Caregivers

Spring’s new start

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I started my new job yesterday. For the rest of the week I will be working remotely doing a new employee orientation. There are 60 some other people in the class with me. This will be the biggest company I worked for. I never thought at 50 I would be starting a new job in the healthcare industry, but here I am.

Since I last wrote, I took my mom to two of her appointments. At the appointment with the psychiatric nurse, I requested my mom to be taken off a medication that is hard on the brain as requested by the neuropsychiatrist. The next appointment was the first appointment with the neurologist. The neurologist seemed very concerned about the condition my mother is in. She only answered 11 out of 30 questions correctly. She was unable to think of any current events. She told the doctor we were going out to eat afterwards as the current event. The appointment lasted close to two hours. It was stressful to see how poorly my mom answered most of the questions. The doctor also said my mom had a movement disorder typically seen in the later stages of Alzheimer’s. Then the doctor ordered another slew of tests starting with a MRI.

Afterwards, my mom took us out to eat. Paul picked the restaurant as a reward for helping her keep track of Matt’s financial records. I felt bittersweet in the moment. I tried to enjoy the time with my mom but the doctor’s words rang in my head to start looking at care options soon. Her condition is not going to improve. In fact, quite the opposite is true. After going out to eat, we visited Alex at work in the music store.

The doctor said I should make sure my mom is taking her medication correctly when we got back to her house. Her pills were a mess. She had only one pill container where she put both AM and PM pills into it. I tried to help her straighten everything out but this only made her angry. She yelled at me to just leave her alone, but later apologized. I called her doctor as well because she was taking a lot of supplements and I was concerned. The whole experience resulted in another trip over with a new pill sorter with AM and PM slots and the removal of some supplements she was taking way too much of.

The trips to the doctors and bad news really took an emotional toll on me. I felt more empathy towards my mom than usual once I realized how sick she was. At the same time I felt conflicted in my mind over how toxic and difficult our relationship has been. Not everyone has close relationships with family they need to caretake. Something to be mindful of when I work in the ER.

By Friday I was ready to get out of town and make the drive to Milwaukee to see Alex’s band perform at a brewery. The venue was packed, and not just with people. There were a lot of dogs inside, kids running around, and someone even brought their pet pig. A younger man even brought his puppy over to me to hold. They said animals were allowed in the brewery because they didn’t sell food inside. However, they had food trucks set up outside and you could bring food in.

Paul and I stayed in a German Inn. The building was a hundred years old. We ate German food there and each had a flight of German beer. Everything was excellent. Then we took an Uber to see our son’s band play. I am so blessed to have two children who are very talented musicians. It’s amazing to see an audience adore them. We had a great time watching the band. Then afterwards we went to the bar with the band. We didn’t get to bed until 2 AM. I felt bad in the morning because we were probably really loud coming back to our room as I could hear the other residents awake early in the morning. It was a nice little getaway before work started though.

This weekend we will be seeing Alex’s band again and going to a film festival. I only work half a day on Friday and then I am going to get my 7th tattoo. I am getting outrunning my demons tattooed on my leg. This is something I was planning on doing once I finished my memoir. (Although, at this point, I can’t guarantee it is 100% done). However, this Friday would’ve been my grandma’s 100th birthday. As the most positive influence in my childhood, and the reason why I am here today (both literally and figuratively) I am also getting a tattoo on her birthday in remembrance of her.

My grandma passed away 16 years ago already. I am going to throw her a party by lighting every candle in my house surrounding her pictures, watching old family videos, and just sharing stories and remembering the good times with her. I am going to make cookies using her recipe because every time anyone would visit a jar of cookies would be waiting for them to take home. I want to say I will be making her favorite foods, but I really don’t know what they were because she would always make my favorite foods.

This past week I experienced a lot of ups and downs. The sadness of my mom’s deteriorating health. The joy of watching my son play in the band. A small getaway. Starting a new job in a new career. Not having the time to care for others as much with the start of a full-time job. I’m not sure if this is good or bad yet. Arabella had her doctor appointment today. This was the first appointment I didn’t go with her to in over a year. The doctor switched up her meds a bit. He also put her on a weight loss drug as her anti-psychotic meds are making her gain a lot of weight. But guess what? She managed going without me. It’s going to be a lot harder with my mom. But maybe other people need to step up and worry about it, not just me.

