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.

I have great sympathy, and more than that, think there ought to be some sort of additional government support for people, women especially, who are married to chronically ill men.

That's a circumstance where the income often goes down and the wife becomes the sole support of the family and may have to work, caregive, take care of the kids, and lift somebody who's much heavier than she is.

MEMBER QUESTION:
I am so concerned about trampling on someone's dignity when I am in a caregiver role. How did you know when to let your wife do things for herself, even if you knew she would fail or maybe even hurt herself, because it was a matter of giving her some power over herself?

KONDRACKE:
That is a good question, and I guess I erred on the side of safety. Also, Milly was a very willful person, and regardless of what I told her, she did what she wanted. I don't have a better answer.

MEMBER QUESTION:
Did you ever, due to your own frustration, lose your temper with her to the extent that she became frightened to be with you?

KONDRACKE:
Yes. I hate to admit it, but there were times when I got very angry at her for trying something that I knew was going to hurt her, and I occasionally picked her off the floor and sat her down pretty hard in her wheelchair, yelling at her. She was frightened. Two seconds later I was apologizing. It happened a number of times.

Eventually she couldn't even get up, so it stopped. But it made me remorseful every time I did it. It was an instant reaction of fright, as much as anger.

MODERATOR:
How did you take care of yourself through all this?

KONDRACKE:
People were enormously and surprisingly concerned about me. You hear these stories about how everybody pays attention to the patient and ignores the spouse. That was not the case with me. People were very attentive. I had help.

There was not only Graelanda, but we had other help. So I got time off to exercise and play tennis and so on. The schedule, up until the last nine months of Milly's life, was that the ladies took care of her during the daytime, and I took care of her at night.

Then the last nine months she was totally bedridden and one of them stayed overnight, too. Throughout, I usually took care of Milly on the weekends except for a couple of hours when I would go play tennis or work out.

MEMBER QUESTION:
Did Milly ever apologize to you for "making" you take on this role? How did you respond?

KONDRACKE:
Not that I remember. Milly was not the apologetic type. She regarded this as a raw deal, a terrible event that happened in her life.

She was sorry it happened to both of us, but she never blamed us. She blamed God. She had a fight with God over this. She thought God was punishing her for something but didn't know what it was. We had a lot of theological discussions about it. She never apologized to me for this, and she didn't need to. I never blamed her.

As the saying goes, "shit happens," and you do with it the best you can.

MODERATOR:
How did you handle that given your belief in God?

KONDRACKE:
Natural evil is inexplicable. It's the classic theological dilemma; how do you square the omnipotent God and natural evil? You can't. You can explain human evil by saying that humankind has free will.

But children dying of cystic fibrosis or villages getting washed out by a flood and people drowning is inexplicable. I'm Episcopalian. I ended up developing what I call Christian stoicism, but it could be Buddhist or Jewish stoicism. Basically it's: Take what comes, pray, and do what you can.

MEMBER QUESTION:
You say you took care of her through the night. Were you able to get adequate rest? If you had to get up during the night to tend to her needs, did you feel resentful?

KONDRACKE:
There were days I didn't get a lot of sleep. I don't think I ever got resentful. The whole process went in stages. There were times early in her Parkinson's when the basic symptoms were night cramps in her legs and I would stay up half the night rubbing her legs.

There were other stages where she had to go to the bathroom, get out of bed and fall down, and I'd get up, help her. I just don't remember being resentful. I must have been, but if I was, I've forgotten.

MEMBER QUESTION:
If I hear my grandmother say, "I don't want to be a burden," one more time I'm going to scream. How do I and my parents explain that her resistance to our help is the burden, not the caregiving?

KONDRACKE:
Good question. Milly never said I don't want to be a burden. When I was giving her help of all kinds, and I'm not going to get into clinical details, we'd laugh about it and say, "I know you'd do the same for me."

So for somebody in that situation, I guess I would say, "Grandma, I don't want to hear about your being a burden, I'm here to help. Don't say that to me or I'll get mad at you. Just take the help; I'm here to help; I want to help."

MEMBER QUESTION:
Did you ever think you were doing more harm than good keeping her at home versus a nursing home?

KONDRACKE:
No. There was no question about a nursing home until the last nine months when she was bedridden and then we had home hospice. Home hospice is such a blessing. Medicare paid for it.

There was a hospital bed in the house, there were regular nursing visits, there was morphine if she was uncomfortable, which she rarely used. Milly became gradually less aware of what was happening around her and you couldn't really tell how she was, but I did not want her, when she was aware, to wake up in some strange place.

So I was very happy to do home hospice.

MEMBER QUESTION:
Did you have children?

KONDRACKE:
I have two daughters. Both kids were essentially gone during most of the Parkinson's ordeal. Andrea, the younger one, was a senior in high school in the first year while we were doing the diagnosis shopping and then to college and medical school.

My other daughter was gone the whole time. They would come back for holidays and visits. Essentially they weren't around. They talked to Milly on the phone practically every day, but they weren't there for all the grim experiences. They were supportive but had their own lives to live.

