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.

The Changing Mind

When my mother died in 1984, Dad saw the light. He’d been asleep in the chair next to Mom’s hospital bed when she passed on. My sister Jo Ann was sitting with her as she left this place for the next. When Jo Ann woke Dad it took just a moment. In that moment he saw that bright light that some speak of. I’ve always believed that he watched Mom walk on. It was earlier that day that he’d gone to the chapel and changed his prayer. Before that he’d always prayed that Mom’s cancer be healed. That day he accepted that her time was done and prayed that she be at peace.

I’ve often wondered about the connections between the physical and the spiritual worlds. How are we called? How does the connection speak?

Now, my Dad is 91 and his mind is changing. The way he speaks of the world is different. Dad has always seen himself as less intelligent because he didn’t finish school. In today’s educational system, I wonder if he’d been taught to read differently and had a different outcome. Dad grew up, in his early years, speaking Luxembourgish at home and didn’t speak English as his primary language until he was at school. It had to be tough to step in to a learning system and try to learn in a whole new language as a little boy who just wanted to be out on the farm running around and helping his dad. Then his dad left. Grandpa died in August of 1935. It had to be traumatic for Dad. I remember the story. They were out in the field. Grandpa was back on the hay wagon and Dad was driving the horses. Grandpa called out to him “Slow those horses down! You’re killing me back here!” Later that day Grandpa had what seems to have been an unrelated appendices attack. He was taken to the hospital and never returned. Grandpa was Dad’s hero. I wonder how that experience continued to impact who Dad became.

I know that some years later Dad was working on a farm. He skipped work one day. On that day the farmer’s child was playing where they shouldn’t have been and was hit by a truck and killed. Dad spoke about that event with sorrow and guilt. He told us how had he gone to work he would have been in that truck. He always believed that he would have seen the child and they wouldn’t have been struck and killed. There’s nothing to prove that one way or another. It’s just something he carries with him.

I’m thinking about this all as Dad’s mind changes because of some of the things he’s saying. He mentioned several times that he needs to go back to work, that he’s been gone too long. He gets worried about not getting to his job or sometimes he talks about getting back to school.

I find myself wondering if he’s unconsciously planning for his own journey. Is this how he’s preparing to go back to be with those he used to know? It’s a land of confusion. He doesn’t know this world fully anymore, nor does he belong to the next yet.

He’s not the same as he once was, but having this long process of goodbye tells me how gifted we are. Right now his dementia is a largely a gentle confusion. He gets lost and sometimes frightened, but not angry much yet and he generally knows family and friends or if he doesn’t he at least knows that they’re good people and probably someone he did know.

I don’t get to see him much, living a state away. But, he still recognizes me on the phone and other family see him almost every day. Sometimes I am near tears after talking with him when he’s confused or having a hard time with his phone and struggling to hear me. But, I feel so grateful, so proud to be his daughter. He is, to me, the symbol of strength and so wise.

As his mind changes, it seems more words of Luxembourgish may be slipping in again too. He always said he couldn’t speak it, but he could. He’d slip into it with friends. Now, sometimes a word slips in here or there to describe another’s behaviors. I don’t know the language at all, but can get the idea when he speaks of someone who talks too much or something like that.

The mind is interesting place. It is both sad and a great and joyous gift watching Dad’s mind taking him back to his younger days. I’m not sure that this story has gone anywhere, but it needed to be written to help me think things through. Thank you for reading.