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.

Monday, June 1, 2015

What to Do, What to Do?

It's Summer again, and it looks like its going to be a great one. This is the time of year when we want to go outside, do fun stuff, and generally enjoy our world. When you're a caregiver, it can be hard to find things to do with your loved one, either because it's not safe, or you've just run out of ideas.

Summer was always the best time for me and Dad when we lived together. He could swim in the lake, we took lots of walks at the various parks in our area, we even went biking and rollerblading a few times! He's too frail to go out much now but I do still really enjoy when they take him outside to the patio to enjoy the sun, the fresh air, and the gorgeous flowers at his home.

If you are struggling to find things to do with your care receiver - and they are still mobile - keep it simple. Take a walk or an easy hike, feed the ducks, go canoeing, plant a container garden, or visit one or more of the tourist attractions in your area. There are more and more Alzheimer's Cafes in bigger cities. It may surprise you to know how many programs your local county, city, or Parks Department have that you could do together. I also highly recommend Judith Levy's excellent, Things to Do With Your Parent Who Has Alzheimer's Dementia.

Whatever the level of ability of your care receiver, try to find something fun and interesting you can do together, or something you can involve them in so you can have some valuable time off. But if, like my Dad, your care receiver isn't able to do much, don't underestimate the value of sitting together outside, with a cold drink, fresh air, a garden... and your cowboy hat.

If you are in the Seattle/Pacific Northwest Area:

Seattle Parks and Recreation has several great programs, including volunteering, farm visits, zoo and other walks and fitness. They sound amazing! Contact Cayce Cheairs at or 206-615-0100

Alzheimer's Café's,

Tutta Bella Pizzeria
4918 Rainier Ave S., Seattle
Second Thursday 3:30-5:00

Luther's Table
419 S 2nd St, Renton
Third Thursday 3:30-5:00

Friday, May 22, 2015

Best Of!

Thank you once again to for voting my blog one of the 25 Best of 2015! What an honor to be consistently included in this talented group.

I urge you to check out the list of blogs since there are a few different ones this year. I am also heartened to see that there are a few Lewy body blogs - more than I have ever seen before.

Thank you to Healthline for making us bloggers available as a resource to your readers!


Thursday, May 14, 2015

The Symptoms of Grief.

I've been co-facilitating another Grief group through the hospice organization I volunteer for. The participants of these groups are always so different in terms of age, and which of their loved ones died, and how. The thing that unites them, of course, is that they are grieving a loss. We have an even mix in the group of those who have lost a spouse and those who have lost a parent; however, all of them died after some sort of illness, and most of them were on hospice at time of death. I make this distinction because we have had people with sudden losses, accidental or otherwise, and it can make a difference in the grief, to a certain extent.

I've done these groups before, and I tell my husband a little bit about them in the six weeks they usually last. The other day, though, he asked me why people attend the group, which I thought was an interesting question. We don't talk much about grieving and loss in this country, which is to our detriment, I think. Unless they have done some research or reading or been exposed to grief before, most people don't know much about it, or what it looks like, or the course it can take. They can be confused at some of the things they think and feel after a loss. They can also be confused, and sometimes angry, at the response they get from other people, even those closest to them.

We don't teach people that there is no "normal" when it comes to grief. Pretty much everything that people feel is a part of grief. We don't tell people that grief can be a physical process. It can make you feel exhausted all the time, it can give you energy, it can make you cry a lot - or not, it can make you feel achy and sick, spacey and forgetful and disoriented. It can make driving difficult, or doing other tasks, or keeping a schedule - some people have said that they drive right past their houses, miss appointments, and forget how to do things they've done forever. Different people handle grief differently; some may find they get through the process quickly and get back to function, others take longer.

We talk about "ambiguous loss" and anticipatory grief, which essentially means that people have had at least a little time to prepare for the loss and start their grieving process. This can be helpful but it doesn't mean that they won't feel strongly when the actual death occurs. Loss can also bring out anger - at the loved one, at God, the family, doctors, or friends - and guilt at being the survivor, or because one feels they didn't do enough somehow. We also don't realize that our roles will change after a loss. We may lose roles we held, such as caregiver or spouse, and take on new ones, such as new head of family. We also may have to take on the tasks and specialties that the loved one did, since they are no longer there.

Unfortunately, we also don't teach people how to respond when someone they know suffers a loss, which leads to confusion and distress when the griever doesn't feel supported. People often don't know what to do, or how to help, so they disappear from the grievers life. Alternatively, they may be over-helpful, or bring up their own experiences with grief, or have too many suggestions on how the griever should be feeling or what they should do. People often feel uncomfortable witnessing grief and may want the griever to "be strong" or "get over it" - basically to be the person they used to be. I tell everyone who asks that the best thing you can do for a friend who is grieving is just to be there: be the voice on the end of the phone; sit quietly with them and listen to anything they have to say; make concrete offers of help and then follow up.

