Category: family

Another Mayo Holiday

The Mayo Clinic is becoming my new holiday spa. It’s where I spent New Year’s Eve and while I probably won’t really be in the hospital on the 4th of July I’ll be in Rochester between appointments.

I’m heading to the clinic today on what feels like an adventure to start a new life. I don’t know yet. Today just begins another round of tests. I’ll be doing a PET scan today. I think it’s my first one. If I understand correctly, they inject sugar into my brain for the imaging. I don’t quite remember why, but as a lifetime sugar junkie the thought of mainlining the stuff is intriguing.

I am standing on a precipice it seems. These tests could tell us that I am a candidate for surgery or maybe an implant, something to correct my seizures, maybe just to lower the frequency and intensity or maybe to render me seizure free or they could tell me there isn’t much to do at this point other than maybe try more medications and hope. I could fly or I could tumble and be left to just keep pushing my way through the brush far below.

It’s a weird time to be standing on this precipice and hoping for the best in new life. Next week, the day that I start my visit to the epilepsy monitoring unit, will be the thirty-sixth anniversary of my mom’s death. How weird to spend that day laying in a hospital bed all hooked up with wires. But, it made sense to me to take the opportunity, celebrate her life by reclaiming my own. I’m taking my crocheting with me so I might spend some of the day with her crochet hook working on a new project and remembering all those wonderful nights sitting on the couch cuddled up beside her reading or maybe working on my own little project as she worked.

Then there’s Dad. He doesn’t know that I’m going back to Mayo. As a matter of fact he doesn’t know much anymore. Dementia has taken him away. Because of COVID-19 no one has been able to visit him, though we’re starting to be able to make video calls. My sister Jean made the first call last week. His care staff say he’s doing well and is a really sweet man. They’ve got him caring for a baby doll and he’s still wanting to get to work on the farm. You know, there’s something in that, something beautiful. He started out his life working alongside his father on their farm. It was always his dream to follow in his father’s footsteps. He never had the dairy farm, but most of his life he farmed. As a little boy, he helped his dad. When he got a little older, after his father passed away, he hired out to work for local farmers. After he married he worked with his father-in-law and eventually on his own. Along the way, he helped my brother get started farming. He kept farming for years. Now, he’s still following that dream in his heart. That, to me, seems to be true love.

I’ll be getting some memory tests while I’m at Mayo. My seizures and my medications both can impact memory. It’s strange to watch my dad from afar and think about what’s happening in my own brain. I suppose maybe my best hope is that if I do travel the same path of dementia that Dad has that I’ll have a nice baby doll and I will have found my dream to pacify my days. Still, I hope never to go that route. A long time ago, I decided I wanted to live to be 106. I don’t why. It just seemed a nice age and like it would give me enough time to do all that I wanted and be ready for the next adventure. It still makes sense to me. I still want 106 with good health and then just to be done. If I can’t do that then I hope I at least have fun.

Well, it feels like time to actually get up and maybe start preparing for the adventures of today. Take good care all!

Stories of a Lifetime

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

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

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

Learning When School Is Closed

So, the schools are closed. For some this is a challenge and it might even mean that learning is lost. For others I suspect it could the best thing that’s happened in 500 years.

I was just thinking this morning about some of my Native friends whose kids and grandkids aren’t in school right now, thinking about where those kids are instead. I realized they’re out at the sugarbush. They’re helping cook food for the family. They’re listening to their grandpa tell stories. Heck, some are even talking with their moms in their Native languages. It made me wonder what will happen to these children?

For over a hundred years Native children were stolen from their families and placed in boarding schools where their language, culture, and traditions were forcibly taken from them. When the boarding school era was winding down the federal government tried another tactic, taking funding from tribes and, in some cases, revoking the recognition of tribes making it impossible to maintain schools equal to that of predominately white areas. Yet, somehow the people survived. A great deal was lost, but much was retained.

If cultures can survive when children are torn away for generations and kept by their captors, what might happen if children can be held close and held with love and told the stories by their families? I can only hope that this illness that has struck the world might help us find the medicine we need.

I suspect the same is true regardless of who we are, Native or non-Native. Our children grow strong when they know their history, when they know who they are. Tell them the stories. Show them the way. The time out of school may be the best time to learn.

The Mayo Experience

It’s been two days now at Mayo. Yesterday, I was at the clinic where I met with doctors, had an MRI, and got blood tests. I have decided I am not a fan of MRI machines, though I did make it through. I am happy to say that I didn’t sneeze while in it too. It was definitely a possibility as I have been hit with a head cold for this visit. I could just imagine sneezing and getting snot all over the inside of the machine and spraying into my face.

It was a tiring day. I was supposed to have a sleep deprived EEG in the afternoon so I’d only slept four hours the night before and those weren’t the most restful. So, I wasn’t at my best. But, it may have helped get me to today. Instead of the EEG yesterday the doctors scheduled me to have a multi-day EEG and video monitoring at the St. Mary’s Hospital.

I walked here early this morning. I tried to get the shuttle, but I wasn’t sure I had called it correctly, so it seemed better to just walk the couple blocks from Neuro Hospitality House. I am glad that I did. It’s good for me to walk and be outside, healthy for the spirit. I got signed in at 7:30 and by about 9 or 9:30 I was all hooked up. Within an hour or two I had a seizure just under a minute. It left me pretty confused. The techs came in immediately and were asking me questions. I couldn’t remember the name of the state where I live, Minnesota. I knew it was near Wisconsin and that it started with an M, but it took a while for me to say it. I couldn’t remember Rochester at all.

I’ve been twitching more throughout the day and pretty tired, but I don’t think I’ve had any more seizures yet. It’s been a relaxing day, just sitting and watching movies and napping. I tried reading right around the time of my seizure, but I couldn’t do it.

Staying in the hospital is weird. It brings back memories. I spent a lot of time in hospitals when I was a kid. My mom had cancer. She was diagnosed when I was six and died when I was twelve. She did a pretty amazing job being a mom from her bed. I celebrated my birthday by her bedside. I think it was my 12th. I still feel her with me as I am taking my turn laying in bed. It still feels like she’s here in my heart and taking care of me, assuring me that it will be okay.

We’ll see where things go from here. I am hoping for more of an update tomorrow.

That Time of Year Again

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

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.