Another step towards the grave

Where do I begin, to tell the story of how great a love can be...

Today I learnt that my mother has slid down another rung (or few) on the Alzheimer’s ladder.

This photo was taken of us just more than 20 years ago. This is the woman I remember. She was fiercely independent, because she had to be. She was so very competent at everything she attempted. When faced with a seemingly insurmountable obstacle, she found a way around it, or through it, or to move it. She loved her gardening, and her pets. She had her vices (wine and cigarettes), but her virtues far outshone those. She was always in my corner, but she took no prisoners when I was in the wrong. She made sacrifice after sacrifice to provide for me. 

I remember one year, when I was going on a school camp in winter, she didn’t have money to buy me a jacket or a suitable jersey, so she knitted me one, even though she HATED knitting. That jersey was one of my favorites until it was  eventually too small for me. When my parents separated, she twisted her boss’ arm to let her work from home so I never had to come home to an empty house. She made my school lunches till I matriculated, always ham sandwiches, because her love language was deeds/ actions.

My step-sister sent this photo to me this past week. She was going through an old album and saw it. I posted it on Facebook, saying that this is how I want to remember my mother, not as who she has become as a result of her disease. My step-father showed it to her over the weekend... and although she remembered that I was her daughter, but couldn’t remember my name.

My head tells me that this was just the next step in her deterioration; not to take it personally. My heart hasn’t processed this yet - that my own mother can’t remember my name. It’ll happen, in time, I know. I hate this disease, that is taking her from me, one horrible step at a time.

Do not go gentle into that good night

My mother has Alzheimer’s. So did my gran, and my great-gran. I was a teenager through my gran’s Alzheimer’s, and she died while I was in my 20s. Watching my gran deteriorate and having to look after her was horrid...

I had patience to answer the same question 5 or 10 times, but after the gazillionth time, I had no patience left, so would simply leave the room or the house, and abandon my mother to deal with it. Having to care for her once her sleep patterns were gone was exhausting. She would sleep during the day and be awake at night. We would find her switching on the stove in the middle of the night and then forgetting it was on, or trying to leave the house and go shopping (while undressing herself on the driveway). Even having a night nurse to care for her, to give us a chance to sleep, didn’t work very well, because my gran would frequently have a negative reaction to the nurse, becoming angry and then violent.

So when my mom was diagnosed, I was shattered. Not only did I know the manner in which I would lose my mother, but I wasn’t sure how I would be able to handle her decline. (And at the back of my mind was the fear that this is how I too will end my life...and that my kids and husband will have to care for me while I become increasingly confused, angry and violent... Rage, rage against the dying of the light...)

Yet, oddly, I find I currently have patience to answer the same question endlessly without getting upset or annoyed. I find myself telling stories I know she will forget in 5 minutes, because I know it gives her pleasure to have a ‘normal’ conversation. Where, as a teenager, I couldn’t bear to be with my gran, now I find myself eager to spend time with my mom.

Maybe the difference is that I am older. Maybe it’s that this time around the person affected is my mother. Maybe it’s that this time around I am more Christ-like than I was as a teenager. Whatever it is, I am grateful that I am able to show my mother love, care and appreciation while she is still able to accept and appreciate it. I know that won’t always be the case.

I guess the lesson is to always make the most of every day, and to tell the people you love that you love them, because there are no guarantees in life. When someone is gone, it’s too late to spend time with them, too late to tell them you love them, too late to talk, too late to share an experience, too late, too late, too late. In a way, I’m glad my mother was diagnosed - it made me realize that the time I have left with her is short. I wish I’d been less wrapped up in my own day-to-day busyness of raising children and work and chores around the house. I wish I’d made more of the time we had while she was still active and fully present. But at least I have this time with her now.

Don’t let someone’s funeral or memorial be the time when you learn who that person really is. Don’t let their funeral be the time when you turn to one another and say ‘I wish I’d spent more time with them.’ Don’t let the only time you see family or friends be at the funeral of another family member or friend. What does it matter if the house isn’t clean, or the lawn isn’t mowed? What does it matter if your clothes aren’t ironed, or that book isn’t read? What does it matter, when compared to the incomparably short time we have left on this earth? What matters in eternity is not whether the chores got done, but whether we loved others in action (and not just in words or sentiment). Do not go gentle into that good night. Wear purple  Tick off the items on your bucket list. Spend time with the people you love, because in the blink of an eye either they, or you, will be gone, and it will be too late.