Caring for Matt

It’s been at least a decade since I took care of my autistic brother Matt in my house. A few things precipitated this change. Initially I stopped providing weekend respite care for my parents after Matt was violent towards my daughter.

There may have been a few times I took care of Matt and my mom took my kids although it wasn’t much of a break. It was difficult raising 3 little kids without having much for family support. My mom had to take care of Matt. My brothers didn’t live close. My mother-in-law could barely handle raising the one child she did have, my husband. I found myself bitter towards parents that could dump their kids off and get away every now and then.

But the biggest change for me as a care provider for Matt was when my parents placed him in a group home. I was no longer needed to help out, until now that is. Matt’s group home was closed since the virus started. It is now open but if he goes back this month, he is not allowed to leave.

Originally my mom wanted me to stop by the house every night to make sure Matt was okay under my dad’s care. I told her it would be easier for me to have him stay with us for almost a week which is longer than he has ever stayed with me before.

I told my kids that Matt was coming to stay here for awhile but they wouldn’t have to adjust their lives around him. If it didn’t work out, Matt could always go home and I could check in on him everyday. One of my kids called me selfish for saying that our world didn’t revolve around Matt.

As a child my whole life revolved around Matt and if I had to tiptoe around him in my own house it wasn’t going to work. No other family member is willing to step up and offer to take him in for almost a week. That should count for something.

The whole experience went better than I expected. Although Matt is no longer violent, caring for him is not easy. He is on a special diet. I needed to make separate meals for him. At certain times of the day his medicine needs to be ground up and put into applesauce. He doesn’t have table manners. He farts and belches at the table. Sometimes he gags on his food especially if you bring a napkin near him.

He has poor hygiene. He is a messy eater and soils his clothes. He often wears his clothes inside out and/or backwards. He doesn’t change his clothes often. He refused to shower which he would need assistance doing. He wouldn’t ask for help after using the bathroom and made a mess on the floor. I had to floss his teeth and big clumps of food came out of his mouth which made me feel nauseous. He made a total mess out of the bathroom he used. In all honesty, it did trigger feelings of hopelessness in me.

Not only are my parents hoarders, but they rarely cleaned the house. Cleaning up after Matt would be like fixing up a house before you knew a tornado was going to hit. I didn’t even feel completely relieved that everything was clean after I cleaned once he left. I can’t always clean up messy feelings inside by cleaning the filth in my house.

I felt guilty when I wasn’t spending every minute taking care of him. Most of the time he would sit on the couch and stare off into space when I wasn’t interacting with him. I felt the ingrained need to please him because his life is so sad.

I found his favorite movies and put them on for him to watch. We went on walks together. I talked to him about the shared good memories from childhood. I talked about places and loved ones that long since passed. I talked to him about the things only a sibling would know. All these things helped ease his separation anxiety from my mom. I think things went really well, as good as I could have hoped for.

As a sibling, I worry a lot about what life will be like for Matt when my mom is no longer here. My parents are getting old. It is comforting to know that maybe he will adjust with my help. Matt will probably never be easy to care for but I think he would do well with me. I was impressed with how well he adapted to his new environment. It felt good to be able to help my mom out. In some ways it was nostalgic and strangely comforting for me as well.

 

Gratitude week 23

  1. I am finally feeling like I am making progress on my self-improvement project.
  2. Summer weather!!
  3. I was able to get out on the sailboat for the first time this season.
  4. Things went better than I expected taking care of my autistic brother Matt. He adapted to our family well. More on this later.
  5. Taking care of my brother allowed my mom to get away with her sisters for a few days. It felt good to be able to give her a break. She decided she didn’t want to let fear control her life.
  6. I’m grateful our best friends had a really good experience with the foreign exchange student our daughter talked them into hosting. It was sad to say farewell to him over the weekend, but I’m grateful for the experience they had and we have had with our foreign exchange students. They are all awesome which says a lot since I’ve heard quite a few horror stories.
  7. I’m grateful that Paul’s new business is doing better than he thought it would.
  8. I’m grateful that for the first time I had a good experience singing in church. It has been difficult at times singing about the love I feel or the trust I have in God when I am struggling with that. Not only that, but I was able to sing relatively anxiety free. There were times that family issues made me feel panic or the thought of having to run to the bathroom in the middle of the service was terrifying.
  9. I’m grateful to have a clean house today.
  10. I’m grateful for the times I feel like everything is normal. That’s saying a lot because the last few months have been far from normal in so many ways.