The more we talk about grief and loss, the better. Grief groups help people talk about their grief, their loved one, and their lives moving on. Groups help give people the tools to work with their grief, and all future losses. And, I realized as I answered my husband, learning about their own loss and what grief looks like, means they can spread the word and help the next person who suffers a loss. It feels good to be training unofficial grief counselors, who can help spread the word about grief and how to deal with it.

Friday, May 1, 2015


It’s been a long time since I cared for Dad on a day-to-day basis; something like eight years now. Time, of course, blurs events so that when we look back on them, it’s hard to remember exactly what we felt or experienced at the time. I tell stories about me and Dad and what happened, but they’ve become flat narratives for me and they don’t really affect me anymore. Every now and then, however, usually when I meet a caregiver who is right in the thick of the tough stuff, I remember all the feelings and things I went through.

I used to spend from Sunday afternoon through late Tuesday evening with Dad, living in his house, responsible for his well-being, entertainment, and physical and mental health. He was still fairly lucid, and could still take care of a lot of his own self-care, but I cooked, and drove, and cleaned, and shopped, and entertained. I spent a lot of time thinking up activities for us to do to avoid boredom, and most of the time I succeeded. It was exhausting, however, and when I think back and wonder why it was so exhausting, I realize that it was because I had to be so “present” – all the time.
If you think about it, most of us are fully “present” only periodically throughout the day. Much of the time, we are a little checked out, doing things on auto-pilot comfortably. At other times, we are relaxing, letting our minds and bodies rest. However, when you are a caregiver (and, probably, a parent) you are “on” almost all of the time. You are forced to be present and aware and prepared for anything your care receiver can get up to, including disappearing in a crowded mall, which happened to me once or twice with Dad.

Even when Dad was present and accounted for, I had to be available to him mentally and emotionally. I was always making sure my attitude was good and I was listening to what he was saying and what he needed. I was interpreting his repeated sentences, and garbled phrases for what he was actually trying to say to me. I was making sure I was always aware of the atmosphere and environment around us, including whether he was doing something that might freak someone out, or someone else was doing something that might freak him out. Even just being at home, or sleeping, was tough because I was always waking up hearing things, or making sure he was safe and not leaving appliances on. And, in our particular situation, I was worried about something vital falling off the house, seeing as it was in such poor repair!
Of course, cooking, cleaning, shopping, and dressing someone are all tiring but I remember the being present part as the most exhausting. I wonder if that’s how it is for other caregivers? I remember going home exhausted on Tuesday evening, and being tired and a little out of it on Wednesdays. And I’m one of the lucky ones; I could go somewhere else after a few days, unlike many other full-time, family caregivers! These days, I see Dad for a few hours a week, and he doesn’t move or talk much, so I forget how things used to be.

I really urge caregivers to be aware of this hyper-awareness because it’s something you just get used to doing and it can totally wear you out before you realized what’s happening. And for non-caregivers, who may wonder why their caregiver friends are so exhausted even though they’ve just been sitting around at home with their care receiver. Physically, they might not be doing much, but mentally and emotionally, they’re getting a full-on workout: being “present!”

Monday, April 20, 2015

Seattle Alzheimer's Conference - Amazing!

It was a truly amazing day at the Seattle Convention Center - amazing and a little heart-breaking at the same time because all of us were there because we have either been touched by dementia or we work to help those who have.

I met so many amazing family caregivers, including one woman that my companion and I spent a half an hour talking to, about her husband and the incredible trials they had already undergone - as well as the ones she feared were coming. So many people touched by the devastation of dementia in a personal way - it was a privilege to talk to them.

I also met many professional caregivers and people who ran facilities and support groups. There were two women who ran an Adult Family Home in another state who I adored - they were so matter-of-fact in describing the troubles they had keeping staff and keeping their residents happy and healthy; even the ones who had very disruptive behaviors. Both women said, when I commended them on accepting problem cases, that nobody left their facility until they were rolled out, no matter what they were doing. I love that!

There were lots of exhibitors; attorneys, facilities, care managers, and health care companies, as well as the local non-profit groups who were trying to spread the word about their free services or about planning out your end-of-life. All of them were friendly and knowledgeable and obviously felt strongly about what they were doing!

And thank you to the excellent care and friendliness of the Alzheimer's Association Washington, who fed us lunch and looked after us while we tried to look after those who needed help and information. Altogether a rewarding, if tiring, experience!

Many, many grateful thanks to my husband Paul, and to Julie and Nancy, my support group volunteers, without whom I would have been overwhelmed!