Tuesday, March 27, 2012

Changes... Always Changes.

I went over to visit Dad last Friday. It was a beautiful, sunny day; the kind of day where we live that makes you trust, just for a minute, that Summer will get here eventually, even though you know that the next day will yet again be cold and rainy and depressing. It's the kind of day that Dad used to love. Anyway, I opened the door to his home and saw him in his usual post-lunch spot on the couch, drowsing away. I was looking forward to seeing him, but also to seeing the lovely family that's been caring for him for the past year, and their delightful two-year-old daughter, who seems to really like Dad. Every time I remember our holiday visit to Dad, when she couldn't find him in his room and ran through the house saying, 'Where Dullas? Where Dullas?", I smile, and give thanks that this caring family lends some normalcy to Dad's situation, and lets him experience the special energy of small children. I felt secure in the care and environment they were providing.

As I moved further into the living room, an older, ethnic gentleman I didn't know rose from the couch where he'd been reading the paper. He introduced himself as a new caregiver after I told him who I was and I asked him what days he was at the house. He replied that he and his wife were new, that they'd been there for about a week, and were the replacement for the family that had been there before. As we spoke, an older, kind-faced woman I presumed was his wife came out of the kitchen and introduced herself. I talked for a little bit with the new couple, asking what they knew of the departure, which wasn't much, and they seemed both caring and knowledgable. I explained that I visited Dad when I could and that I enjoyed just sitting quietly with him. I'm sure their care of Dad will be both kind and efficient. But it won't be the same. As I sat with Dad, smiling at him whenever he opened his eyes and looked at me, I felt a deep sadness that not only had I not had the chance to say goodbye to people I genuinely liked, but that he would no longer receive care from a couple that I felt had not only truly liked Dad but had in some way included him in their family. It's also very difficult for Dad in his present state to accept change and difference, and I fear it will be hard for him to adapt to new caregivers. I hope it won't bring about a resurgence of his anxiety and aggression.

But this is the reality in the world of elder caregiving-there's a lot of turnover. Caregivers either burn out or move on to another city or another job. Let's face it, there's not a lot of money in this business, which is a real shame as anyone who's willing to take on the difficult and intimate care of someone with dementia deserves a million dollars- and a medal! I'm sad that Dad will no longer benefit from his little family, and I'm sad that he won't get to borrow their daughter anymore. She has such a bright spirit, that he really responded to. I wish them well, wherever they've gone, and if I could, I would tell them thank you for their care of Dad and their big hearts. In this world I never asked to be a part of, I've discovered that finding good people, kind enough to lift some of my burden, who really like and want to care for my Father is not always easy, so you want to hang on to them come hell or high water. Not only do I think he liked them, but I think they made his disease a little easier for him to live with. For his sake, I wish I could have hung on to this family just a little while longer.

Tuesday, March 20, 2012

I've been trying to be better about updating my site with current information and links and such-I hope someone has found it helpful!

There is a new link to a great Lewy-Body site that has tons of information on the disease and how to deal with it.

Always more to come, and if you find something interesting you think I should post, please don't hesitate to send it to me through a comment!

Thursday, March 15, 2012


I've just said goodbye to my last hospice patient. SVNS hospice will close its doors at the end of next month, and has been transitioning patients to other hospice organizations. I'm still doing Bereavement counseling until the end of April, but it will be a very sad time for me when I'm done completely; funnily enough it will also be the anniversary of two years that I've been doing Hospice work.

When I started out two years ago, I was a nervous newbie. I had had plenty of experience with dementia, and the elderly, and elder facilities. But I didn't really know what awaited me here. I drove into Seattle, a slip of paper with an address clutched in my hand, searching for apartment numbers as I drove slowly through the streets. I finally found the building I wanted, and was buzzed up to the apartment where my first patient waited. I had no idea what to expect, but was trying to prepare for anything-how was I to know that it would be the first of many blessings I would receive doing this work.

I only knew that patient and her family a handful of days, but I believe that I made a difference in her passing, both for the patient, and for her loved ones. I tried to remember my training, but found that what really came through was my compassion and what I knew of death and grief. It was enough, thankfully, although the whole time I felt I was flying by the seat of my pants.

Since then I've been deeply honored to be with each and every one of my patients-those I knew for months, and those I saw only once or twice. I know that doing this work has deepened and broadened me, and helped me in my work with Dad. When the time comes, I'll hopefully be able to welcome a hospice volunteer to be with Dad, as I've been with so many other people's loved ones.

I'm so sorry that SVNS has to stop doing its good work, and I hope that I'll be able to find another organization in which to work. This has been an amazing two years, and being able to do the Bereavement counseling has only added to the experience. Thank you to my wonderful mentors, Ross Robinson and Jeff Liles, who show me what it means to work for others. What I know is that I want to keep on doing what I'm doing, helping those who need help, grieving with those who must grieve.

Tuesday, March 6, 2012

One Last Voyage.

Unfortunately, I found out a few weeks ago that the hospice organization I work with is closing due to financial problems. I'm still seeing my patient, however, and will continue to do so until the family makes other arrangements. It's been very rewarding spending time with this particular patient, even though this person has gone in and out of lucidity during my visits.

On my first visit, I learned that this person had voluntarily chosen to stop eating, so I didn't expect that I would be visiting much longer. My patient started out very out of it, experiencing hallucinations. As I sat next to the bed, my patient implored me in a whisper: "Let me go, please, just let me go. Take these chains off and let me go." Oh, how I wish I could have. I felt powerless to help but thankful that I could at least share some of these hard moments.

Over time, however, my patient decided to start eating again, and got much stronger and more lucid. On one visit, as I was holding my patient's hand, I was told that I had a 'very proper face.' I have no idea what this means, but I hope it's good! On another visit, as I came in to the room and sat down, my patient told me how good it was to see me, that it got very lonely at times. And I thought to myself, I'm sure it does. I've been sick before, and I know what it's like to lie in bed, alone, limbs aching, waiting for the hours to go by. It must be even harder when you know you're going to die; when you, in fact, WANT to die, but have to bow to the dictates of your mortal body and it's decision of when its had enough.

The other day, as I sat there, I watched as my patient pulled on the blanket, repeatedly, although weakly, tugging it up and over the bars on the side of the hospital bed. It slipped down every time, but my patient kept pulling it up over and over, to the point of exhaustion and anxiety. I realized that this person was whispering something over and over very quietly. I leaned over the bed, and my patient caught my eye and gestured with the blanket in their grip. "Help me put the sail up." my patient said to me, "You've got to help me put the sail up so we can go."

I have no idea what, exactly, my patient was experiencing, but I suppose the blanket did kind of resemble a sail. It brought tears to my eyes that this person was trying so hard to set out on this journey, imaginary or otherwise. I pulled the blanket up as far as I could and tucked it over the railings, then took my patient's hand in mine and looked deep into their eyes. "Look," I said, "the sail is up and you're ready to go. Have a safe journey." As I said this, my patient squeezed my hand and closed their eyes, finally at rest, at least for now. I know my patient was a sailor in a younger life, and I hope that this was a good memory/hallucination, and that he'll journey on soon.

This work has been so very rewarding and I'm so fortunate to have been given the privilege of sharing the private moments of a family or individual. I'll never forget what I've seen and learned and been given, and it's helped me so much to deal with my own Father's illness and eventual death. My Dad was a sailor, too, and loved being out on the water with the wind blowing him along as fast as possible. I hope that when the time comes for his final journey that it will be as easy as raising his sails, pulling up anchor, and floating off.