In July 2012, CAREGIFTED sent Ann to our charming getaway location in Eastport, Maine. Although CAREGIFTED will no longer be able to offer getaways at our Eastport location, we are glad that Ann had the opportunity to experience Eastport’s rustic beauty for herself and take some much-needed respite. Read below for selected excerpts on Ann’s thoughts on being a long-term family caregiver and her experience while on her getaway.
What does a typical day look like for you?
No day is typical in a sense, since I have to be able to respond on a moment’s notice 24/7 to a number of situations involving care for my three sons who have disabilities and my sister-in-law who has disabilities also. I also am an unpaid support broker for my three sons and sister in law who have self directed services/supports. I wrote the plans for them and manage the staff (8 staff) that the plan pays for […]. Organizing for the day includes making sure medications are ready and available for my sons, ensure staff will show up and if not or late making schedule changes, leaving a list of activities for the day, leaving a list for my husband for the day (he may have to babysit during the day so I can go to appointments and/or meetings), feeding the dogs and taking them out, getting ready myself for the day and driving to my daughter and her husband’s house 13 miles away. Once [I’m] there at 6:30 AM, [I] get my grandsons up [and] get one ready for school and the other ready for the day.
As the day goes on I lose energy emotionally and physically with the demands of being on call 24/7 for several people. At night there [are] the responsibilities of handling the household things that need to be dealt with, since I am seen [by my family] as the one that needs to resolve any issues, etc. I try to fit in time at the Fitness Center to exercise at least three times a week.
What’s the hardest part about caregiving that nobody sees?
Wearing a “mask” and living in a “glass house”. Even when things are tough, I feel a “mask” is necessary since most people don’t want to know too much. I think they may feel like they are helpless [against my situation]. People rush to help in acute situations, but when [the issue is] chronic or ongoing, people shy away, since there is no easy fix. Living in a “glass house” means someone is “always watching” and can report what they may feel is not appropriate.
What about caregiving brings you the most pleasure?
I took care of my mother in law, who had some health issues. She wanted to do [many] things herself that I ended up doing, such as treating the ulcers on her legs. I wanted to give back to her the support and love in doing a simple task such as that, because she had supported us with childcare over the years when we needed respite from our five children! [Caring for her was] more than “payback.” Sometimes [there is the need to] “pay [it] forward.” I feel blessed and “richer” from the caregiving experiences I have had. I have learned much, met people (like Heather) whom I probably would not have met if not for the caregiving experiences and been places and experienced things I would not have dreamed of! In serving so, [I have been] served in different ways! Being recognized for caregiving is not what it is all about; it is about serving others in ways it may enable them to also serve others (not in a payback to me).
Describe a moment during your getaway when you felt the most relaxed or at ease.
Going out to the island and feeling free, relaxed, peaceful, youthful, energized, [and] in a way, renewed.
How has your getaway changed your perspective on life and your role as a caregiver?
I am alive and want to live. At times I feel and have felt envious of people our age who have a “life” where they can come and go without structuring and managing a variety of things to enable time away together. I know that everyone has challenges in life and that a life seen as “easy” from my “side of the fence” may not be easy for those living it. I remind myself of the joys and blessings I do have with opportunities to learn, meet people and to experience things such as the trip to Eastport that I most likely would not have experienced otherwise. I am “richer” in ways that are different!
It has renewed our marriage. My husband was hesitant about how we could actually go, but as time came closer, he was determined to go, and it would work out. Coming back was our mutual understanding that we needed as a couple to find and take respite times away. I tried to plan at least one night away every other month, and we did actually take a weekend away for our 45th anniversary in December. I had told Heather that our July trip was our anniversary trip! But it was great to do it on our own in December on the actual date.
CAREGIFTED admires the work of Ann and all family caregivers who carry on day after day. Thank you for sharing your stories with us, and thank you for your tireless work! Your lives and works are our organization’s inspiration.