Continuing to hang out here at Mayo with wires sticking out of my head, waiting for some good old fashioned seizure energy to come coursing through. I think I might have had a couple seconds this morning, but I’ve not heard confirmation of that. I … Continue reading Endings and Beginnings
I made it through the detox. It may have helped that I think I had a seizure last week. It left me exhausted and without any appetite. That made it much easier to limit what I was eating. For several days I had nothing but berries with coconut milk and maple syrup for some meals and black beans and cauliflower rice for others. By the end of a ten day detox I’d lost about nine pounds. It wasn’t what I wanted to do. It’s okay that I lost the weight, but it was a lot faster and harder on my body than I wanted. I was tempted to stop and not do the AIP, but it seems a waste to not at least give it a try. So, the plan at this point is to move forward with the AIP for the upcoming month to see what happens.
I’m not going to be too strict. I’m focusing on the big picture pieces; keeping out dairy, eggs, grains, nightshades, etc. I’m not going to put energy limiting my fruits. The goal is just to give my gut a break. I am hoping that I’ll rebuild my vegetable habits. I am hoping that rebuilding my vegetable consumption habits and giving my gut a break will help me get back to feeling healthy.
Over the next month I hope to pay attention to my body and just see what happens to me.
Okay, so it’s been a few days since my last post. I got sick. So far it seems, I am very happy to say, that I haven’t gotten the coronavirus. I am still waiting for results though. What I did get was a reaction to my seizure medication and a recurrence of my DRESS Syndrome.
It’s a fascinating time to be figuring out a minimally known syndrome like DRESS. It’s basically a nasty allergic reaction to a medication that causes my body to start fighting itself and could start doing some major damage to my internal organs. It showed up a couple months ago and reappeared last week. Hopefully, it will be cleared up in the next few weeks to never return again.
Here’s what makes it interesting to me. It reminds me that I really don’t understand what sick means or maybe more accurately I don’t identify with it in some way. I feel it and I am frustrated by it, but I look at it and don’t quite recognize it. People remind that I’ll make it through, that everything will be okay and I think, “Well, obviously. This is just a bump. It isn’t something insurmountable.”
It’s a strange thing. I’ve been given these things, these gifts in some way, epilepsy and DRESS to help me look at the world and come to know myself. There’s a good chance that for the rest of my life I’ll be taking medication to try to prevent my brain from doing internal lightning strikes while using medication that may suddenly push my body into attacking itself. It’s a good chance, I suppose, to let go of that need for control, to instead reach into that deeper being to find trust and balance, to know that I’ll keep breathing until it’s time for me to be done and with any luck that will be a long way down the road.
It does have me looking at this pandemic from an interesting personal light. The medication that I’m taking to clear up the DRESS Syndrome will, for the time-being, lessen my ability to ward off viruses. It doesn’t seem a great time to do that. But, if I don’t my body could beat itself up pretty badly and I’d like to keep all my internal organs in good shape.
So, I am thankful right now for the ability to work from home, the people who’ve helped me with errands and getting my dog out so I don’t need to go out very often, the masks my sister made for me, and for all the people who wear masks, maintain social distance, and do all those other kindnesses keeping others in mind knowing that even if they aren’t sick they could be carrying the illness and could impact someone who might not be able to fight it off as well. Some days I am really frustrated with my health struggles of the past few months, but mostly I am grateful for the gifts I have been given and the life I have the good fortune to have.
I hope that each of you reading this piece can find your gifts and good fortunes and that you are well and finding joy. Take good care.
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.
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.
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
I’ve disappeared from the blog-o-sphere for past few weeks. In fact, I’ve disappeared from quite a bit of life but with good reason. You see, about three weeks ago I was laying in bed watching Netflix when suddenly I had a broken ankle. Seriously, that is the truth no matter how strange it sounds. It’s not clear how my ankle was broken, but as I was diagnosed with epilepsy about six years ago, there’s a good chance I had a seizure. I don’t have seizures often, maybe two or three a year. Usually they just leave me with a headache and a sore tongue, but this one didn’t give me a headache at all, didn’t really hurt my tongue either, but it impacted me in other ways. That is, of course, if it was a seizure. There’s still the possibility that it was my dog jumping up on the bed and landing on me. My memory suggests that may have been what happened. My dog’s size, about 35 lbs, makes it pretty impressive that he could cause that kind of damage.
It’s been an interesting journey. The injury happened Monday night. When the pain wasn’t gone and there was some swelling, I decided to go into urgent care on Tuesday. The staff were pretty amazed that I was walking on a broken ankle. I was a bit surprised to learn it was actually broken.
They gave me a cool moon boot and crutches and sent me home to rest. I slept for about a week. It is amazing how much energy it takes to heal. That first week really sleeping was almost all I did. By week two the swelling was down enough that it was time for surgery. I thought with just a block of anesthetic behind my knee that I might get to experience the operation in a conscious state. I didn’t. I slept. Then I spent the night in the hospital so they might monitor for seizure activity. There was none. I did learn that I do not like percocet. Heavy duty painkillers are horrible things. I took it once and refused it thereafter. I really didn’t have any significant pain. At that point, I actually couldn’t feel my foot at all yet so it made no sense to me how the hospital staff kept trying to push painkillers that set my motion sickness into high gear. I couldn’t move without feeling nauseous.
