Friday, July 24, 2009

More ups and downs

I try not to get discouraged when I have a down day, and yesterday fortunately things were going much better. Katrina, the hospice social worker, came in the morning and had a good discussion with Marty and me, focusing on how each of us could get the supports we needed. I told Marty that I worry when I see him getting so exhausted, and we talked a lot about how he needed downtime when he wasn't doing chores, or going to meetings, or taking care of me--time just for himself to recharge and relax. One of my maxims over the years of doing advocacy work is that if you want to take care of other people you have to make sure to take care of yourself!

We also talked about how I am going to need additional PCA hours, and I told Marty and Katrina that Diana had suggested a friend who might be interested in helping, and late yesterday afternoon she stopped by so we could get a chance to meet each other. Her name is Patti and I think we both felt that it could work out well, so I told her that the next time I had some available hours I would call her and we could both get a sense of things.

Judy was here a good part of the day, and among other things put fresh sheets on the bed--after lying in my own sweat all day on Wednesday that felt so good! I never made it into the living room and my wonderful lounge chair on Wednesday, but spent most of the day there on Thursday, and am here once again today. Yesterday was very muggy and we needed the air conditioning (an absolute essential for someone with COPD). Fortunately, it rained all night and the air quality is much better today.

Lisa, who usually gives me my massage at eleven on Thursday mornings, called to ask whether I could skip a week, or, if I really needed her, if she could come a bit early, and I'm so glad she agreed to come. When she arrived, I had a pretty bad headache, so she worked on my head for awhile, which was very soothing, and then started to work on my feet. I told her that the top of my head felt much better, but I still had intense pressure in my sinuses, so she came back to my head, and very gently but firmly used her fingers along the ridge of my cheekbones, and I could feel a release--a pleasant, tingling feeling that moved all the way down my spine, and suddenly all the pressure in my sinuses was gone. It was really amazing, and the sinus pressure has not come back since.

Marty and I for some reason stayed up quite late last night, and when I tried to go to sleep (I think it was after one) I managed to stay asleep for only a very short time before waking. I read for awhile, slept for awhile, and that pattern continued all night--I don't think I slept for longer than forty five minutes at any one stretch, and this morning I was feeling quite groggy. I was hoping to nap during the day today, but I actually feel more alert right now (it's early afternoon), although I haven't slept. Ann is here (Marty is out running errands), and if I feel strong enough I'm going to take a shower later.

We're talking about some possible day trips, and maybe even an overnight. I saw something in the New Yorker about a dance performance at Jacob's Pillow (in western Massachusetts) by a tap dancer named Jason Samuels Smith, who was a protege of Savion Glover, a dancer I adore (who was himself a protege of the great Gregory Hines). I checked out the Website but couldn't find anything about wheelchair accessibility so I am e-mailed them for information. I haven't been there since I was a teenager and took a little vacation with my mother. Marty is always enthusiastic about getting me out, so we will see.


  1. Hi Judy, since I'm a CNA with a hospice provider in the southeast, something has me curious. I've been reading your blog for a while, and reading about both hospice programs you have used, I wonder why there are not CNA's or PCA's employed by the hospice coming to help you with housekeeping and personal care? It seems that your PCA's are either friends or caregivers you hear about through word of mouth, and that you are paying them out of pocket. Doesn't your hospice provide personal care and housekeeping duties from one of their own employees as part of their overall service? Just curious. Glad you're doing better today!

  2. Apparently, I would be eligible for a "home health aide" if I needed help with personal care tasks, like bathing and toileting, but I am still able to do these things myself. It was made clear from the beginning (and this was true as well when my dad was a patient of a still another Massachusetts hospice program a few years ago), that the kinds of services I am getting from my PCAs are considered out-of-pocket expenses. As my medical condition deteriorates, I will be receiving more skilled nursing services, and I imagine will need some of these home health services as well. While I still can do it myself, I don't want anyone else bathing me!

  3. I see. I could understand from your posts that you are not receiving personal care from the attendants. I was just wondering why the hospice did not offer a CNA to do even the housekeeping and companionship tasks. Where I work, a CNA can do any number of things that the nurse has included on the plan of care. I have several patients where my job is simply to provide light housekeeping, prepare a meal, do laundry, or offer companionship and support. I don't know if the system might be set up differently in Massachusetts, or if the size of the hospice dictates whether or not they can utilize their CNA resources for simpler tasks that don't involve personal care. It just seemed odd to me that you should have to pay for these services instead of receiving them from the hospice. Thanks for responding! : )