You Go Mom!

Another great day for my mom.  These are mini steps for the average guy, but for someone who has been struggling with Parkinsons, on her 10th year now, these steps are giant.  It’s a wicked disease that just gets worse.  So when there’s a day in the other direction, we are celebrating!

We have been blessed with a caregiver who loves to shower her, put makeup on her, and to dye and curl her hair.  These are things you and I do in a matter of minutes before leaving the house.  For my mom and her caregiver, this can take pretty much all morning.

And the result is a woman who feels brand new.  When I walked into her room that afternoon, she was reading!  She was holding the book we had just finished reading aloud together yesterday, and she was reading it to herself.  Amazing, given the weight of the hardback book and how weak she’s been to even be able to lift it is a gift.  But here she was holding the book, and turning the pages!  AND she was on page 12!

Life is an adventure.  When the doctors say, “it’s downhill from now on,” my mom looks at them, and says with her eyes, “oh no it isn’t….you have no idea who I am.”

 

Life is Full of Surprises

Who would have thought that we’d be celebrating peeing in the bed?  So my mom has reversed her inabilities, and instead of not being able to relieve herself, she has gone to not being able to hold in her pee.  She wakes from her sleep with her diapers and the bed soaked in pee.

When you think about it, this is a much better problem than the reverse.  There’s no catheter involved, and there’s the knowledge that her mind is communicating with her body to eliminate waste.  She simply has no control over when and how.

And there’s that word ‘simply’.  How we float through life, not even stopping to think about how our bodies and minds communicate, how we so effortlessly pee, swallow, talk.  It’s when I’m with my mom, whose mind is clear and beautiful, and who so graciously and patiently wrote on her BINGO card after a half hour’s effort, “I don’t know what’s wrong with me,”  that I find myself filled with tears for the simple things in life, and for her courage.

It’s the Little Things We Take for Granted

It’s hard to imagine not being able to swallow, walk or talk.  Imagine now not being able to pee.  These are actions that our bodies have been doing for years.  We take these actions for granted because they require no effort.  The brain sends signals to our various muscles, and our bodies respond….

unless we have Parkinson’s and then slowly the body stops receiving the necessary signals, and the actions are no longer accessible.

The other day my mom kept trying to tell us something was wrong.  She pulled and pulled at her feeding tube, anxious and irritable. We couldn’t understand what was wrong, and she wasn’t able to tell us.  Finally when she settled down, she was able to spell out the words on her Bingo card, “I feel like I have to pee, but I can’t.”

It was the end of the day, but fortunately the urologist stayed late and agreed to see her, avoiding hours in the emergency room.  No infection, but she had to choose to be catheterized and carry a bag that needs to be emptied regularly, or to have our caregivers manually insert a catheter and release her urine every few hours.  She hates the catheter at the hospital, and has been known to tear it out, so it was no surprise she chose the latter.

As I sat reading her favorite book to her last night, she reached for her Bingo card and began to tell me something.  She struggled and struggled, starting over and over again to get the words right.  I guessed as best I could, and when it was finally out, she had spelled,

“I forgot what I was talking about.”  And she and I laughed and laughed.

As her body continues to fail her, I suppose her mind is struggling too.

I’m so grateful she can still laugh.  Maybe the day she can’t, will be the day she chooses to stop living.

Maybe the day I pull out photos of baby Odin, and she isn’t able to smile and laugh, will be the day she says she’s had enough.

 

 

 

 

In Gratitude for What Is

Day 2 without a phone.

I’ve been super productive and aware.  It’s almost as if I have more time available to me, which makes me wonder exactly how much time I do spend looking at my phone.  If I add up all those tiny minutes, it must be quite a few.

But it’s more than just the time that seems to be available to me.  I would have to describe the feeling as more space too.  It’s as if there’s more space in my mind to think and process; I’m less preoccupied with other people’s problems, and more present for myself.

In the old days, we used to check the answering machine when we got home at the end of the day.  I wonder if I could return to that mode of leaving my phone in it’s place, and moving about my day with more space and time.

I could take notes on a pad of paper – but I love storing notes in my phone because I can look them up whenever I want, while standing in line, or sitting in a waiting room.

I could go back to looking at a Thomas Guide map to get where I needed to go, or mapquest it before I leave the house – but I love asking Siri to take me to the address I’m heading.  I can just hop in the car and be on my way.  It’s super convenient.

I could stop making calls in the car and spend more time practicing my Spanish – but I love the efficiency of talking while I’m driving.  It’s a time when I’m alone and I can be present for my friend on the other end.

I could stop listening to podcasts and music, and listen to the radio – but I love the options available to me on my phone.  It’s almost as if I can customize my life to what I desire, instead of having to listen to stuff someone else is choosing for me.

I could stop texting – but I love our family group text which we do daily and is such a nice way to keep in touch with my kids.

I could stop taking photos and be more present to the moment- but I absolutely love recording the moment and looking back in appreciation.

