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Judy shares her experiences of husband’s care while living with MND

Pete and his family were cared for by Saint Michael’s from his diagnosis until the end of his life at home, where he wished to be.

In May, Judy Sturley took part in our Hospice 100 challenge and raised a remarkable £1,800 for Saint Michael’s, as a thank you for the care and support her husband Pete received while living with MND (Motor Neurone Disease). Pete and his family were cared for by Saint Michael’s from his diagnosis until the end of his life at home, where he wished to be.

To help raise awareness, Judy shared her experiences on her Facebook page. Today is Global MND Awareness Day, and we are very grateful to Judy for her kindness in allowing us to share some of these emotive and poignant posts, which illustrate the personalised specialist care Saint Michael’s can give to people living with MND as well as some of the challenges faced. Throughout the week, we’ll be sharing more of Judy’s posts.

Motor Neurone Disease (MND) affects the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. It causes weakness that gets worse over time and as yet, there is no cure.

Judy said: “Over the last year we have had such wonderful support from the team at Saint Michael’s and I cannot begin to express my gratitude.

“I don’t know where we would have been without you. The support for us all has been absolutely wonderful.

“This photo was taken on my birthday one year ago in May. Less than two weeks after this photo, our lives changed forever.

“I don’t know how we got through the last year, but I am so grateful to the team from the hospice and all the wonderful support that they gave us.”

Access to grant funding…and access to the first floor!

The hospice team have a huge network of contacts. They arranged for a stairlift to be installed so that Pete could go upstairs, and also arranged for it to be funded by a grant from the Motor Neurone Disease Association.

Other connections, arranged and maintained by Saint Michael’s, that helped our family were: –

– Just B counselling for the children

– Young Carers

– Social Services

– MNDA financial advice line

– Leeds respiratory physio and equipment loan

– Barnsley Assistive Technology team

– NHS multidisciplinary team (including neurology, speech and language therapy, physiotherapy, occupational therapy, district nurses, dietician, palliative care)

– MNDA local branch support

– Blue Badge Scheme

There are probably a few I’ve missed too!

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"I don't know how we got through the last year, but I am so grateful to the team from the hospice and all the wonderful support that they gave us."

Essential equipment

The red armchair is an electric riser-recliner that was loaned to us from the hospice’s equipment store. It could help Pete to find a sitting or reclining position and could even lift him to standing. It was super-comfy (I know as I camped in it overnight in the last weeks of Pete’s life).

The tech on the table in this picture is an adapted ipad which allowed him to page me when he needed help, he could use it to control lights and the tv/radio, and there was a text-to-speech app that we could program to help him communicate when his speech deteriorated.

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"Every member of the Saint Michael's team goes above and beyond their job description. The love and care that is present in everything they do, is so comforting."

Never “just a job”…

Every member of the Saint Michael’s team goes above and beyond their job description. The love and care that is present in everything they do, is so comforting.

If your loved one received a devastating diagnosis, wouldn’t you want them to be cared for with such dedication?

This picture shows a tender moment with the lovely Kate, Saint Michael’s specialist MND nurse.

Family liaison support

In the autumn, Pete spent some time in the Inpatient Unit at Saint Michael’s. Every morning during his stay, a member of the Family Liaison Team would phone me to update me on how Pete’s night had been and how he was getting on, and would also take the time to ask how the kids and I were doing.

I can’t describe how it feels to be separated from a terminally ill loved one for any length of time. These daily updates lifted me up every morning and gave me the strength to face the day.

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"This attention to detail truly personalises the care."

Creating memories…care for the whole family

So, you’re a specialist MND nurse supporting a family whose quality time is being rapidly reduced by the limitations of their family member’s illness. When holidays, trips outside and even a walk round the block pushing the wheelchair are no longer possible, creating special family times requires a new level of resourcefulness.

One day Kate arrived with a large box under her arm. Unpacking it revealed all the elements to build a campfire in our living room! Every piece had been hand knitted, even down to the marshmallows for toasting!

She had taken inspiration from our last summer holiday to our favourite farm in Wales, where we had enjoyed sitting on the patio of an evening with a fire going. Kate had taken that memory and turned it into something we could still do: have our fire and tell stories around it in the comfort of our own home!

This attention to detail truly personalises the care. Your donations help to make this happen, to create lasting memories to look back on with fondness.

Just B: helping children to manage their grief

Telling our children that their Daddy was dying was the most painful thing I have ever had to do, and I pray that most people who read this will never know how it feels. Sadly, such tragedies do happen and this is where the Just ‘B’ bereavement and emotional wellbeing service comes in.

This photo shows my daughter’s memory jar, which she created during a session. She’s built up a rainbow of layers of coloured chalk, added some glitter and written down some special memories of her Dad, tucking the notes into the top of the jar. Each coloured layer represents one of these memories that she’s chosen to include. It will no doubt be a treasured item for years to come.

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"We were able to visit every day and spend precious time together, and I would come away knowing that he was in good hands."

The Inpatient Unit

Pete spent some time as an inpatient at the hospice. The setting is beautiful and the view from his room was stunning!

Whilst there, Pete received wonderful care and attention from the doctors, nurses and care staff. He had a lovely spacious and comfortable room, delicious meals and every comfort possible.

We were able to visit every day and spend precious time together, and I would come away knowing that he was in good hands.

Helping Pete to breathe

Have you ever choked? I mean really choked and not been able to clear your airway? Struggled for breath?

Here’s Pete doing a spot of internet shopping whilst using the nebuliser as part of his daily routine. We were also provided with a cough assistor (a brutal piece of kit that pushes air into you and then sucks it out rapidly, simulating a cough).

Various drugs were introduced to control the secretions that Pete could no longer independently clear from his throat. A portable suction unit was brought and I was taught how to use and maintain it. The suction unit probably became our most heavily used piece of equipment.

We tend to take breathing for granted. I mean, it just happens… right? We don’t give it a second thought.

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"The Saint Michael's team goes to real lengths to get the details right."

Care in the details

Last summer we were keen to escape the confines of the house and get outside; not only as a family but also as a couple. Those few short excursions into town, for lunch at a cafe whilst the kids were at school, were precious.

If you look closely, you will see two access ramps in this photo. The one on the left is folded and tucked behind the plant pots. This one had been supplied quickly but was slightly too long and resulted in my having to push the wheelchair right into the flowerbed before I could make the turn towards the drive. Our wonderful specialist MND nurse, Kate, managed to beg, borrow or steal (I didn’t dare ask!) a shorter ramp which she turned up with in her car, out of the blue one day!

The Saint Michael’s team goes to real lengths to get the details right. We already had a ramp but that bit of fine-tuning made life easier, and saved me struggling to avoid the flower bed each time we ventured outside.

A peaceful death

I never referred to Pete’s illness as a battle, as some might have. That would suggest it was a fair fight, one that came with a chance (however slight) of victory. You don’t get that luxury with MND… it’s not a battle, but instead a prolonged and relentless attack from a brutal assailant.

One thing Pete was crystal clear about from the start, was that he wanted his death to be peaceful, and wanted to remain at home with the most precious things in his life: our children and me.

The hospice team made that happen, for which I shall always be grateful. Despite several hospital admissions during his illness, Kate, and her colleagues always worked whatever magic was needed each time, to bring him home as soon as it was safe to do so.

Sometimes this meant arranging for supported discharge or homecare, sometimes different aids and equipment…everything was coordinated for us.

This dedication meant Pete could spend his last Father’s Day at home, also his last Christmas, our wedding anniversary and his birthday.

The end, when it came, was gentle, peaceful and comfortable in his own surroundings.

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