Thursday, October 22, 2015


I've just started following a Lewy Body dementia patient/caregiver group on Facebook and, although I am a member of Memory People, another dementia group on FB (doing great work, by the way), this LBD group is more specific to what I do and see and has allowed me even greater access into regular caregiver's experiences. People are dealing with heart-breaking daily events and challenges and are doing their absolute best in trying circumstances.

A very energetic and angry series of postings caught my attention the other day and it made me think yet again about how regular people treat caregivers and caregivers treat caregivers. The post-er was incredibly angry at what she perceived as yet another person commenting on her life, and that of her care receiver. Apparently this person had listened to her story in the store; the caregiver's older mother had LBD and was suffering. The listener commiserated but said she believed that her older mother was doing so well into her 80's, sans dementia, because she had kept her mind busy, had been social and engaged with others, had kept healthy with her diet and exercise, and was involved in social and domestic projects.

The caregiver was furious, not only at what she felt was a possible condemnation of her mother's habits - or her own dedication to her mother - but at the fact that she hears similar comments all the time; that if only her mother had been social, or mentally busy, or whatever, she would have been fine. That it was, in fact, her mother's fault. Many, many caregivers agreed and expressed their frustration at people - and the media - assuming that all of these poor people with dementia must have not kept their minds busy, or eaten the right diet, or did puzzles, or whatever. They commented on all of the incredibly smart people in their lives who were rocket scientists, engineers, writers, etc., who still had dementia.

I really understand their frustration. While it's true that keeping your mind busy and engaged, and eating the right foods, into your later age is helpful, its not a guaranteed ticket to non-disease. Dementia strikes the incredibly intelligent as well as the average, man and woman, young-ish and old. However, my dad, while an amazingly smart engineer, was also depressed, anti-social, and withdrew into his own world - so there is something to be said for the theories about keeping oneself engaged.

So what I guess I really want to advocate for is tolerance on both sides; caregiver and random stranger. I know it is so hard to have your life and work as a caregiver commented on by people who really have no idea; so maybe random strangers could think twice before making those comments. We all have the instinct to help by telling people what has helped us or people we know. Believe me, I've been the recipient of everyone's treatment for Rheumatoid Arthritis, and I'm sure I've turned around and done it to others. In Bereavement training, we learn to help people in a group say things like, "What worked for me is..." instead of, "You should..."

And, caregivers, maybe you could take a moment to be patient and educate these random people instead of getting so mad. Who knows, one day these people might be dealing with the same problems as you, and a little help from you years earlier might help.

Thursday, September 24, 2015

International Dementia with Lewy Bodies Conference - in Miami!

I know, I know, what caregiver has time to attend a conference for three days - or the money to pay for it? However, it IS in Miami, which is a great place to attend a conference, and since I've been helping to plan the caregiver side of things, you can be sure it's going to be good.

An interesting feature will be the scientists, who are there to present papers and talk to each other, however, several of them are being shanghai'ed to talk to care families and give the latest info, research, drug potentials, etc. Worth going for that! There will also be many - short - workshops, with plenty of time to rest and talk to other families in between, and lots of really interesting speakers, many of whom have been caregivers so they know whereof they speak. And, of course, the Miami sun - in December!

It's being hosted by the Mayo clinic and here is the web link if you think you might be interested. Go to the sidebar and click on the Patient and Care Partner Track.

Wednesday, August 12, 2015

New Places!

I've been looking for some new LBD blogs and groups; many of the ones I knew aren't current because the care receiver is gone and the caregiver has moved on to other things. Here are a few groups and sites I've found that you may not know about and I hope you find them as interesting as I do!
Also, there is an International Dementia with Lewy Bodies Scientific conference coming up in December in Miami that is including a two-day caregiver/care receiver track. I'm on one of the committees helping to plan it and it's probably going to be a great experience, full of the latest scientific info and research, and support. I'll be posting more about it as we get closer to the date.  This one is awesome, of course. This is a closed group so you must ask to be included but it looks great.

Wednesday, August 5, 2015

Tuesday, August 4, 2015

Twenty-five Years.

Sunday the 2nd was the 25th anniversary of my mother's death. It was a hot, muggy afternoon and evening, just like the one the night she died, and I thought about my 19 year old self, sitting on the floor by the couch where she lay, reading late into the night and watching over my mom. She went fairly quickly, but I'll never forget her last, struggling breaths - wheezing and choking. I've since learned in my training that this is called Cheyne-Stokes respiration, and it is very common before death; it is labored and gasping.

I'm thinking about this also because a few weeks ago, I was sitting with Dad and he was sleeping in his chair. He was exhausted because earlier in the morning, his caregiver had urged him to walk around the house and visit with other residents, and I think it really wore him out. Even benign activities like these can be incredibly wearing to someone with dementia, and he looked done in. His face sagged, his body twitched, and I found myself watching his chest for his next breath - not something I usually do!

It occurred to me that he could die right then, after fifteen+ years of dementia and illness, this could be it. It was unsettling. Dad has been hanging on so long that I forget that at some point, probably sooner rather than later, he's going to go. I will be happy for him when it happens since I know he wouldn't want to live like this, but it really woke me up that it could be sooner than I think, and I'd better start preparing, emotionally, for the end of my father and the end of my care of him.

