Bart Astor is the featured guest writer for this blog, his book Baby Boomer’s Guide to Caring for Aging Parents, was one of the first books I purchased in 1998 when I started my practice.
In seven or so years that my wife and I served as caregivers to her mother, we made many mistakes. Some of those I know were detrimental to my mother-in-law and some to the whole family. For example, we moved her 4 times in that short period: to a retirement community, then to an apartment, then to a long term care facility near us, and then to another facility that provided better care at a lower price that was near my wife’s sister. Four times in 7 years! Contrast that with the previous 35 that she spent in one house. It’s no wonder she was confused and disoriented. By the third place she probably had a hard time remembering how to get to the bathroom.
Our reasoning behind the moves was sound though. She tried the retirement community and it might have worked out ok if her husband of 54 years had remained alive longer. After he died, she wanted to “go home” (her words). We didn’t realize that what she meant was she wanted to go back in time. But we supported her choice to live independently in an apartment in the town she had spent most of her adulthood. That didn’t work well at all. She soon needed an emergency response system and we worked out arrangements with neighbors and the local police to check on her. But it was almost an hour away from us and although we visited at least once a week – more often as time went on – we quickly learned that she needed more attention than she could get in that apartment. We hired people to help her with cooking and cleaning and that worked okay. But gradually she needed more and more help so we encouraged her to consider a long term care facility. After much discussion and after repeated falls in her apartment she finally agreed. But the facility was a half hour away from us and had specific visiting hours that didn’t always work well for our schedules. It was also not near friends she had or the rest of the family. When the prices increased dramatically, we jointly decided she would be better off in a less expensive but nicer place near my wife’s sister in Texas. She moved there and a year of two later died there.
Our reasoning was, indeed sound. Or so we thought. But imagine the stress we put her through. Even though we were smart enough to have her be a part of the decision-making process, in retrospect I think we made some huge mistakes.
Our first mistake was that we didn’t think clearly enough about the future. We didn’t plan ahead and realize what would come next. How naïve we were to think she could actually live independently in an apartment, even though it was in the town she knew. She didn’t drive! She couldn’t take the bus. And she wouldn’t pay for a cab. How would she get around? How many of her friends would be able to come visit? How many were even still around? At least we did manage to set up some kind of health support system. But it was not enough. The mistake wasn’t just not thinking about the future, though. It was not hearing what she was saying when she said she wanted to go the town she called home. She meant the past; we thought she meant Cranford.
Our second big mistake was not considering the toll it would take on us as caregivers, and how much that toll would affect my mother-in-law. Sure, we had read about and discussed with others the stress that caregivers go through. But reality was far worse. Driving through awful traffic to get to her apartment several times a week was torture, especially after a long day of work. Weekends were better but that meant scheduling visits around our need to run errands and have some kind of social life. And traffic! The weekly visits soon became two or three times a week, and even that was not enough. After she fell for the third time and couldn’t get up, we scurried around and found a long term care facility that would take her. It was nearer to us, but still 20-30 minutes away. When we moved her to the last place she lived, in another state, we were so relieved. We just hadn’t taken into account all that was involved in being caregivers.
The third mistake is an offshoot of the previous one. We took it all on ourselves. We thought we could do it alone. We didn’t involve my sister-in-law and her family. Or at least not enough. Sure it would have been hard for her to take an active role. She had teenage children and she lived far away. But she visited and called often. And to her credit she participated in all the decision-making and was willing to do more. But had we known more or been better prepared, there were things she could have done from afar that would have made it easier on my wife and me who bore the brunt, as do most caregivers who live nearby. We just didn’t know how to delegate to her. Had we done so, we all would have been better off. When my mother-in-law went to live near my sister-in-law, we continued to handle all of the financial and legal concerns. My sister-in-law still had the most work, but by making the whole kit-and-kaboodle a shared experience, it was easier on all of us.
So while we clearly made some big mistakes – at least three biggies – I want to emphasize that we did one thing right! During the entire ordeal we always kept my mother-in-law involved in all decision-making. We never overruled her, even when we disagreed. If I have one message to emphasize, it’s this: “Don’t try to parent your parent – they are not our children. It’s their lives so treat them with the respect you’ll want.”
Bart Astor is the author of “Baby Boomer’s Guide to Caring for Aging Parents.” You can get more information about this book at www.BabyBoomerEldercare.com.
