Confessions of a Master Caregiver
When I chose to call myself a “Master Caregiver” on my blog, which is about my confessions related to my journey as a caregiver to my mom who had Alzheimer’s, I was the farthest from being a master of any type of caregiving, no less Alzheimer’s caregiving.
But in choosing to put words into the universe I went with the word “master,” since it is a full-on power title, and also because it’s a play on words inspired by actress Sandra Bullock’s sister Gessine’s blog “Confections of a Master Baker.”
Encouraged by family and friends to write about this new role in my life, I was at first a bit hesitant to write about what was going on with mom and what was bringing me so much pain. But then I started looking at the bigger picture: perhaps what I’m going through could help someone else, and maybe there was someone who needed information or was experiencing the same things I was and felt very alone. So I choose to start blogging about my experiences, regardless of how raw they were. These experiences were my truth, and combined with information and resources, perhaps this blog could touch lives.
My mother had Alzheimer’s and that was hard to comprehend. Was I experienced at caregiving? No. Is healthcare my profession? No. But Alzheimer’s snuck up on both of us. And there I was, the unexpected caregiver, not knowing where to turn or what to do, and doing it all alone.
My mother probably started showing signs around the end of 2005 or early 2006, which began with her forgetting dates. A little light bulb went off inside of me and I’d mention that maybe she should get checked out, but she’d brush this off as her just forgetting. Hindsight is 20/20, as they say, and maybe I should have been more persistent in getting her checked out. But I was hoping that she wasn’t heading for a life with Alzheimer’s.
My maternal grandmother had Alzheimer’s, and I remember how hard, embarrassing and challenging the days became. I was a teenager at the time, and though my grandmother lived with us my Mom handled the brunt of my grandmother’s changes and challenges (with my Dad’s help), so I didn’t get the full experience of caregiving until I cared for my mom.
Like so many from her generation (and, sadly, so many African Americans) my Mom didn’t want to discuss what was going on with her health until I had to take over. Many people feel that if you don’t talk about something it’s going to go away, but it doesn’t. It just makes it harder for loved ones to comprehend when things get worse.
For awhile, my Mom was able to continue functioning as “normally” as she could. No one could tell that she was having slight memory lapses, as she could still carry on conversations, take care of herself (sans cooking), eat by herself and walk the dog. But after moving to be near family we saw the Alzheimer’s rear its ugly head.
I knew change agitated those with Alzheimer’s, but I wasn’t prepared for how much and how quickly my mother would decline. I was always trying to catch up, being reactive when I needed to be proactive. Everyday was a new challenge, a new normal for me to learn. It’s the type of illness you can never put your finger on except that change will come and come fast. Whenever I thought, “Aha! I’ve got this!” Alzheimer’s showed me differently.
As time went on, I did get better at handling my circumstances. I had to keep reminding myself that the outward expressions from my Mom were to due this illness, and that she’s a separate person from the action or outburst. I wanted terribly for my mother to be the woman she once was, the one who could give me answers and advice. Realizing that she was no longer able to was hard to adjust to, as were the times when she would lash out by telling me to “Go to hell.” My mom never spoke to me that way and it stung. I knew it wasn’t intentional, and though it was hard to shake off, I had to move past it.
You walk a fine line of remembering that there is still a person to love and respect, in my case my mother, yet knowing everything she needs is like a child needing their parent for care. If you’re not used to the challenges of living with and caring for someone with Alzheimer’s you have to learn to pick and choose your battles.
Even with the challenges Alzheimer’s presented, and there were fun times too, I’m thankful for every part of the journey and for what I’ve learned, such as how to shop quickly and swiftly, how to communicate on a different level, and how to be the ultimate multi-tasker.
I lost my mom in April 2012. Her heart gave out. And I know in many ways Alzheimer’s contributed to it. Caring for my mom was challenging. Many nights I went to bed crying, but I’d gladly do it over again. I accepted my role as caregiver, and after she passed I felt like I didn’t have a purpose.
Nothing will ever take away the sting of losing my mom, but this new normal presents the opportunity to lend an even stronger and louder voice to raising awareness on behalf of caregivers and Alzheimer’s, especially women of color.
African Americans are twice as likely to develop Alzheimer’s and we need to find out why. We need more African Americans to tell their stories. We have to find a way to create a comfortable space to share our Alzheimer’s and caregiver stories so we are not suffering in silence. There is strength in numbers and in knowing.
I admit there were days when I wondered why God allowed this to happen to my mother and me. But having gone through that experience, great things and people have come and continue to come into my life.
I may have been in the fire of Alzheimer’s, but I am a Phoenix rising!
Pamela Rivers is a freelance writer, blogger, speaker, lifestyle expert and adventure seeker. You can follow her at confessionsofamastercaregiver.com or on twitter @pamelarivers.