Category: dying

Where Strength Comes From

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Laying here at Mayo on day seven of my epilepsy monitoring unit experience, waiting for seizures and wondering when I will get that heartbreaking message to let me know that my dad’s journey has taken him to the spirit world. I find myself thinking about the history that cradles me in its arms and provides me strength.

Our strength is not solely our own. It comes from the generations before us who have brought us to this place. These days I find myself thinking of many people, one is my great-aunt Sr. Christine.

Sr. Christine was born in 1898 in Wisconsin. She grew up on a farm in outside of Port Washington. Many Catholic families of that time were pleased to have children grow up to be nuns and priests. I don’t know if my great-grandparents wanted Sr. Christine to become a nun, but I do remember hearing that they were unhappy with her choice to join the School Sisters of Notre Dame. They had apparently wanted her to be a Franciscan. But, Sr. Christine was a determined young woman who’d heard her calling and followed it despite the unrest that it caused in her family.

My memories of her are of visits to the convent where she lived in her latter years. I think of that little blue room that she lived in. She had her bed, a small wardrobe, and her chair. I don’t remember any other furniture. I don’t remember if there were more chairs for guests. I suppose there were or maybe we brought them in from another room. Her life was simple. Yet every time we visited she had a smile on her face and was delighted to share in conversations with many questions about how all the family was doing. I remember too how every time we went to visit she would have me or maybe mom or dad go to her wardrobe to pull out a little gift for me, usually a prayer card though once she gave me a lovely heart shaped box that I kept for years.

I think of her now as I lay here in this hospital bed and I recognize who taught me and where my strength comes from. It is from Sr. Christine who lived a life of simplicity and faced many challenges with a joyous determination and simple understanding that things would be okay. It is also from many others in my ancestry who I love and revere, but those stories are for another time. For now, I simply thank that dear woman for teaching me and making me who I am. I hope that my actions in life can honor her.

The Continuing Process

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It’s 10pm on my third day at the epilepsy monitoring unit. My first visit here was three days. Tomorrow this will become my longest visit. Still no seizures. Tonight I’ll go to bed closer to my normal time. I’m told it’s not good to do sleep deprivation multiple days in a row. I am glad of that. Two nights in a row of going to bed at 3am was quite enough for me. We’ve stopped my seizure meds tonight too. I hope that this step pushes me into having some seizures.

It is so strange to hope for a seizure. I am in probably the safest place in the world to have a seizure, but still I am asking for something that I know gives me headaches and stomachaches and just generally can make me feel like absolute hell. I am also asking for something that I know always has that chance of killing me. It’s not a big possibility. SUDEP is pretty uncommon, but I am a middle aged woman who lives alone and has uncontrolled seizures. That puts me in a high risk category. So, even here in the safest place in the world asking for seizures seems such a risk.

I re-watched the documentary about the history of Mayo today. I’d watched in December too. I was reminded today that Dr. Charlie was the brother who did much of the work on brains. So, laying here in my hospital bed waiting for the seizures found myself calling on the spirit of Dr. Charlie to watch and guide. That’s it, that’s what I can do. I wonder how many patients every day call on the spirits of Dr. Charlie, Dr. Will and their father and the nuns.

What else is there to do with the crazy balance of fear and hope that comes with asking for lightning to strike in my own brain? I suppose I might again look at it as rebirthing in some way. If women looked only to labor, they would never give birth. I need to remind myself that my seizures right now are only the labor that I need to go through, the birthing to my new life. I believe that I will be seizure free. This is just a process for me.

When Will We Be Able to Breathe Again?

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The Minneapolis police murdered another Black man last night. Mr. George Floyd died, his airway crushed under knee of racism.

I watched a press conference this afternoon about the event. It was gathering of mostly African American leaders with a sprinkling of other people as well. I was struck by an elder standing near the mic. I didn’t catch his name. I think it might have been Frank something. He was Native. I don’t know his tribe. He wore the AIM uniform, an AIM t-shirt, jean jacket, and cowboy hat. His look reminded me of a hundred other friends I’ve known along the way and of a story.

