The day after the police came

The day after the police came was the large extended family Christmas party. We showed up a little late since we were having vehicle trouble. In fact, Paul dropped us off at the party while he tried to figure out what was wrong with his truck.

When I walked in I saw my mom hugging a relative and crying. I was looking for signs that she knew something was up with my dad. Crying at a family Christmas party was not outside of the norm. It happened so often as a kid that relatives prompted me to be a good girl and take care of my mother.

My dad didn’t show up to the Christmas party. That wasn’t out of the norm either. He didn’t show up for Thanksgiving at my house. He didn’t really take an interest in family gatherings. Sometimes he stayed home with Matt so he would have a good excuse not to go. He couldn’t use Matt as an excuse anymore because Matt was there and no longer violent thanks to anti-psychotic medication.

I wasn’t feeling very festive last year and really didn’t want to go. But it was important to keep up the appearance as if everything was normal. This was not unusual for me either. Trying to muster up some fake smiles while my life was falling apart. Yeah, just found out my dad is a pedophile which triggered traumatic memories but hey life is great because it is the Christmas season. I’m good, how are you?

On a quest to find vehicle answers, Paul’s truck broke down and we had to have the vehicle towed to a garage. Perhaps this could be my excuse for the forced smiles. Yeah, I’m worried about something else.

Something seemed a little off with my mom. She said she needed to talk to me about something important. Did she know?

We ended up getting a ride home from some relatives that lived near us. I tried calling my mom later but she didn’t answer. She called me back when she got home but didn’t talk about anything important. What was going on?

The day the police came

The day the police came was a day like today, a Friday afternoon in early December. It was the opening night for the local community theater show that my daughter Arabella and our foreign exchange student Clara were performing in. The following day was the extended family Christmas party.

The original plan was that my brother Luke was going to be coming home to visit my parents with his family. They were going to see the show and go to the Christmas party. But thankfully my brother cancelled those plans after he was diagnosed with kidney disease a couple weeks before. The doctor told him he needed to try to take it easy and cut back on some of the stress in his life. He decided to stay home instead. Otherwise he might have showed up as the police arrived.

The police knocked on the door asking for my dad. My mom said he couldn’t come to the door because he had a hard time getting around. Several officers came in to talk to my dad, several more to talk to my mom, and another to search my parents house.

I thought my dad was going to be arrested when the police came. Instead they took all the computers in the house. They also went through my mom’s ipad and phone which were as expected clean.

My brother Matt was home for the weekend too. He wondered why the police were at their house. My mom told him that they were checking to make sure the computers were safe. Surprisingly, the answer seemed to placate Matt. He didn’t seem to notice that our mom was crying. He wasn’t shocked or angry. He somehow believed that several squad cars can show up at someone’s house just to make sure everything was safe. Life went on as normal for him.

That night my mom attended the show. My best friend Cindy and her family took my brother Luke’s tickets. My mom carried on as usual. I acted like everything was fine as well. We rivaled the community theater performance.

I didn’t know that the police arrived at their house until a couple days later.

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.

Isolating fears

I wish life was back to normal. Or perhaps I should say I wish I could take my favorite things from my old life and mix it with the best things of this new world to form some sort of utopian society.

Since this whole thing started my mom has lived in great fear. She is so terrified that I don’t think she will leave the house if it means being around other people after the safer at home order is over in two weeks. I didn’t say anything up until this point but I might have to. I figured how can it hurt her if she wants to stay at home with my dad and autistic brother.

Now she is talking about getting a mask with a filter in it to wear under her cloth mask. She found some gloves to wear. This is only if she has to leave the house. Other people have been buying groceries. I’m wondering now if locking herself away is only temporary.

She does leave the house to go on walks with my brother Matt. The other day I was on the phone with her while they were out walking. She saw some kids on the path and freaked out. They quickly walked in the opposite direction in sheer panic.