Fortunately, this weekend, Dad's house had their yearly barbecue and my sister, my dad, and I were all together for the anniversary of my mom. This is not something that happens often, all of us being together, and it really made me feel good. I was glad to be with my sister and my husband and my father and all the residents of the house, eating chicken and salad and enjoying the sun. I think our lives would have been incredibly different if my mom had remained alive, but I hope she was looking down on us this weekend - glad that we were all together.

Wednesday, July 15, 2015

Does the Story Ever Change?

This winter, I read the memoir written by Stephen Hawking's ex-wife, Jane, about their life together, their family, and the progressions of both his disease, and his fame. It was fascinating, not only because he is a fascinating man with an amazing brain - and illness history - being one of the few people who has survived so long with ALS, but also because of her, and her story. I ended up reading it from the perspective of a caregiver because so much of their story was about what she gave up to care for him, and it mirrored so much of what I see with caregivers and the elderly today.
By the time they married, he was already suffering the effects of his illness, and she took him on knowing it. However, at the time, doctors thought that he would only live a handful of years and die young, so I imagine she thought it was worth the extra effort of a husband with such a serious illness - wanting to have time with him even though it wouldn't be long. Instead, he ended up living, for forty years, with all the attendant difficulties, symptoms, and struggles of his illness - and she became his caregiver.

It broke my heart to read about how much she took on, and how long she managed their lives and his care, without much help. People assumed she was coping, and didn't offer help - even his own family didn't think she needed assistance; social structures assumed they had money because of his fame, and wouldn't help very much; Hawking himself refused to accept care from anyone else except her, and was in denial about how much care he actually required; and she had to fight for every bit of assistance and money they received. She ended up almost destroying her own health for his care.

Granted, this all started back in the sixties and seventies, before there were laws about disability access, and much support for caregivers. However, it struck me that things don't seem to have changed that much, even though we're in a century of miracles - the Internet, people living in space, instant connection around the world, and other technological marvels. We still live in a culture of assuming the family will care for the ill and elderly without needing outside help; expecting people to spend their last dollar before social help will kick in; and, it seems, willfully ignoring the massive challenges and struggles that caregivers face. It is unfortunate that things have changed so little in the last fifty years.

I do see changes that are being made, programs that are coming on line to help caregivers, organizations formed to fight for them, and provide services. The effort is just so woefully behind the problem, though, and I still see caregivers going under. We need more stories like this, to show in plain language the toll that caregiving takes on a family: policy makers and politicians need to hear these stories, so tell yours whenever you have a chance. Go to and tell them your story - they'd love to hear it, and they will use it to help make as many changes as they can.

Tuesday, June 16, 2015

I Volunteer!

I have had a chronic illness since I was 21, and it has completely shaped my life. I wasn’t able to have a full-time career, I always have to negotiate what I want to do with how much energy I have, how much pain I’m in, and whether I’ll have the stamina to finish whatever it is. This is not an easy way to live but I’ve made my peace with it – for the most part.
The one place where I’ve had the most trouble, and I write about this in my new book, is the feeling that I’m not living up to my full potential. I have a lot of mental energy and focus, but I don’t have the physical vessel through which to channel it. I have had a lot of part-time jobs, or customer service jobs that don’t require an excessive amount of time or energy. The one profession I have had, I had to give up, even though I loved it and was good at it – therapeutic massage. I have struggled with my self-esteem and with wondering what I could do to make my mark, or use my mental abilities.

Taking on Dad’s care was definitely a time and energy commitment, but I was fortunate in that he could afford to pay me and other aides to care for him. I was able to quit the job I had at the time, and take him and his business affairs on as a full-time job, without the full time hours. I thank the Universe every day for this opportunity because I don’t know what would have become of us if he hadn’t been able to pay me. I doubt I would have been able to do as much to help him – and we may have had to ask the government to step in.

Once I had placed Dad in a loving Adult Family Home, I had a little more time and energy to once again feel the pull of doing something, being something. I also wanted to serve in some way since I’d been so fortunate in my financial freedom. I decided to volunteer and it has been the smartest thing I’ve ever done. It has given me a purpose, a vocation, and sometimes a reason to get up in the mornings, stretch my sore joints and get going.

Now I know, more than almost anyone, what it is like not to have the energy or the time to do what we need to do, let alone what we want to do. If you are a full time, full-on caregiver, I know you don’t have the time to spend time with yourself, let alone volunteering. But, if you are doing it part time, or your loved one has been placed in a facility, or has died – you might want to consider volunteering. Whether it’s with an organization that represents the illness your loved one has/had, or another cause you feel strongly about, or your local food bank or other charity organizations.

I started out with hospice work, then switched to bereavement counseling, then to the Lewy Body Dementia Association as a call counselor. (And the best thing about that last one was that I could make calls from home, so I didn’t have to wear myself out going somewhere!) I really love being able to be of service to others, and I hope I’ve made a difference in some lives. If you have the time, or are facing the next stage of your life, I hope you consider volunteering – there are so many organizations and foundations that would be overjoyed to have your time.