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John & Jane: Living, Loving, Caregiving

Our friends from Baptist’s AgeWell Center for Senior Health recently sat down with John, one of their male caregivers, to talk about his life as husband—and now caregiver—to his wife, Jane.

John, tell me about your history with Jane.

I met my wife in 1964 when I was in graduate school and Jane had just graduated from college. I began an internship in New York City, but we kept in constant touch, marrying in June of 1965. During the next several years, Jane worked as a third grade teacher and I began my residency training. In 1972, I became junior partner while Jane took over the task of raising what was to be our three children. In 1972, I began practicing as a junior partner in Long Island. In 1979, we moved with our young family to upstate New York so that I could open my own practice.

Tell me how you came to be a caregiver for Jane and how your own life changed because of this transition.

Shortly after moving to the beach area here in Florida, where we made a permanent residence out of what had been our second home, I began to notice some slight changes in Jane’s cognitive functioning. I hoped they were normal signs of aging but was aware that my wife had a family history of dementia. When a few years found further progression, I discussed it with my children (all in other states). Although they visited only on special occasions, they, too, noticed the changes (which appeared even more dramatic due to the changes that occurred during the intervals of their visits, vs. my daily interactions with Jane).

About three years ago, my own health problems necessitated having my children come down individually to help. We all agreed that Jane had more than just mild cognitive deficiency. I decided to sell our home at the beach and relocate to a smaller and more manageable option at Cypress Village. Here, they are responsible to every bit of maintenance and also have assisted living and memory care facilities if that is later needed.

My life changed after this move, in that I no longer have nearly the responsibility that I had before. However, I now must limit my time away in an ever-increasing amount due to my wife's anxiety when I am not with her.

Prior to coming to the AgeWell Center for Senior Health, what was your experience in getting the care your wife needed? How has AgeWell been important in your experience?

Prior to AgeWell, I had little or no experience in obtaining care for my wife. Although I realize that Cypress Village has extensive resources in these areas, I felt that at this stage I could handle her problem myself. This was also spurred on by my feeling that any part-time assistance I obtained, she would not tolerate, and it would possibly create more problems than it would solve.

After my multiple visits to AgeWell, my eyes have been opened to just how extensive the deterioration has become, due to their very detailed testing, discussions and suggestions. It has been of immense value to me, as well as to my children, as to just where we are in the process and more importantly where we are going and what to expect.

What is the biggest challenge for you as your wife’s care partner? As a man in particular, have you found any issues in caring for your wife?

The biggest challenge I have experienced thus far has been convincing her to give up driving, which unfortunately I could never accomplish, resulting in my having to just make the decision to turn the car in. As far as challenges from the male care partner perspective, the obvious ones were to try to take over some of my wife’s previous duties (cooking, grocery shopping, trying to keep up with family birthdays, shopping for clothes and feminine products, etc.). Thankfully, my daughter has provided assistance in these efforts. When I have semi-emergencies, there are a few close, local females who have kindly helped to direct me. Socially, our schedule has become somewhat limited since it seems that meeting new groups is something that is quite challenging, so we pretty much only socialize with family when they are down or very close friends.

What do you wish more people understood about the experience you are having?

I was sadly lacking in the specifics of everyday symptoms as well as appropriate behavior in dealing with ongoing changes. I was fortunate to meet the wonderful staff at the Baptist AgeWell Center for Senior Health, who not only are amazingly knowledgeable about the illness and its ramifications, but also have remarkable patience and empathy in dealing with both the patient and the caregiver. I feel so fortunate that they were able to accommodate me and my wife in this way. I wish most people understood more about the entire process and that the AgeWell Center for Senior Health exists. Secondly, I find that the continual stress of almost constant and ongoing supervision to be the most difficult problem for me.

What do you most need as you care for Jane?

I most need direction. Right now, I could use a little more time to be free from the constancy of the necessary supervision required. However, since as I've mentioned previously, my children are all living in other states. I feel my wife would not readily accept any outside assistance. So, for now, I feel I must deal with the status quo.

However, and more importantly, I am well aware that this problem will deteriorate at its own pace, whatever that may be, and my most pressing concern and need is to have some sort of pre-determined plan to deal with an immediate, unexpected emergency of my becoming disabled or worse as to whom will step in until my family can decide on what would be the next step. My wife at this point, if left to her own devices even for a short period (minutes or hours), could be in immediate risk. At her present level of cognizance though, I cannot in good conscience even consider moving her to a memory care facility, so I think this is where some hard decisions have to be made. Unless I learn of some other options it will probably boil down to picking the best of the worst choices.

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