Trips to the dump

I thought of my grandpa the other day as a baby bee brushed against my fingers.

Things fell apart the summer I turned 13. My grandpa fell trying to get out of bed in the morning and spent the summer in the hospital trying to walk again. It was the year after my brother Matt spent the summer in the hospital. My grandpa wasn’t the same after that. He was diagnosed with a rare autoimmune disease. Before he came home a wheelchair ramp was added and the bathroom was remodeled to accommodate a wheelchair. He never walked again.

Maybe that was the year things got harder for me. My grandma was one of Matt’s biggest caregivers and now she needed to take care of my grandpa. That put a lot of pressure on me and I stopped my social life before it really even started to help take care of my brother.

But before grandpa got sick, we had some good times together. He used to take me fishing. I must have talked his ear off because he told me I was scaring the fish away with my incessant chatter. Many years later I found out this wasn’t true.

We also had our occasional Saturday morning trips to the dump. Grandpa would back his truck into our driveway to pick up our garbage which wasn’t a lot since we had a burning barrel and a compost pile. My parents are hoarders, so only true garbage was thrown away like used cat litter. Although sometimes that was used in the winter on the ice. Everything had a use or purpose even when it didn’t. Some rooms of the house and even the garage were dedicated junk piles. It was one of the zillion reasons I didn’t have friends over often. Apparently most people seem to find hoarding off-putting.

But anyway, the trips to the dump with my grandpa were wonderful. He was friends with the dump man who was also a hoarder. I swear the guy would go through everyone’s garbage to find treasures to take home. There were bags of garbage everywhere, some were burning in a big pit.

The dump was sandy and smoky. It wasn’t a good place to be on a windy day. But when there wasn’t wind, there were bees. The dump man said I didn’t need to be afraid of the bees. He told me to put out my finger and the little bees would land on it. I did and they tickled my finger. Since then I’ve never been afraid of bees or wasps and they have never hurt me. Of all the things I am afraid of, I’m not generally afraid of animals. My dad was afraid of spiders so he never used them to terrify me. Win, win I guess.

My grandpa and I made several trips to the dump because we were looking for the perfect bike. The dump man started setting aside the bikes for us that others threw away. Then one day we found the perfect piece of junk. Grandpa lovingly painted it purple, my favorite color. He put on a new chain, new tires, and a new sparkly purple banana seat.

One day I outgrew the little one speed bike. My last birthday before grandpa got sick, he took me to the store to buy a bike kit so he could put a ten speed together for me. It meant a lot because he bought it new and also because he took me to the store to buy it. That was the first and last time I remember my grandpa going inside a public place. He refused to leave the house after he was wheelchair bound. We had to fight with him to go to the doctor when he needed to go. He didn’t even go to my wedding. He would even panic if grandma was gone for more than an hour or two.

So when I saw the little bee buzz by the other day, I put out my finger to say hello. It instantly took me back to the trips to the dump. How crazy to have the trips to the dump be one of my fondest childhood memories. I am thankful for that though. My younger brothers barely remember the good times with grandpa before he was in a wheelchair.

 

 

In health

Yesterday I had my first Craniosacral therapy appointment after the start of the pandemic followed by an appointment with my therapist. Afterwards, I felt great. I finally feel like I am making some headway with my healing process.

Fixing myself has been hard because I’ve been broken so long I got used to the cracks. It’s been an adjustment. It’s created some problems I’ve never guessed it would. Now that I am healing I’m starting to notice the brokenness around me more. For example, I find myself more critical of my husband because I feel like I am in a healthier place than he is. Before he was always the healthier one.

