Meet Lynn, Aj, and Eliza!
What’s your caregiving story?
Lynn: We’ve been caregiving for three years. We care for my mother who was unable to care for herself after she suffered a compression fracture in her back. Previous to that, we also helped her to care for my father who had dementia. Both remained in their own home. We currently have an agency caregiver attending to mom five mornings a week, a helper who comes in to give her dinner and help her get into bed four nights a week, and a friendly visitor who drops in for quick visits twice weekly.
Eliza: I have been caring for my grandmother, whom I call Aj, for about three years. The summer between my freshman and sophomore year of college I cared for her full-time, and now the ever-increasing responsibilities are divided among more people.
What’s the hardest part of being a caregiver?
Lynn: For me, the hardest part of caregiving is the 24/7 of it all. It’s really impossible to plan a vacation. Even though a quick two-day getaway is doable, it still takes lots of planning to make it happen. I so love my mom, and want to honor her and her desires to remain in her own home, but some days I just don’t have the energy or the desire to walk into her house, and start the care, one more time. (Just last evening while sitting in my car before entering mom’s house, I caught myself just staring and sighing, preparing to go in and start the nightly routine.) In my heart, I don’t want to feel this way, because I want to convey the message to mom that she’s worth it, not that she’s a burden to me.
Eliza: There’s something that shifts when you become a caregiver for a family member. The dynamic between Aj and me is no longer simply grandmother-granddaughter — though that is there occasionally — but is a new sort of relationship. Sometimes I speak sternly to her, which I never would have done growing up. I ask her more personal questions than I would ever ask a family member. I constantly think about her physical needs and limitations and try to problem-solve for her before she realizes there is a problem. Sometimes I miss the comfort and familiarity of having that grandmother-granddaughter relationship all the time, and it is difficult to accept that I gave parts of that up when I took on a new role. As Aj loses more of her memory, she knows me as a nice lady who comes in to help her, and sometimes it hurts that she no longer remembers teaching me how to sew, or slicing oranges for our snack when she would babysit me.
What do you need the most as a caregiver?
Lynn: Good organizational skills! We have three different caregivers helping mom during the week, plus we as a family take dinner to her every night and help her to bed three or four nights a week, as well as weekends. All of this takes lots of organizing and reorganizing. We are also caring for two households, ours and Mom’s. Sometimes, I don’t feel as if I’ve “covered all of the bases” in two households very well, but am just keeping my head above water. My family is a HUGE help in all of this, and is so understanding. We all jump in and help, so I don’t carry the responsibilities alone.
Eliza: I think it is easy to abuse the word “need.” There are plenty of things that would make my time caring for my grandmother easier, but when it comes to absolute necessity, the list proves to be much shorter. In our family, I recognize how much an “all hands on deck” mindset helps. The evenings when we are at Aj’s house for dinner and to put her to bed, everybody is doing something, and without that I think my mom and I would lose our minds. There is always something that needs to be done. It really “takes a village,” and I am forever thankful that my whole family has taken on some of the responsibilities of caregiving. Family is such a gift from God, something of which I have been reminded time and time again while caregiving; and while my family, like every family, is chock-full of flaws, it is much more obvious to me that they are full of selflessness, generosity, and so much infectious love. And those are all that I truly need as a caregiver.
What worries you the most as a caregiver?
Lynn: Three things worry me: I’m not sure how much longer I can keep my job and continue to care for mom too. I have a very understanding husband, but caring for mom takes a lot of time away from him. My husband and I are 68 and 64 years old, respectively. We do a lot together at Mom’s home (last week, we went to mow and trim bushes together), but the heavy responsibilities can filter down into your marriage. I also still worry about mom’s well being. She is alone in the afternoon for four or five hours, and I worry that she feels lonely and isolated.
Eliza: I constantly worry that I am forgetting something. Someone once accidentally left Aj’s walker just out of her reach, and Aj couldn’t get up for hours. It is so easy to forget something that is going to be a huge deal to her, and that is always on my mind. I also worry that if I forget something, she will interpret it as a lack of care or concern for her. She is extremely hard of hearing, so it is difficult to explain to her when I make a mistake, or to tell her how much I love her, or to let her know I’m not frustrated with her. There are lots of nose kisses and feet tickles and hand squeezes to communicate non-verbally that I am there for her.
What do you want people to know about caregiving/your caregiving life?
Lynn: I know God has a plan for Mom’s life and for ours. At this time our job is to care for her. It isn’t always easy, but it is the right plan for us. We have such joyful times mixed in with the mundane! We try to create fun times at Mom’s house so she can be in the center of it all. We host spontaneous tea parties, ice-cream churning gatherings on her deck, and fashion shows with her old, dated clothes. We even had our own Oscar Awards party, complete with a red fabric “carpet,” and dressed mom up in a fur jacket!
Make up your mind to celebrate life, and let the ideas flow. It’s important to remember though, that sometimes you just won’t have the energy to think of any fun ideas, and that’s ok! In the future, I know that our family will look back on this time with thankfulness that we were able to share our lives with Mom.
Eliza: I wish everyone could understand what a commitment it is, as well as how much of a priority it is. Since I attended college about an hour away from home, there were many times when I would drive back home to care for Aj, and my friends simply didn’t understand that not only is my time with Aj a commitment that I need to stick to, but it also takes precedence over many other areas of my life. I refer to Aj as my best friend first and foremost because she brings me so much joy and has taught me so much about life, but also because people my age typically understand friendship more than they understand caregiving; they understand that when a friend needs you for something, you drop everything and care for them, and that translates well into caregiving.
If you got unexpected time off from caregiving, what would you do/where would you go?
Lynn: Years ago, as a high school student, I read Travels with Charley, by John Steinbeck. My dream trip is influenced by this book, I believe. I’d like for my husband and me to purchase a little drive-it travel van/trailer, and just set out tooting around the country. On a smaller scale, I’d just love a carefree week, where mom’s needs were TOTALLY taken care of by another (including caregiving, meals, paying bills, lawn care, calling a plumber for the leak, filling pill boxes, washing clothes, setting up her coffee pot, cleaning her house, watering her flowers on the deck, getting the mail, ordering her medical supplies, etc.). Wouldn’t that be nice?
Eliza: My caregiving experience is different from most, because I am fortunate enough to share responsibilities with others, mainly my mom. To get time off from caregiving usually means that someone else in my family is taking over for me, so we haven’t had the chance to do things together, just the six of us, in a very long time. I really do miss that. If all of us were to get time off, and Aj was taken care of 100%, I know we would all love to go back to the Outer Banks where we used to vacation as a family. But if it was an evening off, I think just dinner at home all together would be just as much fun; no packing up dinner, no figuring out how many cars we need to take so everyone can leave when they need to, just a family dinner like we used to have.
Thank you for sharing your story, Lynn and Eliza. Thank you for sharing the hidden joys of caregiving, but also the hidden challenges. Thank you for your faithfulness to your family, and your commitment to caring for Aj. Thanks for showing others that, while cooperative family caregiving is never easy, it can be done.