May 15, 2019
Lunch with Jane:
It’s definitely warming up here in Phoenix & summer is headed our way. But today, we had a cloud cover & lots of shade from the trees, so Jane & I were able to visit outside. She & I both prefer sitting under the trees over sitting in the clubhouse. The clubhouse is loud & busy, but the courtyard under the trees tends to be quiet & we usually have it almost entirely to ourselves.
Today we had lots of birds visiting. Black birds, small birds (maybe cactus wren – I’m not sure), doves today, love birds! Last spring, Jane & I began seeing 2 love birds hanging in the area. We assumed they must have gotten out of someone’s home because they definitely aren’t native to the area. After a few weeks, they disappeared & we wondered about them. Had something happened to them? But this spring, they came back & had babies with them. They aren’t always around – it’s not that common for us to see them. But today we saw 5 in the trees above us. I really wished I’d had my Nikon because my iPhone camera wasn’t really doing the birds justice. I’m sharing the best pic I was able to capture.
Jane was alert today when I arrived & smiled at me & she gave me her best smile to send a pic to my dad. But she quickly regressed back into her mind after our short chat with my dad. She did her best to listen while I chatted & stay engaged, but the disease was making it hard. It wasn’t long before Jane fell asleep on me. It’s ok – she seemed peaceful & was enjoying the fresh air & singing birds.
It’s becoming harder & harder for Jane to beat this disease. Most days she is barely there. There are glimpses of her, but mostly its just her shell. If you haven’t experienced this disease first hand, it’s hard for me to describe. I know my stepmom is still there – but she’s not able to engage with me. She hasn’t been able to speak for a few years. She used to engage with a shimmer of light in her eyes – that is rarely there anymore. She used to hug me tight – I can’t remember the last time she hugged me. She used to hold my hand & squeeze it. Today she only reached for my hand when I first arrived. It’s crazy to me how this disease just keeps taking things away. What was a bad day a year ago would be considered a good day today.
I hate watching this disease eat away at my stepmom. I hate that it wins. I hate that we have no choice of winning this battle. All that we can hope is to win the war on dementia & alzheimer’s disease for all. It’s too late for my stepmom, but I hope we find a cure so it’s not too late for its next victim.
If your parents are beginning to become forgetful, repeat things often or seem combative for no reason, pay attention. Don’t just chalk it up to their age or stress in their life. Look for answers. Push the doctors to think outside of the box. Dementia is hard to cure because so often we don’t receive diagnosis until the disease has progressed tremendously. We need to find early warning signs & look for treatment. We need to understand what causes this disease so we can find a cure. Jane lived with this disease for at least 2 years, likely longer, before we had a diagnosis. What could we have learned in the early stages to help?
