This was made by my friend Kathi, a Dispenser of Hope.
My mother and I are learning hope amid Alzheimer’s. She hasn’t been always great at it and neither have I. But we are learning. This section of my website will be dedicated to those who are striving to live with hope and joy, despite the ravages of that which ails them. Lament and joy are not opposites. We are figuring that out.
Both my mother and I will write here. Her story is hers. And mine is mine. And my story of Alzheimer’s is different than my sister’s story or my brother’s. Yes, each of us are on the same road, but we each experience the road in different ways. And thus, I want to make sure I honor the variety. Do come back often. My mother and I have been writing about all this for over two years and will be begin to publish more of what has been written. Scroll down in this section of my website to read.
On the eve of mother’s day 2016, my siblings and I admitted our mother to an inpatient hospice. What an odd thing to have to do. Hospice does not seem to be the best gift to give to your mother on mother’s day. And yet, in the situation she is in, it is the best kind of gift. Or is it? I am a mixed bag of emotions. I run the risk of sharing this post with you today, but I trust in the grace of anyone who reads this.
I walked by round bales of hay yesterday at the Denver Botanic Gardens at Chatfield. And of course I thought of you.
Round bales of hay at Denver Botanic Gardens — Chatfield on July 1, 2015.
I recalled the phone calls you would make each fall. You LOVED when the hay was cut and baled on the rolling hills of your Tennessee property.
“I just think it is all so lovely,” you exclaimed.
I didn’t take notice of this kind of beauty back then.
Now I do.
Your absence has taught me to
Every once in a while I like to peruse my journal and share with my readers an excerpt about the Alzheimer’s road on which my mother and I travel. Sometimes the road is a dark alley, a place I am unable to see much beauty. On a day two years ago, I found myself in such an alley. I was busy at work and a good kind of tired from the typical crazy start to a semester. Yet there were some decisions needing to be made for Mom. I was feeling the weight of what needed to be said. Mom’s care wasn’t up to what it should be.
Truth had to be spoken. Being an advocate is an honor and it is a VERY tough job. Reluctantly I drove over to her assisted living center. I entered upon a scene, one in which I was able to observe my mother from afar. It was a scenario that I later learned, made my mother gag. I don’t think it will turn your stomach. It didn’t mine. Instead, on this dark alley kind of day, my heart was turned, not my stomach. It was turned towards love, towards beauty; the kind of beauty that strengthened me to be a good advocate.
I have heard it said that I should not attempt to do things when I am not at my best. Apparently if I am not at my best, I will make too many mistakes. I have even heard it implied that if I am not at my best, I might sin. Thus, I should wait to engage until I have a better chance to avoid sin. But the problem for me is that I’m not sure I have ever been at my best. And honestly, what does “at my best” even mean?
Does it mean I have to be EXCELLENT in all that I do? Or maybe it means I have to be totally awesome (a word that has little meaning anymore).
Does being at my best mean that I have to address all my potential limitations, thus limiting all liabilities?
If being at my best means being totally awesome, or perfect, or in a zone where my limitations are completely diminished, then I’m toast. Why? I’m simply NEVER in that zone.
All this could make me not want to show up to life. But I would never offer the hand of love. Why?
My mother still knows the meaning of the words she hears. This is true even in the mid to late stage 5 of her Alzheimer’s journey. Thus, on a certain Sunday morning, she was gripped by the words she heard. A song she had never listened to prior to this particular morning.
Here is a very short entry from my journal I’d like to share with you.
As I am losing my mother I am also trying to find her. What an odd journey it is when a caregiver traverses the road of Alzheimer’s.
Trying to find her? Yes. Trying to find her. That is what I have been doing all my life.
I fear writing this because
We all have days when life is hard. These can be normal ordinary days when we have simply too much or too many: too much laundry, too many children vomiting, too many emails to return. I might have too much weight to lose or too many friends to please. It can get more serious than this when I have too much grief to bear to or too many lonely nights to face. But in all cases big and small, too much is just…well…it’s just too much! And too many is the same — too many.
On this Alzheimer’s journey, I have my days where it all feels too much, when life is hard. Lately I’ve noticed Mom is wearing the same clothes every day, rarely changing them unless she is prompted. Showers on her own initiative are fewer and farther between. And just a few weeks past, for the first time EVER, she forgot my name. Her forgetting only lasted about five minutes. But it was the longest five minutes of this journey thus far. I hate this so much. The ambiguous grief feels too much.
Is there something that feels too much for you? I think we need to give ourselves permission and admit that life can sometimes just really be hard!
Stop and notice I am not saying BUT. I am saying AND.
And, according to my mother, when something is hard I don’t always have to “take it like that.” In other words, sometimes I make it harder than it needs to be at the moment. In the following conversation, my mother taught me that it is sometimes VERY APPROPRIATE to not take life so hard when life is hard. She didn’t know it at the time and neither did I, but in this dialogue, she tells me how to live well during these days/years of Alzheimer’s. Read this endearing post written by my mother over a year ago, transcribed by me.
We often fail to realize that the ordinary can be extraordinary. This is one reason why hope can wane during times of trying to make ends meet, when we are putting one foot in front of the other, doing our day-in and day-out tasks. Read the quote in the image below and ponder it for a minute. Read it 2-3 times and soak it in. Then read on.
You are busy so I’ll keep this post short.
Ordinary Can Be Extraordinary
I have loved
Lost memories AND laughter? Yes. With my mother, often this is the case. She can just crack me up and crack herself up.
photo courtesy of istockphoto/thinglass
As we were driving across town today my mother brought up the subject of her second husband and his cigars. As a chance to “test her memory” I asked, “Tell me Mom, where all did you live with Nord?” [She had only lived in one place with him, for 18 years.]
“Oh I don’t know. Hmmm. I don’t have much of a memory anymore.” Then she shrugged. This lost memory was significant to me. Why?
Taking away the car keys is one of the hardest tasks in eldercare. Hard, grueling and just plain ugly it is. This was the day I really had to be The Lone Caregiver. No one else could do it. So I had to be The Mean One.
photo courtesy of istockphoto/3bugsmom
For about a month I lied to her every time she inquired about her car’s location. “It’s in the shop Mom.” She would relax, take a deep breath and say, “Oh OK. That’s good. Thanks for taking care of that honey.” There were too many other changes going on. It needed to be a while before I could tell her that she’d no longer be driving. This is called “therapeutic lying.” Look it up. Really. There is such a thing.
But therapeutic lying couldn’t go on forever about such a thing as car keys. So, I broke out in a sweat and finally told her. But then she’d forget we had that conversation and wonder AGAIN where her car was. And AGAIN I’d break out in a sweat and tell her. It was horrible.
Due to Alzheimer’s,