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How long have you been married? How did you meet?

 

We have been married 47 years - January 25, 1969

 

She was a freshman at Bethel College in St. Paul, MN, and I was a community college transfer junior from Oakland, CA. My first morning I came to the cafeteria at 7:00 am when they opened, not realizing they would be open for at least 2 hours. It was semester break in February 1967, so few students were on campus. When I brought my tray, the only people in the cafeteria were 3 girls, so I asked in I could join them and when they agreed, I introduced myself. In the course of the conversation Candy and I discovered that her pastor in Minneapolis, who had been the associate pastor in my church in CA years earlier, had picked me up at the airport and brought me to campus the previous afternoon. We also discovered that the current pastor of my church in CA had married Candy’s parents when he had pastored a church in Minneapolis. That started us with some instant connections, on which we built during the spring semester. Though we had not specifically talked marriage yet, we knew we were closely connected and we kept building our relationship the next year even though she left college and went to work.

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When was your loved one diagnosed? 

 

October 26, 2011

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How long have you been a caregiver and how did you end up taking on this role?

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I guess I became an intentional caregiver at the end of March 2016 when Candy came home from a week in the hospital after wandering from the house twice in the middle of the night. In retrospect, I think we can both see how her situation had been developing gradually over the past 2-3 years and I began to pick up more of what we might call care giving roles without recognizing it as that. We’ve never had a strong gender distinction in household responsibilities, so for me to do more laundry, cooking, cleaning, dish washing didn’t seem too big a deal. She still does as much as she feels drawn to, but I have pretty much picked up most of the household management in the last couple of months. 

 

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What has been most helpful to you during this time and how?

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We are still so early on this journey that it’s hard to say what has been most helpful. I had heard Dr. Kerwin speak to the Attending Clergy Association at THR Presbyterian Hospital Dallas some months before this, so felt I had some insight into the Memory Disorders program, and we are very thankful for how they have walked us through getting started on this journey. Several friends have also helped a lot by making it possible for Candy to get out and socialize with other people at least once a week.

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What has been the most challenging part of being a caregiver? 

 

Perhaps the biggest challenge for us who are so new to this has been dealing with Candy’s sense of being restricted and diminished in being trusted. The first 2 weeks after hospitalization we had to have the doors of the house locked from the inside so she couldn’t get out, and the next 2 weeks I had to be with her continuously. When we got the OK for me to leave her for a few hours in the daytime, that was a great help, but she is no longer driving. Even though she didn’t drive much, she does feel restricted in not having that option. She is struggling with some loss of autonomy as she is not dependent on me (or occasionally a friend) to even do basic errands or shopping. We had been doing grocery shopping as a kind of couple date for some time. So that’s not such a big deal, but not to be able to go on her own at all cramps her style.

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We have been very close over the years of our marriage and often leaned on each other when one or the other was struggling emotionally. I am finding myself reticent to share with Candy my feelings of emotional fragility, particularly when they are in some way related to her. It’s more than protecting her or hiding from her. In some ways it is another dimension of the grief of letting go of some of the old normal to embrace the new normal. One part of that is that I think I’m going to be wanting a referral to a counselor for myself. The support group (I’ve been to two sessions) is good, but comes with a little different agenda and sharing in the group is different from one on one. In some ways, I think, part of the reason I responded to your questions so quickly, and wanted to include this addition, is that with so much emotion surging up, I find talking about this to be beneficial. Somehow, that needs to be distinct from what Candy needs. Also, it is different from when we are both involved as I think I tend to over talk and jump in too quickly when her communication falters a bit.

 

Imagine that you've just met a person who's loved one just received their diagnosis yesterday. They are at Day 1 of this journey. What advice would you give them?

 

I guess I feel like we are that person who had just gotten the diagnosis. I think all I can say is: don’t try to go alone!

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Is there anything else you would like to share?

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As a retired pastor with 40+ years of experience, I have accompanied a lot of folk on this journey, but knowing about it and supporting others on the journey is nothing like being on the journey yourself. I do think my pastoral ministry has prepared us for this perhaps better than some other folk, but it sure feels different when it becomes your 100% experience instead of being with people in their distress for a time (sometimes protracted) and being able to go home where you’re not facing these challenges. I am learning to be the receiver of support from others rather than the giver of support. That’s not just in terms on Candy’s situation but even being in worship and listening to someone else preach instead of preaching myself is an adjustment. Of course, we have some anticipatory grief, even as we hope and pray Candy’s progression will be slow and are trying to find our new normal, but we are grieving letting go of some parts of our old normal not just anxiety about what will come when in the future. Even before this happened, I knew the church I was serving as half-time interim pastorate would be my last pastorate, and I was already grieving things like knowing I would not be preparing and preaching sermons again.