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Caregiving

Parkinson's Disease Through a Caregiver's Eyes

Summary & Participants

People living with Parkinson's disease face many hurdles, but they don't do it alone. Listen to how one couple is coping with the ups and downs of everyday life with Parkinson's disease.

Medically Reviewed On: June 13, 2008

Webcast Transcript

GUISLA SCHAFSTELLAR: If we, for instance, choose the buffet, then I carry whatever food he would like to have.

HELMUT SCHAFSTELLAR: It's very amazing. Some of the unexpected things, all of a sudden, hey, man, that is hard. My wife is a terrific support. She doesn't let me fail. She is even catering to my impatience.

ANNOUNCER: Being a caregiver can be difficult.

MATTHEW B. STERN, MD: They're dealing with their spouse or partner who is becoming progressively more impaired in terms of dealing with routine activities of daily living. So just the physical demands on a caregiver can really sometimes be a terrific burden.

ANNOUNCER: Assessing how much help to provide and how much help to accept is an evolving process.

HELMUT SCHAFSTELLAR: She is very, very, helpful. Helpful sometimes, I say, helpful to a fault.

GUISLA SCHAFSTELLAR: Sometimes I get into the act a little bit too soon. When he's not at that point yet where he would like to have help and then I get a curt response from him and I know to back off. And so I automatically ask, "Would you like for me to do this or that?" And then, yeah, he says, "Okay," and then I do it.

HELMUT SCHAFSTELLAR: I'm not this old, ancient guy getting dependent. I can still hold my own. I don't reject her help. But I also try to make this as easy as possible, because she is not getting younger, either.

ANNOUNCER: The physical challenges are not the only problems that the caregiver must be prepared to deal with. Depression can accompany the disease.

HELMUT SCHAFSTELLAR: I can see myself easily getting depressed. My wife is a very happy soul. She doesn't let me linger on that too long.

GUISLA SCHAFSTELLAR: Helmut is not an ebullient, outgoing kind of a person; he internalizes things more and is very quiet. And so there were concerns there that I had; how he would deal with it, but he deal with it pretty well and still does.

ANNOUNCER: While the patient's needs can seem paramount, the needs of the caregiver are equally important.

MATTHEW B. STERN, MD: They're every bit as much the patient as their spouse or partner is. And that they have to recognize the needs that they have. We, for example, have a social worker in house who deals with caregivers as much as she deals with patients.

There's a network of support groups throughout the country that caregivers can get involved with. So there are resources out there

ANNOUNCER: So far Guisla has taken her new role in stride.

GUISLA SCHAFSTELLAR: I'm a person who is automatically doing things that I see need to be done. So it all is in a day's - day's work, you know?

MATTHEW B. STERN, MD: There can't help but be strains on her, but I think she's coped magnificently. And, in fact, is in, to no small extent, responsible for Helmut's sense of well-being.

ANNOUNCER: Still it's a delicate balance that the Schafstellars must maintain.

GUISLA SCHAFSTELLAR: My role as a caregiver will probably increase. And since we don't have a crystal ball and we can't look into the future, we just take it day by day.

Keep a sense of humor. With a sense of humor, you can deal with almost anything.

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