It took me back to when I was a kid. My brother heard voices that told him to attack little girls. There was a period of 3 years where my brothers and I were homeschooled because Matt was psychotic. We avoided public places. If we were out and little kids would show up, we had to quickly pack up and head out. Nothing was wrong but it would only take a second for Matt to attack someone. Thankfully he is medicated now.

My grandpa had a tree nursery next to our house. Sometimes customers would show up looking at trees. We always had to keep on the lookout. If a potential customer showed up with little girls, someone had to call grandpa and then run out to meet them before they came to our house. Someone else had to make sure that Matt did not see the children outside. We had to be hyper-vigilant and work as a team to make sure no one got hurt.

Now I see the same type of paranoia in my mom. The children are potential threats. Even if they seem healthy they could be carrying a potentially deadly virus. Even if Matt seemed fine, in a matter of seconds he could potentially hurt someone. Even if it remains unseen, the threat is very real.

I see my mom very frightened and almost in a flashback of the other time we kept in isolation. I see the parallels of the fear and isolation.

I don’t think it is good for my mom’s mental health to stay in isolation much longer. My dad is very difficult to live with and needs care along with my brother.

I think my mom is going to stay in fear and isolation for a long time, longer than it is safer at home. My husband thinks she will stay in isolation until a vaccine is developed. Like my mom is going to trust a vaccine that is put out in record time. I probably wouldn’t even trust that.

I don’t want my mom to spend the last few years of her life not living out of fear. It’s hard to see her so afraid. I’m going to have to say something if it continues much longer.

purpose

What is the purpose of struggling?

I’ve felt sick like this many times before. There were times in my childhood where I was in so much pain that I didn’t eat much for several days. I was deemed a picky eater. My parents yelled at me, at times forced me to eat until I threw up, and threatened to take me to the doctor. I really wish they did. Maybe I wouldn’t be in the predicament that I’m in now.

Maybe if I was an only child things would be different. My brother had special needs so mine were ignored. It was selfish of me to take care of myself. I mean, look at my brother.

I can’t blame my parents for everything. I once told a doctor about the things I was experiencing and she told me it was all in my head. Maybe it was all in my head. Maybe it still is. I have that fear. Maybe I will go in for the colonoscopy and they will find nothing wrong with me. But if it is in my head, you better lock me up because I can’t live this way much longer.

At its greatest intensity, the stomach cramps feel like I am in labor. That being said, I didn’t really get a lot of sleep last night. I was in too much pain.

What does this mean for my life going forward? I’m thinking about giving up running. I am not well. My running really took a downhill (or uphill) turn last year. But I did finish a 50k. I achieved everything I wanted to. Oh my gosh, will my life come down to walking and yoga? Shoot me now!

I have to think this physical struggle with my health has some purpose. I have to think my childhood trauma had some purpose too. Why is purpose so meaningful to me? Without it, what is the point?

My husband has been very supportive. I want to thank him for giving me the best years of my life. I know we annoy each other and fight sometimes, but I can always count on him. I guess that is as close as I can get to trusting someone in this life.

I have been struggling because I want to write about what happened last summer with my husband. But I don’t want to hurt him because he is a good person. He did give me the green light, but I would choose him over being transparent with you any day if I felt it’s what I needed to do.

The whole purpose of having a personal blog is sharing my story. The ups and downs and the bumps along the way. Maybe I can help someone else in this journey. Or maybe it just makes me feel better.

My story is the only thing that cannot be taken away from me. Unless I end up with dementia, of course, which I am convinced will be my demise. But until then I am going to keep writing.

 

 

 

Maybe tomorrow…

Yesterday I said maybe…Maybe school will start back up again. Maybe you can plan your birthday party next month. Maybe your best friend whose mom has cancer will be able to go.

Yesterday I said maybe, then yesterday maybe was gone. The governor cancelled school for the rest of the school year. The girls still have online schooling. But now everything deemed as fun is officially over. Tomorrow they were supposed to be going to prom.

