Sunday, November 10, 2002

A five-star caregiver

Marge Sherman Eagle-Tribune Health Writer

Diane Blake is squeamish about playing nursemaid to her terminally ill husband, Ric Blake, and has little desire to monitor every blip on his medical chart.

"One thing I'm not is a nurse,'' she said. "I have the hardest time dealing with an open wound. It makes my knees weak. I'm ready to faint. It makes me sick seeing an IV; it makes me feel weak all over. I'm not good when it comes to the nursing part of it.''

Even nausea, a side effect of her husband's medications and chemotherapy, is an affliction that sends her running into the other room.

"All I have to do is hear it, and I get nauseous myself,'' she said.

Perhaps it is because she never had children, never had to deal with runny noses and vomit, that she is standoffish about the blood and guts part of illness. Her husband, 57, has a particularly aggressive form of thyroid cancer that he learned last spring has spread to his bones.

Yet despite Diane Blake's shortcomings -- or perhaps because of them -- her strengths as a caregiver have blossomed other ways.

A colleague at Merrimack Valley Hospice in Lawrence, where Blake works as bereavement coordinator, put it into perspective when she reminded Blake that caregiving is more than physical help; it also requires emotional and psychological support.

"That's my forte,'' said Blake.

Blake's work with end-of-life issues was recognized Nov. 2 when she was named Caregiver of the Year by the New England Coalition for Cancer Survivorship at its annual meeting. That honor pleased her tremendously.

"Being acknowledged for this award is humbling. This has been my life's work, in terms of what I've done,'' she said.

Blake, of Londonderry, N.H., is an outspoken personality in the Merrimack Valley on caregiving and end-of-life issues. She has led workshops for families of patients with advanced illness, helped found the local Merrimack Valley Palliative Care Coalition, and helps to lead a support group for relatives of victims of the Sept. 11 terrorist attack.

She has also opened her life to this newspaper for the past 21 months as it chronicles her husband's journey with terminal illness in the series "Living Well To The End.''

The newspaper series has been daunting at times for her, but ultimately worthwhile.

"It makes you very vulnerable, and that can be very hard to do. ... It's very hard to show your grief publicly. But it's good that people get to see all sides -- that it is a struggle, that it's a path that caregivers do not choose, but they have to make the best of it,'' she said.

The award for caregiving came on a milestone weekend. On Nov. 3, Blake celebrated her 60th birthday at a party at her mother's home in Methuen. Relatives came from near and far to regale her with stories from decades past.

"Sixty is the hardest for me. It's funny how a number can do things to your head. It's making me realize that time is quickly passing,'' she said.

Part of the bittersweet feeling of turning 60 was the realization that she may face old age alone.

"When you've been in a life partnership, you think about growing old together. When you see an old couple together, they're there for each other. You want to have that for as long as you can. I feel very sad that a big part of my life is going to be missing,'' she said.

This year, the Blakes celebrated their 35th anniversary. Ric Blake describes his wife as a deep river, a person of unwavering loyalty to those she loves.

"Diane is a watcher; she is an observer. She's a listener. She's an inspirational leader. She's quiet; she's steady. She's loyal and she's unconditionally supportive,'' he said.

As something of an expert now on caregiving, Diane Blake said her best advice to those in that role is to avoid the trap of becoming a martyr and remember to take care of themselves.

"You have to have a good sense of humor, remember to laugh and to play, and remember that every moment counts, because you don't know how many moments you will have,'' she said.

She tries to live that credo. This summer, she began taking Fridays off from work, making that a special time to spend with her husband, whether they went to a movie, enjoyed the garden, or went for a car ride.

"As people get sicker, you have a tendency not to want to leave them, and take breaks for yourself and go do something with a friend. You have to remember that you have a life of your own. You need to take care of yourself or you're not going to be any good to anyone else,'' she said.

Her own special sustenance can be as simple as taking some moments for peace and solitude, getting enough sleep, reading a book, or attending a conference for work.

"I look forward to just taking relaxing moments for myself. You need to rejuvenate,'' she said.

Life with a terminally ill loved one can be an emotional roller coaster.

One of the early pitfalls came for Diane Blake last spring when her husband's condition worsened. She found herself becoming overly protective.

Her concerns played out in the form of not wanting him to drive, and trying to restrict his hours in his precious garden. The Blakes hashed things out, as they usually do, and reached a compromise.

"I felt like she was saying I wasn't capable or competent to do things. I think her fears translate into her thinking I can't do those things,'' Ric Blake recalled.

The same issues crept up again last week, as Ric Blake prepared to head to the National Institutes of Health in Bethesda, Md., for what would be his final trip. The Blakes have been reeling in different ways since learning that the thyroid cancer research program in which he participated for the past few years is ending. Blake's doctor, Nicholas Sarlis, is heading to M.D. Anderson Medical Center in Houston, Texas.

Before her husband left for Maryland, Diane Blake wanted him to agree to ask airline attendants for a wheelchair, should he need one. She wanted him to take a smaller suitcase, one he could easily manage.

Like so many relatives of people with advanced illness, she walks a fine line with her husband. As he begins to look a bit more frail, a little more tired, she is concerned for his safety. But she does not want to interfere with his independence.

"It's a whole matter of allowing people to have as much control as they need, and not to take that control away,'' she said.

The range of issues caregivers of the very sick encounter is the reason she continues to run her support groups.

"People need to have someone they can talk to, to talk about all of the feelings they have, especially if they have feelings of frustration or anger. It doesn't make you a bad person to have all of these feelings,'' she said.

When Diane Blake looks around at the families of Sept. 11 victims she has worked with -- the families of people worse off than her husband -- she feels fortunate.

"I really can't feel sorry for myself at all. I think you always go through a period of why us? Why me? But that isn't there right now. You know, things could be a lot worse. I just have to look around, especially working at hospice and what I see. I think I can't ever complain. Ric and I have had a wonderful life,'' she said.