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.
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,
We all know what it’s like to want to go home. I’m at work and I want to go home. I’m on my dream vacation (I wish) and I want to go home. I’m out running errands and I just want to go home. And when you have been moved out of your your home by your own children and into one that is not your home, you are eventually going to say it.
“I am tired of being here,” lamented my mother this past Friday.
“You are? What would you like to do about this?” I asked.
“I want to go home.”
I said nothing in reply. All I could hear was my shallow breathing as I stood in the doorway of her room in the assisted living center. She said her truth and then stared at me, waiting for my reply. But I became mute. Unusual for her, for she loves to fill up silence with chatter, Mom said nothing to my non-response.
For what seemed like an eternity, we did not speak. We just looked intently at each other’s forlorn faces. Then, after what seemed like ten minutes but probably was only one,
Being slapped in the face by the reality of Alzheimer’s is NOT fun. It happens to me and it happens to my mother. On such a day I let myself cry and then I dig in my heels. Here is one such day I’d like to share. An excerpt from my journal:
Mother’s Day 2012
I walk through her apartment door with a bright bouquet of flowers and a big stuffed smiley face twice the size of a basketball. The Hallmark store does have its advantages. It is twelve o’clock noon on Mother’s day. I find her on the lanai, still in her robe. This is not unusual. I kiss her forehead, cheerfully greeting her with a smile.
She comes into the living room with me and we play “kickball” with the stuffed smiley face. We giggle like schoolgirls. Nearby my husband takes care of a household task. Mom settles herself back into the lounge chair on the lanai and I sit down at the computer to check its settings (volume up, skype still on, calendar with reminders open: check, check, check).
It feels like its going to be a good day.
But then I look down.
Upon hearing about his Alzheimer’s, I knew my mother’s response would communicate gratitude to Pat Bowlen and the Broncos. If you can manage her Alzheimer’s repetition, hang on to the conversation here in this post because Mom’s wisdom goes deep. On the surface level, it appears she is talking straight to Mr. Bowlen and his family and friends. But, read carefully. When I read her words, the advice she gives is also for the ears of other caregivers and [gulp], the advice is to me. As I called myself in a previous post, I am a lone caregiver, and when Mom talks about Mr. Bowlen’s needs, I began to feel some pressure to meet EVERY one of HER needs. This is ALWAYS HARD FOR ME. Below, Mom tells the truth about what she needs but she tells it slant (Emily Dickenson). And, despite the pressure I was feeling, I needed to let her tell me.
October 2013. The two of us in Target waiting for yet ANOTHER prescription. A hard day made better by trying on Bronco hats. Thank you Pat Bowlen and the Broncos for making her life with Alzheimer’s much more fun (and a tad sillier).
Not being able to meet every one of Mom’s needs is a painful reality I continue to embrace in small doses. I want Pat Bowlen’s family and close friends to know how much they are in my prayers and in my mother’s heart (each time I remind her of his Alzheimer’s). Their journey with Pat Bowlen is hard, but it also is a sacred and holy (and sometimes harrowing) path. The tasks they are called to take up will stretch their heart and their faith. I pray that they find hope. In a previous post I encourage my readers towards a rooted hope. We do that by peering at the gifts found in the harsh experience of Alzheimer’s. Even as he struggles, Pat Bowlen will bless his family and friends. And they will bless him. There are still gifts to be given and received. I wish I didn’t know this bitter sweet truth. But I do.
Read on to hear my mother’s words of wisdom. If it is helpful to you or to Mr. Bowlen’s family that is icing on the cake. Take note as you read. There is a subtle thank you to Pat Bowlen in her words. The Broncos are a delightful gift to her (and thus to me) and we will be forever grateful.