There are often members of the Community sharing personal experiences with accessing supportive care from a hospice. Getting support from a hospice may not be something you have considered before as a lot of people think it's only end of life care that is provided. Hospices are there to help those with a terminal illness or life limiting condition and this blog is sharing some useful information about hospice and respite support. Stay and read more if you want to read the personal experiences of our Community members.
There’s so much support that a hospice can offer, and it can be useful to know how they can support you and your loved ones for when specialist palliative care is needed. Usually people access help from a hospice if a someone needs specialist end of life care, however respite care and continued palliative support can be offered.
“If you thought hospices are only about caring for those in god’s waiting room, you’re missing the more important bit of their role - pain control especially…Don’t be shy to ask your GP for referrals to palliative care teams, they’re practically miracle workers.”
Community member, Anal cancer forum
“They can offer you a lot of support and it's far more than just end-of-life care. Do take advantage of anything on offer. Where I live, they also have a Big C centre at the local hospital that also offers a lot of extras like counselling and advice. You've both a lot on your plate so take whatever you can get to lighten the load.”
Community member, Living with incurable cancer forum
What is a hospice?
A hospice is a place where people can go for a short time to help get difficult to manage symptoms under control. Your health care team or palliative care nurse will be able to talk to you about the local hospice and what to expect there.
“My MacMillan nurse at the hospital put me in touch with the palliative care team at the hospice where my husband or kids or myself can call 24/7 for any help we may need. You can ask the oncologist to refer you or your cancer care nurse.”
Community member, Secondary bone cancer forum
“We have just been told that there are no more treatment options and are now trying to decide if using a hospice in the final weeks is a good option or not. My husband doesn't want to be alone and would prefer to be at home until the end but I am scared that he will be in pain and I won't be able to help him and I don't want the kids to see him like that. Also finding him dead or dealing with him dying is not something I feel at all prepared for.”
Community member, Carer’s only forum
There’s lots of information about hospice and respite care on the Macmillan website.
Hospice UK also have lots of helpful information on their website regarding hospice care, as well as having an online tool which allows you to search for hospice care services in your area.
What support does a Hospice offer?
Each hospice will have different activities and supportive care options available to help you and your family. They are usually provided by special care providers such as occupational therapists, physiotherapists and other palliative care services.
It’s a good idea to contact your local hospice to find out how they can support you. Here are some of the experience’s members have had in their local hospices.
“Just started going to a hospice in the day to do art with an art psychotherapist and had my first visit with her which was good.”
Community member, Mantle cell lymphoma forum
“A hospice can offer loads of different things, they do pain management if in pain, and are better than hospitals, they do counselling, complementary therapies, is many different things, massage, reiki. Hubby and I had reiki, it was so relaxing and made you feel so much better. There’s also acupuncture, all different things. Counselling for both if needed, worth looking into, you can phone, or GP can recommend you, my oncologist said I should go, hubby and I where both taken back. I can only say what a wonderful place, never been in one before, and when my hubby's time came, that is where he wanted to go. I would say it is worth a try and they can help in so many ways.”
Community member, Living with incurable cancer forum
Hospices often have counsellors which you can speak to as it can help to talk to a professional about what you are going through. When you need additonal emotional support, you can talk to one of our cancer support specialists on the Macmillan Support Line. They can offer a listening ear and look into the support available.
Macmillan are currently working with Bupa, to offer free counselling sessions to people living with cancer. The Support Line teams will be able to put a referral in place for you so do get in touch if you need this support.
There’s more information babout our partnership with Bupa on the Macmillan website and in one of our recent Community news blogs here. If you have more questions or would like to talk to someone, you can call our Support Line teams for free on 0808 808 00 00, 7 days a week, 8am to 8pm.
What is respite care and how can it help?
Some hospices offer respite care. This means patients can go into a hospice for a short time to give your carer a break. It can often be a chance for you to have some time away from your everyday surroundings and potentially connect with people who are in a similar situation to you in person.
Your palliative care team can tell you what is available at your local hospice.
“Hope you get some respite at the hospice, they are much calmer than the hospitals. Try using it as a mini brake, they also are very good listeners. Tell them you'd be more at ease if your cat was with you. Keep posting, let us know what the hospice is like.”
Community member, Living with incurable cancer forum
A lot of people who are caring for a loved one would like to honour a their wishes and provide care at home. There is a lot to consider when caring for someone at home as you need to make sure you have the right
Caring for someone at home can have an impact on your physical and emotional wellbeing so it’s important that you reach out for support when you need it. Respite care can help your wellbeing as you have peace of mind that your family member or friend is being looked after by professionals whilst you take a break.
“My Dad gradually lost the use of his legs and we ended up having a hospital bed delivered and nurses to help with personal care as it was just too much for Mum and became dangerous in terms of lifting and moving him. Have you explored hospice care? Even just for some respite? At the end my Dad was sleeping a lot and experienced seizures and eventually lost his appetite and went into a coma like state. By then we had him in a hospice so they could make him as comfortable as possible and administer drugs to keep him calm as he did become quite agitated. You will need a referral from your GP for hospice care. Don’t be afraid to say you can’t cope or you feel it’s becoming impossible to keep him safe.”
Community member, Glioblastoma multiforme brain tumour forum
“The hospital told us she would need care 4 times a day, but this would not be available for weeks so in order to have a little bit of Christmas with her and so we could take my 6 year old to see her they suggested the local Hospice. I knew this went against what my mum had wanted as she always wanted to be home so my stepdad and I both felt bad agreeing. The hospice is a nice place calmer than a hospital, less clinical and the staff are very kind…. I wish we could get her home, but myself and my step dad just wouldn’t be able to cope without carers. Even with carers I don’t know if she’d have enough care.”
Community member, Family and friends forum
“I am feeling weak and like I will burst and cry and rail and stomp and panic and just generally not be the upbeat person and kind considerate caring wife and partner I need and want to be for him now. I have been working with the palliative nurses, oncology team and anybody else who will listen to do just this… if he's stable- then the hospice is a good thing in my eyes, a necessary and hopeful thing for him to get some quality of life.”
Community member, Carer’s only forum
Other Support resources
Have you visited a hospice for support recently? I’m sure members of the Community would find it helpful to hear about your personal experiences in the comment box below.
