We all want to feel loved and connected. Being a caregiver for a loved one with dementia can be extremely isolating. Connection was one of the most important parts of my caregiving journey with my Mom—not only in being able to connect with my Mom to maintain our relationship, but also being able to connect with other caregivers to find and share resources.
Connecting with our loved one begins with treating them like the adult they are. People living with the dementia deserve dignity and respect. We often take so much away from people living with dementia, so I always thought about how I could allow my Mom to participate and make decisions in her care as much as possible. As my Mom’s care partner, I always thought about what she COULD still do and not what she could not do. This looked like offering her choices, asking her to help with different tasks and building on what I knew about her as a person.
Creating Ways to Connect
Courtesy, Patti LaFleur
I connected with my Mom and supported her independence by providing her the opportunity to make choices throughout her disease progression. I allowed my Mom to make decisions in her care as much as possible. This included her choosing her clothes, activities, and meals. In the early stages, she made decisions from a wide variety of options, but as her disease progressed I limited the number of choices I offered her. She would often pick from two shirts or two art projects, but I still always allowed her to have a voice. During the late stages, I would offer her one choice and she could nod yes/no to indicate which option she preferred.
Involving my Mom in any tasks that I could and not worrying about if she did it “right” was another way I connected with my Mom and allowed her to contribute to the household. My Mom was the ultimate homemaker and she always prided herself in her ability to take care of her family and her home. So I often asked my Mom to help me with chores around the house. She would help me fold towels, which, as her dementia progressed, looked like just moving the towel around or folding the corner of the towel in. Even though she was not successfully completing the task, I always thanked her for helping, and she felt agency in her ability to help with tasks. We also baked together often. I would pre-measure and set up all of the ingredients for my Mom, she would just dump and mix. She loved being able to help with the baking (and the eating).
Courtesy, Patti LaFleur
By building on what I knew about my Mom’s likes/dislikes, I was able to help her stay connected to the activities that we did together. I used our relationship to create experiences and activities that she enjoyed. My Mom had always been a quilter, but because she was no longer able to quilt, I created art activities and crafts that allowed her to still be creative and successful in her art. We often created abstract art together because I could easily adapt it to where she was in her progression and we could focus on the process not the product. By focusing on the process, we were able to have fun and find joy together during the experience, rather than trying to create something that looked a certain way.
These activities and opportunities helped to maintain the relationship and connection that I had with my Mom. My Mom was unable to identify me as Patti or her daughter in the last two years of her dementia progression, but that did not stop her from knowing that she loved me, and that I loved her. The way that she looked at me and lit up when I walked in the room was enough proof that she able to recognize that I was someone she loved and trusted. This love and trust was built through connecting with each other in her care.
Connecting with Community
During my time caring for my Mom and since she has passed, I have shared our story on social media social media to connect with others, change the stigma around dementia, advocate for change, and support caregivers. Social media has become a way to honor her story by showing a different (more positive) side to dementia care. We created together, we laughed/danced and even travelled to Disneyland!
In sharing our story, I learned how important it was to connect with other caregivers. It was helpful to have other people who got what I was going through and could offer support/suggestions as I cared for my Mom. I found support groups that were targeted to my specific needs through the Alzheimer’s Association and various online groups. The 24/7 helpline that the Alzheimer’s Association offers can help caregivers find the resources they need. Another helpful resource for connecting with others was my local department of aging and the community resources they were able to share with me.
Dementia caregiving has so many challenges, but the connection that you can foster with your loved one and the connection you can find in a supportive community is beautiful. •
- If you liked this article, read Patti LaFleur's new peice with some how-to's for the AlzWA blog: Finding Joy and Making Connections in Dementia Care