Since I started seeing the therapist a year and a half ago, I’ve gone through several crises. My therapist wants me to focus on letting go of the original trauma that I hold locked inside my body and mind. She thinks that once I do this all of the other stressors will flow through. I liken it to Tetris. If you clear out the bottom rows before everything starts piling up, it will be easier for everything else to flow through.

My therapist told me that with three teenagers in my house life realistically won’t be stress free anytime soon. What she says is true. Teenagers are stressful even when they aren’t trying to be. For example, our foreign exchange student Estelle wants to join in the protesting. I told her that she couldn’t because I couldn’t guarantee that it would be peaceful. I am in charge of someone else’s child and I want to feel reasonably sure that the activities she is involved in are safe.

Then Estelle said she wanted to run a mile every hour for 24 hours to raise money instead of protesting. Her idea was that she was going to run alone on country roads by herself day and night. She was rather upset when I said no to that idea too. Then she asked if she could run laps around the house at night and I told her it would be perfectly fine.

I think Estelle will be frightened running around the house at night. I took my brother Matt for a walk today and we saw 4 deer. We saw the cutest baby fawn. My autistic brother Matt is staying with us for a couple days. My mom is going up north to visit with her sisters for a couple days. I’m proud of her for not living her life in fear.

This means that I will be helping Matt with daily living. I will be fixing his meals separate from ours since he is on a special diet. I will have to help him shower, clean up himself after going to the bathroom, floss his teeth, and give him his medication. He is quite used to getting his way so I want to see how he will handle being with my family for several days. Someday when my parents are gone I will probably take him in once a month to stay with me if this works out.

If it doesn’t work out, I will take him back home to stay with my dad. I will just run over every day to check on him. My husband thinks it’s funny that my mom trusts me more than my dad to take care of my brother. But he doesn’t understand that is always the way it was even when I was a child myself. I hope this experience is not triggering. But I am mother henning right now which isn’t entirely unsatisfying since it is the last thing my teenagers want.

I am in a good place right now and hopefully I can remain here for awhile.

Gratitude week 22

  1. It felt good to go in for a haircut this past week. Funny story, when I got to my appointment I had a fever from sitting outside in my hot car. I was a little afraid she would turn me away. By the end of the appointment, I looked great and my temp was below normal.
  2. We finished painting the shed. I wasn’t sure it was going to happen at first because it seemed like a wild animal was living inside. Every time I got close it started clawing at the walls. But a few days later it was gone. Estelle, Arabella, and I started painting together. Then Estelle and Arabella started fighting. Estelle will be leaving soon. I will miss her a lot because she became like a daughter to me, but I will not miss the fighting. The shed will be a visual reminder that everything happens in its season.
  3. The month of May is over. I’m saddened by the state of this country and have to hope things will get better. Maybe this month…
  4. We were able to go back to church for the first time since the pandemic this past Sunday.
  5. The books I ordered came in the mail. I paged through Colitis for Dummies and learned more than what my doctor told me already. Apparently I am the 10-15% of the colitis population that has an undetermined cause. It could be ulcerative colitis or Crohn’s, but they really don’t know. I wish my doctor would’ve explained that to me.
  6. This past week I celebrated my 5th blogging anniversary. I’m still here!
  7. Today is the 2nd anniversary of moving into our house. I am thankful to be living in a house that I don’t mind being quarantined in.
  8. I am grateful to have a husband that loves to cook and is good at it.
  9. I’m grateful that my mouse issue was solved with replacing the batteries.
  10. I am grateful to be able to do a little planning and finally put some new things on my calendar after everything else has been crossed out. The funny thing as I was looking ahead at my wall calendar I put the wording on December’s photo as best year ever. Note to self: never put the words best year ever on a wall calendar in December…maybe in January.

The raging fire burns

I left shortly after I put my clothes back on. I was ready for bed. I thought I would check Facebook one last time as I waited for Paul to come back home. Facebook, that is where I learned that our previous family business was on fire. Paul arrived home after 10 PM tired without even eating yet. I left without him in great urgency as if my presence would stop the raging fire from burning.

