Sometimes life gets away from you. Time is stolen in the moments of the day. And suddenly, months have passed and you wonder where it went. We cannot ever recover the moments we allow to slide past us. Life has a starting point, and it has an ending point. It’s how we spend the time in-between those moments that count. Each morning, as in the gorgeous sunrise above, we are given a new beginning, a fresh start, a new opportunity. Deep breaths…
Recently, with my mom suffering from Alzheimer’s (which is a form of dementia and has no cure and worsens over time) my sister and I had a rough “Alzheimer’s day.” Quite often, she will call and we will have a gab fest that lasts for a couple of hours. We laugh, we share, we usually cry together. I was blessed with this woman coming into my life as an adult, when our parents chose to marry. She is my stepsister, but I love her like she’s been my sister all of my life. She has been such a blessing for my mom. And for me. When my stepdad died a couple of years ago, she stepped in as the primary caregiver for our mom. She lives 5 minutes from the retirement community my mom lives in. I live thousands of miles away (more than 5 hours by plane!) and my sole brother lives about an hour away. She and I are the main decision-makers for my mom’s living and health concerns. And this week we had a particularly rough day, which has led me to think, non-stop, about where we go from here.
Alzheimer’s can best be explained like this: “Alzheimer’s is a type of dementia that causes problems with memory, thinking, and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.” There are many forms of dementia, and Alzheimer’s is just one of them: Huntington’s Disease, Stroke, Dementia with Lewy Bodies (Robin Williams had this type), Traumatic Brain Injury, Down Syndrome, Frontotemporal, etc. There are so many types of dementia. With Alzheimer’s there are several things happening, all at the same time. A neurologist once said it is like the pistons firing in an engine. Sometimes they all fire in the correct sequence, and the engine runs smoothly; sometimes they mis-fire and we have sluggish momentum; sometimes different pistons fire in random order, changing the order moment to moment. And the engine stalls. That is the frustrating thing with Alzheimer’s – the person can be chewing your head off and turn around and say, “And how is your day, sweetheart?” All without skipping a beat. We can have blow-outs and fights and then sit down to a beautiful meal together. My mom has always had what we all have called a “sharp tongue.” Even as a young girl, I was often on the receiving, hard end, of her barbed comments. As I grew into my teen years, it got worse, because I became adept at slinging them right back at her, to protect myself. And she slowly, with the love and help of my stepdad, developed a filter. Her comments were fewer and less sharp as she aged. And we were all hopeful she would become this lovely, sweet old lady. And then my stepdad died. I cannot tell you the difference his death has made in our family. He was a source of joy and laughter, stories that made your side ache with the laughing, and constant love. He never differentiated between his kids – the ones he made, and the ones he gained through marriage. He was a second dad, given to me as an adult, and someone I adored. For my kids, he was just grandpa. And, to his family, he was a walking saint! He loved my mom so much, he somehow made her a better person. And we did not realize the extent to which he ran interference with our mom. Now that he is gone, her filter has gone, too. Along with the development of this horrid disease, she is grieving the loss of the love of her life. And she is not able to handle her life and how things have gone, very well at all. And she is so alone. At night, she kisses the photo of my stepdad goodnight, repeating it with a good morning kiss when she wakes in the morning. She usually cries over his death at least once a day. She is so alone.
My sister and I shared, in our conversation the other day, that we both hoped our birth parents would somehow get remarried. I think it is the fantasy of all children of divorce, regardless of their age when the divorce happens. It is natural to want your family to be together; your parents to be married to each other. But we also love how my mom and her mom are friends. They bonded over the love for the same man. And they see one another, do lunch, shop; I think it’s great. But my mom is lonely. She is angry. She does not want to live in a retirement home. She wants to be with her husband. She said she really hates her life. She lives in a beautiful place and has people to hang out with. But because she has met them since this disease took over her life, she does not really know them. She often forgets who is who. It is beyond her capacity to make friends any longer. Companions, yes; friends, no. And she gets angry – a lot. (Have I mentioned that before???) So far, we have been able to keep her where she is, but not for much longer. Alzheimer’s is winning. It is taking my mom away from us, replacing her with this angry, confused, person who is not handling things, and is just not a happy person, deep down.
