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.

Extreme empty nest solutions

On Sunday I received a phone call from the foreign exchange student coordinator a couple hours after my daughter moved out.

Sunday was a bittersweet day.

On Sunday, my best friend became a grandma for the first time.

On Sunday, it’s been a year and a day since my close friend lost her daughter in a fiery car crash.

On Sunday, my daughter moved 4 hours away and is not planning on living at home again.

I was feeling down as you can probably imagine.

My oldest daughter moved out, my son is off pet sitting this week, and my youngest daughter is volunteering this week as a camp cook. I’m feeling the empty nest kick in. I realized that I may have a harder time with this whole empty nest thing than I thought.

I’ve been a caregiver since I can remember. I was my autistic brother’s “second mom”. I also helped with my other two younger brothers.

In college, I was a caregiver for an elderly woman with Alzheimer’s and a middle aged man with Paranoid Schizophrenia. I took care of my brother Matt up until after I had several kids of my own. I also took care of my Aunt Grace when she had dementia. I provided day care for several children when my kids were little.

I don’t know what it is like to not take care of someone and the thought is a little scary.

As I was crying and feeling sorry for myself, the phone rang. The foreign exchange program coordinator called and said she had an emergency situation. One of the host parents for a student from Germany ended up getting into a serious motorcycle accident and broke her back. This student was really into music and needed a home.

I was wondering what to do with my daughter’s empty room. So we filled it. Now we will be hosting two foreign exchange students starting next month, Estelle from France and Clara from Germany.

I feel like my life has meaning again. I suppose most people get another pet once they start emptying the nest. Not me, I guess you could say I am rather extreme.

Even though it might be stressful having 3 teenagers in the house again, I am going to enjoy this last year of chaos before I have an empty nest.

By the time next year rolls around, I might actually be okay with only taking care of me.

 

Luke’s visit, part 8

Over the past year, both Mark and Luke quit drinking. I was a little worried about Mark a couple summers back. One morning he started drinking at the cabin before most of the family woke up. Luke was always a drinker. He knew everything there was to know about beer. Luke was also the comedian. He’s not funny anymore. It’s strange that I felt some sadness at the loss of his role. He always made us laugh which made going through hard times easier.

Luke was upset that our parents did not seem to want to hear what he had to say to them. He told them that he needed to talk to them for him. It wasn’t about him being emotionally supportive for them anymore. He needed this for him to heal. He quit being the comedian not all that long ago. But making us laugh made us feel better, not him.

Luke stripped himself of all coping mechanisms and dove right into the truth. He is relying on God to get him through this. Me, I like to dip my feet in the water and keep my coping mechanisms nearby. Maybe I’m okay with the lies I tell myself until I am ready to face the truth. What is wrong with that?

Mark played the part of the invisible middle child. He had an important role too. He was the one who advocated for my dad when my mom packed up the car with her stuff and was ready to leave. He kept the family together.

I played the part of the caregiver/counselor. I was always the ultra responsible first born. This has been my role since I can remember. I think it is going to be hard for me once my kids all leave home. I cared for my autistic brother Matt since I was a little kid. I still was his caregiver after my children were born up until he started acting violent towards them. Then I had my own family to care for.

Luke asked my husband how I cope. Paul told him that running helps me cope and it does. I don’t drink to cope. I could never let anything control me. But is that really true? I like to work and keep busy at all times. Perhaps that controls me since I can’t ever seem to relax. But how can working be a bad thing? What if my coping mechanisms aren’t unhealthy? Who can I hurt by having a clean house, etc?

I like to write about my experiences. But on the days when I write about the most difficult times, I feel very depressed. Paul said that although writing seems good for me, maybe I need a counselor. But I stubbornly resist the notion of anyone helping me with anything. I don’t want help. I don’t think I need it right now. I want to work through this on my own.

I will be okay. I am healing. But it is not always a beautiful process.

On ffffffeeling angry

My mom called me first thing Monday morning. She told me that she wanted to work on her feelings of anger. She thought it would be a good idea if I did too. Maybe, she said, I should think about seeing a therapist.

She point blank asked me if I was angry with her. No, mom. She asked me if I would tell her if I was angry with her. Sure, mom.

My mom asked if I was angry that my autistic brother Matt hurt my daughter Angel. Mom, that happened over 15 years ago.

My mom asked if I was angry that she spent/spends more time with Matt than she did with me. Mom, Matt needs you more than I do.

Right now I spend my time angry about other things. Arabella is starting to get late assignments. Her straight A’s are starting to slip…Not to mention that she rolls out of bed 10 minutes before the bus comes and expects to have enough time to take a shower and get ready. And somehow that ends up being my fault.