Inside that building is where my family members lived on in my memory. My great-grandparents built the business 100 years before. Like a family farm, all of the family members lived next door or down the road. In my mind they worked together in a steady hum like a colony of bees. I don’t remember any conflict just hard work.

My grandpa and uncle Harold fixed cars. There were several other mechanics too that they treated like family. I remember Harold laughing and sharing stories with customers in his quiet way. My brothers and I were always running through the garage as kids only stopping to buy a bottle of soda from the machine for 25 cents. It was a magical place, a place where broken things got fixed. I loved the smell of tires and even the scent of gasoline because it only brings back good memories.

My aunt Grace did the bookkeeping with the help of my grandma. I can still see them pouring over the paper files and counting money in the antique cash register. It’s the one place I remember them all being together busy and productive.

I was pouring over these thoughts as I got closer to the scene. Roads were blocked, sirens blared and I was the only one from my family that was there. My parents were up north opening the cabin for the season. My brothers and I should’ve been there but even that is changing because of the conflict with my dad. The times at the cabin together as a family might have come to an end too. After not speaking to my dad for 5 months, I called him late that night to tell him the old family business was on fire.

I stood on the side street for over an hour and a half watching the orange glow as fire trucks steadily poured in and out. I talked to the only person watching with me, a stranger. At 1 AM, I told the stranger I was going home which wasn’t exactly true unless you consider home my parents house. I had to go to the bathroom really bad by this point.

My parents locked their house before leaving but they always have a spare key in the closet if you can find it. My parents could be considered hoarders. Their closet had 4 levels of tightly packed shelves of odds and ends. I found two keys, but they didn’t fit. I searched my purse hoping that I still had a spare but the keys I had didn’t fit so I left them. Finally I found the right key in the closest and let myself in.

I wasn’t ready to leave yet. I had to get closer to the flames. It was drawing me in like a June bug. I left my car in my parents driveway and decided to take the trail into town the back way. It was very dark and I felt anxious running down the road and trail by myself in the middle of the night. But I shown no light since I didn’t want to be seen. I was a little afraid of bypassing the police cars and sneaking in the back way. I was afraid of night animals but I figured the fire probably already scared them away. I ran without seeing what was ahead of me fighting my fear.

I couldn’t see the fire any better than before. There were trees in the way. I didn’t want to get any closer because there were many people there fighting the fire. There was another man leaving the area from the back way. I was afraid because I was alone and vulnerable, but the man meant me no harm.

I got home late that night. After a couple hours of sleep I awoke and went back for more. My parents came home early the following morning and found themselves locked out of the house. In my panic, I left the house keys in the bathroom and my own set outside the door. When I’m really stressed my mind stops processing the details which I so obsess over in normal times. I find it bizarre that the strongest part of my brain just quits working.

The building may have burned to the ground, but the memories of my family working together will always live on in my mind.

img_1495

 

The first fire

I never heard my mom cry like that before. It was the deep howling sorrow that was saved for behind closed doors. I could almost peak out the window she was staring out of if I stood on my tiptoes. The night sky a glowing orange haze in a hue I never saw outside before. Together we watched her childhood home burn down.

I went with my mom once to see her old house the year before when I was 3. I’m not sure how I remember it. Strong emotions of my mother typically elicited sparks of memories in me. There was a long dark inside staircase that went upstairs to the main floor of the house. There was a bright average sized kitchen with a window above the sink that I could imagine her mother standing at with her back to me. I never saw my grandmother’s face before but I was told my mother looked just like her.

We had to walk up one step to go into the living room from the kitchen. I found that rather strange. I saw the bedroom my mom shared with her sister Jan. It looked as small as a closet. I imagined my mother playing in that room with her one doll. Mom always said that Aunt Jan was messy and my mom was the clean one. They seemed to have switched roles. Aunt Jan never entertains because people get her house dirty. My mom never has people over because she is embarrassed by her clutter and hoarding.

I wonder now if she imagined her mother was still alive inside of that house cooking supper, washing dishes, or just living a normal life every time she used to walk by. That was the only house she remembered her mother living in. Her mother died and her family moved far away, but she remained in that small town.

