withdrawing from friends and family

Hi bexx.

Im sorry to read about what you are going through. Its the most unimagineable journey that is impossible to really understand unless you have experience.

Sadly, yes i believe this withdrawal is qute normal towards the end of life. My husband went in bouts in the last 6 weeks of his life ( he died in October) . He took to his bed, so we got the hospital bed downstairs and I selpt on the settee. I wanted to get him out in a wheelchair even just into the garden, but no, he didnt want to. He carried on seeing people until about 2 weeks before, I had to beg his daughter to come down because he wanted to see her. She did, just 2 weeks before he died. The only time he left his bed was to suffle to the toilet which he was able to do until a week before ge died.

This time is so hard to navigate but for your own sanity and mental health, you may need to tell him that you are doing something for you, whether thats a coffee with a friend, or going for a walk. For me, it was choir, I knew he was ok for 2 hours, he could sleep and he knew how to change channel on tv or play games on his phone. He knew how to phone me if needed.  I would leave the commode next to the bed just in case, with water and a snack( which he never ate but i wanted it to be there just in case) and was always ok( as much as that was possible ie there were no emergencies). It heloed me just step away and mistly he slept. In the last 2 weeks he needed me more so I didnt go out for more than popping to my neighbour. Can you take that time out? Or can a friend come to you and maybe sit in another room or even outside now the spring is here? 

Please see what hospice support is available, they often support carers, they were a lifeline for me and looking back now, they supported me more than him really, and still do. They may also help with him, even if he isnt keen.

A nurse told me this when I was wondering how long he had. It was remarkably accurate for him, although Im sure its diffetent for everyone, but it may give you an idea.

If you see changes monthly, then you have months. If you see changes weekly, you have weeks and if you see changes daily, you have days. It helped me as I think I was too scared to ask. 

So for my husband losing mobility was a big change. Then he virtually stopped eating. The he became incontinent. Then he needed more meds to function at all. Then he started sleeping a lot more. Then he couldnt walk at all. By then he was also halluninating and getting more and more confused. Finally, he couldnt really talk, just mumble, mostly not making sense, before slipping into an unconscious state for the last 36 hours or so. That deterioration was over about 6 weeks. 

Of course there is no rule book, we were told he could go downhill very quickly and he did.

Do chat here, it helps and I wish Id come here in those last weeks.

Dear Malengwa,

Thank you so much for your reply and for sharing the details of how it was for you and your husband in his final weeks. I really appreciate your openness - even though I know no two cases are the same, there is so little discussion about end of life generally and it is so hard to know what to expect and what to do. 

I've finally managed to persuade my husband to begin a discussion about carers with the hospice, I hope this will work out soon as I do definitely need a break sometimes.

I relate so much to a lot of what you say. I've also tried to persuade my husband to go out to the park in a wheelchair (we don't have a garden as we live in a block of flats) but he doesn't want to. He can still get out of bed to go to the toilet or occasionally to sit in a chair for a little while but I can see it's getting harder and harder for him. I relate to what you said about your choir too - for me it is a yoga class if I can get to it, but yes not without a lot of preparation first, leaving everything possible within his reach by the bed including the snack that doesn't get eaten. All these small details, the ways we care or try to, break one's heart a little more each day.

I hope life has not been too rough for you since your husband's passing. It sounds like you loved him deeply and I hope you have family and friends who are caring for you as you adjust and grieve. And I hope you are still singing with your choir.