I was reminded that we all come from around the same fire. Someday, if we are to survive we have to come back together be that new people.

This man died because he couldn’t breathe through the hatred and fear that held him down. Not his hatred, not his fear, the hatred and fear that is white and monied. The hatred and fear that chokes the life out of all of us.

It’s been over 500 years now. It’s long enough. It’s time to step out and celebrate the beauty of our differences. We are more than black and white. I know we’re still social distancing, but in whatever way you can, hold each other in your hearts, raise up the beauty, celebrate the strength, honor the struggles. Do whatever it is that you can to make it possible for all who are being crushed to breathe again.

Stories of a Lifetime

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My father was a storyteller.  His head held memories of a lifetime.  So much joy and some sorrow too, it seemed he never forgot anything.  He loved to laugh and share the tales of his mischievous youth and didn’t mind sometimes letting out some of the deeper stories too, those painful memories that made him.  

I used to love hearing how he and some of the other boys rigged up the firecrackers in Uncle Jake’s old farm truck, thinking that their cousin was going to be the one using the truck that day.  His eyes would just sparkle as he laughed talking about how fast they ran and hid when Uncle Jake jumped out of that truck swearing mad and ready to get whoever had played that trick.  

Sometimes there were other stories too.  I remember once Dad told me about working on the neighbor’s farm as a young man.  He’d skipped one day. I don’t remember why, if he was sick or just in a teenage moment of not wanting to work, but he skipped that day and it changed his world.  His co-worker was driving the farm truck. If Dad had been there he would have been in the truck too. The young man backed up the truck not seeing the farmer’s young child behind him.  The little one, maybe three or four years old, was killed. Dad never forgave himself for missing work that day. He always wondered if he had been there, would he have seen the child? 

Stories, stories, so many stories, they tell us who we are.  Dad is still with us, but the stories are gone or at least they are jumbled and confused.  Having a parent with dementia is hard. Having a parent with dementia during the times of COVID-19 is even harder.  

My father lives in a memory care unit and, like most facilities now, is not allowed visitors.  His recognition of people over the phone is non-existent and video calling doesn’t make sense to him, so it is as if he is both here and not here at the same time.  It is almost a preparation for his passing to have him in this world and yet not be able to reach him in any way.  

I called him for Easter.  I knew the phone might be a challenge, but I had to try.  I couldn’t leave him alone for the holiday. The staff person told me he was sleepy, but she’d take the phone to him in the dining area.  I could hear her explaining to him that he had a phone call, then explaining to him that the thing she was sharing with him was a phone. She told him to hold it to his ear and to say hello.  I said “Hi Dad, it’s Amy. I just wanted to call you to say Happy Easter and to tell you that I love you.” I hoped that hearing my voice would help him understand and that he would say something.  He said nothing.  

The staff person came back on the phone and apologized to me saying that it seemed he just didn’t understand what the phone was.  I told her it was okay and asked that she just let him know that I called and just to tell him Happy Easter and the family loves him.  

I wish I could be there just to hold his hand.  I got to hold his hand at Christmas time when he cried because he wanted to go see his mother.  It broke my heart to hold the hand of my 91 year old father and tell him that grandma wasn’t with us anymore, but now all I have is the hope that he can join her soon and leave his confusion and sorrow behind, that hope and the stories of a lifetime. 

Beautiful Smiles

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Uncle Wally just celebrated his 90th birthday last week. I finally watched watched the video today. It was a sweet little Facebook tribute that must have been created by by one of my cousins or maybe one of their kids.

I remember all the times we used to go celebrate at their house. Aunt Marilyn always had the best food and so much of it! My favorite is still the frosted wreath shaped cookies she made at Christmas time. Summers at their house were fabulous too. Who else had a lake right in their back yard? Uncle Wally swam every day to stay in shape and just get some sun. I loved getting out in that water with my cousins and just playing the day away.

Uncle Wally can’t swim anymore. Health issues forced him into a care facility a few years ago. Aunt Marilyn keeps going strong and I’m sure is still cooking up a storm. Up until this virus changed everything, she went to be with Uncle Wally every day and to care for him. Now, she can’t go in the building.

