What do I do?

Hi DVE1958, im sorry to read you are at this point with your wife. I found my husband becoming incontinent obe of the hardest things, as he did also. He died in October and went downhill quite quickly in his last 6 weeks.

Please contact the hospice if you havent already. They often support carers as well, and I did that for me and that was our way in when my husband wasnt keen. They were so grwat that he quickly got used to the idea that helping him was helping me. Is this a conversation you can have? My husband wanted to die at home and even though I was scared, he got his wish, despite it being so hard. We had hospice at home in those last days.

Also are you in good contact with the GP, or district nurses? 

You can ask for a care needs assessment from your council but they may not be fast enough. If she has saving she would have to pay for care so you could start making contact with agencies. We were in the process of doing this when Tony took a turn for the worst. The hospice kicked in and ge died a few days later. 

Please also get support from anyone around you, family, friends, neighbours they can make a big difference too.

Chatting here helps you feel less alone, as its exhausting and painful.

My advice is speak to your GP, they might be able to help with getting you assistance. Also speak with your Paillitive care nurse and see what their advice is or the district nurse. They will help you. Reach out. 

All i can say is that you've got this far, and that incredible. No one prepares you for this, for the trauma, the sites and sounds you won't forget, the suffering of someone you love. Good luck, take one hour at a time. 

Sorry to hear about your wife. If you are in contact or have ever been in touch with the local specialist palliative care team give them a call and ask for a palliative assessment. If not contact your wife’s GP practice and ask for a home visit to review her care/ treatment plan asap. The GP practice should respond on the same day you call them. If your wife has district nurses/community nurses contact them to say things have drastically changed and you need urgent help to care for your wife. It is a distressing time for you both. the  more services you contact and the more urgent you say it is means you have a better chance of getting the right help. 

Hi DVE1958, please do take everyone's advice on here about getting in touch urgently with the different agencies. You clearly need extra support: nobody should be left alone to struggle through in these circumstances. My Mum has a terminal diagnosis and I've found the local hospice nurses to be the most supportive of all.

And keep having that 'difficult' conversation with your wife about the possibility of going into a hospice. Since Mum was diagnosed in January, I was initially determined to look after her at home, with the help of carers. That's what she wanted too. On Wednesday, however, she had the trauma of a fall and is currently in hospital. We've since discussed everything again and she's accepted that she may be safer being looked after by experts on a round-the-clock basis. So I've been looking at nursing homes for when she's discharged. It's not what I would have wanted but at the same time I've had to hold my hands up and say I know when I'm defeated. 

This is not a smooth journey - there are times when things feel calmer and more under control, and then a new crisis emerges. It's better that you have professional support in place. Take everything that's offered and don't forget your own health too. I wish you all the best.

Update. Paliutive nurses have been a great help. My wife at home we tried to get herto a hospice but her heart slowed soshe is at home. 

Now I sit with her mum and brother and we wait for then.

Thanks for all your kind words.

In glad you connected with the palliative care team and they are supporting you. 

These hours, days or weeks are so hard to navigate, Im glad you are not alone. 

Big hugs to you x