Thursday, December 4, 2008

Trying to make sense of it all

It's been less than a week since I formally became a hospice patient...or client...I'm not sure exactly what the politically correct term is. Since I've spent my whole professional life trying to do away with the term "patient," I think I'll stick to client here, until a better term comes up.

It's funny that I've spent so much of my life being depressed, but I'm not depressed now. I feel calm and very much in control of my life. COPD is uncomfortable, but not painful--the biggest problem is the frustration I feel when every little chore (emptying the dishwasher, folding laundry, etc.) turns into a big job so that I need to lie down and rest for a bit (and often fall asleep).

It has been comforting to finally be dealing in a truthful way with how sick I am. I wish I could remember the name of the very nice doctor, during my last hospitalization, who replied to my question about that by saying, "Let's face it--without a lung transplant (which was being considered at that point), you don't have a very long life expectancy." She arranged for the people from the palliative care team to come in and see me, and it felt so good just to talk honestly and openly about what I wanted and what my needs were.

"My last hospitalization"--that feels so good to say! After so many trips there, during most of which I felt that very little was being done for me, it's good to know I'm not going back. This last one, however, was helpful. I was so weak I could barely stand, and Dr. LaCamera said I needed to be on IV antibiotics. I asked him if it was possible to bypass the ER, and he arranged for me to be admitted directly to the floor, which saved hours of time, and also the $100 ER co-pay which I always feel is so unfair. After a week of antibiotics in the hospital, and another week at home I'm back to my previous baseline--low, but at least I feel good enough to do some things, even with difficulty.

Marty is determined to get me out of the house as much as possible, even though it's become quite a production. And it's true, that going out gives me a lift. Yesterday we went to the library, and I now have a new stack of books (I took the last stack back basically unread, as I tend to grab a bunch of different things that I hope will pique my interest).

I am certainly intending to stick around for awhile--I want to see Obama get inaugurated, and then be around for the Super Bowl as well (especially if the Giants, now 11 and 1, are in it). After that, I'll set another goal. I think getting into hospice so early in the process is a good thing for me, as it allows me to enjoy all the "goodies." Yesterday, Celeste, the social worker came by, and talked with Florence, Marty, and me, and then took Marty into the living room for a separate conversation, which I'm sure he needs. I think he's taking things harder than I am. Poor Marty--when he met me I was an active, vigorous person, always flying off somewhere, and now I can't even get out of the house without his help. I told him weeks ago "this is not what you signed up for," and he keeps assuring me that he's not going anyplace.

It's five thirty in the morning--I've been up for a few hours and I guess I'll try to get a bit more sleep.


  1. hi judy,
    like your blog for it's honisty and purposefullness in a time of adversity. That seems to make a difference in people who want and work to lead lives of purpose and direction.

    Seems people like that can encourage others to do similar.
    Much enjoy the direct and insightful style and the loving kindness in the discriptions of those you share your life with.

    Life at BU psychrehab has moments in which purpose and direction seem to be visible on a horizon. It was nice reading what you posted.
    Kind regards,

  2. Glad to know that you are still doing good and at it and feeling well, my best to you for a happy life, however much time you have left? May I ask do you think this has helped you to work through your death any better? I know it was difficult being my dad's caregiver and knowing that he was to die, sometimes me and my mom just wanted to turn the car around and take him back to the hospital. The night he died we had just been and I had gone home like a good daughter, mom, grandma should. I swear that night he came to me in his spirit, I just didn't quite know what it was and I felt as if someone was saying to me I'm scared! The next morning he was gone, he was at home. What do we say at times like these? Let's get outta here! I wish you peace, Janie

  3. I'm new to this blog. I have a blog where I'm trying to encourage human support for one another through crisis. I searched "Hospice" and this blog popped up. I've only read this first entry but I'm very intrigued. I've always had a huge concern for the mentally ill so I'm full of hope that I will learn about both! (Hospice and Mental Illness). Two of my deep interests. Because 1) I have noticed that the mentally ill are "outcasts" of society. Even by the church who I've not seen reach out to them on a regular basis like they (we) do with other groups of humans... and 2) I've seen Hospice in action twice through the deaths of loved ones. I was SO impressed with the program that I have a knawing to get involved somehow... maybe training some day... who knows? I realize that the woman who wrote this blog has left this place and I hope you don't mind my comment. I am looking forward to reading further. Thank you. Hugs, from Colorado!

  4. PS. Wow, I love that "Marty" said he "wasn't going anyplace". Now that's what I call a "Significant Other"!!