I’ve not posted anything to this website for over a year. This is because I’ve been taking care of my girlfriend. She was diagnosed with a rare form of dementia (Posterior Cortical Atrophy, or PCA) in August of 2017. Looking back, I can recognize that she had symptoms of it starting two or three years earlier. I did not realize that they were symptoms of anything until we received the diagnosis. A reasonable shorthand description of PCA is, “Alzheimer’s dementia that affects vision as well as memory and cognition.” Her eyesight wasn’t affected; her brain just became incapable of interpreting the data from her eyes. I’m convinced that it also has effects on motor skills such as balance.
In December of 2017, she developed back and leg pain. Nothing that we tried helped, and things kept getting worse to the point she could barely walk. She had no relief until she had back surgery after suffering for a year. The surgeon found a bone spur from a vertebra, which had not shown up on X-rays or MRI scans, pressing on her sciatic nerve. The operation was, to Marion, a miracle cure. She was walking two to three miles a day by the time I took her back for her 30-day post-op evaluation. The surgeon was definitely impressed.
I’ve been living with her for almost two years, because she needed someone with her through the night during her recovery from surgery. In August of 2019, her dementia had progressed to the point that she required 24/7 attention. I have been providing that, which is one of the main reasons I mostly abandoned this site.
Marion and I were together for a long time; the coming New Years Eve would have marked the 25th anniversary of our becoming a couple. Our personalities meshed well together. Over 25 years, I can only remember one significant argument that we had. She was always more active than I was; she gave up hiking in the mountains because my knees wouldn’t handle it, but she got me started in cross-country skiing, which wasn’t so hard on them, and she got me into snorkeling. We rode bicycles and did a lot of walking. For a short woman (she was 5’2″, I’m 6’1″), she walked quickly. I had trouble keeping up with her, and below 11,000 feet, she could walk me into the dirt. My lungs were apparently more efficient than hers once the air was thin enough.
She loved to travel. She went places by herself until we were established as a couple, then we traveled together. We traveled in the US, Canada, England and Scotland, Ecuador and the Galapagos Islands, Europe, Egypt and Jordan, Australia, and New Zealand. We saw the pyramids, Karnak, Abu Simbel, Petra, Hagia Sophia and the Blue mosque, listened to a live performance of Mozart in Vienna, took a helicopter up to a glacier in New Zealand, and so many other wonderful things.
One thing Marion didn’t have to get me into, but she did keep trying to get me to do more of, was ballroom dancing. I’d had an introduction to ballroom dancing my first year at the Naval Academy (part of that whole “officer and a gentleman” thing). I actually met Marion when we were both in the same samba class. I asked her out for coffee, and things grew from there. We took classes together in just about any ballroom dance you can name – waltz, Viennese waltz, foxtrot, tango (both American and Argentine styles), rhumba, cha-cha, quickstep, samba, nightclub two-step, country two-step, paso doble, merengue, and East and West Coast Swing. Possibly some others that I don’t recall. West Coast Swing was one of Marion’s favorite dances, but it was one I resisted learning for several years. Marion hated to leave the dance floor, so I wanted one dance that I could use an excuse to get some rest. Eventually, though, I gave in.
The year that she had the back pain was unfortunate. By the time she’d had the surgery and recovered from it, her dementia had progressed to the point where she had trouble with her balance, and she’d forgotten many of the steps she had known. We ended up with waltz, foxtrot, nightclub two-step, and American tango as what we could do. Then came COVID and the lockdowns, and we couldn’t even do those anymore.
We still walked, though. Last summer, I’d hold her hand and we’d walk a 1.5 mile loop on the paths near our houses, up to three times daily. She couldn’t see much, so I’d describe the weather, any wildlife I saw, and any people nearby as we walked.
As time progressed, her steps became shorter, and the amount we’d walk lessened. Last Friday, we took two walks for 1.5 miles total. By that time, I was no longer holding her hand and walking beside her; I had been walking backwards, holding both of her hands, and pulling to keep her moving for a couple of months.
When we weren’t walking, Marion was listening to classical music or audiobooks. Sometimes, I’d play my ukulele and sing for her. She sang along on the songs she knew, until she couldn’t anymore because she had forgotten the lyrics, or just couldn’t get them out.
Last Friday, around 6 pm, Marion got part of her dinner caught in her throat. I was unable to dislodge it with the Heimlich maneuver, nor could the EMTs when they arrived. We have a fire station just a couple of blocks away, so they were there almost immediately. Her heart stopped in the ambulance on the way to the hospital, but they were able to stabilize her in the ER. According to their protocol, Marion would be kept sedated for about 36 hours, possibly more, before they would wake her and evaluate her. Unfortunately, her blood pressure dropped a few hours after she was admitted. I was called to her side sometime between midnight and 1 am Saturday. They told me her blood pressure was 50 over something, and they didn’t expect her to last. When I arrived 20 minutes or so later, her blood pressure was no longer registering at all. I sat with her, holding her hand, reminiscing about our life together, and attempting to sing her favorite folk songs to her. Around 2:30 am, her pulse rate started dropping. It had been steady at 97 since I arrived. It slowly decreased to about 60, then her heart stopped again around 2:45.
She did not respond to CPR that time.
Her funeral service was this afternoon. I’m going to miss her so very much.