Not that I think about it, I think I’ll keep my phone and just make a greater effort to put it away regularly.  Just as I’m very conscious of what I eat and what exercise is good for me, I can do the same with my phone.  I don’t have to become an addict to my phone.  I can be grateful for it’s power and before I pick it up, I will mindfully ask myself,

“Is this good for me?”

I can be grateful for it, but I don’t have to be dependent on it.  Life is beautiful with, or without my phone.

 

Phone-less, Awakened and Present

I’ve been taking the metro more and more these days.  Trying to experience the city, and all that it has to offer.  It’s such a convenient way to travel!  No traffic, on time, clean and so economical!

Last night, I had no idea that my shallow pocket was going to let me down.  As I exited the train last, I reached for my phone, and it was gone!  Oh man!!!  What a bummer! I’ve had many moments of gratitude for my phone, wondering what life would be like without it.  I love my phone.  It does everything!

I thought I would be devastated, absolutely a wreck, if I’d ever lose my phone.  But to my surprise, I wasn’t.  I took what steps I could, reported it lost, sent some emails alerting my parents that I wasn’t going to be able to be reached.

To my surprise, I actually have been experiencing a lightness of being today, almost a liberating existence.

I’ve been walking around without a phone.  As I headed to the Verizon store to see what my insurance could do for me, instead of reaching into my pocket to check it every 15 minutes, I found myself simply enjoying my surroundings.  I didn’t have to make phone calls, or listen to voicemails or podcasts.  It’s as if all my senses had been heightened.  I walked by a church that I pass frequently, and this time I could hear tap shoes, and lessons being given on the second floor.  I’d never noticed that before.  I could hear tiny birds in the tree above me, and noticed a nest with the mama bird coming in and out of the branches.

As I rounded the corner, I could smell something sweet like the hint of cookies, I looked up at the sign above the storefront, and I noticed that the restaurant was called, Chinese Food and Donuts.  I had to laugh thinking about all the times I had thought it was just a place to get fast Chinese food, but it was more than that.  It was the combination of garlic stir-fry and deep fried dough that I realized one could get a donut after the meal.  The smell of stir-fry had always overpowered the donut smell, and as I must have been focused on my phone, I had missed the smell of the donuts.

I use my phone for navigation, whenever I need to get somewhere unfamiliar.  Today I was having to memorize the address and look carefully at the numbers above the storefronts.  I became acutely aware of the different stores and I found myself using my brain to calculate how much further I needed to walk.

Without my phone, I was reminded of the days years ago when I was much more aware of my surroundings.  Perhaps losing my phone, was the opportunity for me to pause and appreciate more of my day, and to be present to the moment.

Today I decided to remember this feeling and to detach from my phone regularly.  It was such a beautiful day!

 

 

A New Man Appears as the Body Heals, so too does the Spirit

My dad has experienced a shift in his attitude.  I’ve been visiting everyday, hoping he could see the light, and last Friday, for some reason, he decided to be positive.  It was nothing I did, nothing I said, he just woke up and felt different.

I do believe mind, body, spirit are all interconnected.  And as I encouraged him to use his positive thinking to help shift how his body was feeling, he just couldn’t get out of his funk.  In this case, I think it was the shift in how his body was responding to his meds, that he began to have a healthy, positive mind.

“I feel better!  My feet are no longer swollen!  I feel stronger!”  he announced.

Instead of using my mom’s scooter to get around, he started using her walker the other day.  He stopped to visit with friends and started conversations.  He even met a new person!  He’s laughing now!  The other night I took him to listen to the pianist in the living room, and he stayed afterward to tell her how good she was, that she should come more often, and then she invited him to play the piano with her!

It was a blessing to watch.

Actually, he’s been fun to be around now that he’s being positive, kind and smiling.  His radiant spirit is shining.  Oh joy!

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” – Thich Nhat Han

Love Expands Beyond Our Losses

Joe and Lyn met at the village three years ago. They are both in their 90’s.  They have the most beautiful relationship.  Even though Joe is hard of hearing, he listens.  He manages to understand and to fill the space with compassion.  Lyn comes prepared for dinner.  She has her slivers of garlic, and special salt, and some spices to jazz up the mundane meals that are served at the village.  Joe listens when she’s not happy with her meal.   He doesn’t try to convince her otherwise, he just listens.  In the meantime, devouring his meal with great satisfaction.  I’ve never heard him complain.

I sat next to them and asked Joe what he used to do since he loves to watch the news and is always up to date on the latest happenings.  I thought perhaps he had been in politics.

“I was a playwright and attorney ….”  long pause…

“and now I’m a lover,” he added with a big smile and a look of gratitude at Lyn.  They held each other gazes.

Love grows and is certainly meant to be shared.  They both speak fondly of their former spouses, and even with their losses, they are able to move on and find joy and adventure in a new and loving relationship.