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.

Recognition.

I made the trek over the lake to visit Dad today. They had just finished lunch in his house, and he was still sitting at the table, staring out the window, with a cup of fruit juice in front of him. After exchanging some news and business with his caregiver, I sat down at the table and he looked over at me. I said hello and smiled at him and asked how he was. He's been relatively talkative lately, so I wasn't surprised when he actually answered me and said he was fine. What did surprise me was the recognition I thought I saw in his face and eyes.

For a year or so now, I've been fairly certain that he no longer really knows who I am. My close friends ask me often whether he recognizes me and I usually respond that while I think he may know he has a connection of some kind to me, he no longer knows my specific place in his life. On his bad days, I think he views me suspiciously as one more person there to make him do something he won't like. In the last few months, however, I've mad a real effort to visit as often as I can, and I think it may be having an effect!

Today we actually almost had a conversation. His caregiver can't resist coming over when I'm there and interacting with Dad, showing me, I think, that Dad is still present and that the caregivers are trying to keep him that way. It puzzles him that both Dad and I are not the most talkative of people, preferring usually to listen when we're in big groups. He and I have spent hours together with only a few words exchanged, and I think existing together is just as important as expounding. So today Dad was almost talkative, and he kept looking at me-and when he did I smiled at him and looked into his eyes so he could see that they were exactly like his. And each time I smiled, he smiled a small smile back. I don't think I've actually seen him smile-at me- for a very long time.

Do I think he knew me? I can't say; it seemed like he may have. And while I tell my friends. mostly honestly, that its okay that he doesn't know me any more, that I've done my grieving about it. I have to admit how lovely it was to see that tiny possible spark of recognition, or at least what I like to believe was recognition.

Silence.

I've been exploring various hospice and bereavement organizations, including those under religious organizations. Not being a fan of organized religion, I'm drawn to Zen-Buddhist Hospice, a growing group of people who are providing mindful end-of-life care and bereavement counseling under the auspices and beliefs of Zen Buddhism. There is an established community in Santa Fe, called Upaya, that, among other things, teaches mindful presence with death.

I've been reading their book, Being With Dying, written by founder Joan Halifax, and I'm appreciating their calm, present, mindful take on witnessing for the dying and their families. She tells stories of families she's been with, provides various meditation practices, and recommends ways in which Witnesses, and family members, can be of service to the dying. One very important section caught my attention; allowing the dying to tell their stories at the end, however they can.

I think its so important to hear everyone's stories, not just those who are dying-their situations, of course, have a particular urgency. I have quite often now listened to the tales of people who were dying-it is an honorable part of my work, and once or twice, of my relationship to the dying. But it strikes me that my Father won't be able to tell his stories at the end. Even now he has few words, and soon enough he'll have none. The dementia has stolen that from him, as it has for so many others. When I cared for him, I listened as hard as I could, trying to get him to tell me the few things he remembered or would talk about. He never was much of a talker, so I don't have much, and I never will.

I know there are many who feel the same grief I have, their family members suffering the same fate. This disease steals so much from so many. It saddens me that he won't be able to tell his stories at the end. He will go gentle into that good night- gentle, and quiet.

The More Things Change...

I set up a meeting with Dad's caregiver the other day because he told me there were some new issues that needed to be discussed. I had planned to go over and visit Dad anyway, so we arranged to meet after I had spent some time with Dad. I thought Dad might like to see our wedding pictures, so I brought them over. I did try to show them to him, but he doesn't look at anything very long anymore, so I didn't spend too long with them.

I was a little apprehensive about what the caregiver would have to tell me, considering Dad's care and needs had continued unchanged for quite a while-or, at least I thought they had. I was dismayed to learn that some of the agitation and aggression that had caused us to move him in the first place had returned. The behavior wasn't nearly as bad as it had been at the big facility, but when he got confused or felt too managed, the stubbornness and anger emerged. Apparently, a chair had even been thrown. I couldn't help being curious, so I asked what kind of chair, curious to know how strong he still was. It was a dining room chair, evidently.

Hearing this caused the old fears to resurface that he wouldn't be welcome here anymore-or anywhere- and that I would be left with no choices about where to house him. I was reassured to hear from the caregiver how much they loved Dad, that they were familiar with his modes of behavior and were committed to getting him through without drugging him up too much, something I have very strong feelings about. In the end, the fee for Dad's care was raised, and we came up with a few other solutions that would help make things easier for the caregivers, but there was no question of him remaining in what had now become his home.

I guess it may have been naive to imagine all the bad behavior had gone for good. I was hoping that we had solved the problem, and I think we did for a while, it's just the way his disease is affecting him. So while I am grateful every day to his caregivers for their compassion and care of my father, I can't help being apprehensive about what feels like a new phase we're moving into. It hasn't exactly been easy going so far, but it feels like things might be about to get even harder

Christmas.

I've been meaning to post, plus I'm doing a little updating of my site, but then I got the sickness! That stuff takes you out...

Paul and I had a lovely Christmas Eve and Christmas together-we hung out all day in our sweats and ate and watched tv and read. It was great. It was nice to take the weekend for ourselves and just rest up and relax. On Monday, we packed up some clothes I had bought for Dad and a toy for the little girl who belongs to the live-in caregivers. She's two or so and just adorable. Apparently, Dad really responds to her.

When we got into Dad's room, he was snoozing in his chair, and he didn't wake up, even though we were being a little loud. I figured he must really be sleeping so I let him be, and we watched as the little girl opened her gift right at his feet. After a bit, Dad's eyes opened and he looked at me. People still ask me, all the time, whether I think he recognizes me, and I just cannot tell. Sometimes it seems like his eyes sharpen up a little, but I really don't know. I say that it doesn't really bother me, but sometimes it does, just a little.

Anyway, I said hello and said he was looking good and he even responded a little. I think he still has a store of phrases that he uses to answer something that sounds like a question. He really responded to Paul and I've seen that before. There's something about Paul's face or demeanor or voice that really catches Dad's attention, in a good way. And Paul's so great, he'll talk to anyone, about anything; usually he talks to Dad about our vintage Corvair.

So there we were, me, Paul, Dad, and a toddler, busy with My Little Pony, all enjoying a little time together after Christmas. It felt like Christmases of old, with wrapping paper and bits of toy scattered around the carpet. It felt good to be there with Dad- I have no idea how this year is going to pan out, or whether he'll get even more frail and unresponsive. This could be the last Christmas, and I'm glad we all got a little time together.

Christmas cookies.

Every year during the holidays, my mother made cookies. And we're not talking just two or three batches of cookies... My mother's goal was to make as many different varieties of cookies as she possibly could. I remember holidays with fourteen to fifteen different types of cookies lined up in colorful tins on the book shelf. We each had our favorites, of course, and quite often those tins would be empty by Christmas while others were still full. My Dad, in particular, liked peanut butter cookies with chocolate kisses baked on top.

Not being as dedicated, or crazy, as my mom, I usually make three types of cookies during the holidays; two of my favorites, and peanut butter cookies for Dad. Each year, however, Dad has been less and less aware of the holiday in general, and of cookies in particular. This year, as in past years, I brought over a box of my Dad's favorite cookie because I enjoy seeing him enjoy them. Unlike past years, though, this year Dad's caregiver had to feed the cookie to Dad while he sat on the couch, staring straight ahead.

I have no idea what his taste buds are like or what food messages are getting to his brain. It makes me sad to see that he can no longer feed himself, indeed seems somewhat indifferent to food. This whole process makes me sad, and the question always comes up; am I doing these things for him of for me? I can only hope that he enjoyed his cookie and on some level remembered them and the happiness of past holidays.