April begins…

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I am scheduled to start working in less than a week and I still haven’t gotten my schedule yet. As a planner, it’s been driving me crazy. My mom and Arabella have doctor appointments the next couple weeks and I don’t know if I can take them. Tomorrow my mom has her appointment with the psychiatric nurse and the following day she has her first appointment with the neurologist. Thankfully, I will be around to take her to those appointments. Unfortunately, my mom doesn’t live all that close so just the driving to appointments takes 2 1/2 hours of my time. Hopefully we will be closer to answers on the type of dementia my mom has and closer to options for treatment.

My follow up appointment with the doctor went well to check on my thumb where a chunk of nail down to the base was removed to get out a sliver. No signs of infection. However, it is going to take months to heal if it ever does heal properly. I will still need to wear a Bandaid as there is a thin portion that remains which tends to get snagged on clothing.

I got the sliver while vacuuming against a wood railing. Last week after cleaning the house the switch on our well pump went out. Mind you this happened at 5 PM on Friday while I was rinsing veggies to make supper. We ended up without water for the weekend. It would work briefly if someone tapped on the switch. So just enough to hand wash the dishes but not enough to run the dishwasher. Ironically, after the water turned off inside it started pouring outside. We had heavy rains, thunderstorms, sleet, some snow, and an ice storm before the system left late Sunday night. Monday morning service people came out to do their magic and we have water. Today I cleaned the house again. Hopefully nothing bad happens. I’m starting to doubt a little cleanliness never hurt anyone.

Despite the lack of running water, the weekend went well. I finished writing my memoir. I know I’ve said that several times and then a lot of things happened. But I think this time I am really done.

This week I am looking forward to doing stand up comedy again. Then Paul and I are going out of town for the night to see Alex perform with his band. It’s one little last hurrah before I start working next week…if I start working next week. Hopefully I’ll get my schedule soon!!

Hopefully the next time you hear from me I’ll be complaining about my new job. Just kidding. I used to really get into April Fool’s Day jokes. But it really doesn’t interest me too much anymore. Maybe that’s a part of being a ‘mature’ woman.

What is coming next

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I want to start blogging more again. Maybe I can try for once a week. I realized today I have been blogging almost ten years. It takes some form of dedication or insanity to continue that long. One of the hardest parts for me is finding people I connect really well with and then they are gone. Maybe their blogging experience is only temporary. Sometimes bloggers pass away. That component is harder for me then finding things to write about.

This past week has been difficult/emotional in different ways. The job search has lead to several dead ends. I was selected for the lucrative job I took the proctored exam for. However, I am sitting in limbo. It’s been over a month since I applied. When I reached out, I was sent a form letter stating that I am in a pool of applicants and if/when they need me they will reach out. My test results will be on file for two years and if I don’t hear anything by then I am welcome to reapply. But I am looking for a job now.

A friend told me over the weekend that she knows someone who works for the job I am waiting on. She said for the first 6 months they had to work 3rd shift until there was an opening in 1st shift. I am not willing to work 3rd shift, been there done that and don’t ever want to do that again. I would be willing to work those hours once in a while but not often. I AM, however, willing to work day shift (early morning is fine), 2nd shift, weekends, and holidays. I don’t want to work a regular Monday through Friday 9 to 5 job either. I just don’t think it would be possible for me at where I am in my life right now.

As of this last week, I am now the successor guardian for my brother Matt. However, I am not going to do everything the same way my mom did. I am not going to cater to his every whim. This is going to be an adjustment period for all of us and I am going to be pulling off the band-aid. At first I felt a tremendous amount of guilt for doing things my way, the way I think will be the best for Matt. But I had to remind myself that I have taken on the responsibility to be responsible for my brother for the rest of his life or mine. I never signed up for this. I don’t want to have a brother with a disability. But I was willing to take it on even though it was not in my best interest. There are going to be a lot of things I have to learn.

This past week my mom had her neuropsychological evaluation we waited 5 months for. We will be getting the results this week. My brother Luke went with my mom and I to the appointment which lasted 4 hours. We had around an hour to talk to the doctor about our concerns without our mom in the room. I think we were listened to and adequately described the situation. The last few months my mom’s dementia has gotten worse and she reached a new level of raw unfiltered obsessiveness and self-focus. I think she may have more than one personality disorder on top of whatever dementia she is facing. Spending time with my mom is very difficult. I have to limit it to once a week for my own mental health. I had horrible nightmares the evening of her appointment.

