Talking With Jamieson Haverkampf: Mom Minus Dad

The author of Mom Minus Dad: The Essential Resource Guide for Busy Adults With a Newly Widowed Parent offers advice -- and more than 500 resources -- for family caregivers.

When Jamieson Haverkampf's father, John, learned that he had stage III non-Hodgkin's lymphoma at the age of 61, his family shifted into emergency mode to help him get well. And as he began chemotherapy treatments at the Massey Cancer Center near his home in Richmond, Virginia, the family was convinced that he would be among the 80 percent of those with stage III disease who survive more than five years.

But three months into his treatment, he learned that the chemo wasn't working. After a failed stem cell transplant at Georgetown University, he enrolled in a clinical trial at M.D. Anderson Cancer Center in Houston. By then, the rest of the family -- Jamieson and her mother, Caroline, and sister, Ivy -- were in high-gear emergency mode, running on coffee, diet Coke, and adrenaline as they spent days at the hospital with him and nights searching for hope on the Internet. When he died less than a year after his diagnosis, the Haverkampfs were in shock, exhausted from care giving, bereaved, and completely unprepared for the challenges that lay ahead.

Jamieson and Ivy Haverkampf, who were just 30 and 28 years old at the time, soon discovered that what lay ahead extended well beyond the considerable tasks of planning memorial services and setting up new money management, paperwork, and accounting systems for their mother from their home in California. Caroline Haverkampf was isolated, depressed, and suddenly single for the first time in her adult life. Her daughters were divided between their mother's needs and the demands of their own lives. As their incomes waned, causing additional stress, and Jamieson Haverkampf's cholesterol shot up to 300, she worried whether she might be the next family member headed for a medical emergency.

"One day our compassion for our mother led our decisions, the next day our own worries came first," Haverkampf writes in Mom Minus Dad: The Essential Resource Guide for Busy Adults With a Newly Widowed Parent, a thoughtful, select guide to resources such as websites, laws, government agencies, and nonprofit organizations that can provide support and save time for family caregivers. Divided into the ten areas that Haverkampf felt posed the biggest care-giving challenges for her family -- such as building a support team, taking care of yourself, paperwork and finances, holidays and anniversaries, and moving a parent -- the book's abundant resources range from the Geek Squad to the Women's Institute for Financial Education; from eulogy-writing guides and grief support groups to meal and grocery delivery services, professional organizers, and airlines' bereavement rates.

Haverkampf recently spoke with about her experience and advice to family caregivers.

In addition to offering resources, your book takes into consideration individual needs. For example, you talk about resources for dealing with grief alone or with others.

I wanted it to be almost like Consumer Reports for people going through this, because you need a filter. The resources may or may not be right for you, but they are starting points and they can point you in the right direction. One of our big problems, and I'm sure it is one for everybody else, was that when you're going through this and you have so much to do, you don't have time to do a lot of research. So I really tried to sift through the resources for the best ones out there. For example, some grief support groups have ways of screening for online predators. I didn't know about that until I did the research.

Had you planned at all for the possibility of your father's death during his illness?

No. My dad was a big fighter, and a strong, invincible kind of guy. We did what he wanted to do -- it was his life and he wanted to fight. He didn't want to sit at home and pass away, which is what the doctor at Georgetown recommended. He said, "Go home and let him die."

So we were just doing anything and everything to try to keep him alive. When I think about it now, it was so crazy -- like I contacted the CEO of this drug company to get them to give my dad a particular drug, but apparently because the lymphoma had gotten into his liver, they couldn't. We were just in total denial. Since then, I've heard hospice people talk about that in caregiver symposiums -- how big denial is in families. And we were in that mode too, because we just didn't expect this to happen to us.

What was your mental state after your father's death?

My sister and I had been going back and forth [across the country], one week a month during his treatments, and then we were with him for the last three months of his life. So by the time he died, we'd been gone from San Francisco for so long that we were worried about our work and home. And then all of a sudden we had to help mom with estate stuff. We were totally overwhelmed.

Grief services were hard to find because he was in a hospice in Houston, so that was tough. And my mom was just a disaster. My father had done all the finances, and she had no idea what to do. In retrospect, I think we probably shouldn't have tried to continue living in San Francisco. I'm very torn about that because it gave me something to hope for, but our energies and focus were so divided.

We were all young for this to happen. We were in our early 30s and mom was in her 50s. Very few of her friends had really dealt with this, and none of our friends had. And it was different from her friends who were going through divorces. It's a different kind of loss.

One of your suggestions in the book is to assemble an "energy team" of people to help out and provide emotional support during the first few weeks after a parent's death.

