From time to time, my blog readers ask questions beyond my area of expertise. This was the case when I recently received a question from a support group leader. I asked Carolyn Zeiger, a clinical psychologist and PWP spouse, for her response. Thank you, Carolyn, for generously sharing your expertise.
Question: In our support group, I think what we have is a PWP married to a Type-A personality male who seems (to the PWP) to be using her diagnosis to exert more control. Refusal to cooperate causes such stress it becomes counter-productive to her. She goes nowhere without him except to support group meetings. He tells her doctor, family and friends that her depression and growing lack of sense of herself is due to the PD. I think this is a long standing difficulty that the PD is exacerbating - and may be yond the support of our group. Any thoughts??
My thoughts: I have definitely seen this in other couples (PD and Alzheimer's) usually with a pre-illness domineering husband. The men I've seen are scared: PD can't be controlled! "But I have to control it! That's what I know how to do." In a new situation, when we don't know what to do, we do what we already do know how to do. Further, not being able to even acknowledge being scared (not manly), some men handle their fear by becoming ever more controlling of the PWP.
Not only does illness shape us, who we are shapes our illness--not just the person with the diagnosis. Those closely connected also are shaped by, and shape, the way the illness manifests and progresses. Just ask the renowned neurologist Oliver Sacks (Awakenings).
Sometimes there's a self-esteem issue involved, so if something is wrong with his wife, it must be due to the illness--nothing that reflects badly on him. Also, most men believe they should fix their wives problems (poor guys!) and I have seen some men make the most desperate attempts to personally fix, care for, etc. their wives, beyond what works for either one of them. Their efforts ultimately become counter-productive.
And a third motivating factor can be a fear of being emotionally abandoned, due to either disability or death. I remember a man who collapsed in sobs telling me that he couldn't imagine living without his wife--who was in her late 80's and had advanced PD. His love is very real, but this is something we all need to imagine, to prepare ourselves for, even when our spouses have no medical problems. He spent a fortune trying to cure or ameliorate the PD, and devoted his life to caring for her--to the extent that it made her feel suffocated and restricted.
Of course, these particular tendencies show up in women also, but are more common in men. We women have our signature ways of coping also. For better or worse.
In all cases, when you look closely, it is a matter of attempting to meet the needs of the caregiver, not the PWP (I need to be in control, I need to be the fixer/provider, I need this person emotionally). We all try to meet our own needs, and should, but the needs of both spouses need to be understood, considered, and the ways of meeting them negotiated. PARTNERS! Many couples do not have a history of being able to do this. They can still learn, however. PD may give them the opportunity to enrich their marriage out of necessity.
I got really carried away here...anyway...I would recommend referring the PWP to a licensed mental health professional who is experienced in working with people who have a chronic, progressive illness, better yet, experience with PD itself. The background of the therapist matters because he or she needs to be able to differentiate, for example, PD-based anxiety or depression from that which is psychological in origin. Problems that appear to be psychological can be neurological and vice versa. The therapist needs to consult with the PWP’s neurologist on occasion. The PWP needs to have what it takes to go for counseling with or without her husband's consent. If he won't drive her, find a friend who will. Perhaps, in time, husband will come too if that's what's needed.
Almost nobody with PD that I have met, or their caregiver, is in therapy. (I do know a couple that has been in therapy for years to deal with each thing as the PD progresses.) At some point, every one of us could use a little help, both PWPs and their caregiver-spouses. I found it enormously beneficial to see a grief counselor to get beyond my overwhelming sense of loss when my husband was diagnosed with PD. Therapy doesn't need to be long term. Just one session did me a world of good.
It would be good for the support group to create a list of qualified professionals, both neuropsych and grief counselors, (as I did for ours), and give it to everyone in the group to have in their "PD Survival Kit," so to speak. The list is right there if they need it, and they don't have to ask anyone, to publicly reveal their distress, to be able to get help.
Your friendly neighborhood shrink and PWP spouse,
Carolyn Allen Zeiger, Ph.D.
Clinical and Health Psychologist