It has been months since I wrote about my 91-year-old mother Ginny who resides in Memory Care (the highest level of nursing and trained staff to help with behaviors associated with dementia and memory loss.)
I had really liked that November post because we had shared a nice Thanksgiving meal and live music that evening listening to favorites from Sinatra’s “That’s Life” to Bill Haley’s “Rock Around the Clock.” Although the story was brief, it was uplifting. Maybe I had hoped for time to stop right there.
But my original focus with this blog has always been to share mom’s challenges honestly in order to shine a light on aging parent issues, so I feel compelled to return to it.
First, we returned to see Ginny in mid-December and brought along a special Christmas present: her grandson Will and his wife Allison. They had not seen “Gram” since their 2017 wedding in Boston (mom’s last travel event) and it was a joyous reunion. We are fortunate that Ginny still recognizes us (although there was a brief, awkward moment where she thought Will was her dentist. She quickly got back on track.)
There was a lot of laughter and the prerequisite visit to the ice cream parlor inside the building. I was touched, however, when we went to her room and while I was busy taking stock of laundry and supplies, she sat on the bed with Will, excitedly talking him through a “100 Most Beautiful Places in the World” National Geographic magazine we had previously brought with us. They went through every page; every photograph. I felt gratitude for this special family moment.
I would like to share a general tip here when visiting a loved one in Memory Care (especially if you live further away and can’t visit every week).
I always bring a go-bag of particular items with me. I store it in my closet and pull it out for the drive over. It includes:
Scissors: Memory Care patients are not allowed to have these for their safety and the safety of others. Scissors are inevitably needed for everything from cutting a thread from a piece of clothing to opening the packaging of a gift or new supplies. I once mistakenly bought her a pair of children’s scissors. She was not allowed to keep them.
Light bulbs: Mom has a bedside lamp which we realized during a past trip had a burnt-out bulb. (I think the lamp often stays on during the overnight hours.) Its possible staff could help with a replacement, but I don’t need to bother them.
Seat-size absorbent pads: (for the rare occasion if we need to drive Ginny to a doctor appointment or somewhere unexpected.)
Extra pair of reading glasses: When Ginny first arrived at her new home, her prescription glasses were permently lost within 2-3 weeks. Instead of buying expensive replacements, we have been bringing in drugstore “readers” (about $10.00) with her name on them. I keep a couple stocked in the bag. Sadly, Memory Care residents are known to visit other rooms and take belongings. They simply don’t understand. One of mom’s pairs was recovered in another resident’s room and they then lasted almost two months before I replaced them. That was a win.
Labels/black pen: I never know when I’m going to go out to Target and buy an item I didn’t know she needed. It’s a godsend to have sticky labels ready to go.
It wasn’t until January, when suddenly, there was a series of hurdles to face. The first was a fall. In truth, mom has fallen many times over the last 18 months and miraculously, always recovers quickly. During the most recent fall, she was taken to the hospital because they were not sure whether she had hit her head. The scan showed no medical issues and she was released. But soon after, a report appeared on the “bridge”, an online portal where families can log in to see communication between doctors and the facility, that Ginny was diagnosed with “Fraility Syndrome in Geriatric Patient” which basically means she has enough markers such as weakness, slowness, self-reported exhaustion and unintentional weight loss that puts her at an elevated risk for “catastrophic” decline.
Within a week after the fall, a situation then arose with her roommate (they have separate bedrooms and share a bathroom.) I’m refraining from sharing every detail, but we learned through the bridge that my mother had entered her roommate’s room and apparently acted in a threatening way towards her. An aide arrived and removed Ginny from the situation. The roommate was fine, however, the decision was made by management to move her to another room.
Surprisingly, my sister nor I were directly informed of this incident so it’s hard to know exactly what happened vs. the aide’s interpretation of it. The fact that they didn’t reach out suggests some levels of aggressive behavior in Memory Care residents are not uncommon. (I have since researched that too.) The doctor’s response on the bridge referenced that mom had recently taken a fall and suggested it was possible this was the reason for her behavior change.
We visited Ginny right after that. She seemed frailer, definitely tired, but was still up for a visit so we sat outside where she was transfixed by the number of red cars in the parking lot. Multiple times she thought one of the cars looked just like “daddy’s (her father) car.” I would try and change the subject, but soon, she would focus on the cars again. The mind is a mystery with Alzheimer’s/advanced dementia.
During that visit, I was pulled aside by a medical technician to explain that mom has been refusing her evening medications. They also said that her “sundowning” is bad and at times refuses every level of care. Sundowning is the term for a state of confusion occurring in the late afternoon and spanning into the night. Sundowning can cause a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions. Not long after that conversation, she was placed on a “crush order” where they now crush her pills and put them in pudding. Lastly, there’s been another trip to the hospital in late February for an infection and another release. These back-to-back events only increase our anxiety.
I’m optimistically trying to imagine mom still finding her way outside with her walker, with her “dog” Button in its basket, to sit in her home’s gated garden. She finds such pleasure there. I’m also imagining what thoughts are breaking through her tired mind. Are they about her parents? Her daughters? Her early life? Or, is everything fading into a timeless gray now? She’s exhibiting more and more uncharacteristic behaviors.
This is where we are. In the immediate, we do not know what lies ahead, we can only put on our brave faces and take it as it comes. So, while I do wonder what my mother thinks about now, I’m personally trying hard to concentrate on the music we listened to when she was tapping her foot, our conversations in the garden and the happy laughter I heard only three months ago.