“We’re only tourists in this life / Only tourists but the view is nice”
– Everybody’s Coming to My House, David Byrne
It’s appropriate that I heard David Byrne’s new song, quoted above, just as I was contemplating writing this entry. In my previous entry, I talked about how important his music was in raising my own daughter. His new song resonated with me due to my mom’s failing health due to Alzheimer’s. This is also why posting a new blog entry has been delayed so long.
I’ve spent the last few weeks getting her settled into an assisted living facility. She’s 82 years old, has suffered from Alzheimer’s for at least the last ten years, and is now in the end stage of the disease. It has been a slow-moving steamroller that is now accelerating down a steep hill. Ron, her husband of 20 years, has been a loving caregiver and partner, but the time comes when it’s simply not in anyone’s best interest to try and keep someone in her condition at home.
A word of warning to anyone who might have to deal with this: in addition to the obvious emotional toll, there are tons of meetings and paperwork involved! It was a bit frustrating that at the time when I felt she needed me at her side the most, I couldn’t be there because I had to meet with doctors, nurses, social workers, nursing home coordinators, bankers, and hospice workers. I can’t even begin to guess how many papers I’ve signed during the last few weeks.
There’s a larger to story to be told about all of this, but I want to focus on just one aspect. Alzheimer’s destroys the brain, eroding memory. My mom doesn’t recognize me or her husband without being reminded, and even then it slips away quickly. She doesn’t remember what has happened just a minute ago, and doesn’t worry about what will happen next. She truly lives in the moment.
However, in those moments she is almost always happy and content. This is the personality I have seen demonstrated over the years. She loves everyone she meets and always has a word of encouragement. In my last visit, an aide had just helped her in the bathroom and was getting her settled in her recliner. “It’s so nice to be here with you!” she told the aide. By this time, she didn’t know where she had just come from, or really who the aide was. “You make this place such a nice place to be!”
Another time, a hospice worker had just left her room and said, “Your mom is so sweet! As I was leaving she yelled out ‘Keep your happy!'” Certainly the turn of phrase was odd due to the disease, but the sentiment was obvious. She wrote it down in her visitation notes.
There’s no way to know how much longer mom will live, but by any measure, it’s not long. It’s sad to see her succumb to this disease. But it also makes me want be better about living in the moment myself. I can do better at enjoying the here and now without unduly worrying about the future or holding on to the past. There’s a cheesy saying, appropriate for a bumper sticker or embroidered pillow: “Yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why it’s called the present.” Its cheesiness doesn’t make it any less true.
You never know how Alzheimer’s will affect someone’s personality. Some people become mean and even violent. In my mom’s case it has so far stripped away everything aside from her true essence of kindness and acceptance and love. Hopefully the positive traits will continue until she succumbs; I have no reason to expect otherwise.
The death, past or impending, of a parent can’t help but make us think about our own mortality and legacy. Hopefully we can all do a little better than our parents did. Since my daughter has long ago flown the coop and gotten married, I’m done raising her. But in the same way my mom still influences me today, without even knowing it, I’m aware that I still influence my daughter. When she was living with me, my influence was deliberate. Now, unless it’s in response to her asking for advice, any influence I have is accidental.
I just hope most of my influence is in the form of characteristics she wants to emulate, not ones she wants to avoid.