It’s been a rough week here. Winter made a come back. There is a smattering of snow on the ground. It’s been cool and windy. I haven’t even been outside running this week. Everyone has cabin fever on steroids. It is a problem around here this time of year when we aren’t locked down.

It brings back memories of long ago. When I was in 8th through 10th grade I was homeschooled. My mom pulled us all out of school when my autistic brother Matt could no longer go to school because of his violent behavior. As a teen I lived in isolation for three years rarely leaving the house and rarely having anyone over. It seemed different then, maybe because I was a child.

I spent three years in isolation as a teen. It’s been a month now and I probably leave the house as often as I left the house back then. Maybe I have to examine that as part of my trauma experience. I’ll add it to the list.

I told myself I liked the isolation and really I think I do. I told myself that is what I wanted. When you can’t have what you need sometimes the best coping mechanism is to tell yourself what you have is what you want. You get used to it. It becomes normal.

Now everyone else is just as crazy as I am. The sanity playing field has leveled out. Maybe now you feel the anxiety that I always felt. Maybe the anxious introverts are now pulling ahead of the coping game. If you also struggle with depression, give yourself another point. Now the social anxiety people even don’t have to feel bad for not wanting to leave their house.

It feels strange to leave the house now. It feels strange to drive my car. I went to the store today to get groceries for my elderly parents. It feels strange, to call them elderly. It is hard to get groceries from someone else’s list. I’m not sure why.

I wore my mask that my crafty daughter sent me in the mail. I don’t mind wearing a mask though, although I couldn’t wear my glasses which made it harder to read the list. I don’t feel like I have to smile because no one can see my mouth.

Most of the people at the store wore masks. I don’t see little children anymore. That’s different. I hear more people fighting. That’s different too. It’s exhausting, but I don’t do anything to be exhausted for. When I get to my parents house, my mom opens the trunk to her car and I put the groceries inside. I wave at my mom and my brother Matt through the window. My mom looked different today like a wilted flower.

I wonder when all of this will end.

Maybe tomorrow…but yesterday I said maybe tomorrow too.

Enviable ignorance

This week my autistic brother Matt celebrated his birthday. He was rather upset he was not able to celebrate his birthday with family at the bowling alley like he has done every year for over a decade now.

His program he attends for autistic adults and children was also shut down. The group home he lives in closed its doors. They don’t have enough staff to cover the hours at the house where its residents were previously gone.

Matt was sent home disrupting his day to day routine just like the rest of us. This was rather disturbing for a population of people who don’t understand why the change is happening. But as they say ignorance is bliss. He is happy to be at home because he likes it there. He adjusted really fast to having my mom dote on him.

Matt wasn’t upset the day the police officers showed up at my parent’s house to talk to my dad. But that was the day the rest of our lives changed forever. You see, the police came on a Friday. That was the day Matt was scheduled to come home for the weekend and all was well for him.

Matt isn’t worried about the corona virus. He isn’t trying to stop touching his face. He is not worried that our parents who are in their 70’s might die. He just worries about whether his food will show up on the table when he is hungry just like a small child or household pet. He doesn’t have the responsibility of a family. He doesn’t even have to take care of himself.

In all honesty, sometimes I wish for that ignorance. Dementia doesn’t sound all that bad to me because who wouldn’t want to forget all of the bad things that happened to them. Maybe sometimes I just want someone to take care of me.

I wish I lived in a world where there weren’t so many things to worry about. I envy Matt’s ability to remain calm and worry free in times of great chaos and unpredictability.

There is something attractive about having a child like faith and sense of wonder in times of struggle. I want to be like a carefree child who dances and plays. I want my only worry to be about whether or not someone feeds me having the security that they will.

Yet I have been given the gift of reason. With this gift comes a great burden. Difficult decisions need to be made. It’s hard to break free from the stress and struggles that awareness brings.

I don’t want to be like Matt but sometimes I envy him.