This is why I can’t look for a 9 to 5 job. I have several appointments during the month during the day for my mom, daughter, and will for my brother Matt as well. Also, I would like to continue volunteering for several organizations during work hours. My husband and I just finished facilitating an 8 week family class through NAMI this week. We had the opportunity to guide ten other people who are new to mental health struggles with family members. It was great to use my experiences to help other people. We had such a great group and I am sad to see the class is over.

Every week I am looking forward to several opportunities to de-stress. This week I am planning on going to trivia night with friends. The first time we did it, we won second place. This will be the second time. After taking two months off to teach the class, I had to take a hiatus from stand up comedy. I will be doing stand up comedy this week. This weekend my son’s band will be playing so I am looking forward to going with friends and family to watch them perform.

I am also planning on finishing the third edition of my memoir this week. Last year I was planning on ending it but so much more has happened to write about. I feel like I finally found a good place to stop the story. My plan is to have it completely finished by April 11, which would’ve been my grandma’s 100th birthday. Even though she has passed many many years ago, I want to celebrate her day and the life she has given to me. Without her influence in my life, I don’t know where I would be.

Other than that, my husband and kids are doing well. It’s great they are all in a good place right now. I feel like I am at a crossroads of sort. It is a very uncertain and anxious time, yet on the other side of the same coin is a sense of anticipation and excitement for what is to come next. I might take some classes and go a whole different career route. Who knows at this point? I think I should have a lot of answers this week.

On caring

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It’s been four years ago today since my daughter Arabella’s first suicide attempt. In this I am rejoicing because she is still alive. It’s been a long hard road, but here we are.

Yesterday, in the early morning hours of Valentine’s day, Arabella had her tonsils removed. So far nothing crazy has happened, unless you count the nurse splattering blood all over the floor with her second attempt to start an IV. All of that makes me quite queasy, along with the thought of anyone I care about being in pain.

I was asked this week if I considered getting medical training to care for my parents in their home. Nope, that thought never crossed my mind. Then I felt the guilt of maybe that thought should’ve crossed my mind. I just don’t think I could do it.

I’ve been a caregiver since the beginning of my time, while I myself was still in the need of care. The earliest (traumatic) memory of that is of watching my three younger brothers by myself in the lake when I was six. My youngest brother almost drowned. I was always the ‘second mother’ since I can remember. I was my mom’s ‘best friend’ and I had to take care of her and make sure she was okay while I went uncomforted.

As a teenager, I was providing care for my autistic brother Matt who was less than two years younger than me. I was also helping with showering and personal care. My mom relied on me more than she relied on my dad when I was yet a child. Starting at age 12, I started working as a babysitter for about a dozen neighborhood families.

In college, I worked as…you guessed it, a caregiver. I was still a caregiver for my brother Matt along with a man with schizophrenia and a woman with dementia. Two months after college graduation, I got married, and two months after that I was pregnant. I never questioned whether or not I would be a good mother. I was actively parenting my own three kids from 1998 through 2021. While actively parenting, I became a babysitter to several other children, one of whom was in a wheelchair. I also provided care for my Great Aunt Grace who had dementia which also included bathing and personal care.

Then in 2020, exactly 4 years ago today, my daughter developed a serious mental illness. Even though she turned 18 in 2021, I will probably have to provide care for her in some capacity for the rest of my life. I will also become the guardian of my brother Matt when my parents can no longer do it. Last week we had the conversation of putting me on my brother’s account so I can write checks if my parents are unable to so he can continue to stay in his group home without disruption.

Right now my mom seems to be slipping into dementia, but physically she is in great shape. My dad is of sound mind but in horrible condition physically. The only thing normal about my parents is that they both want to stay in their home as long as they can. They don’t want any caregivers to come out to the house because they don’t trust that people won’t steal from them. I have been helping them check what their options are. I am totally fine helping them manage their care and making sure they are in a good place, but I don’t think I would be willing to be their caregiver.

