It’s been a very long time since I’ve visited my blog, but it feels like a good place to be right now. While fun adventures with Chad continue and travel abounds, the biggest adventure around here these days is trying to outsmart my mother’s Alzheimer’s disease. And, boy, is it tricky business. In some ways, it feels like we’ve only been dealing with this for a few years, but then I see pictures and recall things that make me realize it’s been going on for at least ten years. Ten years. The progression has been very slow, but it does seem to be ramping up faster these days and taking us all on a wild ride.
I read Facebook pages and other blogs and know that this disease and other forms of dementia are presenting lots of families and friends of those who suffer from it with many unexpected challenges. As we try to get our bearings riding this horrible rollercoaster with my mom, I hope that some of our experiences might help you know that, first of all, you’re not alone and, second of all, this is all a big experiment to see what works and what doesn’t.
Moving my mother to memory care was one of the toughest decisions we’ve ever made as a family. Actually moving my mother to memory care has been even harder. In spite of her disease and its progression, she’s still savvy and continues to surprise all of us on a regular basis. Sadly, she’s slow to assimilate to the new place and, though we see pictures and videos of her enjoying activities and smiling, she resets frequently every day and gets very upset and agitated when she’s told she can’t go home.
Her agitation and anxiety is really putting the staff of the facility to the test, but thankfully they’ve been up to the task. In spite of their expertise, she’s surprising them in many ways, too. We are so grateful that there are angels walking this earth who choose to work with those suffering from these brain-altering diseases. Their love and patience for the residents is truly heaven-sent.
In spite of her agitation and frequent resetting, she does give the staff reasons to smile and wonder at the strangeness of this illness. Recently I was on a flight and had my phone on airplane mode. When I landed and switched my phone back on, I had a voicemail from my mom. It completely rattled my cage, because it’s been months since she’s called me. In her voicemail, she said that she was “at the clubhouse” and needed me to pick her up. I immediately reached out to the memory care facility and they were as shocked as I was that she called me. They knew she snuck into an administrator’s office, but they never dreamed that she made actually made a call or that she could possibly remember my phone number. They were dumbfounded. I assured them that, throughout all of the progressions of her Alzheimer’s, remembering my phone number has been a constant.
Yesterday she snuck into an office again and called me, but this time I answered not expecting her to be on the other end of the line. Once again she told me she was at the clubhouse and needed me to pick her up, because the people she was with wouldn't let her walk home. I agreed that walking home was a bad idea and told her that I couldn't come get her right away because I was working. She got very upset when I told her I wasn't available and hung up on me. It's my understanding she melted down after hanging up the phone and the staff was working diligently to help her get calmed down.
Shortly before my mom called me, I spoke with the nurse and she let me know that she was concerned that my mom might have a urinary tract infection and she was sending out a sample for testing. We also discussed my mom’s high levels of anxiety and agitation the past few weeks. The nurse’s concern was that an infection could be causing even more agitation than normal, so we actually hoped for an infection to explain it and that treatment would help calm her down.
Even though we were still waiting for the test results, I couldn’t sleep and spent the night turning over ideas in my mind about ways that we might be able to alleviate some of her stress. I laid in bed for hours brainstorming ideas of what might distract her or calm her down. As the sun rose, I had an epiphany. I concluded that HGTV has long been my mom’s pacifier. Much like parking a child in front of the TV, my mother enjoys house renovation shows and frequently spent hours sitting in front of the television watching them before she moved to memory care. Initially we decided to not put a TV in her room, because there were televisions in the common areas and Mom is introverted at times and we wanted to force her hand a bit to socialize and interact with the other residents. In the wee small hours of the morning, I determined that it might have been a mistake. She’s experiencing a lot of change and we can’t force her to be someone she’s not.
Exhausted though enthusiastic about my plan, I swung into action today. By 10:30 a.m., I had purchased a TV and arranged for cable to be installed in her room. When I called the cable company to arrange for the installation, I literally started crying when the customer service rep told me that a technician was available TODAY. The rep seemed shocked and surprised that I was thanking her profusely and crying…I think it kind of made her day to make this happen for my mom, but she may have also been concerned that I was a tad too emotional about HGTV. When I shared the news with some friends, we quickly agreed that the cable company is rarely the hero of the story. That customer rep deserved her moment in the sun.
As I quickly made arrangements to pick up the TV and Chad offered to deliver it to the facility, we received confirmation that Mom does have a UTI. Now the day is winding down and Mom is starting antibiotics and has her very own TV in her room with HGTV any time she wants. Never in my life did I think I would be relying on the “Property Brothers” to save the day, but I need all of their help and more. Praying for quick-acting medications and the soothing balm of home improvement shows to rapidly ease my mom’s anxiety.
Now I’m off to get some sleep and we’ll see how tomorrow looks. Here’s hoping we’ve gone from Fixer to Fabulous.
