Mum dying

[Crispsandwichfortea]

After a lengthy and awful hospital stay my mum is home. We know she is dying. GP says we are in the last week's of mum's life. She's very frail and being cared for in bed. She wants to die at home. She has said this multiple times.
Myself and 2 siblings are supporting her and have been for over a month now. Other sibling is overseas and estranged for many years. He won't be coming back to see or support mum.
We are beginning to struggle to support mum. I'm not sure how much longer we can continue. I feel awful. She desperately wanted to be at home and made us promise that she would not be going anywhere else. Now she doesn't always know who we are or where she is.
We could look at nursing homes. She has funding in place for that but we know she doesn't want that.
How do people manage this? Her care seems so disjointed and lacks any real empathy for her or us as a family who are struggling.

It sounds like your DM needs to be in a hospice or have hospice at home, if she is end of life and her doctor has told you that. In the first instance, I would call the GP and tell them that you can no longer cope and what do they recommend. Nursing someone at home who is a family member is generally not recommended, even if you are a nurse yourself. It's just too physically and emotionally draining and it can go on for weeks or months, so it's a huge commitment

You might find Mare Curie helpful. They have a good website and helpline.

I would be looking into nursing homes that cater for palliative care , as soon as you can. If her care team at home is disjointed , how quickly could they get to her to give pain relief , if she is in pain , or calming medications in the event of terminal distress. this could all result in an unwanted hospital admission .

In my experience both professionally and personally end of life care is so much better managed in a nursing home, who will cater for the whole family. the nurses are on hand to help with any symptoms of pain , distress and unpleasant chest sounds.

Try to put any guilt to one side , think of it as pre planning a peaceful pain free passing . Sending you all strength at this difficult time.

Thanks all. We have intermittent night support from the local hospice but it's very limited. She has carers four times a day and they are brilliant.
Mum is dying of old age basically so I've been told she doesn't really qualify for referral to specialist palliative care. I haven't pushed it as she has no symptoms apart from being restless and distressed at times. We can manage this with reassurance. She doesn't need medication for it at the moment. District nurses feel they are providing palliative support. I disagree but can't get past that.
I've asked for a GP review and been told someone will come out tomorrow morning.
I feel so on the verge of failing her. She looks so frail.

Dsis and I nursed DF at home with the GP and district nurses providing hospice at home and carers also coming twice a day. On the last day they brought a "just in case" kit with a locked syringe driver of pain relief and anti anxiety meds which helped to calm him. He was conscious until about an hour before he died.
We had 1 night of overnight cover by Marie Curie etc in 3 months - they rang up the morning after he died to finally offer another night but it was too late by then! The apparently didn't have enough staff for night cover in our county - in fact one person had to cover nights in 3 counties!

I'm four months in end of life, and yes, you do hit patches where you think how the hell am I doing this.

Have you spoken with your siblings about how you're feeling? Is it too much for a single person to cope with at a time?

It's very hard trying to keep a semblance of normal life going while nursing someone at the end, especially when it's so uncertain.

All the advice I can offer is to strap on your own oxygen mask first, get outside every day, take a brisk walk around the block, have a cathartic weep, talk to people and tell them what is ACTUALLY happening (don't bother sugar coating, this is for your benefit not theirs).

This is tough, I'm sure you've also had moments of small solace over the last month, I've used them as crumbs to keep going.

A month in all your adrenaline reserved will be well burnt off, so find a way to either replenish and recharge for a day
Or take every shortcut you can think of.

My two sisters and I did end of life care for my dad. There were three of us and we were exhausted. He was adamant he wanted to die at home. We had hospice at home care - they promised we would have help 24 hrs a day. They lied. It's one of the hardest things I've ever experienced and I feel I have ptsd from it

If it's too hard and your mum is not really conscious I would have a proper discussion with your sibling and do what is best for you. I nearly 2 years on struggle to remember the happy times with dad and when I think of him just remember the last 2 weeks and how he suffered. I feel his passing would have been so much easier and peaceful for him if he had been in a hospice. I feel so desperately sad. I wish you all the best.

Can i ask if your mum is still eating and drinking ? The swallow reflex is a good indicator to how long she may have?
if the swallow has gone then her care needs stepping up , Discuss this with her GP if you can.

Thank you all. I'm sorry to hear others have had similar experiences. I feel so traumatised by her hospital care. I don't think I will ever recover from how she and we were treated. To now be equally disregarded as we try to keep mum at home is just awful.
Mums swallow is variable so maybe there is a change. I will wait and see what the GP says tomorrow. I have my list of questions ready for her.