I am angry that I got a letter from the police department regarding a fine my son received over break for doing donuts in a parking lot…a minor incident nonetheless, but we didn’t find out until we got a letter in the mail. We told him that he had to pay his own fine to find out later in the week that he pissed away most of his hard earned money from his summer job on fast food.

This is what boils my blood now.

But I don’t tell my mother that. I barely talk to her at all about anything personal anymore. I don’t tell her about the things that make me angry. I want to protect her from that. She has had a hard life. She shouldn’t have to deal with any more problems during her last years.

To tell you the truth, sometimes I am angry with my mom. I am angry that I gave up my childhood to take care of my brother. Then when I needed her the most, I felt like she wasn’t there.

My mom did the best that she could. So why should I feel angry?

So what if she babies and spends more time with my disabled brother?? He needs her more.

Why do I feel anger towards my mother sometimes for something she had little control over??

The more important question is why don’t I feel anger towards my dad?? He had an ideal childhood, but wasn’t a good parent. He was lazy. My mom worked long hours to be the main breadwinner. She supported the family. My dad worked part-time jobs here and there.

My dad stuck around but wasn’t there. He was more interested in TV than being an active father or supportive husband. When he was involved, he was reactive and abusive.

My mom did everything and needed help. So I stepped up to the plate to help my mom raise my 3 younger brothers.

That being said, why should I feel angry towards my mom?? Why not my dad? She did the best she could. He could’ve done so much better.

How come feelings don’t make any sense?? There really is no logic behind them. They are so complex that I barely understand my own feelings much less the feelings of others.

No, mother, I am not angry…says my mind…but on some days my heart tells me differently. Why??

Narcissistic worry

Last week I read a wonderful post about narcissism. Then I got to worrying…Oh my, am I a narcissist??

Growing up my life revolved around my autistic brother Matt. It was all about Matt…Matt…MATT all of the time. I wanted it to be all about me. ME! ME! ME!
Aren’t I great??

I was on my own for a very short period of time. I graduated from college, got married 2 months later, and got pregnant 2 months after that. I have been a mother since my mid-20’s.

Right after I was out of my parents house (taking care of my brother)…I ended up having three children. Since then it has been pregnancy, having C-sections, breastfeeding, diapers, sick kids, lost teeth, sibling warfare, birthday parties, braces…to today where I have 3 teenagers. My life involves taxiing my kids around, dealing with difficult issues such as sex, drugs, and lets throw rock and roll in there too. Why not?? I have to deal with underage drinking, bad grades, messy rooms, rebellious attitudes…all the normal issues of dealing with teenagers…plus cooking, cleaning, and laundry.

I secretly fantasize about being an empty nester. I want it to be all about me. I don’t want to have to worry about anyone else…I don’t even want to have to take care of pets anymore. I am sick of having to get a pet sitter every time we want to leave. I hate it when the pets bring fleas into my house…or when the dog gets into the garbage…or puke on the carpet…the constant crying for food the minute I wake up in the morning or right when I get home from work…the poop on the floor right outside of the litter box.

Last month my brother Luke and his family lost their family dog. The were heartbroken at the death of a member of their family. Last week they got a new puppy. I feel guilty for not wanting any responsibilities. I will gladly take care of the pets I have until they are gone…but after that…I don’t even want a fish!

I am also a completely vain person. I envision myself always looking great in a bikini while I gaze at my reflection in the pool. I want to tell my classmates that I was carded this year. I am getting younger while my classmates are so old and weathered that I don’t recognize them anymore. I couldn’t possibly look as old as they do, right??

I also have Mary Poppins syndrome. I think that I am practically perfect in every way. I never admit to having any faults. I strive for perfection.

On a side note**I wouldn’t recommend making deviled eggs for Thanksgiving if you are a perfectionist! Grrrr..

As a child I was punished for making mistakes. One bad grade in elementary school and all of my dolls were taken away for a semester. I was so afraid of making mistakes and not being good enough.

Sometimes I think that harshest judges have been most harshly judged.

I’m working on it, okay?

Yesterday I just realized that my criticism and annoyance with others could be viewed as annoying..

As I sit here gazing in self reflection…I realize that I am probably not a narcissist. I just need a little responsibility free time to myself. I love my family and pets, but sometimes taking care of them all the time can be overwhelming. In a few years I probably won’t know what to do with all of the ‘me’ time.

I figure if I am so worried about being a narcissist, that I am probably not one. Narcissists don’t worry that they are narcissists…Do they?? No, just anxious people worry…Boy, do I feel better..

