Our Dementia Reality Captured on Film!

I had no idea what Friday April 8, 2016 was going to be like, though I did get a little inkling when Mason (the Alzheimer’s documentary’s producer) emailed me on Thursday to say his primary focus would be capturing all the little moments during my afternoon with Mom. I left work at 11 am and headed to the beauty salon so I could look my best for the filming. Thanks to Tim, he brought Mom to the salon when I was halfway done, so she wouldn’t have to wait long . Mom and I had a blast getting our hair styled by Wendi, who has been doing our hair for more than 25 years.

When we got to our house, Mom was very relaxed, thanks in part to snacks I had in my “Mom bag” that I carry whenever I hang out with Mom. In the bag are snacks, extra diapers and wipes, magazines, LEGO pieces and other toys that keep her entertained and her anxiety down. In prep for Mom’s extended visit, I had gotten out her high school yearbook and a photograph album she made in high school, including many photos she developed herself in science class.

The first thing we did during the hour we had until Mason arrived, was to get Mom cleaned up. For those folks new to the dementia journey, changing your parent is probably one of the most loving things you can do for them. We then flipped through her yearbook and I was stunned that she was able to identify her own yearbook photo as well as those of some of her friends. As Mason pulled up in front of our house, I was just pouring pieces on the table to a fish puzzle made specifically for dementia patients that Mom and I hadn’t done for months. I wasn’t even certain she could do the puzzle because the last time I got the pieces out, she just pushed them around the table, with absolutely no interest in them.

Mason came right into our kitchen with his camera rolling, like he was a member of our family. He then put a wireless microphone on me which I wore for the entire six hours of filming. Mom didn’t even blink when he entered with his huge camera and she never seemed to be aware of his presence. I was afraid Mason wouldn’t have much material to work with because on Easter Sunday Mom said only a few words. But even in the first few minutes of Mason being here, Mom was talking up a storm! She was focused on every piece of the puzzle, and each time she put a piece together she’d say “it’s fits!” and as it neared completion, she even said “that’s amazing!” I was sooooo excited and proud!! It took us almost an hour to get all the pieces together and she was not only focused on getting it together, but also studying it afterwards. Mason must have gotten every close up shot imaginable.

When we finished the puzzle it was time for Tim’s incredible dinner. He made Mom’s favorite baked chicken and steamed cabbage. Mason filmed me cutting up Mom’s food as she waited patiently, and her savoring every bite!! She ate almost everything on her plate, primarily because she knew we had cupcakes for dessert. There were many closeups of us, the dinner and probably the cupcakes too. Mason even stopped filming for a few minutes to enjoy some of Tim’s dinner.

After dinner, Mason captured us doing a few things with LEGO bricks, which for the first time Mom had absolutely no interest in. She put a few pieces together, but only after I demonstrated what to do. Mom told Mason the name of the D.C high school she attended, Cardozo, and showed him her yearbook photo and the photo the Spanish club she was in for three years. There were 14 girls in the club, and one boy, my father Lorenzo Woodward. When Mason asked who the boy in the club was, Mom said she didn’t know him, though they had been married for more than 10 years.

By then it was time to get Mom back to the group home. Mason filmed us putting on Mom’s coat and hat, walking out to our SUV, and us getting Mom in the vehicle (which on some days can be very difficult). Mom has just recently started to do that shuffling of her feet, walking in a very hesitant manner. He sat in the back of the SUV behind Mom, and was able to film the 15 minutes to Mamie’s Loving Care. He filmed me getting Mom out of the SUV and up the front steps to 522 Kisconko Turn. I introduced Mason to Angelina, the primary caregiver and we said goodbye to Mom.

Mason sat up front with me on the ride back and I gave him more history of Mom and our family. When we got back to our house, Mason set up this time in our living / dining room – setting up bright lights to go along with that huge camera. It was time for our final interview. During that 45 minutes, we recapped the almost four hours with Mom – the highs and lows, the joys and the sorrows. Mason asked me to explain how I manage to find such hope in every small joy. That was the easiest question he’d asked all day! I believe you have to treasure every single minute of the joys, because it can prevent the pain that comes along with this disease from overwhelming you.

