Patients, family and supporters share their experiences of our care and their support
01 November 2014
Chris and Brian had known each other since 1968 and started
dating in 1970. Brian took great pleasure in telling people they met as result
of an advert. Not a dating advert I hasten to add but in fact as a result of
Brian advertising for a vacancy within his company. They only worked together
for a short period before Chris got poached by another part of the company but
romance blossomed and in 1977 they married.
They chose not to have children but
instead travelled together and enjoyed seeing the world. Their lives were
committed to one another and their many holidays.
Brian had lost his parents some time earlier but in late
2013, Chris sadly lost her mum and dad in short succession. It was shortly
after this in May 2014, having had difficulty walking Brian was diagnosed with
Motor Neurone Disease.
Brian was confident this was a mistake and that his
illness could be fought, realisation struck and Brian told Chris ‘I want to
die, you wouldn’t allow a dog to lie like this.’ Their family dog Candy had been
unwell sometime before and looking at the sadness in her eyes, they decided they
couldn’t allow her to suffer and took the brave and difficult decision to bring
things to an end.’ Brian wished he could make the same arrangements and was
desperate for Chris, his loving wife to get on with her own life. He felt he was becoming a burden and as the
illness took greater hold his movement become more and more restricted.
Chris and Brian have both resided in the Cambridge area for
some years and felt their meeting had been fate, a collection of circumstances brought
them together and at this challenging time they knew they had the strength to
get through this together. They had visited the hospice once before to visit a
friend but did not initially think of the hospice as somewhere which could
offer the care needed.
Lorraine, a consultant from the hospice visited Brian and
Chris in their home and talked through the services available at the hospice. Following
this Kate, a member of the Specialist Palliative Care Team met with them both
and continued to decide upon options and care programmes available.
Brian was reluctant to go to hospital,
preferring to stay in his own home or if needed be cared for at the hospice and
the staff planned for this. Brian did not fear death, he decided he did not
wish to be resuscitated or helped with feeding as his health deteriorated and
completed all the forms necessary.
As time passed his health at home continued to deteriorate
and whilst carers visited morning and night, Chris felt she couldn’t cope.
Brian was becoming difficult to move and meeting his personal needs
increasingly more challenging.
The occupational therapist would visit but his
illness was taking hold so rapidly it was difficult to keep his care programme
up to date. Brian felt a burden and
started to refuse to drink and eat and on Thursday 17 July 2014 at 6am he was
admitted to hospital. Whilst at the hospital they managed to stabilise his
condition and work on the internal problems which Brian was now encountering.
Brian was asked if he wanted a bed at the Arthur Rank
Hospice and although we did not know what his length of stay would be, Brian
accepted, he was admitted the following Tuesday 22nd July 2014.
His care programme was monitored regularly and the spasms in
his legs were managed with medication and this became under control. Having
addressed some of the complications of his condition, discussions took place to
see if Brian could return home or whether a nursing home would be an
alternative option. Cilla, the social worker helped support Brian and Chris
through the process and viewing of the homes commenced. The therapy team also
visited Chris and Brian’s home to see if arrangements to return home would be
possible. The house was assessed and applications were submitted for funding to
help with the cost of this.
It was at this time Chris bought her concerns about caring
for Brian at home to the attention of one of the volunteers. The volunteer
encouraged Chris to speak with consultant, Tabitha. Tabitha talked through
Chris’s worries and assured Chris that they would continue to treat Brian on
day by day basis as a continual assessment and alterations of the care
programme were required as a result of Brian’s developing needs.
Brian wasn’t religious, but spoke with Keith, Hospice
Chaplain and Chris found Linda from the hospice chaplaincy service beneficial.
They offered support and helped with some of the decisions which Brian needed
to make and helped Chris to start to plan for the time ahead. We spent a lot of
time together and this was a great help.
Brian enjoyed eating out and always enjoyed getting dressed
up for the Cruise ship meals but now even his ability to eat and enjoy food had
been taken from him. This was quickly followed by his breathing becoming
strained and it was now proving difficult to communicate.
