Elissa Nelson's Journal
October 25 Update from Emilyn and Megan
Written Oct 25, 2013 8:01pm by Megan SavageHi folks,
Emilyn and I wanted to update you all about some new developments with Elissa's health this month.
Elissa' still going for walks in the park; visiting with pet friends and human friends/family, like Tiara who just came from New York, cousin Carolyn and Aunt Marti, and cousin David from Idaho. She's also still enjoying being read to. Emilyn's reading her all of your mail, and enjoying all the zines people are sending her. Megan has been reading poetry, most recently Dylan Thomas. Margaret has been reading her Alice Munro. We've been listening to a lot of old jazz on the record player (like Duke Ellington), and having lots of autumnal fires. Some of Elissa's favorite foods have been consumed this month, including arepas, pastries from Little T bakery, Lebanese food, and goods baked by neighbors.
At the same time, we have noticed some significant changes in her health in the last week or so. Elissa's appetite has dwindled significantly. She's having a hard time swallowing, which is also affecting her speaking. She's also so tired she sometimes has trouble doing more than whispering. Physically, her weakness has increased and she's spending most of her time in bed now. All of these changes to her motor functions indicate that she's increasingly far along in the progression of her disease. Hospice workers are trying to speak realistically about what may happen next, and to prepare us for what's to come. Since she's so young, and since she's fighting so stubbornly, the hospice workers think that we may see a slow and gradual continued decline. There's optimism on many fronts, though, that we may get to spend Thanksgiving together.
We've been really lucky that Elissa doesn't seem to be experiencing any pain. Her pain is just in the form of frustration that she can't do the things she used to do.
But her humor, even now, is as present as ever.
You may be wondering what you can do. Postcards, thoughts, and prayers are still welcome and appreciated by Elissa, her family, and her community. If you would like to visit, understand that there is a high probability that Elissa won't be awake, or will only be awake for a few minutes. But Emilyn would still appreciate the company, as well as a break that would allow her to take a bike ride before the weather turns. You can contact Emilyn at 504-942-7071 or at email@example.com. If she doesn't get back to you right away, please be understanding. She's doing the best she can.
Emilyn particularly wants to mention how grateful she is for her friends and community who have reached out and allowed her to get out of the house every day. She thinks it's so amazing that people have come forward in the way that they have.
We'll do our best to keep updating you in the following weeks, so you can stay in touch with Elissa's progress.
Emilyn and Megan
October Update from Megan
Written Oct 6, 2013 2:47pm by Megan SavageHi folks,
I've gotten a couple emails from people asking about how Elissa's doing, so I thought I'd post another update. I'll try to keep updating at the beginning of each month, unless there's pressing information to share.In many ways I would say that things are pretty similar to how they were in September. On the good side, I've had some wonderful visits with Elissa this month in which we've read poetry out loud together and discussed it - others have been doing the same, I know. Although she's frustrated that she can't read aloud as well anymore, she seems to really enjoy hearing poems, sometimes over and over, and thinking about their resonance. She's been coherent and thoughtful, full of good humor and astute observations. Elissa's still welcoming her friend Kerrie for weekly writing dates as well.
The big victory this month was that Elissa made it to both my wedding and reception on Seotember 14 (thanks to Emilyn and Jeff), which surprised everyone but her (she kept saying, "duh," of course I'm here!). Having her there was incredibly meaningful and moving for me. Thinking back to last May, when we started hospice after a rapid progression of symptoms, I think many of us were doubtful she would be as spirited as she is still, and that she would have as many good days. Her sister has been doing a wonderful job of caring for her, and the house is warm and full of life and good things to eat. Elissa and Emilyn have been having the first fireplace fires of the season, which Elissa loves, and Emilyn's cat Rusty has been a great companion for them both. Now that Emilyn has officially moved down from Seattle, the house feels like sister-ville.
Elissa's mother Margaret was in town last week, and will be here again this coming weekend, and her Aunt Marti was visiting the week before that. A core group of friends and members of the Zen center are visiting on a weekly rotation, and mail continues to pour into the slot. It seems like things are getting into a routine with the change of seasons.All that said, Elissa's disease continues to progress. She sleeps much of the time now, sometimes with only 1-2 hour periods in which she's "up" during the day. Emilyn often will wake her up after a visitor has arrived, so that she can be alert for as long as possible. On the not-so-good days she can seem very tired and "out of it," and her appetite seems to be diminishing to some extent, although she still enjoys the treats people bring her. (As far as treats go, in addition to sweets, I know good coffee and good cheese would be nice staples to bring over, for those of you who are wondering.).
Elissa did try out Serenity Hospice's in-patient respite facility this September (which is designed for short term stints, to give caregivers a break). While I know that was emotionally challenging for all, it seemed to go well.I think it's clear to all around her, and certainly clear to Elissa, because she mentions it a lot, how many people have rallied around her and love her. She's still in a place where she can enjoy correspondence and connection with her friends and community.
I'll try to pass along guestbook notifications to E when I visit with her. Again, feel free to email me at firstname.lastname@example.org with more questions or concerns. Although Emilyn is Elissa's primary caregiver, I'm happy to support her by helping out with keeping people connected.
September Update---from Megan
Written Sep 3, 2013 5:48pm by marti mogensenHi all,It's been a while since my last update, and I wanted to check in again, briefly. Elissa's mother Margaret has been keeping the CaringBridge site updated (Margaret's August 12 update is beautifully written and informative, if you haven't had a chance to read it), so many of you probably have a good sense of how Elissa's doing through that, or through seeing her yourself. That said, I thought it would be a good idea to send a quick email in case you haven't had a chance to look lately.I've been back in Portland for a month now, and have been able to spend good time with Elissa again. The illness has definitely continued to progress since she began hospice. She needs more help with everyday tasks, spends more time in bed, and says more things that indicate her cognitive impairments. However, she's still cracking jokes and asking questions, staying as involved in the world as she can. A sense of vitality and tenacity, as Margaret put it, is strongly evident in her spirit.I've seen so many wonderful people rally around her - from friends who have flown in from afar to spend time with her, to the amazing folk from Heart of Wisdom Zen center who bring Elissa meals and meditate with her, to all the faraway friends who have flooded her mailbox.I'm still happy as ever to help answer questions/provide support as best I can, but Emilyn Nelson, Elissa's sister, is her primary caregiver. Emilyn has moved her belongings down from Seattle and is officially living in the little yellow house now. So for those of you trying to coordinate visits, probably your best bet is to call Emilyn at 504.943.7071.Another thing to know about visits: Elissa's sleeping a lot more these days, and is usually down for the night after dinner. She's most alert/lucid in the morning, and she has many hospice appointments throughout the morning and early afternoon, on many days - when she doesn't, she's often sleeping in the afternoon, too. Visitors are welcome, but you may find that you stay for a shorter time than you used to, or that the window for visiting is a little different than it once was.FYI, we aren't really using the CB calendar so much anymore, though we are still keeping the site updated. Also, I think Emilyn helps Elissa go through her phone messages every few days, but she's not using the phone in any regular way now, so if you want to try to reach her quickly, best to go through Emilyn.I hope Emilyn (and/or Margaret) will weigh in if there's anything in particular she needs from the community.Again, please feel free to email with questions or thoughts, and I'll help facilitate as best I can.All best,Megan