Communion Of Dreams

NPR recently did a very good series looking at family caregivers — those who are caring for a family member who has dementia or has suffered a sudden serious illness/injury or lives with a challenging birth defect.  I thought that it was particularly good in highlighting how the traditional image we have of caregivers has been changing. Installments in the series concerned parents caring for a 16 year-old son with cerebral palsy, a 46 year-old woman caring for her sister who suffered a devastating stroke (as well as  their father who has dementia), and a retired man who cares for his wife of 42 years who has dementia.

None of it is easy to listen to.  None of it is easy to contemplate. I think all of us shy away from the thought of such a responsibility. I think all of us wonder whether or not we would be adequate to the challenge of caring for someone at this level.

Three years ago we published Her Final Year. In that time the book has been downloaded nearly 10,000 times. And when people read it, they find it a huge help, as seen in reviews and in plenty of comments which people have made to us.

But I know that many of those 10,000 downloads, perhaps even most of them, have never been read. Many people are so daunted by the idea of caregiving that they just can’t bring themselves to read the book. I know a couple of people who are currently *in* a caregiving role who haven’t been able to bring themselves to open the book, because they’re afraid that they can’t face the experience.

I understand this. Contemplating being a caregiver … or being someone who needs a caregiver … is frightening. The experience is incredibly stressful. Exhausting. Financially difficult. That comes through in the NPR series, and in our book. In spades. From the second story cited above:

“The experience for these caregivers is quite burdensome, emotionally and physically,” Hoffman says.

The work these family caregivers are doing would be enormously expensive if their loved ones were instead in nursing homes or other institutions, Hoffman says. But the caregivers also often find they must cut their hours at work or, as in Loretta’s case, give up outside jobs in order to care for their relatives.

“In effect,” Hoffman says, “we are taking care of the most vulnerable in our society — aging adults who have chronic care needs — by placing the burden on the backs of some of the people who can least afford to do … those who are themselves economically fragile and vulnerable.”

Little wonder people don’t want to picture themselves in that role. It’d scare the hell out of anyone with any sense.

But you know what? There are also incredible rewards which come from caregiving. It may be hard to believe, but as hard as the experience is, there are  real benefits. We try and convey that in the book. I try to explain to people how I am a much better person now for having gone through that. And that I would not wish to go back and erase those difficult years for anything. But here’s a bit from the third story cited above which illustrates what I mean:

Dementia has transformed her into someone who’s dependent and vulnerable. That’s triggering changes within Rick, too. He’s noticed himself gravitating toward traits Marianne was known for, like empathy.

“The importance of listening and caring for others. Now I can see why that is so important and why you can go through life just giving and feeling totally satisfied. You know, that’s a good thing,” Rick says.

Marianne may no longer be the woman Rick married, but he says she’s still helping him become a better husband.

Three years. The actual anniversary is July 15th. And Her Final Year will be available for free download starting that day and going through the 17th. Please, download it.

But more importantly, read it.

Thanks.

Jim Downey