Comparing Pictures.

There are two pictures hanging on the wall next to the chair where Dad now spends most of his time. The pictures are very similar, both are of my Dad on his birthday, with my sister and I seated on either side of him. The bottom picture was taken when I was about seven or eight and my sister was nine or ten. I have pony tails and bangs and my Father looks young and happy, with a homemade cake on the table in front of him. The top picture was taken years later, when I was seventeen and my sister was nineteen and at college. We look older, my hair is shorter and my face longer, my sister more sophisticated in her appearance. My Father, however, looks almost the same, another homemade cake in front of him, just with more candles.


I visited Dad today to see how he was and to drop off the zucchini bread I made for him. His caregiver pointed me toward his room, indicating that he was snoozing in his chair. When I asked the caregiver how Dad had been, he said that everything was fine, my Dad was eating well and such, but that he was much more wobbly on his feet; moving very uncertainly, and even seeming to prefer sitting down, which is so unlike the Father I knew. I walked back to his room and quietly sat down next to him, as I didn't want to wake him up.


As I sat there, my eyes were drawn to the pictures, which I'm so familiar with, having seen them in our house forever. I compared my sister's two faces, and my two faces, enjoying how young and happy we looked. As I look at Dad in the pictures, however, I can't help but look at this actual face, almost right next to the two photos. In a way, he doesn't really look that much different; his hair is still thick and wavy, although gray, and I've noticed before how his skin is fairly smooth and unlined, a result, I sometimes think, of the lack of worldly stress for the last ten years! And then he woke up, and I couldn't help but see that there were many, many differences.


His face was almost expressionless, eyes dull, cheeks and mouth a little slack. He has a flat affect, in the jargon of dementia. His hair is rumpled and too long, although his face is as clean shaven as always. He twitches periodically now, which looks uncomfortable, and reaches up to scratch his head fairly often. Birthdays no longer matter. As he turned to look at me, his expression didn't really change, although his eyes sharpened a little as he registered the presence of someone else. I smiled and spoke to him and told him I had brought him some zucchini bread, and to my surprise, he repeated the word, zucchini, as if he remembered what that might be or taste like. He smiled a little at the same time.


I spoke to him for a bit and then he dozed off again and I was left with my sadness that my smart, super healthy and active, mechanically capable Father - in the pictures, so happy to have his girls around him, another birthday celebrated - is here quiet, no longer wanting to walk, content to sleep for hours unmoving.

I'm A Webguest!

Once again Caregiving.com was kind enough to ask me to be on their regular Saturday morning webcast about the Caregiver's Journey. This morning I dragged myself out of bed at six o'clock for a seven o'clock start time (ten o'clock Chicago time!) and had a lovely conversation with Denise Brown about how it all started with me and Dad and how life is now.


Denise is such a thoughtful and generous host, who really asks the pertinent questions and she is helping me get my message of caregiver advocacy out there into the inter-sphere!


Thanks, Denise, and everyone please head over to Caregiving.com for information, support, and ideas about how you can help the caregiver or caregivee in your life. Even if you don't know a caregiver, you can help one by donating to the work that Caregiving.com is doing.


I invite you to listen for yourself to how good (or bad) I sound at seven o'clock in the morning!
http://www.blogtalkradio.com/caregiving/2012/09/22/table-talk-joy

Zucchini Memories.

I make, if it is not too arrogant to say it, very good zucchini bread. In fact, the goodness of my bread is well known in my little community and when the end of summer rolls around and zucchinis are available, people start to inquire casually whether I've made any zucchini bread, whether I intend to make any zucchini bread, and whether, if bread does exist, they might have some of it. When I make it, I use the same recipe my mother used, years and years ago. It is said sometimes that when you cook or bake, you're not just creating food, sometimes you're creating memories, which I would have to say can be true.

