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Husband has advanced Alzheimer’s and I have been his sole carer, caring for him at home for five years. Now he has a diagnosis of a collapsed lung, terminal liver and stomach cancer and is very frail, not drinking or eating. Was admitted to hospital on Sunday with pain and nausea. There has been limited improvement in his condition after oxygen, antibiotics and IV fluids. Palliative Care Team said hospice not an option and I’m worried he’ll be discharged without adequate support at home. I don’t know who to speak to about this…I’ve been waiting for a call back from social services who have not been too helpful to date. Any advice would be welcome.
Dear jmack - So sorry to hear about what you and your husband are going through. It sounds like an incredibly difficult and exhausting time.
You may find it helpful to speak with the hospital discharge team, ward manager, or the hospital social worker as soon as possible and make it clear that you do not feel able to manage his care safely at home without significant support in place. A discharge should be planned around both your husband’s needs and your ability to continue caring.
You could ask for:
· A discharge planning meeting before any discharge takes place.
· An urgent social care assessment and carers assessment. Do I have to pay for social care? | Marie Curie
· Assessment by the community palliative care team.
· Information about fast-track NHS Continuing Healthcare funding, which can sometimes be used to arrange urgent end-of-life care. NHS continuing healthcare | Marie Curie
· Details of what support would be available at home, including carers’ visits, equipment, district nurses and out-of-hours support.
For you to know Marie Curie have a nursing service which may be available in your local area - Hospice care at home and home nursing | Marie Curie. I have included information on how referrals are made - How to refer patients if you’re a GP, district nurse, etc. | Marie Curie
If social services have not returned your calls, it may be worth calling once more or you could speak to the hospital team and ask them to make an urgent referral on your behalf, as they can often escalate this more quickly.
Please don’t feel you have to agree to a discharge if you genuinely believe the care package proposed is unsafe or inadequate.
I hope some of our community members who have been through similar situations will also share their experiences and suggestions.
We also have a Support Line Marie Curie Support Line | Helpline | Marie Curie should you wish to discuss any of these points further.
Sending you strength at this very worrying time. 
Thank you for getting in touch with the team, jmack.
I’m sorry to read about your husband’s diagnosis and all you’re going through.
I hope my colleague’s response above has been helpful. I also wanted to let you know that we have an Information and Support Nurse available to speak to on our Support Line if this would be helpful. They won’t have access to medical records but can certainly talk about symptoms and management.
Just so you know, we’ve also edited your post to remove your postcode, as we don’t allow identifiable information on the Online Community. If you’d like to find out what support is available in your area, you’re welcome to get in touch with our Support Line on 0800 090 2309 or via email at support@mariecurie.org.uk.
Take good care
TVM. Everything is in place now and I am confident I now have teh support. The issue has been lack of clear communication and I do hope that in the future people in my position are given more clear and timely information.
Hi, my mum had a massive stroke 3 1/2 years ago. She is bed bound & unable to talk. She also has COPD & her oxygen rate is usually around 83. For the past month, she has had periods were she has lost her appetite so hasn’t eaten for over 7 days & has had reduced urination. The tips of her fingers are now a bluish colour. Her face & lips are very patchy & blotchy also & now her oxygen level has gone to around 70. She will then ‘pick up’ & eat a little for a couple of days, then go back to not eating & not looking good. She has signed with our GP to say she will not go to hospital if advised to. She also wont wear her oxygen mask. Is she in the early stages of death? Your time frames say days or hours left however, she’s been this way for around a month. Can you please help. I don know what to expect. Thank you