Care recipient: Mabel’s husband, Ken, who suffers from Alzheimer’s disease. Ken is 83-years-old.
Nominated by: Deborah Schultz, Mabel’s daughter (Read the nominating letter.)
In her words:
When I’m stressed I: Take a walk. If (Ken) wants to come I take him. He usually doesn’t and right now he is all right being left alone. He does not wander and I have made the house safe for him. If he’s quiet, I might call a friend and talk. Other times I play the piano. I do this badly, but it is soothing, which changes my focus, and often he comes in to listen. It soothes him as well. Other times, when things get pretty bad, I’ve even gone into the bathroom where I scream and cry for a while. At times it just feels good to vent.
My current challenge is: After six years with the disease, the challenge is to just get through the day. Since Christmas, however, he seems to have “dropped” deeper into the pit and my challenge here is to find some level where I can again reach him and strive to get back to managing a life that’s working for the two of us. Right now it has become extremely difficult. Very uncooperative, angry and fearful. No longer accepts “home” as his home and continually asks me to take him home.
When I have five minutes, I: Might sit with him as he watches TV. He seldom knows what is going on, but likes the TV on. Hard to tell how much he gets or understands. His conversation seldom makes sense. When he naps or if there is more time after dinner or in the morning I write a blog and am also working on a book about us before and during AD. I find writing very therapeutic, like bearing one’s soul to a counselor. It also helps me remember the way we were — that we were normal. The book also includes three years of caring for my husband’s parents with the help of his sister (who is now suffering from advanced AD) and three years of caring for my mother who had AD.
My mantra is: I picture an Italian villa (I guess it’s Italian), a rocky cliff above the sea, but not to high because I can hear the surf and the waves crashing. I don’t image a house, only the garden and patio. Warm with shade trees, the sun peeking through, blue skies, flowers everywhere and everything that goes with such a setting. Lots of comfortable places to relax. Or, I might just image myself sitting on the beach in the sun listening to the surf.
Recommended reading: For information, I recommend reading various blogs from other AD caregivers. Hearing the struggles of others allows me to “appreciate” that I am not alone and many have it much worse. Reference: The 36 Hour Day. I also would recommend some escape reading. Grab a few minutes and get lost in a good plot, but keep it light, something you can put down and pick up without frustration. If you are a person of faith, then do daily scripture reading.
The legacy I would leave to another family caregiver is: A cure for AD would be my first wish, but at this time I don’t see it happening very soon. So I would leave strength, courage, lots of support and a train load of patience; faith and hope for a cure — at least successful medicine for management — and the wisdom to ask for help. Understandably, there isn’t a lot anyone can do, other than offer to be with the patient for a caregiver break. And I would leave them my prayers.
My goal for 2010 is: To finish my book and continue with my blog. But mainly to, hopefully, continue caring for my husband in our home where he will be the happiest, if happy is a meaningful word for AD patients. Also, and very important, to take good care of myself, because as they tell me, if the caregiver gets sick, she/he cannot care for anyone else.
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Mabel Romick helped care for her husband’s parents, who suffered from Alzheimer’s. Then, she cared for her mother, who also had Alzheimer’s. So, when Mabel noticed changes in her husband, her words to the neurologist in January 2004 were: “I’m trying to avoid the ‘A’ word.”
The answer back—”Maybe yes, maybe no”—propelled Mabel to make the most of the time they had. So, she and Ken hit the highway in August of 2004 for a trip to the Southwest, knowing this would be (and was) their last major road trip. It was a bittersweet trip, Mabel acknowledges.
She believes Ken understood that, with the trip, a chapter of their lives was closing. At one point during their drive, the song “I’ll Be Seeing You” (“I’ll be seeing you in all the old familiar places”) began playing on the radio. They held hands and cried together. For Mabel, her tears reflected her thought: I will be the one, I will be the one who sees you in the familiar places.
Life today is about keeping a sense of normal “in this craziness,” Mabel says. Mabel hosted Thanksgiving at her house; Christmas Eve was spent at her daughter’s. “We all try to treat everything in a normal way and do as we always have done,” she says.
Within the normalness lies good and bad days. When Ken showers, shaves and gets a haircut, that’s a great day. About six weeks ago, Ken began balking at shaving. So, Mabel understands she has to let it go. It’s okay, she says, if he goes three days without shaving.
At 80 years, Mabel embraces a life-long dream of writing. She began blogging in December 2008 and plans to finish her book about her caregiving experiences this year. Her writing reflects her personal journey; a recent blog post features a touching conversation with her granddaughter about Ken’s disease and its impact on the family.
Sharing her story strengthens Mabel; perhaps, she says, that strength comes from Alzheimer’s. “I have found it’s allowed me to put it all out there,” she says. “I keep putting in more personal background in my book.”
Perhaps in the sharing comes the healing.
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Mabel joined us for a live discussion on Your Caregiving Journey on Wednesday, January 27, at 11:30 a.m. CT. You can listen to our interview via the player, below.
Visit Mabel Ann’s blog: http://annromick.wordpress.com/
Follow Mabel Ann on Twitter: http://twitter.com/annromick
Mabel is a special kind of person. She has dealt with AD most of her life, due to it being in her family, as she stated. She has the patience of a saint and probably needs every bit of patience that she has. She handles Ken with love even when he is in one of his moods, if I can put it that way. She has always been a good wife to Ken.
Dennis a/k/a “Rabbi”
Although I an not a close friend, I have known Mabel and Ken for years. Ken and I both worked with youth in our church.
From my point of view, Mabel is one-in-a-million, an awsome person.
What a wonderful way to start the week!
However, the letters, comments, and thoughts; (as compelling as they are) included in the nomination letter and above only begin to describe the wonderful work and selflessness of my mom.
Her entire life has been spent in service to others. Not only has she been “the glue” in our now scattered family , she has also touched countless other lives with her volunteer work at church, in girl & cub scouts, the community at large and as an invisible back-up to my father’s own, innumerable activities. She has cared for us all in public and private ways that will never be fully known.
We love you Mom!
To Dennis, Larry and Julie,
My heart has been touched by this whole nomination, and to find your your additional comments only adds to the honor that I feel. Thank you so much.