My mom more often than not on nice days took us for walks by her old childhood home. Every day the memory of her mother was still alive inside of that house. I’m sure she thought of that when she took us on walks to visit her husband’s mother.

Until one day the house burned down and even those memories faded away. She couldn’t imagine her mother happy inside the house when the house was no longer there. It was almost like she lost her mother again.

Gratitude week 21

  1.  Just like that it went from winter to summer in Wisconsin. My favorite season is finally here!! This week we finally got green leaves on our trees. We took the cover off our pool.
  2.  I trimmed down the list of people I’m following. I no longer follow people simply because they follow me like I used to. I’m following blogs I am interested in. The whole process was very glitchy so it is possible I may have accidentally unfollowed someone. I also axed some people that I genuinely liked because they haven’t blogged in several months or years. It felt good like I was cleaning. A big shout out to long time bloggers. I am grateful that you stuck it out.
  3.  Coronavirus be damned, I hugged and cried with a complete stranger. As I mentioned yesterday, over the weekend a historical building once owned by my family burned down. I cried with the new owner who felt horrible because their intent was to restore the building and preserve its history. Also, because of it, I was able to see and hug my mom which with her terror over the virus I questioned if it would happen again anytime soon. I am grateful that we don’t have to deal with the devastation of a fire. The destruction and loss was overwhelming. I can’t imagine what they will have to go through. I am also grateful that no one was injured or died as a result of the fire.
  4.  Paul got his first customer in his new business venture.
  5.  I am slowly starting to feel a little better. By no means close to 100%, but if I had to live this way the rest of my life I could.
  6.  On this Memorial Day, I am thankful for our wonderful veterans who sacrificed all.
  7.  I am grateful for the ability to survive traumatic experiences.
  8.  I am thankful for Paul. Even though things have been difficult lately, I know he has my back and I his.
  9.  Taking the winter quilt off the bed, turning off the heat, and opening the windows.
  10.  Estelle and I bought some orangish brown paint for the shed in the backyard. It is nice to have a project we can do together and something to remember her by once she goes home when I look at it.

What is love?

By the end of last year, my life started to crumble apart. I was dealing with some serious issues with my dad. I reached out to God. Please God, if you are there, show me that you love me. Trust hasn’t always been my strong suit. But what I was asking for didn’t seem like much.

In February, someone I am very close to attempted suicide. Do you know the pain of feeling that one morning you might wake up and your loved one is no longer there? It’s pure hell. I stopped sleeping and battled insomnia for over a month with nightmares. Maybe if I was always vigilant, maybe if I didn’t sleep, than nothing bad would happen come morning.

In March, someone I knew decided to quit battling kidney disease. He died and we weren’t allowed to go to his funeral because this new virus was sweeping the nation. Later that month, we were planning on driving down to Florida to show our 2 foreign exchange students our country. The week we were leaving Disney World closed and we had to cancel our trip.

It was not the only trip that was cancelled. My mom, daughter Arabella, and I were planning on going on a school related music trip to Europe this summer. The company cancelled the trip and kept $1900 per person to line their pockets. The money they kept for all three of us was like one person went on the trip that didn’t.

We decided that our daughter Arabella could no longer be a foreign exchange student next year not only from coronavirus. When we sold our company, we took some of the profit as private equity stock in their business. We were supposed to get enough money to live on for the next couple of years the first quarter of 2020. We were going to use this to jump start a new business. It never happened and now we don’t know if and when it will happen.

Our financial security is gone. With the virus and the economy, it is a struggle to start a new business.

The schools shut down. Prom was cancelled. The track season that just started was cancelled. The musical postponed. My college daughter’s recital and later graduation was cancelled. The gym closed. I struggled to get a good workout because winter held on to the middle of May.

In April, one of our foreign exchange students decided to go home. It was during that time that I started taking an antibiotic prescribed by the wellness clinic which says a lot since they mainly treat with herbs and supplements. Ten days after the last dose, my body crashed. I was sick running to the bathroom 20 to 30 times a day, day and night for 10 days. I thought I was going to die. I pleaded with God to let me die. After being poked and prodded by several doctors and a colonoscopy later, I was diagnosed with colitis and sent on my way.