To think…for a few minutes I thought it was all about me!

The weight of my world

I am having nightmares again..two last week and one this week so far..

Last night I dreamed my sister-in-law Emily died. It was right around 2 AM. I stayed up a few minutes and went back to sleep into the same nightmare again. Then for the next 2 hours I continued the dream. Emily died and her little girls were without a mom. It was shocking, unexpected, and tragic. Not only did Emily die, but whatever killed her was contagious and other family members were exposed and might die. I woke up crying and here I am typing a rough draft at 4 AM wanting to sleep, but not really wanting to sleep.

This is a stressful time in my life. I thought I was going to fall into a deep depression after my daughter Angel went back to college. It didn’t happen. Honestly, I have been too busy to notice her absence. 

Work has been crazy busy, but yesterday we hired our new employee. There is relief in sight.

My mother-in-law, still dying and getting weaker with each visit. We have been going to see her as much as possible. It is a depressing and hopeless situation. I feel a lot of guilt because I have been neglecting my own parents. 

All of this brings up guilt from when I was a caregiver for my Aunt Grace. She needed so much care that it took all of my time. I didn’t spend as much time with my grandma whom I was closer to. I often drove by grandma’s house without stopping because Grace needed me more. 

Is this how my mother felt all these years taking care of my autistic brother Matt? I think I am finally getting it. I wanted to spend time with you, but he needed me soooo much more. 

Matt still needs her more, will always need her more. He had a meltdown over Christmas. He went home from work one winter day with his boots on and forgot his shoes at work. He was so worked up that he needed to be medicated. My mom told me about this on Christmas Eve because someday she said I will be getting the phone calls.

The weight of my world is so suffocating some times. 

4. Ten things to tell your 16 year old self

Day 4: List 10 things you would tell your 16 year old self, if you could

  1. Spend as much time as you can with your grandparents. I hate to tell you this, but friends come and go. Your best friends now won’t even be at your wedding. Soon something is going to happen that will push the friends you have now away. Enjoy the times with friends in the moment. Remember that your grandparents won’t be around forever. They are the greatest source of stability in your life, not your friends.You will never regret spending a lot of time with them.
  2. Your strong work ethic will get you very far in life. However, don’t put work or your long to-do list above your relationships. Take the night off of work to go to your brother’s high school graduation. The $30 you earned that night will never make up for the regret you will feel for the rest of your life for not being at your brother’s only graduation.
  3. I know that you are dealing with some pretty hard things to handle and you feel like you are all alone. These are the hardest years that you will ever face in your life. Hang in there, soon it will be smooth sailing.
  4. Don’t think that you have to be perfect, or even good, at something before you are willing to try it. You don’t have to be good at something to like it either. You don’t have to be perfect. Quit being so hard on yourself. It was a big lie when you were told you had to be perfect. Put yourself out on a limb. Try something new even if you are not good at it.Who cares if you fail?
  5. Leave home when you turn 18 and do WHATEVER it takes to not go back. In fact, move far away. Do not take responsibility for your parents problems. Do NOT agree to be your brother’s caregiver. You should not be giving your brother a shower on a Saturday night. You should be out living your life doing the things that young people do. For once in your life, be carefree. You will already regret not having a childhood, don’t regret not living while you’re young too. Soon enough you will be tied down by your own responsibilities.
  6. Don’t be a caregiver for your brother or anyone else for that matter. Be a little more selfish. Do the things you want to do. Allow yourself to be stupid and make mistakes that you can learn from. Hold out for the library job you will be offered instead of turning it down to be a caregiver. You did enough care giving as a child. This will not be good for you.
  7. Buy an expensive pair of running shoes and start running. Trust me. You need a healthy way to relieve your stress. It is a lot cheaper than therapy and all those bottles of pills that never helped you anyway. Soon you will enter adulthood with enough baggage to travel the whole world. Once you realize their weight, you will have a lifelong struggle with depression, anxiety, worry, and anger. Running will help you get through all the years of repressing your feelings that you couldn’t handle.
  8. Keep writing down everything you experience and don’t stop. It is worth making time for. Some day it will make for a helluva story.
  9. You have to forgive the people that have hurt you for your sake. Pity their weakness. Eventually you will no longer be able to outrun all of the things that you are hiding from. It is going to take a long time to face your demons. You will spend a lot of time reflecting. But eventually you will have to let go..forgive..and trust that God has a bigger plan or purpose for your life. Be a beacon of hope for those that struggle around you.
  10. Try not to worry so much. It annoys me and the others around me. I don’t like it. I want you to relax. Please start working on that now so we can get over this someday.