After Alex was diagnosed, we tried to lead as normal a life as possible - but it wasn't long before it was pretty clear that we would need more help in getting through a day. The limitations started to get clearer. The future got scarier.
We joined a support group sponsored by the Alzheimer's Association. This turned out to be a lifesaving idea.
Initially, the group format provided a general education in dementia. This was not easy stuff to hear or talk about, but it gave us some solid knowledge, some plans, and some inspiration.Most important of all, it gave us a group of new friends who understood us. Long after the formal sessions ended, our little family gets together once a month.
Caregiver support groups are what you mostly hear about, but our group consists of all of us, because we are all in the soup together.
So suddenly, in 2013, I guess I stopped being a wife and started being a caregiver?? I'm sorry, the three-year old in my head does not think of myself that way. I find the term limiting and an unhelpful simplification, and I think that with all the other identity shifting that is going on, it can feel pretty isolating. I don't mean to complain exactly, but by separating the world into caregivers and dementia sufferers, it seems like we're letting an awful lot of people and institutions off the hook , and being a little less than kind to "care partners" and dementia sufferers alike.
I could go on and on - but I won't. Except to say that I have pondered the words caregiver and caretaker, and wonder why we use one for people and one for lighthouses..It's something I'd like to talk about with Alex.
The people with dementia in our group are a pretty sterling cast of characters. The "impaired" friends include: a retired dean of chemistry from Northwestern who is an articulate and passionate advocate for government policy change related to these diseases, a management consultant and non-profit strategist (and French horn player), a retired lawyer, a business owner, a schoolteacher who helped support an autistic son, and a finance wizard (and winemaker). All have families who rely on them and love them, all are busy LIVING.
They did not stop being important or interesting people because of their diagnosis, and their caregivers did not stop being human beings with complete lives of their own. They are wonderful friends.
When we get together, we laugh and cry together and talk about our families and politics and all the other little and big things. No one is ever embarrassed , and we all understand when someone needs more time to answer a question, or a change of venue, or just a hug. Oh, and some of us sing together - more about that later...
At one of our earliest sessions, one of the other "caretakers," Jim, was talking about his autistic son, John. Jim said, "When John was diagnosed, we realized that we would be able to travel and do everything that we had ever done before - only we would have to do them differently."
That really hit me. It's funny, because Jim doesn't even remember saying it, but that way of thinking and framing our situation became my mantra. I began to look for ways to make it possible for Alex to keep doing all of the things that give his life a sense of meaning and purpose, and try to become as light-hearted and resilient as possible.
I do NOT want that to sound lofty. It seems to me like a completely natural reaction to this disease, and frankly, I simply do not understand what else people would expect us to do. This is not to say that I had or have any illusions about where we are heading with this. Only that we made a choice to live consciously with this disease, to face it head on and to continue to seize every good moment, and try to find ways to work around the crappy ones.
We asked Alex's best friend Craig, to hang out with him during the day when I was at work. Craig has been an absolutely critical piece of this puzzle. He was sick of his unrewarding job, I needed the help and I needed to keep working. We embarked on this idea wondering if it could work, and left lots of room to learn as we went along.
For nearly 3 years, Craig has helped Alex exercise, chauffeured him around, drawn with him (more about that later, too), taken him to chorus rehearsals, helped him get some household chores done, and taken him to a woodworking shop where they build beautiful tables and benches together. Knowing that Alex is cared for by someone who cares so much about him makes it a million times easier for me to keep working and helps me to be a little bit fresher when I am home with Alex.
We are grateful in countless ways for the steady patience and friendship he and his wife, Chris, graciously offer up.
I am making this sound way easier than it is. It is a lot of work to put the plans together, and things can and do fall apart without warning, but I am absolutely sure this is how Alex has been able to do as well as he has for as long as he has. It would not be possible without all of the wonderful friends and family who help, and without the compassion and flexibility my office colleagues have shown as we figure it all out.
And just because I am feeling cantankerous tonight, I want to say that politically and socially it is simply ridiculous that each family that takes this journey has to improvise like this. I simply cannot tell you how many people have told me, "Remember to take care of yourself. Self care is important."
Well - if there were more CONCRETE support systems in place for all of us, caregivers might actually manage to find the time for themselves. The emotional toll, the perpetual planning and managing are not easy to manage even with a lot of support. And along with everything else that keeps caregivers up till 3 in the morning, worrying about how to pay for it all gets front and center -even for those of us who have nest eggs to draw on.
If I had more time to advocate, our legislators would be heartily sick of hearing from me. I am guessing that's why more hasn't been done - because the people who need the help just don't have room for one more thing. But also because pitying looks are easy to give - and actual money and infrastructure and policy take time and effort.
So, we cobble it together - there are no easy answers. It is unchartered territory for each and every one of us - and I am beyond grateful for the many people in our lives, in and out of our support group, who "get it." I am certain that as my generation ages, and the staggering costs of this become clear, policy will start to change.
But all of that change has to start with softer hearts and open eyes and ears. I think that the shifting has begun - I think a new generation will not tolerate this way of managing these diseases. In the best world of all, these diseases will be cured and will no longer be taking their toll - but in the meantime, wouldn't it be wonderful if we came up with some new models and ways of helping everyone through this?