After a few more days at home with my foot up I returned to the doctor and got the okay to return to work with my walker. That’s been the true gift. Before this accident I walked to work, and most everywhere else, every day. In my little town of about 5,000 people, I would typically put on one to five miles a day just doing what I needed to do. Right now, walking a block with my walker is significant exercise. My ankle is healing fast and I’m hoping to get back to a more normal routine in the next month or two, but this is where I am right now.
I find myself thinking a lot of some old friends who taught me about accessibility from their wheelchairs. I am especially thinking of Mark. He was a volunteer when I worked for the Grassroots Leadership College. He had severe physical limitations. I remember him apologizing once when he was late for his shift. He told us how when it was raining the bus drivers would often pass him by. They didn’t want to get wet helping him board the bus. That was just one little example of how the world treated his disability. There were too many others. Eventually, he had enough. He rolled himself down to the lake, propelled his body out of his chair, and landed face down in the water and ended his time being discriminated against.
My experience is nothing like his, but it has been a gift to look at accessibility issues and at how I see myself in this world of varying abilities.
First, I kind of have to laugh at myself. I found myself thinking the other day, as I was trying to open a heavy door without losing my balance, “this would really suck if I really had a disability!” Okay, now I am traveling around on eight screws and a plate, using a moon boot and a walker, because of a broken ankle that was quite likely caused by a seizure. Some might say I have a disability. I don’t really identify with that. It doesn’t make much sense to me. So, there is that, the whole question of what is it to have a disability in the first place? Who gets to decide who has a disability? Why do they have that power?
Then, I have to say “god bless the elders who do this in snow or on hills!” I live in Minnesota so I am thankful that my injury didn’t happen just a few weeks later. Did you know that if you hit a crack in the sidewalk your walker might veer off the wrong direction? Or did you realize that walkers really don’t have very good brakes and can start speeding along on even the slightest incline? I have the gift of being an in shape and strong middle aged woman. I can handle these challenges pretty easily. But, it’s tough for me to imagine what it’s like to use a walker if you don’t have the upper body strength or the sense of balance.
I’ve fallen a couple of times since I broke my ankle. I’ve been able to lean into my fall and land gently. Still, I think to myself what more damage could have done to the already broken spot? Or, thinking again of our elders, I wonder about my hips. It seems that for too many the broken hip is the kiss of death. I have two small steps going into my house. Normally, I barely notice them. Now I realize that they could kill someone.
I’m learning the little things about accessibility from a different perspective and it’s good for me, good for us, to know. One of my first lessons was on my first day back to work. I had to go to the HR office to drop off some files about the incident. HR is on the second floor of Behmler Hall. I’ve worked on campus two years, but don’t go to Behmler all that much. I knew there was an elevator, but I wasn’t sure where.
The bus dropped me off not far from the front entries to the building. It was then I really noticed that both of the main entries have stairs. I had to go down the hill alongside the building to come in a back door to find the elevator. Going down the hill I was thanking my lucky stars that there wasn’t any ice yet and wondering how people make that trek in winter. I also thought about how I’ve been on campus for two years and I had to search to find my way. I wondered about people coming to campus for the first time. How can you feel welcomed if you can’t come in the door?
Thinking of doors, I never really realized before how heavy doors can be. I also never really noticed how often there are buttons on exterior doors to open them, but once you’re in a building interior doors often don’t have that access tool. The building that I work in has, what I had always thought were accessible restrooms. They’re big with room to turn a wheelchair, the sink, soap, and hand dryers at good height. I think there’s even a bar to help getting on and off the toilet. But, those doors are heavy as heck when you’re balancing on one leg and using a wheeled device for mobility.
My experience thus far has been a simple one and there hasn’t been much that I can’t find a way around. I have been given the gift of hearing stories though. I know that there are people on campus who’ve not taken on roles that would both benefit them professionally and benefit the campus community because of the challenges of access in some of our campus buildings.
Sometimes people fight for access and sometimes they decide to just take a different route in life because we can’t all be fighters all the time. Sometimes we just need to live.
I encourage my friends to notice the steps, think about the weight of the door, look at where the furniture is placed, acknowledge the shelves and where supplies are kept. Note these things. Decide for yourself what is acceptable and change what is not.
My stomach is still in recovery mode so breakfast and dinner were small and healthy.
I decided that Sunday is my day to go out to eat this week. It fit well with having been low on calories the past two days (down 3 lbs) and not interested much in many foods with my stomach still being out of sorts. So, lunch was pizza. It was okay and I was okay with just some raw veggies and hummus and a bit of cottage cheese for dinner too. I don’t think I’ll need any more today. I hope my stomach is back to normal tomorrow.
It is a help though that I happened to get sick right as I decided to stop eating out again. It gave me a reason to go enjoy myself and now I can enjoy the tasty and healthy things that I picked up at the grocery store on the way home and maybe try out some new recipes.
I suspect it’s simply part of the reality of being middle-aged, my sickness. It happens periodically, though not monthly, and lasts about a week. You’d think there was a better way of being female than having hormonal changes to deal with so much of your life. Ah well. It is life and many have these changes so much worse than me. I remain hopeful that continuing to improve my diet will improve this piece of my life too as will a bit more aging. There are benefits to aging after all.
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.
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.