I like making zucchini bread because it reminds me of my mother. My mother hated to cook but inherited a love of baking from her father, and one of the things she baked every summer, using her home-grown zucchinis, was bread. I'm not the world's biggest fan of the actual zucchini, but I do love z. bread, hers especially. Her bread figures strongly in my summer memories of dinner picnics in parks, the cold slices of bread thickly spread with butter, eaten with some sort of protein and a salad, or something. I just remember it so clearly; and my father loved her bread, too. So I think about her every time I make it.

I usually make a double batch at a time, which means four loaves, and I'm planning to take a loaf over to Dad's home for them to give him as a snack or dessert. I suppose I should be kind and tell them they can give it to all the residents, and I probably will. But something in me wants to say that it's for Dad and Dad only, and that he likes lots of butter on it, just like years ago. I don't know if it will spark the same memories in him that it does in me; or any memories at all, for that matter. He'll probably just enjoy the taste and not think anything at all.

But once again, I'll be the one holding all the memories for the both of us, which is a really hard job. I like to imagine that all of us who give care think several times a week, if not more, that we don't want to be the memory holders anymore - we want our loved ones to remember on their own! A wish that will never happen. We are the ones who have to be two; carrying our own dreams and memories, and those of our loved one. For the rest of my life, I'll be carrying the zucchini bread memories for the both of us. All he has to do now is enjoy the bread part.

Book Report! (It is back to school!)

I just finished Scared Sick by Robin Karr-Morse and Meredith Wiley. It was amazing and so sad. It tracked childhood,in-the-womb, and even generational trauma and it's effects on health later in life. Every physical problem I have can be accounted for physically because of emotional trauma in my childhood and a lot of diseases like obesity, diabetes, high blood pressure, and Alzheimer's and dementia, etc. in mid-life are traced back to these problems.

They also highlight what problems will be caused in our society in the future if we don't identify children being traumatized, abused, and neglected and heal them. We need to address these problems!

Even if you don't have any illnesses, this is a fascinating book and I learned a lot about the autonomic nervous system, the Vagus nerve, and other really interesting brain and nervous system functions. I highly recommend it.

Event!

This woman is amazing! If you are in the area and can go to this, I highly recommend what she has to say and teach.

The Lewy Body Dementia Association and Arbor Terrace present two free seminars in Atlanta, GA (one for Healthcare Professionals and one for Caregivers and Families) designed to help participants understand the progression of Lewy body dementia and associated behavioral changes, as well as equip participants with effective ways to communicate with those affected by the disease.


Presented by:
Teepa Snow, MS, TR/L, TA OTA
Teepa is a nationally recognized dementia care expert and a consultant for Arbor Terrace communities through The Arbor Company. Originally trained as an Occupational Therapist, Teepa has worked at the Alzheimer's Association of Eastern North Carolina, the Duke University, School of Nursing, and the UNC School of Medicare during her more than 30 years in geriatrics. Her presentations are dynamic, interactive and informative.

Date: October 2, 2012

Location: Druid Hills Baptist Church
1085 Ponce de Leon Avenue, NE
Atlanta, GA 30306

Expertise.

When I think about it, it's actually quite funny. I am an expert on a subject (or several small sub-subjects under a subject heading, if you can even say that.) that I never expected to be. I have become well-versed and knowledgeable on the subject of Dementia, and it's sub-headings of Lewy Body, caregiving, the elderly, end of life issues, hospice and palliative care, grief, loss, and bereavement. I don't think it's the kind of thing a little kid says they want to do when they grow up - it's certainly not glamorous, but I think I'm happy to own it.


Whether I'm a guest on a webcast about caregiving, or I'm counseling someone I am struck by how much knowledge I have amassed, how many resources I can put my hands on, and just how much personal experience I've actually had. It's really only the second thing in my life that I've been this well-versed in, this confident in my skill set. It's one of the few things in my life that I've been really, really good at, if that doesn't sound too weird.


I imagine that a lot of my fellow caregivers,family members of dementia-sufferers, and folks who've lost a loved one might feel the same way. I've read several books now written by the spouses or caregivers of people with dementia, and it's a pretty constant theme; the fact that, after the initial shock, they've become an expert in an illness they probably had never heard of, but now could tell you everything about! Once again, not a thing they would probably prefer to know so much about. But they did it because they had to, there was no other choice, in their opinion, and I know how they feel. I bet their charge was thankful that they had someone so strong and knowledgeable on their side.

