Dementia has no rhyme or reason; there are no rules. There are good days and bad days, and as the disease progresses, the bad days begin to outweigh the good until eventually you expect them as the norm.
I have been on this journey with mom for 16 years, and we have had many, many good days along the way. I keep them tucked away in my treasure chest and pull them out to hold me up during the most difficult days.
This past March mom had pneumonia. We caught it early and she quickly healed, but, as usual, this set mom back and caused her to progress further into the later stages of the disease.
Mom has lost the ability to control non-stop chattering of a one-syllable word. It goes on for hours and hours. She's exhausted and cannot stop. It has interfered with her ability to eat, drink, and communicate with the few words she could say, like “water.” It's exhausting to watch, and I cannot imagine how difficult this must be for mom.
We tried medication changes, but nothing has seemed to work and the meds actually made things even harder.
Music has been a saving grace for us. Mom may not be able to put a sentence together, but she can sing her favorite tunes from the 50s, 60s and 70s without skipping a beat. I have two MP3 players at the facility ready in case one of them runs out of battery. Music has done more to improve her mood and anxiety than any medication has. Music is how we have been communicating for quite a long time now.
Unfortunately, with this recent setback, music is no longer working to keep mom comfortable. Working with the facility, we have tried just about everything. Mom had lost a lot of weight, so they added additional staff and times to feed her puréed meals and get her hydrated.
Visits have been extremely difficult, lately. It's so heartbreaking to see someone you love so much struggle and feel helpless. All I can do is hold her hands and love her.
The other day as I entered the facility, mom was resting peacefully in the main dining room as they were preparing for live entertainment.
I gently approached her and said, "Hi mom, it's Michele, your daughter.” She responded, "I know, I love you.” Then I asked her if she wanted her favorite fig newtons, and she ate several. It's been months since she was able to stop chattering long enough to take even a bite of her cookie. She also drank 16 ounces of water and enjoyed a cup of coffee.
Soon, the live music started playing and mom was singing along. She was happy, I was happy.
I'm not going to ask how or why, but this particular day was a gift. I will never forget it, and will keep it in my treasure chest for a rainy day. Thank you, Mom. <3