A good day

WW123 -  thinking of you today. It must be hard for you to bear witness to his situation and for him to be in it. One foot in front of another..... take care of eachother. 

NellieJ,

For all my life, I always said I wanted to die at home probably mostly because that was my parent's wishes as well. So when my mother was in her final weeks of life last year, we worked to honor her wishes. We did. She died peacefully one morning with me by her side holding her hand and as the funeral home were putting her body in the hearse to take away, we stood outside and watched the most spectacular sunrise I had seen in a long time. 

But it really played a toll on the family. I spent nearly three weeks, all day ever day, with my dad and brother taking care of my mother as she lost her ability to move her body. The home hospice nurses were great, but they weren't there all day every day like we were. Later the day my mother died, we went to the funeral home to plan things and then went back home. I was so exhausted emotionally and physically that I laid down and wanted to sleep for the next few days but with all the people calling, stopping by, etc, it took me weeks to catch up to where I felt normal at least physically again. Not only did it effect me, but it effected my wife, my kids and those around me. 

This is a long way of saying, I have changed my desire to die at home and want my loved ones to let me go in a hospice house setting where they can still go home and not have to be with me all day every day. It was a extremely physically demanding experience and I don't wish to go through it again anytime soon. 

Best wishes

lthenderson, Thank you for this, I found it really  helpful. I think the decision (when the time comes) to aim for end days in a hospice is something that we have both arrived at having been thinking it backwards and forwards. Your experience with your mother is very powerful and having been through that and writing about it has really helped me view him going to a hospice is part of me being able to still function and have space to come and go.

Initially I said that I wanted him at home because of my fear about not being  with him. Now I know that the dogs will be welcome at the hospice I am easier in my mind. Our house is tiny, a two up, one down terrace with  a cant  swing here kitchen and front door straight onto the pavement. The previous idea of having him at home with a bed downstairs if he goes off his feet seems tricky. I could imagine it feeling crowded and then visitors on top.

So you have really helped me see that I can be better for him and his boys if I can retreat home and he can relax. I also see that this is probably part of me having to come to terms with him dying. Like a zip coming apart from the bottom, we have to become separated and will go separate ways.

And today it all seems a little way in the future - another good day - they have given him a 'bump up' with steroids and he's been out gallivanting around on the motorbike yesterday for an hour with a Morphine chaser afterwards.  

I  can take the good times better knowing the planning is in place for when the end line gets nearer.  Every day where he can feel the sun on his face is a bonus and today he sat watching a dragonfly. For him, that is making the most of every moment. I remain in awe. 

Thank you again for posting your experience, you may never know how much it means to me, but it has changed my thinking and given me a big dose of reassurance and permission to feel OK about it.   Also he was always a sucker for a Premier Inn hotel and the hospice rooms are much more spacious than home, with staff that know what they are doing.  

Wishing others enough of A Good Day whatever that looks like.