This morning several people from hospice care arrived to describe the services they offer. We begin by keeping JB at home as long as possible which means that staff and nurses will make regular visits during the week to assess JB's status, administer drugs and pain meds and try to make him as comfortable as possible. Right now I am struggling with the idea of keeping him at home versus a hospice location where there would be more round the clock service. JB's strong desire is to remain at home of course, but the strain of making sure there is someone there around the clock is going to be difficult to manage. JB's family and friends are making a valiant effort to provide that company, but of course there are constraints on everyone schedule to be able to break away to fill the voids when I cannot be home. My work has been flexible and I do have some time saved up to try to be around.
Some of the fears we have are how well JB can manage some of the routine activities we all take for granted. His fatigue induced by the cancer and drugs makes him very unsteady. Getting up and down stairs is nearly impossible on his own. He has been making it to the bathroom, but even that process scares us as he could easily loose his balance along the way and fall. We think about putting a bed down stairs, but JB's strong will probably will induce him to try to continue to go off on his own and the down stairs is just as unsafe for him alone as the upstairs.
For now we will access how well the home hospice situation works along with the scheduling of family and friends to spend time at the house and keep him company. We are teaching them the drugs he might need and how to administer the nutrition through his feeding tube.
The process of taking care of a dying person is much more difficult than I could have ever imagined. Just having the hospice people over describing what they could do took over 3 hours and I ended up with a headache from all of the issues that we need to take care of. I believe I have had an optimistic view of what home hospice could provide us, but they are limited with time and resources. They talked about their services such as music therapy, massage and bathing along with the nurses visits. The nurse can visit several times a week and will only stay an hour to check on him. The massage can be done once or twice a month, same story with the music therapy. I was thinking a few times a week would be better, as it is possible JB is not around more than a month and thus would barely get to sample some of the hospice services. Everything is discussed in terms of a few times a month and that seems minimal to me looking at the time that JB has left.
The nurse called later today to tell me about some prescriptions that will arrive and I asked her in her opinion dealing with terminal patients what she thought about JB's outlook. Of course she mentioned there is no way to tell, but a few weeks perhaps. JB's fortitude is amazing and we cannot discount him being strong and being with us much longer. My sadness wells with the thoughts of his days being spent as they currently are, in pain and sleeping most of the day...barely lucid. The nurse said often times her patients do sleep much of the time, that appears to be par for the course with dying people. I simply wish I could spend the waning days of JB's life with the man I have spent the last 10 years with, not the shell that has appeared these last few weeks. Does he realize I am still with him through his dreamy haze? I know he does not want to be alone, but the moments he does come into awareness will anyone be there for him to be comforted by, before he goes back to sleep? I believe these thoughts torment all of us who love him so much, knowing we cannot be there 24/7 to fill the few moments he is aware when he could use us the most.
10 comments:
Very tough times...thank you for your openness..much love from out here in cold Wisconsin
Jason,
I'm amazed at your compassion and respect for JB, and your ability to put that ahead of what your expectations may have been for this time. While it must be difficult to ever know that you're doing enough, be assured he's a very fortunate man.
Tanya Beck (Morgon Mae's Friend)
I wanted to thank you too for being so open in these difficult times , even though I don´t know you personally I´ve been reading your blog since last year and you seem to be intelligent , sensible and very much in love.
Thanks again for taking the time to write .
Kisses from Spain
Jason, he knows you are there, I just know he does. Sending much love to the both of you.
JSP, I'm not big on poetry but a friend called my attention to this piece about winter and strength and acceptance, and I thought you might like it now:
Lines for Winter, by Mark Strand
http://www.poetryfoundation.org/archive/poem.html?id=181380
I know how tough its is to see someone you love slowly fade. I have only knew JB for such a short time but from the first day I met him, he was a friend with a smile and kind word. Please know my love is with the two of you with warm thoughts always flowing into the mind of JB in bright colors and dancing around a camp fire..
Thank you for all the updates that you both have posted here so that we who aren't there can know how you both are doing..
With Love from Sweet South Carolina
always
Buckie (Mark)
Jason AND JB, you guys are beautiful... even at... ESPECIALLY at moments like this. Stay strong (and loving!)
I strongly urge people to read that poem, Lines for Winter, suggested by Morgan Mae above (http://www.poetryfoundation.org/archive/poem.html?id=181380). It's at the essence of life and living - "Tell yourself... that you love what you are." If and when I visit, I hope to bring this poem and read it to JB. And yes, thank for your openness and willingness to share and invitation to join in the journey.
JB is a wonderful man I have only worked with him for a few years but he has such a wonderful spirit that just eminates to those around him. I am sorry to hear how far his cancer has advanced.
You are a wonderful man for adhering to JB's final wishes as difficult as they may be. I am sending you and JB's family all the stregth I can to help you endure during this trying time.
Lois Eaton
sending you all my best thoughts and prayers. Nicole
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