It was the Sunday after Thanksgiving. I picked up mom and we went back to my house to hang out with the kids. We were playing in the back yard and she was smiling watching my three-year-old little guy run around in the mud with no shoes. It was one of those good moments, a happy moment. My heart smiled and I stored it in my memory snapshot diary under, "good days with mom." We came back inside to clean up and start to take out the Christmas decorations. Something had changed with mom. She started pacing, breathing heavy and started to cry. I guided her to a chair in our living room and asked her what was wrong.
"Janelle's dead," she replied.
"Mom, what did you say?" I asked.
"Janelle's dead. She died."
Those words shot to my heart like a bullet. It was the first time my mom had ever referenced me in the third person. It felt like an out of body moment, the kids were playing in the background, my mom was starring at me with tears in her eyes and I felt paralyzed. I fought back the tears in my own eyes, took a deep breath and found my composure.
"Mom, I'm right here. It's okay. I'm here with you. No one died," I replied.
Dementia has taken a lot from my mom. She was once a woman full of smiles, laughter and faith. Now, she is often a woman who is suffering, scared and searching for words, her words. Her words fail her at times and oftentimes hurt those who love her the most. We know in our minds that it's not mom talking but our hearts long and grieve for "our mom" who always spoke words filled with kindness and love. It's been about seven months since my mom's fall and "the break" that forced us all to face the reality that we (my brother, me and our families) cannot save mom from dementia. We've tried, oh how we have tried! But as much as we want to help with every fiber of our being, we have realized that dementia/alzheimer's requires more than we are able to give. More than we know how to give. We have learned to reach out to the experts and professionals for guidance. We have learned to talk with her doctors and research the right medicines. We have learned so much about this devastating disease. Since her fall, we have gone from hospital stays, to temporary stays, to a group home and most recently to a memory care facility. Yes, there have been a lot of moves over the past seven months and through every one of them I am reminded of how grateful I am to one very special group of people: the caregivers. Those angels on earth who work as nurses, as managers, as directors to help families live with this disease. And, I am also grateful to the caregivers who are doing the best they can to provide dignity and quality of life for their loved ones. Trust me, I know how long your days and nights can feel when caring for a loved one with dementia. And, since it is Christmas, "and at Christmas, you tell the truth" (quoted from Love Actually). I want to share this message with you:
You are brave.
Yes, I know that you have been scared facing the complete unknown of this devastating disease. I am certain that there have been plenty of times where you have felt like giving up, that you can't take one more day of heartbreak, one more day of tears only to wipe them away and pretend to be strong so you can do it all over again. But, you do just that. You keep going. You get up, you show up and you do what you can. That my dear friend is true bravery.
You are kind.
You may not always feel like you show kindness through your actions. Living and caring for someone with dementia/alzheimer's can rock you to your core. It can mess with your mind just as much as your loved one who is diagnosed with the disease. But, through all of the tough times, you reach out and lend a helping hand. That is true human kindness in action.
You are love.
You may be facing the holidays this year wondering how will you get through the day, let alone the holiday season. Just know that you will because you are amazing. You are love in its most beautiful form. You show love in your daily actions, big or small. You take care of your family, your loved one with dementia and you do it with all of your heart. Yes, I know, not every day do you feel like you are showing love, but trust me from someone who walks in your shoes and shares in this journey, your love shows in all that you do.
And above all else, please know that...
You are not alone.
Since my very first blog about my mother's dementia, I have received countless messages, emails and comments from friends and complete strangers who are going through this journey. Leaning on each other has made the darkest days of this disease a little brighter and I want to encourage you to do the same. Reach out to your local alzheimer's organization, reach out to your friends, just reach out and ask for help. Do not let yourself get buried with this disease alone. There are organizations, people just like you, who can help make some sense of the nonsense. No, there is not one perfect solution to help you care for your loved one with dementia, but there are people who can hold your hand, offer a much-needed hug or shoulder to cry on and walk with you as you travel down this road of the unknown. Take moments to smile and store away the snapshots of the "good days" and keep those close to your heart. Yes, there are still "bad days" ahead, but you can get through them. You will get through them, one tear or one smile at a time.
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