And my heart hurts. Because I am going to have to stand up to this formidable woman – even if she is only 4’11” on a good day. And trust me, she is formidable, even at 87 years of age. And I hate that I am going to have to take her freedom from her. I am going to have to take away her choices. Because she is no longer capable of making sound choices. She does not remember so many, many common things we all take for granted. Even how to use her phone message machine, a stove, an iron for her clothes, even how to do laundry. There are so many things she is forgetting. And every moment is a “crap shoot” in that we don’t know which pistons will be firing, and which will not fire ever again.
And that brings me back to that “moment” thing. You know, we are not guaranteed our next breath. No one is immune. Everyone dies. There are no immortals (even though in my paranormal literature there are all sorts of them). Our lifetimes are finite. We are given just this one shot at it. And each moment is a singular occurrence in our lives. Each moment, each breath, is unique and sole, and each one departs, leaving us better or worse for that experience. With Alzheimer’s, those precious, lucid, loving moments become fewer and fewer.
Every moment I have on this earth can never be repeated. My memories are mine. There are things I have – objects – that mean something to me because they are associated with a memory that is precious to me. For example, I used to collect tea sets – cups/saucers/dessert plates. I have them in boxes. Yes, that is box with an “es” at the end. I have lots of them. Each and every one is precious to me because it was part of a family member’s collection, or I found it on an antique hunt one weekend, or came upon a set unexpectedly, or it was even a gift. But I have all sons (boys!!!). None of them particularly care about dainty, little tea sets. It is sort of a girlie thing to collect. What am I going to do with them? My plan is to gift my daughters-in-law, granddaughters, and special friends with them, with an attached story of where it came from and why it is special to me. And I will get around to it…ha-ha! I will. And I was thinking of all my mom’s things. When I take her choices away from her and place her in a memory home, it is basically reducing her home down to a room. What do we bring with her? What do we do with what we don’t bring? What is important to her, to her wellbeing and contentedness, her sense of safety and “home” when we do relocate her? Will any of us appreciate her things the way she has? We will understand why she has what she does? What are the things she is particularly attached to? In addition, I also ask myself, should I bring my mom home with me? With my husband and son? Is that fair to them? To me? To her? Is it doable? And so I cry…I am looking at my tea cups and remembering my grandma and my mom…God, how many wasted moments have there been when I could have said, “I love you” and given them hugs?
What memories am I making today that will resonate tomorrow? How am I sharing myself with those who mean the most to me? Because this could happen to me someday, and I want my family to have really known me. What did I do today that will make a difference on my tomorrow? Am I doing all I can do for myself, my family, my friends? “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air: They do not sow or reap or gather into barns — and yet your Heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his lifespan?” (Matthew 6:25-26) I try to trust, to not worry, because it does not add to my life…not a single hour. I try to face things as soon as I realize they are weighing on me, as I have found reality is usually much easier than what we conjure up in our minds. (And stress can be eased by just dealing with things head-on, facing our fears). But I do worry about my mom, and her limited, and getting narrower by the moment, future. I know she doesn’t worry about anything, because thinking like that no longer happens. Her pistons don’t fire like that. She doesn’t concern herself about anything but the moment she is currently living in…and the next moment is a guess. Some of the beauty (in a really warped way) of Alzheimer’s is the ability to only concern yourself with the here and now. It is also something that makes dealing with this disease so difficult. They call it the “long goodbye.” I’ve quoted it before. And I have used it before in blog posts. But as this disease progresses, I see the reality of it; I am living the reality of it. My mom rarely remembers when I call her. She thinks I don’t. That is fine. I know she won’t remember our chats after 4 or 5 minutes. “How is your day, sweetheart?” is said over and over in our conversations. The more often that sentence crops up, I know the conversation is over and I usually just say goodbye. This week, she was happy and getting ready for dinner (she’s old school and changes her outfit for dinner every day) when we were chatting on the phone. I had sent her flowers for Mother’s Day and she was joyful and happy, and grateful. The next day was hell day. Alzheimer’s won another round. Her pistons were firing all over the place. Unfortunately, those sorts of Alzheimer days wipe away the good days, because they are getting to be more and more severe. And so, it’s back to decision-making. A deep sigh, lots of tears, and research on my computer for places, benefits available, options for tomorrow. Lots of prayers about these upcoming choices and decisions. I know in my heart there are not many more tomorrows. I just wish I was 17 again wearing that red dress we both loved, and we were dressing for my graduation party from high school, and that I had taken that moment to tell her how much I loved her, when she would have really heard me, and remembered.