LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Wednesday, October 1, 2008

marriage and chronic illness

A post I read on the Wellspouses forum has me thinking. It was from several months ago but if you are in the group you can find it by searching for the subject "How do you define a healthy WS/IS marriage". I don't want to quote it because I haven't asked permission, but the general argument is that when a spouse is temporarily ill we relate to them by making a fuss over them, but that doesn't work for a long-term illness or disability. The author argues that in the situation of a long-term illness or disability the ill person should as much as possible take responsibility for figuring out how to manage their own care, just as they would if they were single. The key suggestion is to avoid taking responsibility for the other person, but instead let them take the consequences of their own decisions as much as they are still capable of making reasonable decisions. That makes me realize I've fallen big time into trying to rescue John (and then resenting that role). And he isn't to the point where that is necessary yet.

1 comment:

Lisa C said...

Thank you for brining up this topic! I think it's an area very rarely discussed. I have rheumatoid arthritis and am 40 and have been ill since age 24; married since age 26. Having an illness can force you to stay on top of the communication in a relationship, but if it breaks down, it can also falter very quickly. I am also the founder of National Invisible Chronic Illness Awareness Week and Rest Ministries, a Christian organization for those who live with chronic illnesses. We have 2 groups if people are interested - one for men who have a wife with an illness, and 1 for women with an ill spouse. There is also a lot of other support at www.restministries.org/pro-spousesupport.htm . Right now we are encouraging people to go see the movie Fireproof too. It's a Christian film but was #4 at the box office last weekend because it's had such an impact on marriages. I wrote a blog about why couples w/ illness should see it too. It really shows how much most people just want to feel appreciated and gives concrete ways that spouses can do that for each other. Sadly 75% of marriages with illness end in divorce, so it's definately an area that we need to consciously make an effort every day to be careful with our words.