently decided it was time to write their Wills and chose to use one of the free Will writing
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The pair became engaged 4 years later and loved going to watch football and music gigs together.
Mary said: “We got on so well and liked being in each other’s company.”
Life was pretty perfect until Rob started experiencing difficulties with his hands in 2010, and went to the doctor.
Following tests, the couple were given the news – Rob had Motor Neurone Disease (MND), a progressive life-limiting condition that affects the neurones in the brain and spinal cord.
The diagnosis came a week before Rob’s 50th birthday.
Rob and Mary married soon afterwards surrounded by family and close friends.
Prior to the ceremony, the couple visited their favourite eatery, El Coto, in Newcastle, where the manager inadvertently organised their honeymoon.
“He was from Tavira in Portugal and was telling us all about it. It sounded lovely so we went there for our honeymoon. We had such a wonderful time.”
After that, the pair went on a cruise to Central America where they visited Costa Rica, Mexico and sailed along the Panama Canal.
Rob and Mary regularly attended the MND Clinic at the General Hospital in Newcastle and during one visit, it was suggested that the pair would benefit from attending the Focus on Living Centre at St Oswald’s Hospice.
During their weekly visits to St Oswald’s Hospice, Rob received medical care from Dr Andrew Hughes, a Consultant in Palliative Care and Dr Lisa Bushby, a Senior Occupational Therapist.
Mary, who has Rheumatoid Arthritis, also received complementary therapies, including massage.
As Rob’s symptoms worsened, he began attending short breaks in our Adult Inpatient Service, with Mary able to stay overnight in the room.
Rob became a regular in the Main Reception where he watched football on the only television at the time with Sky Sports.
“Everyone knew Rob and people would come and sit with him while he was watching television,” Mary revealed.
Mary explained that Rob made many friends at the hospice, adding that he once enjoyed a memorable pub crawl at the coast with two fellow patients, supported by St Oswald’s Hospice staff members.
Mary said that while there were moments of sadness, there were lots of laughs at St Oswald’s Hospice too.
On one occasion, Rob visited the Main Reception to find a sign on the television saying it wasn’t working.
Did this mean no match for United’s biggest fan?
Not so, as the sign was actually a light-hearted prank by our receptionist, which Rob found highly amusing. As the smiles subsided, the television was back on, ahead of kick-off!
Another time, Dr Lisa Bushby asked Rob if there was anything he wanted to do. Rob explained he had always wanted to fly in a glider to honour his dad who was in the RAF.
After speaking to Rob’s wider care team, Lisa contacted a local gliding club and made his dream come true.
Mary, who watched her husband’s high-octane trip into the clouds from terra firma, remembered:
“Rob was so happy when they landed that they took him up again.”
It was Rob’s desire to die at home, and with the support of Mary and his care team, he was able to do so.
Rob died on 14th November 2013 with his wife by his side.
She also took up writing poetry to manage her grief.
Mary set up a tribute fund in aid of St Oswald’s Hospice to honour her husband, and she regularly attends our Light Up a Life events.
Mary finds great comfort in meeting members of the care team who looked after her and Rob while joining with others who are grieving.
She explained: “Over the years, I’ve attended Light Up A Life with family and friends, and other times I’ve gone on my own.
“There’s been times when I’ve been outside not knowing if I’d be able to go in. But I’m always glad I have.
“Grief changes you forever and it never goes away, but being in that room when the lights are switched on means so much.
“Rob is with me always but, in that moment, it reinforces my connection to him.”
She continued:
“Christmas is also a difficult time to be without Rob but having Light Up A Life, and being with other people in a similar situation helps me prepare for this time of year.
“I feel I can breathe again.
“Having something that celebrates not only the lives that have been lost but also the good work that St Oswald’s Hospice does is amazing.”
Mary has written a poem about her experiences of Light up a Life:
Please don’t look at me
Don’t offer a smile, a hand
Please don’t ask me to speak
I can’t, not right now
Let me negotiate the crowd
Keeping my head and gaze low
As tears fill my eyes and slowly spill down my face
My mask is slipping and I stumble
I need to be here
Want to be here
For him… for my love
So I’ll do anything to get through this night
I can’t do much for him now
But, what I can do is
Light up his life
Each of us is here tonight
Going through so many emotions
To honour our loved ones
Keeping their memories burning bright
So, can I simply say, thank you all
Each and every one for sharing this night
I wish you peace
As the lights sparkle on the tree
We will be remembering Rob and all of the other people who have touched our lives at St Oswald’s Hospice, by lighting a candle in their memory as part of our Light up a Life campaign. If you would like to remember someone special by dedicating a light in their memory, you can find out more on our website once the campaign launches in mid October.
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