When I thought back about what I wish I'd done, or what I wish we'd planned for, it would have been really helpful to ask friends with experience in certain areas -- like someone who had dealt with a funeral home before -- to help us with those things. Or to design a memorial website, or navigate us through the paperwork. My mom would come home from dealing with the funeral people and get a call from someone at a hospital where my father had been, asking to speak to him, so having someone who could act as a buffer for that kind of thing would have been really helpful. Planning a funeral and memorial service is almost like planning a wedding, with all these little details, but you don't have any energy for it.

Are energy teams made up of friends or hired people?

I think it's unique to each family's situation. In the South, where I'm from, I knew that there would be tons of people who would offer to help, but maybe you're an only child or you live in Singapore and your parents are in Austin, so distance can make it really complicated.

There are also professional organizers that you can hire. I never knew they existed before this. There are estate organizers who are hired by trusts and estates to help families who decide to move or need to get rid of some things. They help you deal with liquidators and estate people -- I mean, I've never liquidated anything, I wouldn't know how to start. I would have hired one of those in a heartbeat to help us out for a couple of days.

You also talk about a "caregiver contract," a legal agreement that allows parents who can afford it to pay adult children who may be giving up paid employment to provide long-term care.

Yes, caregiver contracts[link] are a new kind of thing. The idea is basically this: The child who lives closest to the parent often ends up doing a lot of the work, and siblings who live farther away want to help the caregiver sibling get some income if the parents have enough money in their estate. So it reduces resentments among the siblings, and in some cases it helps reduce the estate so the parents qualify for Medicare and Medicaid. Elder law attorneys draw up the contracts.

It's kind of strange taking money from your parent, but at the same time, you have to look out for yourself because if you spend all your time taking care of your parent and their estate goes to zero, it's going to affect you. And there are other forms of compensation -- the parent may make you meals or take care of your kids or something like that.

Your real estate business -- and income -- suffered in the months after your father's death, and you began to have serious health problems.

I burned out because I had demands on both sides. Real estate clients are very demanding, and then my mother would call. I'll never forget one day when I was doing a closing in South San Francisco and just as I was walking out of the title company, my mom called me, just bawling about something having to do with her computer or paperwork. It was so hard because I was trying to keep my head together to do my work. In retrospect, it would have been so simple to call the Geek Squad or some local tech support.

What can caregivers do to prevent burnout?

I think that from the beginning, you have to figure out what you need in your life to keep things together, and then set boundaries. My sister and I didn't, and it just infiltrated every part of our lives.

One stress reliever that you advocate is one-hour "vacations."

The idea came up when we were at M.D. Anderson, and my sister said, "We need to get out of the hospital and see a movie." And even though from time to time during the movie my mind would go back to my dad, I really needed the break. People will tell you to take a vacation, but you can't always do that. But you can fit one-hour "vacations" into your life. Set aside an hour, maybe at lunchtime, and walk over to a museum or do whatever takes you out of your life. I tried to do something once a day that could help me manage the stress, even at the hospital -- just getting outside of the hospital air or reading books that were nurturing.

Was your mom able to take one-hour vacations?

Emotionally, it was hard for her to take a break before my father's death. But we did get her to convene with us at night in the hot tub at the motel where we were staying. Even though it was hot in Houston at that time, it was soothing.

You also suggest celebrating milestones for a widowed parent, such as a mother's first big decision on her own. Did you do that?

We didn't. My mom was the executor of my dad's will, and when she finished that we should have celebrated, because she had to grow a lot to do all the tasks related to it. And it's good to recognize that when your parent takes on something new, it takes a lot of courage. The same for my sister and me -- taking on my father's investments has demanded courage. It's like life pushing you to grow, and you have to stop and celebrate that.

What was the most helpful thing for your mother in starting a new life?

She got a grief counselor, and having somebody to talk through some of the things she was feeling was important. Before that, she went to some grief groups, but the women in them tended to be much older, in their 90s, and that was hard for her.

What do you know now that you wish you'd known then?

I wish I'd known how much assistance my mother needed from my sister and me. I underestimated that. We stayed for a month to help with funeral arrangements, but there was so much more -- financial and legal paperwork, investments. There was a lot of transition -- selling the house, helping my mother downscale, helping her move across state lines, coaching her on where to go to meet new people as a single adult for the first time in her life. A lot of people faced with a loss like this may rebuild their life around their grandchildren, but she didn't have that. I guess it's almost like parenting your parent who never had to learn these things as a single adult on her own. I underestimated how long it would take.

Personally, I should have just taken a job working for someone else and cut back on the other things I was doing, to keep myself going and help her. It was just too much. Now I tell people: It's not going to be over in a week. It's an ongoing thing.

What's been most rewarding aspect of care giving for you?

Seeing my mother grow. She's taken on things that I never thought she would take on. And helping her find an identity beyond being a wife and mother. It's rewarding to see that she's making a good new life for herself.