That didn’t stop the party though. They celebrated by the window with big posters wishing my uncle a happy 90th. I nearly cried as I watched the video as saw Aunt Marilyn and Uncle Wally talking through the glass. I couldn’t read what they were saying, but could only imagine them expressing their love. I’m guessing this may be the first time in nearly 70 years in which Uncle Wally didn’t celebrate his birthday with some sort of home baked treat, not to mention being in the arms of loved ones. Still, watching the video I couldn’t help but see how he was smiling.

That’s the way it is I suppose. I think of Uncle Wally and my dad and their sisters Aunts Lucille and Florence. Aunt Florence left the world far too young, but the others are all in their 90’s now. They’ve seen their struggles. They’ve known death since they were kids. They learned early on the hard work that it took to earn a dollar. They’ve seen struggles and wars and all the rest. But, if there’s something that I’ve learned from there experience it is that ultimately, you just have to smile and laugh and find your joy in the little moments of life.

I have to say, Uncle Wally and really all my aunts and uncles and my dad have the most beautiful smiles.

The Blizzard of Dementia

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My father was born in a blizzard in 1928. He entered a world of isolation where it was impossible to travel. He entered a world where the whirls of snow kept people apart from one another. But, eventually, the snow melted and he grew and thrived and the world was good to him.

Dad entered his 92nd year in another blizzard. This one had a name. We’re calling it COVID-19. This one is different. It has me wondering about the many other people across the world with aging family and friends in the same situation as my father. He has dementia and lives in a memory care unit.

Up until just a few years ago his mind was really quite sharp. Not too many years back he was able to live in an apartment on his own, then a care facility, and just a few months ago we made the decision to move him to memory care. I am thankful we made that decision and think we did the right thing. I wonder about him too.

Like others across the country, his facility is closed to visitors now to protect the health of the patients and care providers and the inhabitants are following strict regulations to keep everyone safe.

Before this virus, Dad had visitors a few times a week, mostly family. I couldn’t usually visit because I live a state away, but I had the comfort of knowing people could and were spending time with him. We have great faith in the staff of his living facility and have seen that they are doing wonderful work, but I wonder is that the equal to family and friends? A year ago I would have called him, but today the phone only confuses and frustrates him. A video call would be out of the question.

There was a moment when I saw him over the Christmas holidays that he said to me with tears in his eyes that he wanted to go see his Ma. He said that Ma shouldn’t be alone at Christmas. I explained to him that she wasn’t alone. That she was well and happy in heaven and that he’d see her there again some day. The words calmed him. I find myself caught now between wanting to be there with him holding his hand and making everything okay, thinking he shouldn’t be alone during this time, and just wishing he could go be with his Ma.

Dementia is a strange force in our lives and, I think, becomes even more so when outside forces join in taking our loved ones from us as this virus is doing right now. I am trying so hard right now to come up with some great and inspirational words, but none are coming. So maybe there is nothing more right now than to say– If you’re one of the people out there who’s been disconnected from someone you love because of dementia, if you’re struggling through not being able to be next to them much less communicate with them right now, you aren’t alone. There are a lot of us out here and we will get through this blizzard one way or another. Take good care my friends

That Time of Year Again

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It’s getting to be that time of year again. Some years it passes with barely a notice. Other years I find myself thinking about it for weeks as it nears. The anniversary of my mom’s death is coming up again on July 7th.

This year there’s something different again. I realized it the other day. While my health is good, I am entering “the cancer years.” My mom was about my age when she was first diagnosed with breast cancer. What a strange thing to think about. Walking down the street, it just came to me and I realized that were I in her shoes I’d only have six year left. How bizarre.

Personally, my plan at the moment is to continue on for at least another forty or fifty years and to maintain and improve my health along the way. Still, I find myself thinking of her and the fact that we don’t know when our end is coming.

Mom was a religious woman. God was her center. I don’t claim her belief system, but I recognize in myself the same importance to believe. Where she spent her hours in prayer meetings and churches, reading the bible, and fingering rosaries, I lay down my tobacco and breathe, walk and burn the sage.

