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Bruce Campbell
Medical College of Wisconsin Otolaryngologist


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Emergency Preparedness Coordinator, Injury Prevention Educator, EMS Liaison


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Vicki Conte is the Community Outreach Coordinator in the Froedtert & The Medical College of Wisconsin Neurosciences Center. She writes about news and events happening within the center and shares inspiring patient stories.

Vicki Conte
Program Manager, Community and Department Education, Neurosciences Center



Jul 14 2014
Is Caregiving Its Own Condition?
1

Most chronic diseases affect the whole family. When a man with Parkinson's can no longer drive, his partner must take over that task. When a woman with MS can no longer work, will her Social Security disability be enough to support her and her children? When a child has epilepsy, do the other children receive as much attention as they did before the parents were consumed by the needs of the sibling with seizures? Families must adapt to "the new normal." Most do so beautifully, lovingly and courageously.

But just because a chronic condition enters a family, the relationships don't miraculously change. Problems in a marriage aren't cured by the addition of a new stressor. People's styles of interaction don't improve with the addition of illness. So, sometimes when we meet a patient in clinic and think, "her husband should be more supportive" or "that mom shouldn't be so controlling," we just don't know the back story.

I run a number of support groups. Three are for people with Parkinson's with or without their partners — one for people with essential tremor, one for people with autonomic disorders, again a mixed group; and one is for women with husbands who have Parkinson's or a "parkinsonism" which is a disease that starts out looking like Parkinson's but is much more challenging because there is no treatment and the disease progresses more rapidly with the addition of many more symptoms than classic PD.

It is in that group that I began to identify the fact that caregiving can be its own condition. I see caregivers who are so enmeshed with the husband and his disease that it's their only focus. They identify themselves as the caregiver of a person with _______(fill in the blank.) Often they are angry. They believe no one can care for their husband the way they do. They answer questions asked of the husband. They forget that their husbands are still the men they were – with personal interests, and unique experiences, and a lifetime of work and hobbies, thoughts and values and usually the ability to answer questions albeit more slowly. This approach "de-values" the husband. It disempowers the person with an illness.

Of course the emphasis of a caregiver support group is to encourage self-care and teach tools for stress-reduction and relaxation to the caregiver. There is an educational component and sharing. But I find myself coming away dissatisfied because we don't really address the "mad caregiver" syndrome in a healthy way. My gut wants me to say, "I see you are angry. Life isn't fair. Yes, your life has changed; but boy, your husband's life has really changed!" But, I don't know what their relationship used to be like; I don't know how they interacted or who was the boss.

And while I know that the caregiver has to be empowered and given an opportunity to express herself as her own person with interests and activities separate from caregiving; I also know that the person with a chronic illness also has to be empowered to express himself as a person with interests and activities of his own. These aren't necessarily the interests and activities that his wife thinks are important. Often the disease leaves him so trapped that he cannot do that without help. In my perfect world, caregivers would want to give that help with grace and patience and love. When that doesn't happen, I don't blame frustrated caregivers. But neither do I blame the person living with a chronic condition.


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Anonymous July 29, 2014 at 01:53 pm

I read your most recent blog piece. You could have been writing about me (to some degree) in your paragraph about what you’ve learned from the Parkinson Caregiver Group. The thing is that our partners/spouses/loved ones with Parkinson’s are in many ways NOT the same people they used to be. The thinking process or results of that process are so very different than before the onset. The habits of years previous change or disappear. The hobbies and interests that the person with Parkinson's had cannot no longer be done much less enjoyed. Everything eventually becomes vicarious - living through others’ experiences - and that takes away so much of the person. Things become even more challenging if the person with Parkinson’s is dealing with depression, anxiety and/or apathy. My husband is NOT the same person he was. I have to remember those things; I have to look for glimpses when they show themselves. In many respects, no matter how long someone has been married/partnered, it’s having to learn to live with a different person. I am not the only one who feels this way. Thankfully, in our case, my husband’s memory is quite intact so we can share lots of the past 40 years. These changes take a bite out of the caregiving partner. I have to work, hard, at being my own self and often I’m not sure who that is anymore! And I know I’d be more angry, frustrated, and miserable if I didn’t have caregiving help during the week.

Maybe you’d be on to something if it was acknowledged that, yes, in many situations, the person with ______is not the same in some ways. But here are ways to help foster what IS still there of the person’s essence so that caregiving can be less stressful. You should see how well our paid caregiver and my husband get on - she has no notion of what manner of person he was pre-Parkinson’s - so she has a great comfort level and things are as they are.

There has been so much to learn about caring for all of the symptoms on an individual, personal level plus learning how to handle the entire “household”, make different living arrangements, transportation arrangements, learning about all the therapies, exercises etc. Many caregivers I’ve met along the way can’t and don’t want to learn all of this! Yet they have no choice. When one has no choice, is out of any kind of control over the situation, and the balance between the partners changes radically, there is going to be a LOT of anger, frustration, etc. I’ve prayed to be Mother Theresa!! And, darn it, I AM good at what needs to be done! I am happy to be strong enough to deal with things (mostly) and some caregivers I’ve known simply just aren’t wired for the long haul. Nor are they prepared financially which is terrifying. And then there are the changes to health insurance, coverages, and doctors. I think I’ll stop now!

Sorry it’s a long 2 cents worth!



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