Hi. I’ve been caring for my terminally ill mother for the last six weeks. She has bowel cancer which has spread to her liver.
I’d be grateful for advice from those caring for terminally ill relatives. I lost my dad to cancer, 21 years ago. I feel very much isolated and I worry that my life will never be the same. Love and best wishes to you all xx
Welcome. What support has been arranged for mum. Are you aware of NHS Continuing Healthcare. Where would you prefer mum to be cared for? At home or hospice?
Claiming Personal Independence Payment?
Sorted out Power of Attorney?
More later!
Mum had endometrial cancer which wasn’t treated. The palliative care nurse at the hospital offered mum hospice care at home or in hospice and we opted for hospice care in hospice. She was there for 17 days where,of course, nurses were available 24/7. That eased my burden considerably.
Hey, so sorry to hear about your Mum. Does your Mum have a Macmillan Nurse? They were a wealthy of help and support when my Aunt had terminal cancer. Do you also have a hospice nearby? Have you contacted them so see what support they can give? Both for you and for Mum. Doesn’t necessarily mean her being admitted. Our local one has hospice at home services and they also care for family member after their loved one has passed away to help them cope.
Best to luck. It really isn’t easy.
Two of our parents, and my brother, ended up with terminal cancer.
I know it’s incredibly difficult to ask, but do you know how long mum has left?
Days? Weeks? Months? Years?
Whilst it’s certainly not possible to give a precise date, doctors can tell you from their experience that it’s likely to be …
Only then can you make a proper plan for the future.
Even worse, but again vital, is to understand how the body gradually shuts down towards the end of life. The best place I’ve found was when I Googled “Signs of Dying” where you will find articles written by experts from the hospice movement. Tears rolled down my cheeks as I Googled those words, but it was so incredibly helpful to know and understand more.
There should be a lot of help available for mum, but sometimes it’s difficult to know who to ask. Forum members like me are happy to share our own experiences. You can then decide if any are appropriate for your mum’s situation.
Congratulations,greetings,you’re welcome
Hello Glowbo
Try contracting your local hospice. Theses days hospices offer many services such as support for relatives and ‘hospice at home schemes’. They are way more than just inpatient end of life care.
I am sorry you are in this sad situation and I am glad you found the forum. Many of us are long term carers with no end in sight and it is easy for us to forget how selfless and fulfilling caring for a loved one can be. I am sure you are doing your best for Mum, but it is important that you look after yourself too, physically, mentally, financially . Can you get a couple of hours a week where you can maintain friendships and a link with the outside world? It would do you the power of good
Kr
MrsA
Thank you - all of you.
I have hospice nurses coming in to sit overnight, a couple of times a week, which allows me to catch up on sleep.
My sister comes over on a Saturday and stays for 24 hours so I can go home and spend time with my husband.
The Macmillan nurse has been visiting once a fortnight, thus far.
Other than that, I’m here 24/7.
We don’t have a timescale but mam is in palliative care and she’s very frail.
This morning, she became frustrated with me - I was asking questions so I could work out what she needed and how I could best help her - and she said she wished I would just let her die. She said I was mean and that I was shouting at her. I’m really not but sometimes, I have to raise my voice when she’s not wearing her hearing aids. It’s hard not to take it personally, and I tried to explain to her that I’m trying my best … I just don’t want to make things any worse for her.
I’m feeling very isolated, right now. I think I may call Macmillan later, to see what they can suggest. Neither she nor I want her to have to go into a hospice, but I’m not sure I’m doing what’s best for her.
Have you ever actually been in a hospice? My dad spent his last week in our local hospice, and it was wonderful. Whatever dad needed was provided in seconds. He had his own room, overlooking a beautiful garden. Please find the time to look at your local hospice.
Mum started off in a single room in hospice but was later transferred to a nice big airy bay with two other ladies. There were more nurses coming and going and the ladies kept a watchful eye over her. Mum had difficulty reaching her call button and being in a bay with others meant she got attention when she needed it. It came to the point that care in hospice provided mum, 95, with the care and pain relief/oxygen she needed, and took the pressure off me to some degree.
Definitely speak to your Macmillan nurse. They have seen it all before and will be familiar with your worries.
Are there any friends/relative/neighbours who could come and sit with Mum for a short while so you can get out for a coffee/change of scene on a more regular basis? Might help with the feeling of isolation? I had some special times with my Aunt when she was terminally ill, so relatives/friends might relish a bit of time to spend with her alone?
Mum DOESN’T mean what she says. Please know that. You have doing and AMAZING job. it might be that the time has/will come when you can’t do it all any more. And there is no shame in that. Definitely try and find the time to have a look at the hospice as possible as it might be a better option than you think. But ultimately only you know how you and your family feel about this.
Mum does know what a wonderful daughter you are being. I am sure her frustration is at her situation rather than with you.
If I were in her shoes I would just be wanting to get it over and done with too 
Do speak the Macmillan/ hospice. They will understand that what you could cope with and do for a few weeks may not the same as you can do for several weeks or months, especially if you have left your home and hubby behind.
Whatever you do make no promises other than to ensure Mum gets what she needs. It’s a sad enough situation without adding guilt of broken (but totally unrealistic) promises into the mix
If you are dwelling on the future without her, yes your life will change but there was nothing you could do to stop her disease and each of us must pass in turn. We cannot keep loved ones for ever. You are doing great job right now, no one could ask for more.
Xx
MrsA