Where would we be without Hospice

Where would we be without Hospice

As the Patron of our wonderful Hospice I would like to share an experience of Hospice from two different perspectives that a family recently shared with me ...

When Anne, a middle-aged mother and wife was told she had motor neuron disease and there was no hope of a cure, she said that "... my whole world disintegrated around me". All she remembers of the day was that her doctor told her she was dying and there was nothing he could do. "I felt so lonely and scared, and I didn't know what to do."

Her GP suggested she contact Hospice as soon as possible "I thought Hospice was all about death - but from the first time the community Nurse visited me and my family I realised how wrong I was. I have come to understand that Hospice is about helping me have the best quality of life possible while I am dying." Anne said that the greatest single benefit she received from contacting Hospice was learning she would never be alone in her journey towards her eventual death.

"These extraordinary people have spent time with me and my family checking my medications, and explaining what we can expect over the coming months. It has helped reduce the fear that was engulfing me as I now have a better idea of what is ahead and I also feel more in control knowing Hospice will be with me all the way."
The team at Hospice worked with Anne to ensure she had the right combination of medications to manage her symptoms. "I was in constant pain and very nauseous but the Hospice team helped sort all that and have given me a surprisingly good quality of life as my health deteriorates. They constantly monitor my symptoms and adjust my medication to try and combat those additional problems and pains as they arise."

"I am so grateful that I have been able to openly discuss my fears and concerns regarding not only my eventual death, but also my worries about how my family are going to cope during the coming months and after I have died. Hospice staff have been amazing, they are reassuring and so, so helpful."

To help Anne control her own situation and care, Hospice loaned her the equipment she needed to lighten the load. This included a wheelchair, which she is finding that she needs more and more when she goes out.
Anne's married daughter told us of her experience with Hospice from her perspective. While fear had been a big issue for Anne, coping with her Mum's deteriorating health was the big issue for her daughter Jan.

"While we had known she hadn't been well for a while, we were numb when Mum and dad told us that Mum had motor neuron disease - a terminal illness. My sisters and I didn't know what we were going to do or how we were all going to cope. The thought of Mum going into care was something we couldn't bear to think about. And how would dad cope without his childhood sweetheart to whom he has been married for 32 years?"

Jan said Hospice was invaluable in helping them realise that as a family they could actually care for their Mum at home. They knew it wouldn't be easy, but as with every patient, Hospice nurses gave them all the tools and advice needed to ensure that they could do the best for Anne. In addition they know that advice, and if needed a visit from the hospice nurse is available 24/7, which reduces their anxiety considerably.

"We have been shown how to administer medication, how to minimise the risk of Mum developing pressure sores, falls, and things like that. They also gave us practical advice on how to help Mum in and out of bed and even how to meet her changing nutritional needs. When Mum was having a bit of trouble breathing the Hospice Physiotherapist came and showed her relaxation exercises that helped so much. It's amazing how little things can made so much difference."

A key thing Hospice did, according to Jan, was encouraging the family to look at what they wanted to achieve over the months that they had left with their mother.

"We discussed what we, the whole family were going to have to face and the hurdles to overcome. The really great thing is that we were informed of our options and then we were given choices. We even sat down and organised Mum's funeral while she was still with us which Mum found therapeutic. It gave her a bit of control over her future. She has planned it right down to the music, which photos she wants shown, plus she added a couple of 'quirks' that we think will give those attending a reason to smile."

For Jan and all the family, watching their beloved Mum deteriorate has been one of the hardest things they have ever had to do. But Jan told us that caring for her mother has also been one of the most rewarding experiences of her life. "as a family, we have been given the time to be able to talk about the good old days, show Mum how much we love her and celebrate the times and life we have had."

Hospice has been there every step of the way for Anne, Jan, her sisters and of course her husband. "at one stage we were all totally exhausted trying to balance work, our own families and Mum's needs. Poor dad hadn't managed a good nights sleep for so long - so Hospice suggested that Mum be admitted into their In Patient Unit for a couple of nights to give us all a rest. dad was still able to stay with her while she was at Hospice, but he was able to leave the responsibility of care to the clinical staff and focus on being Mum's husband rather than her nurse and carer. Those few days gave us time to get our strength back and also gave Hospice the opportunity to monitor Mum's condition and talk to her and dad about what was happening."

Hospice arranged for everyone to talk to the Family Support team when things started to become overwhelming. They also received invaluable advice on how to help the youngest members of the extended family, and how to explain what was happening to their beloved Grandma.

"We just couldn't have done it without Hospice. We know that the next few months are only going to get more difficult, but as a family, we are able to get our strength knowing that we will have support from an amazing group of caring and highly skilled professionals."

Hospice is committed to making each day the best day possible for those who are terminally ill, and their families. At any given time, there are more than 150 families utilising Hospice services. Our care is provided at no cost to those in need.

Last year we cared for nearly 500 patients and their families. The In Patient Unit is taking more acutely unwell people and while patients seem to stay in the Unit an average of 7 days the support for families of patients being cared for at home is increasing. Our Family Support team doesn't only support families with grief counselling, but also provides a social worker and chaplaincy service.
If you would like to support Hospice North Shore click here.

Judy Bailey
Patron