Chris recalls Brian using his energy to ask ‘Why am I being
left out? You’re choosing food for me, I want to choose.’ Sadly for Brian, the
meals which were now safe to eat were becoming more limited but the nurses and
healthcare assistants helped wherever possible. It was from this point medication
was increased and Chris found Brian begin to slowly drift.
For Brian and I the hospice offered us a place of safety.
The nursing levels are at an excellent level, the staff are brilliant and the
doctors always accessible. I had piece of mind and I too, was being cared for.
Brian was pleased I was being looked after, it was important for him to know I
was eating, being cared for and one of the most important services for me was
the transport. I had broken a small bone whilst lifting Brian at home which
resulted in me hobbling about on walking sticks and prevented me from driving
but Shelagh from the charity quickly arranged for a volunteer driver, often
Alan, to pick me up. On a daily basis, I would visit from about 10.30am in the
morning until 8pm in the evening. Brian was in the hospice for seven weeks and
this gave us both much needed and precious time together without the stress of
Brian and I made new friends, befriended other patients and
their families and came across old acquaintances. Everyone is made to feel so
welcome and everyone, staff, volunteers, relatives and visitors alike have time
to sit and chat. You would never be allowed that number of visitors elsewhere.
Every person I spoke with was really positive. People would often say ‘I didn’t
know it was like this.’ People kept saying ‘How brilliant it is here, how
nothing is too much trouble.’ One gentleman who had just lost his mum said ‘I
really do feel the staff here really care, they don’t just say it!’ and I got
that feeling too.
Brian and I would sit in the hospice gardens; he loved
nature and was so content watching the birds. Patients and visitors alike enjoy
sitting there, they are peaceful areas, but there is also a lovely buzz through
the hospice which is really nice to hear too.
The hospice look after everyone, they were so many services
I didn’t even know they offered. One therapist, Marion noticed my swollen feet
and offered me a massage.
For Brian the nursing support meant Brian was kept comfortable
and his needs were continually assessed, at home I couldn’t have coped. I found
caring for Brian a worry, I rarely slept as he needed to be turned often and
legs needed to be massaged and moved. It was such a weight off both of our
Brian passed away seven weeks after being admitted to the
hospice, on Sunday 7th September 2014 and Brian’s funeral was held
on the 25th September 2014. The hospice is not all about the end I
met many people who were being cared for at the hospice some of which are now
back at home enjoying life again for whatever time they have.
"They basically just looked after her minute by minute for those final two nights. It was incredible. [...] It was very much as if we were being cared for as a couple.” Michael Barnes' wife Svitlana received care from our Hospice at Home team in February 2019. ... click for more
“Having special time together with Sam in those last few weeks as a wife, but also as a Mum - and for him being able to be a Dad – was really important. Hospice at Home allowed us to be family together, the four of us, at the end.” Xanthe’s husband Sam received care from our Hospice at Home team in 2018. ... click for more
Angela McGrath, Mum of Daniel shares her story and inspiration for walking to Liverpool in memory of her son ... click for more
“I felt like somebody who belonged there and was part of the family”. Kirsty Bradbrook tells us about her husband Mike’s care at Arthur Rank Hospice at the start of 2017... click for more
Jennifer Cater shares her story of the loss of her beautiful daughter Debra Jane Hodgson... click for more
We had the pleasure of chatting to Claire, who has taken part in Bridge the Gap walk since its first year in 2001 as part of the well known group, the ‘Sunflower Girls’.... click for more
Sally shares her touching and powerful story of her family and their relationship with the Hospice... click for more
I will never forget the moment that my husband Hugh broke the news that he had been diagnosed with prostate cancer. The thoughts and emotions that explode in those few seconds are indescribable. The enormity of the implications, the effect ... click for more
Brenda & Stuart Evans reflect on Bridge the Gap
A couple who have ‘Bridged the Gap’ for many years.... click for more
Brenda & Stuart Evans reflect on Bridge the Gap
Kevin very kindly met with Donna Talbot in August this year and shared his touching story of the loss of Mary, his wife.... click for more
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