I can't say I would have chosen this as my field of expertise, it wouldn't have been my first choice in pastimes. It has, however, given me a purpose that has more meaning and importance then many of the careers I could have chosen, and for that, I have to be thankful. Because of my hours of research and study, my experiences with my Father, and the training and mentorship of compassionate experts, I've been able to be of service to families and caregivers. As much work as its been, I can actually say I'm grateful, because if there's one person who needs, deserves, actually, as much help and care as possible, its a caregiver.

The Body's Stories.

I was a guest on a lovely webcast this morning, telling my story of being a caregiver, the rewards and challenges of caring for my Father, and coming to terms with things that he did to me as a child that have affected my adult life. As a result of maintaining my blog, and being asked to participate in the webcast and other publications, and working on my new book, and talking to all the people I've been running into lately who have a caregiving story, the story of being my Father's caregiver and the reality of what I went through and continue to go through is really in the forefront of my mind. And it makes me remember the events from the beginning, and ponder on what a different person I am now, and what, and who, participated in making me the person I am today.

I became a person who was willing to let go of control, and mend my relationship with my Father, and grow emotionally as a person. I wasn't able to do this all on my own, however; I've done much of it with the help of an amazing somatic therapist. I truly don't think caregivers can do the work they do and stay reasonably sane and healthy without at least the help of family and friends, but at best, with a good therapist. I participate in a type of therapeutic bodywork called SPRe, or, Somatic Pattern Recognition, and it has changed my life - for the better.

How many times as a caregiver, have you been triggered by something your loved one did or said, that probably wouldn't trigger a professional caregiver; and felt your guts grow upset and acid? How many times have you felt anger and resentment that you are giving so much time and energy and care to a parent who didn't really care for you as a child; and felt your back go out? How many times have you watched other family members leave the work to you, or refuse to visit your loved one, or maybe criticize the care you're giving the one time you show up; and felt your jaw tighten and crack so you didn't say the hurt words you wanted to say? All of these things happened to me, they were part of my body's stories, along with a lot of other unpleasant and painful holding patterns, both emotional and physical.

We all keep traumatic or painful events locked up in our body's tissues, so that when a situation duplicates what we've experienced before, that somatic dysfunction comes out as pain, or holding, or weakness. We keep these same emotional tangles in our minds; old belief systems and patterns, things other have told us or we've told ourselves, old stories that keep us from moving forward and discovering something new. These are the body's stories and it is up to us to stop ignoring and stuffing them down, listen to them with respect, and help them heal.

I had plenty of these physical issues, emotional patterns, and family trauma, and I began working with them before I had to care for my Dad because I wanted to do something differently in my life - I wanted to get rid of old patterns, find out where they were from, and then start new. My therapist, Jill Ableson, began to help me do exactly that, by working with my body and my emotional state simultaneously, healing me from the inside out.

When the time came to care for my Father, she helped me navigate the emotional minefield of caring for a man who never cared for me. She helped me learn how not to be triggered by his behavior and words, and she helped me learn how to let go of trying to control others and their behaviors, teaching me new ways to be in my body and new emotional ways of coping. Most importantly, she helped me not to disappear into my old patterns and ways of being so I could be the healthiest person for myself and the healthiest caregiver for Dad.

I firmly believe that every caregiver needs some sort of therapeutic support, because even without old and outdated family ties and patterns and ways of being, this would be a tough job; its only made more difficult by being family. You need someone who understands and can give you the necessary tools to create something new for yourself and often for your family. I don't believe that you can separate the mind and the body; each must be held, listened to, and changed together for true healing to happen. I am grateful every day for what SPRe has brought into my life, and how it has changed me for the better. You don't have to suffer emotional and physical pain, especially when it is worsened by caring for another. There are ways to heal your body's old stories so that there is room for new, brighter and more functional ones.

www.sprebodywork.com for more information.