Julie spent an hour or two yesterday getting the guest room/office ready for Florence, who is arriving on Tuesday. The desk has been piled high with lots of paper, most of which can probably be thrown away (at least I hope it was stuff that can be thrown away). Anyway, when I took a look in there last night the desk was clear for the first time in I don't know how long.
I feel so discouraged today. I'm exhausted, my chest hurts...everything is going downhill, only very, very slowly. Maybe I'll feel a little bit more upbeat when Florence is here--she and I are always quipping and playing word games and being silly. One of the reasons Marty and I get along so well is that he loves wordplay too.
I haven't been able to find anyone to take me to acupuncture tomorrow (Marty has a meeting he really wants to go to, and since he has rearranged his schedule for me so many times, I can't very well ask him to skip something that's important to him). But I'm not sure I will feel strong enough to go out in any case.
A lot of people who read this blog are in other cities, even other countries, but Marty suggested that I ask local readers if they have some times when he has to be out that they can cover for him or take me to appointments. If you think you might be able to help, please e-mail Marty directly at MRFederman@earthlink.net, with the subject line "Judi's calendar." There have been so many times that Marty has not gone to things important to him, because of me; I think it is important to any caregiver that they have time for themselves. My father was a hospice volunteer for many years, and he told me that the first thing he would tell the caregivers when he arrived at a patient's home is that they should leave and take some time for themselves.
All this would be unnecessary if I were to go stay in the hospice house, but there are many reasons I don't want to do that (the cost among them). I still feel most comfortable in my own home and hope I can stay here until the end.
Judi, I have just finished a week of facilitating "consumer empowerment and leadership" (CELT) here in Virginia. Twenty-seven people just like you, just like me, people living with a diagnosis, got an earful about you when I was teaching about the history of the recovery movement. Your Globe article came out the day before so I was able to share it with the class. People were inspired by the stories of you and others who are part of our history and part of our now -- part of opening doors and changing lives. Thank you for who you are. Thank you for blazing a path for others to follow and continue on with the cause.
ReplyDelete-bonnie neighbour