Saturday, October 27, 2012

Halloween Memories.

It's Halloween, one of my most favorite holidays, and it always makes me think about both my Mom and my Dad. I used to love to dress up and every year, months in advance, I would decide what I wanted to be and my Mother would make my costume. It was pretty amazing now that I think about it - she was very creative and could put together most of the costumes I asked for. Granted, I usually wanted to be something like a gypsy or Indian princess, or something, but it was still pretty fantastic. I used to love the way Halloween let you be different than you were; you could be anything or anyone you could imagine yourself being. In Third grade I was Wonder Woman, complete with eagle-covered, red bustier, bracelets and lasso. It was great - god, I loved that costume! One year she transformed my sister into Princess Leia with a silky white, seventies-style dress she had, a silver belt, and even the two hair rolls.

Mom actually loved Halloween, every year for dinner, she made hotdogs and her special donuts, with apple cider. She would make sure I got my costume on, including the layers of tights, long sleeve shirt and even jacket, that no kid wants to wear, but which every mom insists on, because for heaven's sake, its cold out there! My Mom was very petite, about 5 feet tall, with little hands and feet. She was so small, and she loved Halloween(and candy) so much that she would dress up, making sure to cover her face and hands, and go trick or treating herself! Occasionally, Dad and I would see her going from house to house and he would never admit that it was her, even though I was sure it was. It was just one of the funny things she did.

Every year, I would wait for my Dad to get home, and he would take me and my best friend out trick or treating. We lived in a neighborhood on a really steep hill, and we would gradually make our way up the hill, stopping at each house. It was a special thing that we did together, something that didn't happen often since he was usually so busy with work and other things. I think Dad really enjoyed taking me out and seeing me knock on each door while he waited at the end of the driveway, and I knew that for at least that one night the dark moods and depression and disappointment he felt so often through the rest of the year would be banished and we would have fun, and connect.

When my stepdaughter was little, I loved to take her trick or treating every year. We had so much fun and it was a way for me to connect with my Father and the fun we used to have as we went from door to door, saying the traditional words to fill my bag with candy. My mother is gone now, and I never miss her more than on these holidays that she made so special. My father is still with me, in body if not in spirit, and although I'll go see him on Halloween to bring him some little candy bars, the man who used to keep me safe in the darkness as we flitted from house to house is gone.

I have complicated and sometimes ambivalent feelings about my childhood and my parents; things were often very dark and confusing for us. But I'm so glad to still possess these moments of gladness and fun, these memories of how my parents tried to be there for me, in ways as simple as making a costume and taking a little girl trick or treating.

Friday, October 19, 2012

A Big Thank You.

The past few weeks, I've been looking into who is looking at my site, how often, and where people are coming from, as Blogspot keeps these stats for me, and I've been amazed at what I've found. Traffic is coming from all sorts of places I would never have expected!

I'm getting a lot of visits from people who are finding a link to me thanks to big sites like, Healthline, and the LBDA site, and I'm grateful for that. A few individuals have recommended my site on some other big health and dementia sites, and that's always nice to see. What really surprised me was finding myself mentioned in a blog belonging to a hospice organization in Santa Fe! They're doing some great work and I'm honored they saw fit to put me on their site.

Even more gratifying, however, is what I'm finding from individuals who are appreciating what I have to say. I just found out that some people have pinned my site and book on Pinterest, which I have to admit I'm largely clueless about, but what an honor! And, of course, people are very kindly linking to me on their blogs or websites, which makes me feel even more that we're all in this together.

Thank you so much for your continued attention and support, and for helping me get my message of hope and caregiver support out into the world a little bit more. You rock!

Tuesday, October 9, 2012

Generation X.

A few weeks ago, I was once again a guest on's Saturday webcast, A Caregiver's Journey. My lovely host, Denise, had me tell my story from the beginning; including when I first started taking care of Dad and how it was to be his caregiver, even though he and I didn't have the best relationship. Something she asked me about has been sticking in my head ever since.

I had mentioneI d how young I was when I had to take charge of Dad, only about thirty-three. I went looking for a book or some other form of information to help me out in my grief, but also to help me do a job that usually falls to people much, much older. One usually expects to begin worrying about one's parents and their health at fifty or sixty, when a parent is perhaps seventy or eighty. It isn't all that common yet to have to do it in one's thirties, and all I could find were books and information aimed at the fifty and over crowd! There weren't even any support groups I could find with members in my age group.

I told Denise that this lack of information and support was one reason I had written my book, so that I could share what I learned with other people in my situation. Nobody expected Generation X would have to deal with something like this! I've read a lot of memoirs, books of advice for caregivers, and combinations of the two, but I still have yet to find one that's truly for a younger audience. Unfortunately, since the increased advent of early-onset dementia, it's an audience that will continue to grow. In the past few years, I've talked to more and more people my age who are taking on extreme burdens while still building their own lives.

For the most part, caregiving, in general, is the same the world over, and we all have to deal with the same or similar issues. It's always comforting, though, to feel that you're being understood by someone in the same peer group, someone who understands the specific feelings and issues you feel. I wish I'd had that when it really mattered, although I got through it the best I could. My goal now is to help as many caregivers as I can, especially the younger ones.

Thursday, October 4, 2012

Finding the Energy.

My health lately has not been as good as I would like. I've been transitioning between medications, and I feel like the last few months I've really been put through the ringer. (Not unlike Dad after his last surgery!) It's meant I have more pain and less energy and capacity to deal with my own household tasks, interests and needs, let alone for Dad's, but I'm still doing my best to visit as often as I physically can, and, of course, I still perform all of my clerical and managerial duties for him. I think how much harder things would be for me if I was caring for him physically.

When I talk to caregivers I know, I hear more and more often about new physical challenges they are facing due to the almost overwhelming responsibilities they have. When there is too much to be done, too much stress, too much physical and emotional exertion, the body and mind breaks down, and the caregiver burns out. Too accustomed to putting others' needs before their own, caregivers are far, far too susceptible to high blood pressure, diabetes, the flu and colds, and autoimmune diseases like my own. It's becoming a new epidemic.

I know from personal experience how difficult it is just to take care of your own life when you have a chronic medical problem. I also know how difficult it is to take care of yourself and your own life AND someone else's since I did it fully for two years, and do it in a modified fashion now. I know the kind of choices, or lack thereof, that caregivers feel they have, and the compromises they must make and yet I still say these things over and over to the people I counsel.

You must take care of yourself! Who will take care of your charge if you are unable to do so? Your life matters exactly as much as that of your charge! You must find a way to get exercise, eat better, get some respite, get some counseling so you have someone to talk to, do something you love to do, help yourself! There are ways to do this, resources you can call, moments you can steal, even if it means (safely) shutting your charge in their room for a while. They'll survive! But more importantly, so will you.