Now that it’s almost 24 hours after the filming, I definitely felt like we were on our own reality show. But the reality of dementia is no show. It’s one of the harshest of life’s realities. So if a few hours of filming helps to raise more funds for a cure and financial help for caregivers, it was worth every moment. Thank you Mom for raising me not to be afraid to open myself up for all the world to see, and for giving me a voice to help others. I now look forward to the final product of the filming in November, which according to Mason is going to be a fairly big deal for National Alzheimer’s Month including a premier of the documentary. I’m blessed to have been invited to participate in this project and can’t wait to see the final results. Regardless of how it turns out, or whether anyone sees it or not, I’ll continue to battle against this disease because my Mom wouldn’t want it any other way. And let there be no mistake, I’d do anything for my Mom, the woman I love with my whole heart.

 

 

 

A Weekend to Remember!

The word “Remember” has been significant in my vocabulary since 2006 when Mom was diagnosed with dementia. So I use the word a lot! Some of the things we remember are great, some are devastating and some are just ordinary moments that you want to tuck away. I tucked away quite a few moments from this weekend.

A couple of weeks ago, I wrote about my worry about starting this camping season in the midst of the current racial tensions in this country. So this weekend, we headed to Fredericksburg, VA a city with amazing Civil War history. We had an amazing time, but in a very quiet way. Not only had I been worried about how welcomed and comfortable we’d feel on the road, I was also concerned about how strong and well Tim would feel back on the road for the first time since his heart attack as we set up, and then took down our campsite.

Truth was, Tim was quite sick with a cold for most of the weekend. He had been sneezing since last Wednesday and I was thinking maybe we should stay home. But we headed out on Friday morning with him being a little congested, but so very happy to be on the road again.

When we got to the campground, we set it up in what seemed like record time, especially since it was our first time out this year. We unhooked the camper from the SUV, then hooked it up to the campsite. I jumped in and helped more than I typically did and we worked together like clockwork. It’s one of the things that I’ll remember the most. When one part of the couple is not at their best, the other part raises their level of effort.

We took a walk in the evening around the campground, getting in our 10,000 steps on our FitBits!! It felt great achieving that milestone together! But the best part of the evening was sitting around our campfire along with a great cup of coffee! Priceless!

On Saturday, we headed to town and did a little sightseeing. I got my National Park Service Passport book stamped, and we took some photos at the Fredericksburg battlefield. Though we probably would have done much more, it was cold and damp and I didn’t want to make Tim’s cold even worse. One of the things I will remember most about our journey into town was our stop in an old church turned into a coffeeshop. We enjoyed tea with honey and sipped it like it was a hot toddy for our souls.

When we headed back to the campground, we stopped to talk to a pharmacist about what cold meds Tim could take that wouldn’t hurt the meds for his heart. Tim took the recommended meds and was pretty much out after that. I went out for a walk alone, thinking about the serenity of the campground and all the plans we have for this summer. I took paths we hadn’t taken on Friday evening and found some great quiet areas for reflection.

Later Saturday night, I was worried about how congested Tim was, and thinking maybe we should head to an Urgent Care, but terrible winds were in the forecast so we just hunkered down. As the scary winds howled outside, I will always remember a calm that came over me when I realized that now that we have committed to seeing this country over the next few years, I also have to accept the fact that the weather isn’t always going to be great. So I said a prayer asking that all would be well, and it was.

Sunday was also a day to remember as we packed up in the freezing cold and departed again in record time, and the traffic Gods were with us as 95 North wasn’t backed up, allowing us to get home in just over an hour.

One of the things that I will remember forever is that I’ve arrived at a new place in my life. Typically when Tim and I have traveled, even close to home, we always ventured out for hours on end to see all there is to see. Now I’m in a place where no matter how much or how little we see, I cherish every moment….. because when it gets right down to it, the company, the journey and the special little moments are what really counts! Those are what we should remember and what I hope to never forget!