Tomorrow is my birthday. It's not a milestone year, and it's really not a big deal anymore. For me, it's more a "whew, made it through another one. I wonder what this one's going to try to do" moment. I did make sure I made it to church for the May birthday blessing (we have a quick blessing in church for every month, and you get to see who else shares your month with you.) My snarky humor always hits about halfway through. Linda wanted more than anything to be there for her birthday on 2010. Our church is more like family. She made sure she was not using her wheelchair, and that she walked holding the kids and her walker up that aisle to her the words that morning. Three weeks later she was gone. As I heard Jane (our minister) say the words "and may God bless this group and allow them to be here next year once again" (that's a semi-quote) I remember Linda. I guess maybe I should skip that day, but there is just something about it that connects all of us. The littles and the very olds are up there. WWII vets and three year olds who can't stop squirming.
And of course, I work for hospice. We have the most profoundly disturbed sense of humor. I really can't share much of it here. If you do not experience death on a daily basis you don't see the humor in the moments, or understand we see the passing as a sacred moment, and our jobs as a calling, but we also have to survive the daily life we live. Those things are protected behind walls and doors and texts and emails. Medical and nursing students squirm if we are not careful at times. It was the same working for CPS. Some humor just isn't meant for mixed company. It's an us and "normal"people with sane jobs and professions contrast.
I was reminded of that yesterday on the plane ride home from Sacramento. We were at the gate upon arrival, but the doors were not yet ready for our hordes to zoom to the jetway. Passengers were standing, jostling for position. I always wonder why- we are all headed in exactly the same place, and the luggage won't be there. But stand we do- trying not to hit our heard on the overhead compartments. I discover that I have said what I was thinking "It's like life- there's only one way out!" The woman ahead of me looks startled, then laughs. Nervously. Does she have an axe murderer behind her? Did I check my axe? I apologize- "I'm sorry. I work for hospice. We are all a bit disturbed. It's a coping mechanism." She relaxed, laughed, and said "One of my best friends is one of you (we are a tribe) and she says stuff like that all the time. And she won't share her stories!" You betcha- tribes have secret handshakes and secret humor. Our own culture. You have to have the right pedigree to get into our inner sanctum. And you probably don't want to. At CPS there was "normal" abuse. What? In hospice we have good deaths. We have body fluids. We deal with families who in Hallmark land should have a peaceful ending where nobody allows past hurts to influence them. In real life we have all the family history coming to life but magnified.
I was reminded of the impact of our humor in the wrong context when I got home tonight. I was late. I worked late and then somehow we needed milk and dish soap. Cats needed food. Like they deserved to eat or something outrageous like that. And then I opened the mail. And my mouth. Whoops.
I should have checked myself. I'd taken Casper with me for part of the day. She'd had a bad morning, and when I arrived home with her lunch milkshake she decided suddenly to ride along. It was 91 degrees. In the shade. Five minutes later I had the air on super cold to get her as cold as possible. Kind of like freezing a bear to get through to Spring. I got her a cold drink. I found a tree to park under. And I focused as best I could to keep my first meeting on target and task oriented, knowing I would be back tomorrow. Afterward I headed to the office to get supplies, and Casper came in. She worked there for years, but hasn't since 2011. She usually avoids it because she doesn't remember who anyone is, or if she knows them. Today she needed to, and she was bombarded by folks who regard her well but who she can't remember except for those in long term memory, however tenuous. I could see her stress when she started to freeze and have trouble with words, and looked for help. Then on the way out we were met by one of our bubbliest, warmest staff- who did not work with Casper and was not in long term memory. Oops. Big hugs, shared confidences, but Casper was completely stiff. When we cleared the building but before the door closed..."Who was that ______?" Why was she hugging you? And me? I don't like her."
