Blessings.

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.

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.

Borrowed Grandchildren.

Paul and I went over to visit my Dad last weekend, just to see how we was doing and to bring the framed wedding pictures I had put together. When we got there, Dad was just finishing lunch, so we sat down at the table to keep him company. Unfortunately, I could see that he wasn't in as good a mood as I'd seen him in lately. I suspected he wouldn't be as chatty as in past visits, although one should never underestimate Paul; no one can resist his charm!

Leaving Paul talking to Dad and the caregiver, I took the frames into Dad's room. As I walked down the hallway, the little girl who lives there popped out of the basement door. Her face lit up as she saw me and she ran into Dad's room with me. "Where Dullas?", she kept saying, looking around her. I finally figured out she was saying my Dad's name and asking where he was. I told her he was eating and she raced out of the room, presumably to find him at the table.

I've never known what Dad's position was on grandchildren of his own; I never had time to really ask him. I do know that after the onset of his illness, he really seemed to like spending time with little ones. It's not likely that I'll give him any grandchildren of his own, and he wouldn't know them anyway, but as I sat at the table listening to the constant flow of chat from the little girl and watching the miraculous transformation of sullen Dad to smiling Dad, I was really glad that we had the opportunity to borrow a grandchild. She really seems to bring Dad out of himself, and her parents don't seem to mind loaning her out. Lucky us!

Tax Tips.

This link was sent to me via my Facebook page and it has some GREAT information for those of you who are caring for your parents in your home.


http://www.agingcare.com/Tax-Tips-for-Caregivers



(Sorry, its not letting me make it a direct link, you'll have to type it in to your search box.)

Money Can't Buy You Love.

I have a hospice patient I've been visiting for about a month and I really enjoy seeing this person. My patient is close to death, at one point even choosing not to eat, and is sometimes quite sharp and lucid, at others, caught up in a hallucination. However, when I'm there holding this person's hand or feeding them a popsicle, I feel I'm in the right place doing the right thing.

I see a lot of different facilities in the course of my work. I see small, six-person Adult Family Homes, medium-size Dementia centers, and quite large Assisted Living/Memory Facilities. I've commented before that most of the day to day caregivers belong to other ethnic groups, which I find very interesting. I've noticed something else lately, too.

The facility where I visit my patient is absolutely the most wealthy and gorgeous I've ever seen. There are huge chandeliers in the lobby and hallways, a sweeping staircase, a coffee bar, a pool, a library, an entire Wellness Center, and various other amenities. Inside each elevator is a mirror with a vase of flowers welded on to it, for heaven's sake, and there are plush draperies and soft furnishings everywhere. The apartments are large and roomy, with full kitchens, fireplaces, and large bathrooms. It's obvious that a lot of money is required both to live in the facility and to maintain it.

The thing I've noticed, however, is that there are no more staff members in this plush facility than in any other, smaller one. While its obvious that the staff members both know and care for each resident, they don't have much time to spend with each one. I will sit with my patient for 45 minutes to an hour and see no one; I'm sure there's a schedule that says when to change dressings and move the patient, but there seems to be no time allotted for visits. That's why I'm there. Just like in any facility, if you have no family to visit you, you're dependent on what the staff can spare you.

So if you can't afford a fancy place for your family member, don't necessarily think you're a failure. What I've seen just goes to show me that it doesn't matter whether its a plush, gorgeous, expensive facility or a small, patched-up Family Home-the care seems to be very similar. There may be flowers in the elevator, but I have a feeling my patient, like most residents, would rather have more time with caregivers.

Be My Valentine.

Tomorrow is Valentine's Day. Admittedly, its not my most favorite holiday; like many people, I went through my rebellious phase where I wore black on V-Day and refused to participate. I'm no longer quite that bad, but I still find the diamond commercials on tv quite irritating! As I was walking through the store today, though, I went down the holiday aisle and was accidentally sent into nostalgia space.

Like most kids, I actually enjoyed Valentine's Day when I was little. It's only six days from my birthday so I often got heart-shaped cakes and decorations and such. I always liked the printed valentine's cards we brought to school and the little mailboxes we made to hold them. The thing I liked the most, though, was what my Father did every year.

Since I can remember, every Valentine's Day evening, we would wait anxiously for our Dad to get home, usually around 6:30. He would come in the door, clutching a large bag, and in that bag was a gorgeous, little heart-shaped box of chocolates for me, and one for my sister, and a substantially larger one for my Mom. Sometimes our little boxes were red, sometimes yellow, sometimes pink-my Mom's was almost always red and usually had a silk rose on it or something like that. Although the outsides changed from year to year, the candies inside remained the same; slightly nasty orange or raspberry creams, a few caramels, and one or two with nuts. I'm a chocolate snob now, and would never eat any of these-at the time, though, we didn't care. To us, they were delicious, and we looked forward to these moments of feeling special all year long.

So today, as I looked at heart-shaped boxes that were remarkably similar to those I loved thirty years ago, I thought of my Dad and I felt both sad and happy to have such a good memory about a man with whom I sometimes had a difficult relationship. Happy Valentine's Day, Dad; if I had a heart-shaped box of bad chocolates, I'd give it to you!

Hallelujah!

This was big in the new today! Go to http://www.nytimes.com/2012/02/02/health/research/alzheimers-spreads-like-a-virus-in-the-brain-studies-find.html? for the full article.

Alzheimer’s disease seems to spread like an infection from brain cell to brain cell, two new studies in mice have found. But instead of viruses or bacteria, what is being spread is a distorted protein known as tau.

The surprising finding answers a longstanding question and has immediate implications for developing treatments, researchers said. And they suspect that other degenerative brain diseases like Parkinson’s may spread in a similar way.

Alzheimer’s researchers have long known that dying, tau-filled cells first emerge in a small area of the brain where memories are made and stored. The disease then slowly moves outward to larger areas that involve remembering and reasoning.

But for more than a quarter-century, researchers have been unable to decide between two explanations. One is that the spread may mean that the disease is transmitted from neuron to neuron, perhaps along the paths that nerve cells use to communicate with one another. Or it could simply mean that some brain areas are more resilient than others and resist the disease longer.

The new studies provide an answer. And they indicate it may be possible to bring Alzheimer’s disease to an abrupt halt early on by preventing cell-to-cell transmission, perhaps with an antibody that blocks tau.