Thursday, August 30, 2012

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. for more information.

Monday, August 27, 2012

Another Honor!

I submitted a story recently to in hopes of having it published in their latest collection of essays and artwork by caregivers. The theme of the collection was Forgiveness, and I was thrilled and honored to have it accepted and published!

In addition, I will be a guest on a live web discussion with the founder of I'm so excited and grateful for this opportunity! All details are below, please tune in!

"The proceeds of our book sale go toward our CareGifters program, which funds caregiving solutions, one family caregiver at a time.

The cost of the ebook is $5. You can ask family members and friends to purchase their copies here:

The print version of the book is also available. You can purchase the print book here:

And, please be sure to rate and review the book; we'd love to know what you think. Just go here to share your feedback:

Trish, who compiled, created and edited the book, will be my guest on Your Caregiving Journey on Thursday at 11 a.m. ET. We'll be joined by two of the book's contributors, Kathy and Joy. You can listen to our discussion here:"

Tuesday, August 21, 2012

Surgery and Dementia. Bad?

Here's another great post from the blog They have some really great information and his stories are thought-provoking. This one in particular is an issue I've been pondering lately - the effect of anesthesia, hospital stays, and surgery on dementia patients. Read away!

My Dad had surgery for an infected boil three years ago. I happened to be out of town for the surgery and the short hospital stay, but I was able to come see him about a week after the surgery. He looked pale and drained and flat, somehow and as if he was even more out of it than normal. I remember thinking to myself, "Boy, he looks like he's been through the ringer." I could tell that the surgery had really taken it out of him, and he doesn't have that much left to take - he can't spare anything!

A year and a half ago, his caregiver found a double hernia which was making him uncomfortable so we took him to the doctor, who scheduled a surgery, outpatient, to take care of it. As Dad was in the Recovery Room, he looked bad, of course, and I didn't think much of it, but, when I saw him a few days later, that same feeling struck me. I could see that he had lost even more ground, that he wasn't the same person that he was even a few days ago, and that once again, the surgery had taken something out of him.

I made the connection at the time, that it was the surgeries and illnesses, of course, but it wasn't until my research lately into the effects of surgery and anesthesia on LewyBody sufferers that I really realized what had happened to him. It has been shown how badly certain anti-psychotic drugs, anesthesia drugs, and the surgical process can affect LBD - in some cases drastically. Sufferers can come out of surgery paralyzed, rigid muscularly, and with even more mental compromising. It's not a good thing and if I'd known that, I may have made different choices about Dad's surgeries, although in both cases it was kind of necessary. Have you seen something like this? Before having any procedures, look at the information and then make your choices!

Wednesday, August 15, 2012

Book Review!

I just read a book called The Good Caregiver, by Robert L. Kane, MD. It wasn't bad, it had all the standard information that books like this have, including a quick chapter on how to avoid caregiver burnout.

It had some stories from caregivers and their experiences with the medical world, caregiving, and the disease which were entertaining and important. There was some information on medications and their effects, some legal information, and some housing information. Nothing I've not found before in a, frankly, more engaging format.

This might be a good book to give someone who's curious about what you're going through, or someone who sees it happening in their life in a few years. It's kind of Caregiving-lite.

Thursday, August 9, 2012


I have a link to this site on my sidebar, but they're doing some great work, so I thought I'd feature them. Their new CareGifters program is such a great idea: caregivers write in with challenges that they are facing, the site will choose a caregiver and give them money to try to help resolve one or more of the challenges. They raise money through donations, but they also invite visitors to the site to send in essays about their experiences. These essays are made into books that are sold to support the program. I think this is such a great idea, so I encourage you to check out the site, which has lots of great blogs and connections, and see what you think! features the blogs of family caregivers, weekly words of comforts, free webinars and online support groups. Visitors also can join the site’s Caregiving Happiness Project, which looks to determine if small, daily changes can add happiness during a difficult time in life. A campaign featuring the stories of former family caregivers called You’ll Be Okay debuted on the site in November 2010. also holds online events that entertain, encourage and provide an opportunity for a virtual escape. We regularly take breaks–for fall, winter, spring and summer. During our breaks, we take time to reflect on what’s going well in your caregiving role and what needs tweaking. In September, family caregivers of all ages show off their creative side in our Caregiving Art Show. In December, we sponsor a Holiday Progressive Blog Party.

