Caregiver Honor Roll: Debbie Miller
Debbie Miller takes care of her 62-year-old husband, Jim, in Newton, Kansas. After 20 years of marriage, Debbie's husband was diagnosed with dementia and Alzheimer's, though she suspected something was wrong with him a few years before his diagnosis at the age of 58. "This is a life-changing illness that I never thought I would go through," she says. "I fight for that peace that comes with acceptance."
Before caring for her husband, Debbie took care of her third child, who was diagnosed with Prader-Willi syndrome. In her late 30s, as a result of this experience, she decided to go back to school and earned a degree in special education, specializing with students who have emotional disturbances. "Little did I know that I was in training for the future care of my husband," Debbie says.
Biggest caregiving challenges
A common symptom of Alzheimer's is the impulse to wander away. This symptom has been one of Debbie's biggest challenges in caring for Jim, who has wandered from home on several occasions. "I don't think he runs from me," she says, "but, rather, from the illness."
Since the diagnosis, Jim, who was formerly a lawyer, has been frustrated about having to give up his job and being unable to take care of Debbie. Consequentially, Debbie has invented jobs for her husband to do to feel successful. Since finances have become such a problem, most of his jobs are to help the couple live frugally. He helps with the laundry, working with Debbie to make the soap from scratch and hang the clothes on the line to dry, as well as with washing dishes, rather than using a dishwasher. Jim also helped create a successful garden space in the backyard. "During the summers, both the garden and my husband bloom," says Debbie. "We usually have enough food that I can freeze some for the winter!"
Convincing her husband to eat and bathe on a regular schedule has also been a feat Debbie has overcome. With time and trial, she's found that asking her husband what he'd like to eat or when he'd like to bathe is not effective. "I discovered that if I simply make him a plate and tell him, 'Time to eat,' he'll sit down and eat. If we ask him if he's hungry, he'll refuse to eat and we have to wait for a while and try again," Debbie says. Instead, she finally figured out to just create his schedule. "Brushing teeth, taking shower, changing clothes is also an on going struggle. Now we get his things ready, and say it's time to do this, and he complies."
Debbie's emotional journey started with the prediagnosis phase. "I knew something was seriously wrong with my husband, but all we could get from the doctors was that he was depressed," she says.
Two years prior to being diagnosed, Debbie observed Jim forgetting simple things, like their dog's name or what day of the week it was. "Then, one day, everything fell apart," she says. Jim lost all short-term memory for about a week; then some of it came back. They were sent to a Kansas City medical center and were seen by a dementia specialist. After the diagnosis from the MRI, family observations and various other tests, the doctor explained why he believes it's Alzheimer's. "It changed my whole attitude and validated the fact that I had done all that I need to do to understand the problem," Debbie says. "I could finally treat him, slow down and give him opportunities to be productive and live with a high quality of life for as long as he can."
Since the diagnosis, Debbie says the continual loss of her husband "piece by piece" is one of her biggest emotional challenges. "I thought in the beginning I would grieve, and then it would be OK, that I would have a handle on it. What I did not get was that the progression of the disease does not take a break," she says. "It's so hard to stand by and watch someone you love struggle through this. I grieve each major change and loss that my husband goes through. I've learned that if I fill my heart with resentment and wear grief on my face, that's all I can think or talk about. But if I fill my heart with gratitude and hope, then that is what I can live."
Like so many other caregivers, Debbie turns to Caring.com's online support group to vent, listen, ponder, and share experiences with others caring for a loved one with Alzheimer's or dementia. She recently responded to a fellow caregiver who was looking for support from others: "We're here together so we can be strong. When we're by ourselves and thinking and believing we are alone in this, that's when the anger and feelings of loneliness begin to seep in." She adds, "When someone doesn't have a solution, she or he can come here and ask others with similar life experiences, and those who may have experienced this already can offer help and hope."
Tips for other caregivers
Debbie has a few great tips that have helped her during this caregiving journey:
Stay positive and have a plan."This isn't easy to do, but your loved one and you will be better off in the long run," Debbie says.
Find a community of support. Debbie has found multiple resources that offer her and her husband support. She attends a monthly Alzheimer's support group where she's able to ask questions and offer support to other caregivers. She also taps into a support group for caregivers dealing with dementia. Caregiving blogs on the Web are also helpful, along with attending caregiver workshops when they're offered. Finally, she stays connected to other caregivers each week through Steps & Stages on Caring.com. "Talking to others has helped me figure out what things I need to put into place when," says Debbie. "It also tells me that I'm not alone."
Think in terms of problem solving. When faced with a communication block with Jim, Debbie addresses the emotional aspect of the conversation and turns the subject to the present. For example, when Jim is suspicious of his son stealing socks from him, she tells him, "It must be frustrating for you when things aren't where you think they should be. Maybe I can help you find that."
Give yourself a break from all of it. Instead of allowing guilt to take over, Debbie takes a walk downtown to have a few minutes alone and returns once she feels relief.
Find ways to share moments with your loved one. After Jim's diagnosis, Debbie was reluctant to venture out of the house. However, she started taking Jim to a secondhand store that they used to go to, and she got creative with their trip. "I invented a game where I gave each of us a dollar or two," she says. "Each person had to find the best treasure in the store. We played this game for the first six months after his diagnosis."
Favorite song, book, or movie shared with loved one
Debbie remembers Benny and Joon as a special movie she shares with Jim. They watched the movie ten years ago and still enjoy watching it together. "It's about two people who, despite having emotional and social difficulties, fall in love," Debbie says. "It seems even more fitting now!"
Jim also sings in the choir at church. "We used to play in the bell choir, but he is unable to continue that," Debbie says. "Though with a little support, he really enjoys singing in the choir."
We hope you'll share your supportive comments with Debbie below, or send her a virtual hug or prayer via her Caring.com profile.
My goodness. I am more impressed than ever that someone I've known most of my life has so much to offer this world. You are an amazing person. Your journey makes me realize how strong we can be when we need to. I will forever love, respect, and admire you. Love Betty
story so simular to mine..
Good info for the future for me
Thanks for sharing your story and journey. I fear that my dh is going through a similar fate. He is only 63 and has "depression" with some memory loss. I do like your ideas.
Yours is an inspiring story to those of us who are also on this journey with our spouse. Thank you for sharing suggestions on how to maintain sanity during this process, and that the grieving continues to be a process. Ã¢â„¢¥
I think Debbie is amazing !! Her positive attitude could become addictive and I appreciate that. She's been very creative in helping Jim to continue to feel productive and contribute to their family. She confirms for me that the "time to eat", bath etc is easier to get done if approached as a scheduled activity rather than a suggested one. I loved the game she came up with at the secondhand store, very fun !! I find I just loved their whole story and I am grateful for Debbie sharing and putting it all in words so eloquently. â™¥
Wow - you have a great attitude, and having a plan is definitely an asset! Thanks for sharing your story. Continued blessings on you and Jim! â™¥
Thank you for sharing your and Jim`s story â™¥ I identify with your statement " I fight for the peace that comes with acceptance---it is so true! When we accept instead of resisting,we will have peace. Hugs to youâ™¥