Hi
My name is Charlie and I have been caring for my terminally ill wife for the past 4 years , recently her condition has worsened with severe pain down her left arm and reduced mobility, she was able to do most things for herself up till now and even done the laundry and ironing as well as some light house work and the odd meal, this gave her a sense of contribution and independence, now she can’t do any of these things and is extremely upset emotionally as well as physically. As her husband of 42 years I am also upset to see her in so much distress and pain.
Hi Charlie … welcome to the forum … albeit in most distessing circumstances any carer ban be in.
What immediately springs to mind … CHC / NHS Continuing Healthcare and End of Life care.
What support are you getting ?
Links to both follow … CHC / NHS Continuing Healthcare thread colour coded to help anyone find sections :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998
CHC : WHAT IS IT / QUALIFICATION / ASSESSMENTS / VIDEO ( PROFESSOR LUKE CLEMENTS )
FAST TRACK NHS CONTINUING HEALTHCARE ( NOT JUST FOR END OF LIFE ! )
Both links are for support which , if not in place , are essential in your circumstances.
Others will be along to extend their welcomes , and provide some support and guidance.
oh how difficult for it to now jump all of a sudden so quickly, but maybe because you are reeling from this crisis, it’s making you think you have less time than you’ve got. My partner has MS, which isnt in theory terminal, although related things can be-falls with internal bleeding, septicaemia etc. When we have hit crises it has been very tough and worrying, but it is surprising how can be got round, managed, and somehow gain a different perspective with the right support. The shift for us has been realising we can’t manage everything on our own, we need help, and we have found that hard to adapt to, but it has really paid off and helped us feel a lot better. Or Perhaps made me feel a lot better initially, and that helped my partner? Does she have a nice specialist nurse you could contact? Have you had Care needs assessment by local authority? If so do ask for a review now things have changed, or ask for first one. Some GP practises have helpful advisors- we have a ‘care navigator’ but different areas have different things, and worth asking. Good GPs will make referrals… a good friend? As well of course as here… do write more…
Hi Charlie,
Welcome to the forum.
Is your wife’s consultant aware of this recent change? He/She should be helping you get the services you need.
Thanks for the replies, much appreciated, my wife quit chemo in January, after she developed shoulder pain which has since travelled down her arm and has become unbearable. We have tried many medicines including morphine , opioids and even Cannibis oil, therapies, acupuncture, chiropractor, physio, nothing seems to help, we now have a good doctor at the local hospice who has arranged for an MRI and started her on a new medicine. I am disappointed with her oncologist who, when we quit the chemo didn’t want to know. Andrena started with rectal cancer and went through an 11 hour operation to remove the tumour and most of her bowel. A year later they told us it had came back and spread to the lungs and there was no cure , she was then subject to various radiation treatments and chemos but with no improvement, the treatment was having no effect, 3 years later she had,had enough and stopped the chemo experiments. But now left with this terrible pain. Sorry for going on but I have not had much opportunity to share what is going on for us. I don’t mind the caring side and I can adapt and manage but watching your loved one in excruciating pain is heart breaking, it’s enough that she’s terminal but why the pain😢
Your welcome , Charlie.
Support … what precisely are you getting … CHC / NHS Continuing Healthcare at the very least ???
Hello Charlie
So sad to read your post. Im wondering if you can contact McMillan Nurses, who may be able to advise. Apparently hospice believe in helping termianal patients pain free a much as possible. Hospice can be care at home.
MacMillan Cancer Supprt ?
https://www.macmillan.org.uk/about-us/what-we-do
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The Macmillan Support Line can help with clinical, practical and financial information.
Please call us on 0808 808 00 00 (7 days a week, 8am-8pm).
( Can be contacted by email … online form to complete. )
Charlie,
When my mum was in terrible pain, the doctors knew that more medication would help reduce the pain, but would shorten her life.
I had Power of Attorney, both sorts. When the doctor rang me to discuss mum’s situation, I told her that my instructions were very clear, and very simple. Pain relief MUST be top priority, regardless of the consequences. Mum had bravely soldiered on through some incredibly difficult operations, but at 87, there was nothing more that could be done.
Mum passed away peacefully in her sleep less than two days after I spoke to the doctor. I miss my mum every day, but I do not regret my decision for a moment.
It is time for you to talk to the hospice staff, and have an open and honest discussion firstly with you about the additional pain options available, and then they can have the discussion with your wife, supported by you.
Is it better to live longer in pain, or have less time, pain free?
I write as someone widowed suddenly due to a heart attack.
I so agree with BB. Having been through a very long journey for different reasons, I am so relieved that my lovely husband passed peacefully and pain free. Its very recent ( funeral on Friday). I’ve missed him so much throughout, and he did suffer at times.
I do hope our thoughts and feelings are of some help to you as I can safely say the heartbreak you are going through is understood.
Once again , many thanks especially to BB and pet who have you’re own challenges and suffering. It was Macmillan who referred us to the hospice doctor , my wife attends him as an outpatient , I have an assessment on Wednesday with the Prince’s Royal trust for carers. Andrena has an MRI to get on Friday to check out this nerve pain. Hospice doc is great at fast tracking , has done more in 2 weeks than gp’s have done in 6 months and more than oncologist did in 2 years. Shouldn’t really have go at them , I know they do their best with what they have, just frustrated I guess. I just needed something like this forum to sound off. We will do whatever’s necessary to relieve this awful pain and with guidance from the hospice this should be possible. Grateful for this forum and everyone who contributes such a relief to find I am not the only one although I certainly would not wish this on anyone. X
It is terrible knowing a loved one is in pain. I remember phoning anyone I thought might help my mum. I often got best advice from specialist nurse at a charity- in my case Parkinson’s UK, who advised me what to say to GP and others, to get better service