In March 2011, Denise launched CareGifters, an initiative which funds caregiving solutions, one family caregiver at a time. Recipients of CareGifters donations detail their three challenges and then receive money to resolve or minimize at least one of those challenges.

You also can listen to Your Caregiving Journey, our Internet talk show, which delves into discussions about your caregiving role.

About Denise M. Brown, Owner and Operator
Denise M. Brown debuted in 1996 and launched her first online support group in the fall of 1996. She is the author of five books:

Monday, August 6, 2012

What an Honor!!

I've just been named as one of's 26 Best Blogs of 2012!! I am SO honored, what a great way to be recognized. My goal has always been to share information, empathy, and comfort with other people in a similar situation, especially caregivers, and I'm so pleased to have done that in a small way. Thank you to everyone who visits, reads, and comments - I'm honored to have you!

Here is what had to say about my blog:

"From caregiving to cleaning house, blogger Joy Walker invites readers to join her on the journey that became 3 Years and 13Dumpsters. Moving and fun, this blog combines the joys and trials that occupy the life of a caregiver or family member of a dementia patient.

A blog is only as good as its creator, and this one shines with creativity, talent, and substance. 3 Years and 13 Dumpsters is a gem, complete with comprehensive resources for others seeking support for Lewy Body Dementia and Alzheimer’s caregiving. Join Joy as she learns even more about living, loving, and Lewy Body Dementia."

There are lots of other amazing blogs on this list and I encourage people to visit them for great info and support.

Saturday, August 4, 2012

Twenty-Two Years and Counting.

Tomorrow is the twenty-second anniversary of my mother's death, conveniently commemorated every year in Seattle by the festival of SeaFair, or, more specifically, the hydroplane races at the END of SeaFair. A loud, gasoline-lakewater-and beer-soaked explosion of debauchery and testosterone that occurs at one end of Lake Washington on the first Sunday in August. Oh, and don't forget the Blue Angels performance, which I actually kind of like because my Dad loved the planes and the noise they make in your chest as they fly right over where you're standing (but which every commuter in Seattle hates because they mess up the traffic while practicing for three days before the actual celebration). My husband and I hate the whole thing so much that every year we swear we're going to leave town for the duration just to avoid it. Yes... that. Good times.

When I was in High School, I loved SeaFair because we went out there on my friend's boat in the blazing sun and watched the stupid people floating on tiny, deflating rafts get drunk and sunburned. But I stopped liking it the night my Mother died, in our house, with my Sister and I beside her. Hours after the races were done, of course, but never to be forgotten. Although she had deep, angry issues, and problems we were only just becoming aware of, she was also a good mom and wife, and we lost her that night. You just never quite get over a thing like that - and I don't think my Dad ever did. I think a part, a very large part, of him died that night with her. And not just because he loved her so much, although he did. And not because she was his whole psycho-social life, although she was. But also because what he thought his life was going to be, for the next fifty years or so, died with her, and he didn't have the internal resources to deal with that. I think it was just one blow too many, and from that day, he started to withdraw; from work, from us, from life, and finally, from himself.

Unfortunately, that left my Sister and I to struggle on as best we could. We went back to college, picking up our lives again, but without the central planet around which we all orbited. We would never again follow the neat, safe celestial path we had been privileged to follow before. Both our paths would become harder and harder, until mine nearly killed me; and still, my Father sailed serenely further and further into the black, until there was no coming back. The point of no return had been reached and passed. I grieve for that, and for him, but it also makes me very, very angry. There were several times in my life when I could have used the parent I had left, but he just couldn't be there. No matter what has hit me, I have always fought on as best I could, and part of me can neither understand nor condone how he could just give up like that. You can't truly know another person, though, and I will never really know what was between the two of them, nor what happened to him on that heavy, hot night in August, twenty-two years ago.

Here's to you, Pat Jackson, twenty-two years late - gone but not forgotten. We loved you and we miss you, and I hope you're up there somewhere, laughing, and watching the Blue Angels tomorrow.