By Lili Cantu
For Week 2 in our Caregiver Month Blog Series, we are pleased by present the following post by Lili Cantu.
My father was diagnosed with dementia at the end of 2013, though as is often the case, we knew something was wrong for much longer. Now that we have had time to sit with the diagnosis, AGE has given me an opportunity to share what I have learned from my experience as a caregiver over the past year. I actually consider myself the caregiver of the caregiver, as I am walking with both my parents in this journey. If you are reading this, I hope you can glean some insight from Five Things I’ve Learned:
- There is help available if you look for it. I cannot express enough thanks to the wonderful people at AGE. Getting a diagnosis was very difficult and frustrating, and we went through several medical professionals before we found the right kind of help for Dad. The process took several years and left us feeling pretty shell-shocked, so it has been wonderful to feel heard each and every time we have talked with someone from AGE. Now we have attended CareGiverU, and have signed Dad up to start activities and give my mom some respite. These have been huge steps in our journey.
- Dementia is not just a disease of memory. It affects all brain functioning. At Savvy Caregiver, I had so many “ah-ha moments” where new light was shed on a behavior that my Dad was demonstrating. So many things make more sense now: he whispers to himself in an attempt to keep his language skills; he wears his raggedy old fleece because it gives him a sense of security; he falls asleep often because he is exhausted from his efforts to “act normal”; he can’t use a key card at a hotel because his spatial reasoning is diminishing. It is nice to have explanations for all his behaviors, and to know it’s not him—it’s the dementia.
- Expect the unexpected when it comes to how loved ones will react to the news of his diagnosis. The people you think will be the most helpful and supportive aren’t always the ones to step up. We are also discovering that there are cultural differences in the reactions of our loved ones. Dad is from Mexico, where patients and family members are often kept in the dark about their health conditions in an effort to “protect” them. Since Dad is reverting more and more to his native Spanish, and feels more comfortable dealing with people he has known a long time, some of our friends and family (who only see him a few times a year at most) haven’t even been able to see that something is wrong. This has unexpectedly become one of the more difficult parts of this journey. We get a lot of unsolicited and judgmental advice. We are learning how much and how little information we should share in order to protect ourselves emotionally. It’s a fine balance! At the same time, we are learning that sometimes unexpected friendships form or deepen as people step up with appropriate responses and offers to help.
- Meet him at his level. As a mother and a Montessori teacher, I have found that a lot of the skills I learned in my teacher training and applied in my parenting translate very well to helping my Dad. Montessori teaches profound respect for the child, and reminds us to be respectful of every human being—no matter what capabilities they have. Dad still wants to participate in family life and feel useful, and breaking tasks into steps and giving him clear and simple instructions allows him to do so. We are also reaching the stage where reminding Dad what he has forgotten is no longer helpful, so we are learning to live in the moment with him. When we are able to meet his ability level and be in the present moment with him, we are all happier.
- There is still a lot to be grateful for. This Thanksgiving will be one of the best ones ever. I know this because I know that Dad is still with us. He still knows who we are, and remembers his life even if he can’t remember his birthdate or how to figure the tip at a restaurant. I am so grateful that I live in the same neighborhood, that I can help my parents, and that my daughter has had many wonderful years with both my parents (I never lived in the same town as my grandparents). More than that, I am finding that Dad is more emotionally available to me than he ever was in my childhood. This has given us an opportunity to heal some wounds and forgive each other for our mutual hard-headedness. He has literally cried and apologized to me for things he said to me growing up. How many men are willing to apologize for anything?!?! It has been such a gift. My hope for you, dear reader, is that you have some things in your life that you can feel grateful for, no matter what stage of the disease your loved one is in. I know that as Dad progresses, this will be harder for me to do, but I will have this blog post to remind me to look for them. Thanks for letting me share my thoughts. Happy Thanksgiving!
To learn more about AGE’s resources for caregivers, please visit ageofcentraltx.org or call (512) 600-9286