Moving Forward

An Interview with Drs. Blindauer, Hiner and Hung about couples and communication.

Question: When you think of Parkinson’s patients and their spouses that appear to be coping well, what do you think they are doing right?

Blindauer: The partners that cultivate patience — that let the spouse with Parkinson’s speak for themselves even though it may take more time — seem to project the kind of mutual respect that then gives others a cue as to how to interact with the Parkinson’s patient.

Hung: Couples that retain a sense of humor seem to do better. One patient reports falling and in an effort to help him up, his wife fell on top of him. When they realized that neither was hurt, they were reduced to laughter at the situation.

Hiner: I have a patient who has one of the Parkinsonisms — a disease that starts out looking like PD but progresses more rapidly, is not responsive to medication, and affects many aspects of the autonomic system. This man and his wife developed a practice — something they had never done before in their 30 year marriage — of having a morning and evening “touch base” session. They review what each will do that day. Why that might be inconvenient or challenging for one or the other. They touch on something they’ll look forward to that day. And then they literally touch — hold hands, hug, kiss. Touch communicates love when words and events can’t do it. Every evening they review the day, sometimes apologizing for a lost temper or a disappointment. It has almost become a spiritual practice.

Hung: I agree. Frequent, honest communication beats storing up frustrations and resentments and fears and then exploding.

Question: What do couples resist doing that you think could be helpful in coping well?

Blindauer: Many of my patients wait, almost too long, to accept outside help. The care partner’s own health can be compromised by the physical and emotional burdens of providing care. So many people say, in effect, yes, adult day services, respite care, home health care sound perfect ... for somebody else. My spouse just wouldn’t accept it. That’s were the communication comes in. Sometimes a patient must be asked to do something that they may not really want to in order for the spouse to get some help and relief.

Hung: Generationally, there are patients who have very strict rules about the roles of husbands and wives. If those husbands say, “I don’t want your cousin coming over to stay with me. I want YOU,” the wives often acquiesce. Sometimes wives don’t like to admit that they can’t do everything for their husbands anymore.

Hiner: And yet I have patients who have talked through the facts and compromised on a plan. For example:

Fact 1) It is no longer safe for you to be alone.

Fact 2) I cannot stay with you 24/7 and indeed I can’t provide all the physical and social help that you need.

Fact 3) My own physical, emotional and social health must be cared for, too.

I find these issues are similar irrespective of whether the husband or the wife is the person with Parkinson’s.

Question: When you think of particular Parkinson’s patients and their spouses who do not appear to be coping well, what do you observe?

Blindauer: First of all, people, relationships, marriages don’t suddenly change for the better because a chronic illness appears. Couples that had communication problems or simply “didn’t get along” don’t start to get along when Parkinson’s enters the picture.

Hung: Statistically, newer marriages — young onset patients — have a much higher chance of going through divorce than the rest of Parkinson’s patients because the couple doesn’t have the history — good or bad — that holds them together.

Hiner: I often refer couples who are struggling — young onset or older couples alike — to some form of therapy/counseling.

Blindauer: I notice that caregiving wives are more likely to take advantage of counseling and our Caregiver Support Group than husbands do. I think it has to do with the ways that men and women deal with stress.

Hung: Yes, studies show that women handle stress by sharing with other women. In tough times, you will find women gathered around the coffee machine at work or in the kitchen at family gatherings sharing, venting, etc. Men tend to try to be stoic. They may view the use of a therapist as a kind of failure.

Hiner: Sometimes I feel that men avoid couples therapy because they think it will be a session in which they will be “blamed” for things. Therapy should be about resolution not finger-pointing.

Question: What other factors do you think are involved in the topic of Parkinson’s and couplehood?

Blindauer: I think that as the disease progresses, an extended grieving process can take place: grief for the loss of certain abilities; grief for the loss of the “plans” a couple may have had that can’t be realized. While the patient is grieving for what they used to be — runner, preacher, dancer, socialite, lawyer, etc. — the spouse is grieving too for the loss of their spouse as they knew him/her to be.

Hung: The spouse may feel like they don’t have a “partner” anymore. They may resort to nagging about “standing up straight” or “talking loud.” Women don’t usually know how to caregive in a way other than the way they cared for children. It’s instinctual. That is not an appropriate approach with an adult.

Hiner: When cognitive changes are part of the equation it becomes even more difficult to see the patient as the same individual that the caregiver knew and married. For the most part, I believe that the goal of respectful understanding between spouses is most readily achieved when open communication is practiced. If that doesn’t come naturally, a bit of outside help through support groups and counseling/therapy is called for. We are happy to make referrals to those resources.

Blindauer: And couples need to know, it’s OK to “take a break” from each other for at least a few hours every week. The person with Parkinson’s and the care partner are still unique individuals who need to socialize with friends, participate in hobbies, go to the barbershop or beauty parlor — refresh themselves.