“It was with some trepidation we entered Hospice, but it was not what we expected. From the moment you step inside the building you are met with smiles and a warm welcome. The sense of calm is very reassuring.”
“When Carey was diagnosed with terminal cancer our Hospice journey started. Firstly with palliative care support from hospice nurse at home. Regular phone calls and at home visits gave us support and put us in touch with the various help which could be sourced.
As Carey’s cancer developed into late stages, it was pain control which he needed most help with. On the 9th December 2022 Carey was transferred from Nobles to Hospice to manage his deteriorating health. Once transferred he started to pick up strength and regained life with pain controlled. This was not an easy journey as a lot of adjustment to the drugs were needed.
It was with some trepidation we entered Hospice, but it was not what we expected. From the moment you step inside the building you are met with smiles and a warm welcome. The sense of calm is very reassuring.
We found the room set up that the equipment is mostly concealed and resembles a home room as close as possible, with large TV and en-suite private shower room. The quiet and peacefulness is amazing. The restfulness was the start of Carey’s recuperation. The consideration to the patient feeling at ease in a bedroom is so welcome, having only been in a hospital ward, Hospice couldn’t been any further from Nobles. For family and visitors the comfort of the chairs has been again thought of. The reclining chairs so comfortable for both patient and visitor to use.
As Carey’s stay was looking to be a long few weeks and my visiting time was long hours every day the staff brought in the cuddle bed. This I believe was funded by a donation from a family who had previously sought help at Hospice. We fortunately were the first to be given the opportunity to try it out. What a lovely idea and thanks to the family. We were able to sit side by side, watch TV together and also rest and cuddle up together. I truly believe that the fact I was able to hold Carey on two specific occasions when he gave grave concern to the staff, it was the ability to lie together and hold him that gave him strength to pull through.
We were given the first opportunity to use the suite for its purpose as a step down arrangement. We had spent around 6 weeks in the bedroom arrangement with myself sleeping on many occasions in our motorhome on site, leaving the 2 family rooms available for others. Carey was showing excellent progress in his rehabilitation and was given consideration to being allowed home again. Feeling rather apprehensive of taking on full time care of Carey with his increased needs the staff suggested time in the suite. This arrangement was very much welcomed. I began to take on the needs and medication for Carey and slept in the bedroom with him whilst in the daytime we used the kitchen and living area. This was as close to a home environment as could be expected, a private apartment. With the staff still being in the building should I need the support, which I did need on occasion. Thanks to the suite step down I gained confidence to eventually take Carey home again.
The support from the staff is without question the very best. Not just for the patient but a holistic approach inclusive of all family members. They understand the cancer effects everyone around the patient. From doctor’s reports and results the news can be difficult to take in, but staff support you from a group chat, a 1:1, a cuppa, a hug, the staff seem to know just what is needed. A trip out in a wheel chair to get fresh air around the lovely kept garden, to round the Millennium Park. Additional support for both family and patients by way of a massage was a lovely treatment and relaxed tense muscles. We also attended the weekly meetings for patients and families, a break to the everyday routine, a varied programme, where we met other people working through their experiences.
Pastoral visits were well received. Carey found volunteer Steve DeHaven such a very interesting person to talk to, he had long conversations with him and he held him highly for what he has given over his varied life, what a man. If you don’t know him get to!
We couldn’t pass this opportunity to say how much respect we hold for all the staff. Nursing, doctors, cleaning, maintenance, admin, volunteers and catering, everyone inclusive. The smiles and sometimes some shared tears, the attention and the love. The discretion the staff show for each patient is so respectful.
Whilst Carey mostly worked alone, I however did work in an office with many staff. I expressed whilst in hospice to Emma that I have never experienced a group of staff work so well together. That is a true reflection of a happy workforce. It must take staff with special qualities to give comfort to patients whether going home or on end of life, and still smile so much. They truly appear to enjoy the work and so often were there even on the days off. Dedication or what. Love them.
Towards the end of Carey’s life, once we had returned home, he was very happy to be back. However having come out with a syringe driver, I was not allowed to administer those drugs arrangements had to be put in place for daily visits by district nurse. This worked very well. However the driver did give a number of problems. From alarm reading occlusion, to failing completely. Hospice at home team were always at the end of the line to advise or jump in a vehicle to visit.
Carey passed away peacefully at home 5th March 2023 and during that day staff had been attending to him making sure he was comfortable, turning him and freshening. On receiving my notification phone call they immediately came to him. They also spoke so kindly to me and Stuart (our son) as to what to do next. Carey was not taken away until the next day as I wanted one more evening with him.
Giving Back to Hospice
Prior to Carey’s admission to Hospice I had started in 2022 sewing for Hospice. Making patients syringe drivers bags and catheter bags, so I had already introduced myself to a couple of the staff. Whilst in the Santon Suite I also make some repairs to items and came up with a fund raising idea…
As time allowed in the suite I made use of the quiet time to make a range of fabric covers for tissues. This was I thought a nice idea as many times tissues are needed. A basket of various bright fabric sets were placed initially at the Tevir reception and then at the Elaine’s cafe. These seem to have proven popular and a donation box has so far raised £120.00. Nominal amount but every pound helps. I continue to support this by visiting each week to top up the baskets.
We also asked for donations to Hospice on the day of Carey’s funeral. We could not have chosen any better charity.
Finally, as part of a craft group, I have arranged for a number of handmade large blankets to be donated to the patients to give them comfort. These to go home with the patient or families. I gave one such blanket to volunteer Steve DeHaven for his wife who is currently fighting cancer and received a lovely thank you card.
Our experience of Hospice was one of love and compassion. We both were very much changed people coming home.
For my part I will continue to support Hospice Isle of Man in any way I feel I can.