Caregiver University: Your Evolving Role as a Caregiver

WebMD Live Events Transcript

In his book, Saving Milly: Love, Politics, and Parkinson's Disease, Morton Kondracke chronicles his role as caregiver to his wife, who battled Parkinson's disease for many years. He joined us to discuss his experience as a husband and caregiver while maintaining a busy and public professional life on Oct. 7, 2004.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Support for this University course is provided by VistaCare.

MODERATOR:
Welcome to Caregiver University: "Learning to Care for Someone You Love." Your instructor today is Morton Kondracke, author of Saving Milly: Love, Politics, and Parkinson's Disease. He joins us to share the story of his role as caregiver to his wife Milly, who battled Parkinson's disease for many years.

MODERATOR:
Welcome, Morton. How many years were you and Milly married, and how many of those were spent with you as her caregiver?

KONDRACKE:
We got married on Oct. 7, 1967. The first hint of Parkinson's appeared around Christmastime 1986, and the first diagnosis, which we did not acknowledge or accept, was in the spring of 1987. Then, in the spring of 1988, we acknowledged she had Parkinson's.

MODERATOR:
How did you maintain your husband-wife relationship while caring for her -- or were you able to do that?

KONDRACKE:
Oh, yes. Milly was not the kind of person you could ignore or not take seriously. For most of the time that she had Parkinson's, even through she was depressed, she still had a lot of fire, and she was a woman to be taken seriously. Our relationship changed considerably, but for most of the time, it was still an equal relationship, and intense.

MODERATOR:
How did the two of you handle it when she became less physically independent?

KONDRACKE:
This was a gradual process, and we took it as it came. The first real signs were when she started falling a lot. She would have to go to the emergency room a great deal.

Sometimes, I have to say, I got angry at her for not being more careful. She refused to use a walker, a wheelchair, she would get out of the wheelchair and then fall and we'd end up in the emergency room. I'd yell at her, and I'm not proud of that. After a while I stopped doing that and I just took care of her. She did become more dependent. In the later time, very dependent. She didn't like it, but we had to accept it.

MODERATOR:
Did you talk about the changes as they occurred and try to look at what might be coming down the road?

KONDRACKE:
At the very outset, Milly looked way down the road. She had been a counselor right after she got her Master's degree in social work at the Neurology Center at Bethesda, Md., and she had counseled families diagnosed with Parkinson's.

She assumed she would have the worst possible case, as indeed happened. She said, "I'm going to be unable to walk, to talk, I will be totally dependent, you're not going to love me, you're going to leave me." I said there's no way I'm going to leave you, ever. We'll just take this as it comes. Ultimately all the things she said would happen, did happen, except my leaving her or stopping loving her.

So she did stop walking and talking, unable to do anything. I developed kind of a stoic attitude. I said, "What you do in life is take what's handed to you and play the hand as well as you can and ask for God's help every step of the way."

MEMBER QUESTION:
Did you seek outside help, and if so, at what point?

KONDRACKE:
We sought outside help right away -- medical help immediately. As soon as the first symptoms occurred she went to get medical advice. We spent a lot of time seeing doctors and therapists, and got a lot of help every step of the way. We had help of one kind or another for the whole 17 or 18 years she had Parkinson's, right up to the end, right up to her death.

MEMBER QUESTION:
How does one survive the political season? Between my job, being a caregiver for my wife, and my interest in politics, I find myself in a big time jam. Any tips to making it through to Nov.2 in one piece?

KONDRACKE:
Just read the newspapers, watch TV, and sit back and enjoy it.

MEMBER QUESTION:
What were your resources for support?

KONDRACKE:
I regard myself as very fortunate by comparison to lots of other people who are the spouse of a chronically ill person.

I have the resources to afford good care, and Milly, for 14 years of her time with Parkinson's, had a companion almost all the time. Led by a wonderful Philippine-American woman named Graelanda Te, who practically was Milly's sister. They did everything together.




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