After the flare up, I was left with a hollow shell of a body. I am weak. I had to give up running. I am still sick. I can’t eat. I watch as my family members eat my favorite foods. In the last week alone I lost almost 10 pounds.

Meanwhile my daughter Arabella is packing back on all of the weight she worked so hard to lose. She went from an honor student pre-coronavirus to barely passing. I’m not sure she is going to pass all of her classes. I can’t blame her for feeling depressed since everything she was looking forward to is now gone.

Then I heard the news that the family business my great-grandparents built over 100 years ago burned to the ground. Although no longer owned by my family, a lot of my good childhood memories are tied to the building and my family that worked in it who are also gone. It was painful to see something they lovingly built destroyed.

There are things that happened this past year that I can’t even talk about yet. Somethings I will probably never share. It’s not even June yet. I’m not even sure if there is a God anymore. But if there is, right now I feel pretty certain that he doesn’t give two hoots about me. Or is God just taking the things I have away to show me what I already have been given?

What is love? Is it giving or taking away? Or is a mixture of both necessary for growth like sunshine and rain?

Okay, okay enough complaining for today. Tomorrow gratitude…

In sickness and in health

I wonder if wedding vows still espouse the traditional in sickness and in health. It’s been awhile since I went to a wedding, my own being almost 23 years ago. When I think of someone getting married, I think about young and healthy couples who probably don’t think that their love could battle health issues that might mess up their future dreams.

And the two shall become one. But what happens if one is sick? I’ve been thinking about that a lot lately since I haven’t been well.

Currently I am drinking 15 liquid elixir shots and popping 21 pills a day of supplements. I’m getting sick of it. I still don’t feel well. I am now trying to eat two small meals a day. My stomach hurts if I get too hungry and it pretty much always hurts after I eat. It’s a delicate dance.

Over the weekend I ate only bone broth. It is disgusting. I watched as my family ate pizza, hamburgers, birthday cake, chips with nacho cheese, and ice cream. It was hard to watch especially since my bone broth didn’t make me feel much better. I got very weak. The last thing I wanted to do was clean the kitchen up after they feasted which is a chore that mainly I do. Thankfully I didn’t have to.

Sometimes they feel bad for me. I get barraged everyday by well meaning loved ones with an are you feeling better yet. Sometimes they feel guilty for eating my favorite foods which I cannot have in front of me. Sometimes they care more about themselves.

Yesterday my husband went for a run and was apologetic to me. I didn’t enjoy running, I’m only doing it for my health. I feel horrible they are apologizing to me for doing the things they normally do. It makes me feel bad. But their normal behaviors are tormenting me because I can’t do it anymore. I think it is wrong for me to be upset about that. But it does upset me.

Oh, and another thing since I’m being totally honest here. It is hard to live with three teenagers in the house. The other day my daughter Arabella was eating cookie dough for breakfast at noon. My husband confronted her telling her she needed to eat something healthy. It was the right thing for him to do. Since then she has been angry at us and is once again slipping behind on her homework. I can foresee a lot of problems and confrontation with her in the near future.

Stress tends to make me feel worse. I have zero tolerance for stress right now which sucks because I see no end to that in sight.

Other than not feeling healthy, my mental health has been a struggle too. I used to cope with anxiety by running and keeping busy. Now I sit around and worry. I’m depressed because I don’t feel like I am accomplishing much. My husband gets irritated sometimes that he has to pull more of the weight since I’ve been sick. I don’t like it anymore than he does. It’s not like I’m trying to deliberately get out of doing my fair share. I’ve never been much of a slacker. No one in this house understands what it feels like.

I’ve been depressed because I don’t want to spend the rest of my life feeling this way. Now I think I understand why in sickness and in health are a part of the wedding vows. Will I still be loved if I am no longer the person I used to be?

For better or for worse, for richer and poorer, in sickness and in health…If you stay with someone long enough, you pretty much see it all.