It’s a good time to recognize my similarities with the woman I loved and still love 35 year after she’s crossed over the river. Nearly 48 years into my life and I am still getting to know myself. That’s powerful. That’s good.

Still, it’s scary to make another mammogram appointment. Yet, I will go in, breathe deep, and know in my heart that my path is long and is to be filled with health and good things. It is for me to live each day. Cancer was her story and it is not mine. I am thankful.

Preparing for the Journey

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I drove home to Wisconsin last weekend to celebrate Easter with my family. It’s a bit of hike for just a weekend, about an eight or nine hour drive each way. But, it was important. I needed both to get away to relax and to go see family especially my dad.

Dad turned 91 last month. He’s had a good journey through this life, seen a lot of both sorrow and joys, but largely I think joys have won out, six kids, twelve grandkids, and seven great-grandchildren all surrounded in love.

Things are changing with him now. They have been for several years at least, but now it’s moving faster. Dad is walking away, heading toward the next journey. Dad has dementia. No big surprise these days at 91, still it’s strange to watch, to see him go, and to feel the feelings that go with it.

I went home last weekend knowing it might be the last visit when Dad would know me. What a strange thing to wonder if one’s own father will recognize them. This time he did, though I think for a moment he may have confused me and one of my sisters. She and I look a lot alike so that made sense. Others, with healthy, functioning brains, confuse us as well.

There are a lot of sad stories out there about elderly people left alone in nursing homes with no one to visit them. I never understood that. How could someone leave an elder to die alone? I think I have some perspective now. It’s not necessarily a lack of love, but too much. It takes a lot of strength to be with the person you love when they are no longer there.

This became clear to me when my sister JoAnn, who is the primary caretaker for Dad, got a message from his care facility letting her know that he was having a rough day. We decided to stop by and check things out in person rather than just calling back.

We got there to find Dad confused and frustrated and as is becoming typical, not wearing his hearing aids. He thought some of his belongings were missing and he’d gone into other people’s rooms to find them. He’d come out with other people’s belongings and still believing his things were gone. He argued with us and the staff person, telling us if we didn’t find his missing clothing he’d just go find it himself.

It’s hard for me to imagine what it would be like to feel that unsafe in my home even more bizarre to think that without his hearing aids Dad just saw mouths moving, but couldn’t hear enough to understand the words being said. What would that be like to be in this place where nothing makes sense anymore?

I don’t know, but I can tell you that seeing Dad in that place tore my heart out. I can see why people stop visiting their aging parents when each visit acknowledges the pain and confusion and the reality that there is nothing we can do to make it better other than maybe just being there.

JoAnn was able to put his hearing aids in and work with staff to put away the belongings he’d taken while I just sat with him for a bit to help him calm. Then JoAnn and the staff reassured him by taking a look through his closet and assuring him that everything was there. Dad was calm and maybe a little reassured by the time we left. I came back later in the day to find him still confused and concerned about his belongings, but in a better mood and able to carry on conversation, albeit a strange conversation. At least he trusted me as I assured him that both he and his belongings were safe and cared for.

On Easter we had a family party. Dad was able to join us and proudly shared his little paper bunny basket full of candies with everyone. Most of the afternoon he just smiled at everyone. He did, at one point, introduce a granddaughter to her own father, but at least he knew who both of them were on some level. He just didn’t know they knew each other.

We were all glad that he could join us, but I think we all recognized with sadness that this was probably his last family party. He may live for more years, but he is, at the same time, leaving us. I don’t think any of us know quite what to do with that. I know that each moment of recognition, every hug and kiss means more to me than ever before.

Minnesota now feels a million miles away from home in Wisconsin. Dad can’t hold conversations on the phone anymore. He needs to see faces to be able to connect the sounds and have it make sense. I told him when we parted that I’d write to him. He thanked me and let me know that he wouldn’t write back. Dementia does sometimes encourage honesty, I guess.

I don’t know if I will ever get to really talk with him again. Even if we are someday in the same place together, will he be there?

I don’t know what all this means other than hold your elders close, honor them, love them, comfort them. The journey in this world is hard. Hopefully the spirit world gives comfort someday.