Being a caregiver for someone with dementia is tough and exhausting. Why do we do it? Why did I and why do you accept this difficult assignment? As a song goes, “I did it for love.” Yes, I really loved my mom and my husband, both now deceased, and wanted to be there for them.
In mom’s case I consulted my siblings and found that my situation was more favorable than theirs to be her main caregiver. My mom was loving and generous, now it was my turn to show my love to her as her main caregiver. With my husband there was no question. When you’ve lived with and loved a man for forty-some years you take care of him when he needs help.
Your story and circumstances may be different than mine, but if you’re a caregiver or former caregiver, I’d bet love was a big factor in assuming the role. Here’s what one caregiver said. “My name is Emma (Spinosa) and my story is about love, dignity, respect, integrity, support, and loyalty. I have been caring with love and devotion for my husband, Frank, who is in the advanced stages of dementia, for about eight years. At 62 years of age, Frank was diagnosed with this terrifying and painful disease. Frank is the love of my life, has always given so much and treated me and everyone around him with the utmost dignity and respect.”
Emma’s story is typical, I believe, of caregivers who love their spouses and take on the challenge of helping the other through the long decline of dementia. Emma shared some details of their life. “We’ve enjoyed concerts in the park, trips with seniors, community events, musicals, movies, the library, and dancing. As the disease is advancing, it is getting harder, however, I still take him on walks, shorter ones. Trips get a bit more complicated as he sometimes struggles with getting in and out of buses.”
“My main goal these days is keeping him happy, calm, and if possible, stress free. I prepare healthy meals, order his medication, get it ready for the day and ensure he takes it. I take him to the barber for grooming, take care of his oral hygiene, and make sure he is healthy. I also help him bathe and dress, as I do not want him to fall down. I keep him busy with meaningful activities that he seems to enjoy.”
To my mind, this is a love story, one that I see again and again in our memory loss/caregiver support group. Here are Emma’s concluding words, ”Our love is stronger than ever. We fully enjoy every moment together as long as we possibly can. We have kept a positive attitude. We still dance, laugh and sing. We live a different life than we had planned but we are still living a fulfilling life. The challenge as this disease progresses is seeing your loved one’s inability to communicate fluently or be present at all times. It’s hard to watch someone you love eat less, struggle, and be unable to do things that were such a part of his daily life before.” Emma’s story can be found online, “The Evolution of Love and Devotion in Dementia Caregiving” from Home Care Assistance.
From another online site, A Place for Mom, comes “Lessons of Love from Caregivers,” their response to a request to share the most important lessons they’ve learned from caring for and loving others. The first one is, “I am strengthened most by knowing in my heart that unconditional love is the one most important part of my role in truly loving and accepting my mom exactly where she is, in any given circumstance.” – Terrie G. Some of the other lessons shared, include: “It makes you feel good about yourself and it makes your bond so much stronger.” – Iris C. “It’s not how often you call that counts, but how present you are the times you do.” -Tracey F. “I learned that the circle of life is an enduring treasure.” – Patricia F. “ No matter how much you do for someone else, you can always find room in your heart to do a little bit more.” – Marie S.
“What matters most is the service to others.” – Bobbi C. “When you give and do from the heart, it always gives more to you in return!” – Nik S. “When you love someone so much, life itself is almost nil. That one smile coming from those that you are caring for can almost melt your heart.” – Marie S. “You do it for the welfare of the one you’re caring for, not yourself.” – Celeste C. “You only keep what you have by giving it away!” – Kathleen K.
If you are, or have been, a caregiver you can probably relate to Emma’s story and the quotes from caregivers. If you would like to be more intentional about the ways you show love, consider checking out the crhcf.org/ Blog/the-five-love-languages-of-caregiving/. The information given is from marriage expert Gary Chapman, author of “The Five Love Languages” (1992), who believed that all people express a desire to receive love differently. His book identified the types of love that appeal to different people.
Blogger Megan Fields Lawler, LCSW, adapted the love languages to caregiving, “the caregiver role is one that is full of so many emotions and yet the central expression is love. It is true that some people give care out of a sense of obligation, but most have the driving force of love and devotion. Love is what gets them out of bed for the third time in the middle of the night as they hear their loved one calling. Love is what drives them to spend hours each week organizing medications. Love is what encourages them to sit down and listen to mom tell the same story over and over again.”
The first love language, Words of Affirmation includes speaking words of appreciation, not keeping a record of wrong, being kind, and not demanding anything but requesting it.
Quality Time is the second and might be really listening when your loved ones speak, gauging their feelings without trying to fix anything, not interrupting, and making time for quality activities.
Receiving Gifts, the third love language might be accepting a gift no matter how small with gratitude, giving the gift of self while being really present and calm, and giving a small token of appreciation.
The fourth love language, Acts of Service includes bringing a meal, cleaning the bath- rooms, doing laundry, taking mom to the grocery store or picking up items for her.
The fifth love language is Physical Touch. Having something soft to hold when you leave, such as a soft pillow, a teddy bear, or a blanket for their lap may comfort your loved ones.
My mom and husband both responded to quality time together, especially if it included singing, playing, or listening to music. They also liked looking at family pictures. So on Valentine’s Day I spent time with family picture albums, played “My Funny Valentine,” my husband’s favorite love song, and gave my teddy bear lots of hugs.
Shirley Woolaway has an M. Ed. in counseling and worked in journalism, in business, and as a therapist in Pennsylvania. She has 25 years personal experience with dementia as a caregiver for family members with Alzheimer’s disease, and nine years as the coordinator of an Alzheimer’s Association memory loss/ caregiver support group, earlier in Pennsylvania and now on Marco Island. We believe that Shirley’s insights will prove helpful to many of our readers.
For help on all aspects of Alzheimer’s disease and other dementias call the national Alzheimer’s Association confidential, 24/7 helpline at 800-272-3900 or the local Bonita Springs office at 239- 405-7008 for care consults and support group information. Also helpful with local educational programs, workshops, and support groups, is the Naples Alzheimer’s Support Network, 239-262-8388.