Two and a half years ago, my mom and dad hiked to a backcountry yurt with Richard and me, plus my brother and his youngest, to celebrate my dad’s 80th birthday. The next summer, they toured Norway with my brother, my sister-in-law, and that same youngest, the intrepid Alice, to reconnect with my dad’s cousins, who are scattered between Bergen in the clement southern end of the fjord country, and Trondheim, much closer to the Arctic Circle.
(The photo above is my cousin Halvard Tveit, Mom, Dad–with binoculars up, and my brother, Bill Tweit, birding near Halvard’s vacation cabin near Trondheim. The trees look stunted because, well, they’re growing on exposed rock in thin, nutrient-poor soils, and they’re just south of the Arctic Circle, where the summer days may be very long, but the growing season is very, very short!)
This year, my folks didn’t travel, but they did move upstairs in the retirement community where they live, and we took them on short excursions around the Denver Metro area. My mom went from using a walker for going long distances (like hikes around the nearby lake!) to needing a wheelchair, to spending essentially all of her time in a hospital bed at home with hospice care. (Thank you Pam, Sharon and crew–you’re wonderful!) The latter transition began in December and has been so swift that we’re all still getting used to it.
My dad, at 82 years of age and legally blind (glaucoma left him with a patch of vision in one eye that doesn’t line up to the patch of vision in the other), is now her primary caregiver. Most days he’s aware of and reconciled to the fact that her body is failing, but as the incurable optimist he is, some days he seems to think she’ll be up and about before too long. I guess that’s a pretty normal part of the grieving process: some days you’re okay with what you wish wasn’t happening, and other days you convince yourself that it’s not happening at all.
My mom, 79 and now suffering from Alzheimer’s disease on top of decades of debilitating rheumatoid arthritis, simply doesn’t understand this new reality. In her mind, she’ll be up and about in no time. Her short-term memory and her ability to learn anything new is impaired by the Alzheimer’s; her image of herself is stuck as the person she was last spring, mobile with help from a walker, still in charge of the household, and perhaps most importantly, still able to feel in charge of her life. (The photo below was shot at the Brown Palace Hotel in Denver last April, at high tea in celebration of her birthday.)
Now she can’t take charge. She also can’t understand why her body won’t do her bidding, and she’s (understandably) not happy about it.
I’m okay with the process, and while I don’t want her to die, I can see what’s ahead. My job, as I see it, is to help my dad manage her care and also take care of himself, and to do anything I can to help with my mom’s transition. That’s not easy, especially lately, as the anxiety brought by her Alzheimer’s makes it difficult to reach her, especially over the phone. (I call them almost every day.)
Which is why Richard and I, after getting a month off our regular trips to Denver for his brian cancer treatment, are now making that trip every ten days or so anyway to help my folks. Our presence gives my dad a break from the constant demand of caregiving, my mom enjoys the company, and I can check in with the hospice staff and help manage her care.
So while my mom’s in a transition with her life winding down, and my dad’s transitioning from being cared for by his spouse of 58 years to caring for her–and ultimately to learning to live without her, I’m transitioning from daughter to manager of end-of-life care. It’s not a job I trained for, or ever aspired to. But it’s what I can do to help the parents who have loved me all my life (even when they didn’t always appreciate what I was doing!) and whom I love dearly (even when they frustrate me).
While I’m doing what I can to manage that transition, I’m also collaborating with Richard on his journey with brain cancer. (Is it any wonder I fantasize about a vacation?) Hence our next trip: we’ll leave for Denver Sunday to spend some time with my folks before going to the VA Medical Center on Tuesday for Richard’s next test: his five-months-after-surgery brain MRI. I’m envisioning images of a very healthy brain!
Bless you all for walking this journey with us. Be well, and cherish each day as it comes!