They were fortunate they didn't have to go through it day by day, every day.

MEMBER QUESTION:
How do I get past believing that no one else can understand/meet the needs of my loved one? This makes it difficult to let anyone else help.

KONDRACKE:
I let other people help. I hired help, and I can't tell you how fortunate I am. I think it's partly that you have to understand Milly was the kind of person who everybody loved, and she was magnetic, dynamic person who people couldn't say no to.

She was kind and loving and generous. So people wanted to help her, and the ladies who worked for us became like her sisters and loved her like they were family. They become family. There were some people who flaked out on us, and Milly felt really disappointed, but very few. Most of her friends hung in there, and I was glad to have them.

SLIDESHOW

Dementia, Alzheimer's Disease, and Aging Brains See Slideshow

MEMBER QUESTION:
Did she get counseling to her with her depression? How about you, did you also become depressed?

KONDRACKE:
We had been in couples therapy before she got sick. Because we had a very, I would say, loud marriage. That's the best word for it, loud. There was never any question of splitting, but it was contentious at times.

She was a therapist and she was in a therapy group of other therapist. The leader of that group became our therapist and Milly saw her individually, I saw her individually, saw her together, and in groups.

This went on the whole time she was sick. We spent a lot of money, but it was worth it. I recommend it. I think it's really important. In addition to that, we discovered Effexor, an antidepressant, which put a pan under her depression and basically made it tolerable for her.

She talked a lot in the beginning about suicide and about not wanting to live. It would have been terrible if we hadn't discovered Effexor. That pretty much stopped when she started taking Effexor.

MEMBER QUESTION:
How did you make time for yourself, such as going out just to distract your self without feeling guilty?

KONDRACKE:
I didn't feel guilty because I didn't take that much time off. I have a strong super ego and I probably spent more time with Milly than I needed to. I probably should have taken more time off.

MODERATOR:
You have a very active, very public life. How did you balance it all?

KONDRACKE:
We did a lot of things. We went overseas. Increasingly over time we had to give up stuff. In the later stages we would go like one trip a year to Wisconsin in August to visit Milly's foster sister.

But we traveled as much as we could, and I can't think of what we gave up. We tried to do as much as we could, together, and we did it with a wheelchair. Some of it was problematic. If you go to Mexico with a wheelchair, it's pretty tough; they don't have handicapped accessible sidewalks, for example, but we did it. I took Graelanda with us on a trip. That's another thing I could afford to do, so we had help.

MODERATOR:
What would you like to see the government do to support family caregivers?

KONDRACKE:
I think there are a couple things:

  • There ought to at least be a refundable tax credit for people who take care of chronically ill people. If somebody is on Medicare disability, the person who takes care of them ought to get a refundable tax credit to afford help.
  • Also, there's a movement called the Respite Movement in a lot of states where it's either a payment or a service where somebody will come in and spell the person who is giving care. I think it's a wonderful movement and needs to exist everywhere.

MEMBER QUESTION:
What kind of advice would you give to someone who is just starting to go through a disease like this?

KONDRACKE:
A few things:

  • Take it as it comes. Don't assume the worst; just take it one day at a time.
  • Get help, as much assistance as you need and can afford.
  • Talk to friends.
  • Check on the web and find chat rooms -- every disease has a chat room -- and make friends.
  • Go into therapy if you can possibly do it. You need a therapist; if you need group or couples therapy, get it.

Milly refused to have anything to do with a support group. She did not want to see others with Parkinson's; it made her depressed, she said, so we never did the support group. But if that will help you, do it, absolutely.

The other thing that was an enormous help, we got active in the Parkinson's movement, specifically the Parkinson's Action Network, which fights in Congress for more research funding. So instead of feeling sorry for ourselves, we got active and Milly sort of became an icon in the movement. I'm on the board of the Parkinson's Action Network and the Michael J. Fox Foundation.

MODERATOR:
There are also support groups on line -- please check the WebMD message boards.

MODERATOR:
You lost Milly this past summer (Milly Kondracke died on July 22, 2004). What do you miss the most?

KONDRACKE:
Holding her hand. After she died, it was very strange. On the day she was buried we had kind of a viewing at the funeral home and she was not -- her face was not Milly's face, but her hand was warm and I held it and held it and held it and it felt like the old Milly.

I certainly miss talking to her and getting advice from her. She's the one who stopped me from drinking. I was an alcoholic and she was the one who talked me into AA. That was years ago. The last thing I remember is just being able to hold her hand.

MODERATOR:
We are almost out of time. Morton, do you have any final words for us?

KONDRACKE:
Just to make a political point, it's very important for people who are fighting diseases to get together and make sure that the Bush administration and Congress don't cut the NIH budget, which they are in the process of doing.

To be fair and balanced, it's also important for people to work on the Democrats so they don't fix prices for pharmaceuticals to the point where they inhibit the drug companies from being able to develop new medicines. We all have to fight for stem cell research.

MODERATOR:
Thanks to Morton Kondracke for sharing his story with us. For more information, please read, Saving Milly: Love, Politics, and Parkinson's Disease.

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