What? She looks out for me. She works in a team with me. We talk all the time. Check that- not in long term memory. What Casper saw was a very attractive warm and bubbly woman hugging me and then her, and squeezing my arm. All friendship- except in dementia land and under stress when she can't remember her old office. I've got some 'splainin' to do. Fast. I explain who that was, why she is my friend. And Casper's. How much she helps me. "Are you sure? I thought we didn't like that one." Nope, that's a different one. This one is ours. She's my team. Derail. Talk about seeing those she can remember and misses- Maribel. Adee, Deb. Terry. Shannon. Remind her of the others I work with now who are so much help by phone. She relaxes. I get her home so I can fly back to work. But it's a bad Parkinson's day, and her mind is as jumpy as her body and nerves. She's exhausted, she wants to sleep, but every nerve is enervated, and raw, and her mind will not quiet. When I return there is more drama at home, and that makes it so much worse. She cannot tolerate any stress on days like this. You can literally see it on her face and in her hands and neck.
Back to that mail pile. Partway through is a letter from church. Bless you Lori DeVoe for doing that. "I don't have a church." Yes, you do. "Okay, but why would they want to send anything to me? I'm not a member. I can't go sometimes. I don't believe the way some of them do." That would be the point. You don't have to in order to be cared about. She looked at it again and smiled. The very next piece of mail I just had to read out loud. Dumb Jill. Just dumb. Dementia makes for paranoia in and of itself. If you can't remember, how do you know people aren't making stuff up? And how many times in hospice do we see families who specifically tell us not to tell the patient they are dying and on hospice? (Yes, really. Because who might think a patient might not see they are declining, not eating, not walking, and that family is flying in from the far corners of the earth. That's all coincidence.) So I read..."Look honey, it's a cremation service. They are low cost. And it's addressed to you."
I know. I know. You can see what's coming. I should have too. But I forgot to separate myself from what I do. I plan funerals daily. I know how you can donate your body to science for a month and get a free funeral and biodegradable ash urn and two free death certificates to boot. I am not shy about that stuff. I get guaranteed life insurance offers for Linda ll the time. I always want to call and say "yes" with the gold sticker. I have called a couple of times and asked how soon they would pay if the guaranteed coverage person was already gone. They hung up on me. Apparently I sounded weird. But today, of all days, I should have been cautious. "Do you know something you are not telling me? Why would they send that? Did my doctor tell them something? What's going on?"
Whoa. Back down. I show her the barcode that says it's mass produced. It's been sent out to thousands. No, your doctor practices HIPPA. You are not dying. I am not lying. If you are declared terminal, you will know. God knows none of our hospice staff would keep that from you. They value you. They know your values. No, we are a long way from that. "But why?"
How do you explain mass marketing to someone who is panicked and not thinking clearly, and isn't processing. I use magazines, auto insurance, all the examples I can spot. The panic fades. But not the paranoia. Not the distrust. Not yet. Throughout the night the tremors increase. Moodiness escalates. It's a new feature we've seen only a few times. It's not my favorite. And I'm exhausted. I saw lots of very sick new patients today and very upset clients tonight. Now this. And damn it, I caused it tonight.
By ten we had quiet, but not sleep. That's why at midnight I'm still typing. Extra sleeping meds, extra anxiety meds, extra everything. The guardedness finally let go at 11:30. Sleep at midnight. Not good sleep- wild REM disturbance sleep. The kind nothing works on according to the literature. Not with Lewy Body Dementia. Casper is jumping, shaking, talking. I type. It's writing for mental health. Mine. Tomorrow is a demanding day. In fact, so is the whole week. So I'm using my newest mantra, plucked off Pinterest (you take what you can find where you can find it. Rule #1): "You never know how strong you are until you have no other choice." And to that I add: "You never question the fears of someone with dementia and chronic illness, you honor them and accept that they are real." And then you deal with it.
Tomorrow I take stock of where I have been- first social worker with Inland AIDS, CPS, Adoptions, hospice, rape crisis, domestic violence coordinator, trainer, therapist, business owner. Partner, wife, widow, wife, mom(my), daughter, sister, aunt, cousin. Political activist, church member, neighborhood activist. Caregiver. The next year, if I stop days like this one, should be an adventure. Graduation is next month for my youngest. So is her 18th birthday. There is a party to plan, and I love that part of life. The celebrations that matter so much. Hawaii is coming. More presentations. Maybe a book or two. And tomorrow I will keep my watch on, so we can all enjoy it. No snappy mom, no death jokes, no bad Jill behavior. That will be the hardest task of all.
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