Some may say it’s selfish, but I have my own life and my own problems. This week I started a new medicine for ulcerative colitis. I have my own health issues. But even if I didn’t, I still wouldn’t want to do it. I can’t recall one single good memory with my dad. He was abusive and his issues with addiction pushed most of the family away. If he was a great dad, I would bend over backwards to help him. There is truth to the old saying of you reap what you sow. When I was younger I hungered and thirst for justice. But not any longer as I see it playing out before me just as it was meant to be.

There is a reason why some old people are sitting alone with no visitors at the nursing home. No doubt, it is incredibly sad. I wish it wasn’t that way either. But if you never put any money in the bank, how are you supposed to take any money out?

I try to put everything I can into my relationships that are meaningful. Everything else can take the back burner.

ghosted

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I think my mom is mad at me. I haven’t heard from her in days. She is like that sometimes. There have been periods in my life where she has given me the silent treatment for days and then later acts like nothing is wrong. Or sometimes she smothers me.

I think I know why she is angry. Last week my mom was on vacation with her sister visiting their other sister at her condo in Florida. She called me almost every day she was gone. The first time she called on speaker phone wanting an update about Arabella. I was really annoyed by that because, although I don’t mind my aunts and uncles know my daughter is in jail, I didn’t want to talk to them about it. It was during that conversation my mom told me something was wrong with my dad but she didn’t know what because he didn’t tell her while she was on speaker phone.

One day she called wanting me to go check on my dad because he didn’t pick up his phone when she called him. My dad doesn’t live next to his phone. I told her he probably forgot to charge it. It turned out not to be a big deal. My mom calls wolf a lot so it’s hard to believe anything she says. A couple months back my brother Luke wasn’t feeling well. My mom thought his kidneys were failing because he has kidney disease and practically asked me if I thought my husband would be willing to give my brother a kidney. It turned out being a virus or something and he wasn’t dying. I take everything my mom says with a grain of salt.

The next evening my mom called while I was driving for a night out to go to the film festival with Paul, Alex, and Lexi. I didn’t want to deal with it so I didn’t answer my phone. My mom is known for catching me when I’m off to do something fun and guilting me about it bringing me down. When I didn’t answer, she called Alex. She never calls my son so I knew she was tracking our location and knew he was with me. Alex called her back and she dumped all her problems on him.

The next day she called me again wanting me to go check on my dad. I asked her what was wrong and she said my dad didn’t get off the couch for a couple of days. I’m not sure why that was a problem because my dad hasn’t gotten off the couch for about 20 years. I asked her if he called stating he needed help and she said she didn’t talk to him for a couple of days. I told her to verify if he needed help before I drove out there. She never called me back.

I don’t talk to my dad, but I don’t not talk to him either. If we actually had a relationship and my mom wasn’t calling wolf all the time, I would’ve dropped everything to check up on him. I decided I don’t want to be a caregiver for my dad if he is in poor health. I don’t have that kind of relationship with him where I would be willing to do that. I have my hands full just dealing with my own problems right now. Besides my dad is a very tall and obese man and I don’t think I could lift him if I wanted to.

The next day my mom was back home. Later in the day she called 911 and she called late Monday night to say my dad was in kidney failure. It turns out he probably ended up getting a kidney infection while she was gone. She said he was probably going to die that evening then called Tuesday to say he was going to be okay. Wednesday Arabella was in court. I texted her with an update and she never responded. Then I gave her a call Thursday and she hasn’t called back yet. Today is Sunday and I haven’t talked to her since Tuesday. Maybe she is angry because I didn’t go into an anxiety frenzy or drop everything to check on my dad for her. I’m sick of guessing and stressing about it. I have no idea where my dad is right now.

I recently read a book about stopping being a caregiver for the borderline or narcissist. It really opened my eyes to a lot of things. I always thought as a child I was my brother Matt’s caregiver. But through reading the book, I realized I was my mother’s caregiver. I was the second mom. I was being the parent when I was a kid. It’s a little late, but I decided it’s finally time to take care of me. My parents are capable of taking care of themselves. Sometimes I have to set boundaries to protect myself. That’s not to say I won’t help if it’s truly needed.

I’m sure my mom will call in a couple days like nothing ever happened. Then she will be upset I am going on a road trip with my friends. I hope I’m wrong.

Gratitude week 97

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  1. Woohoo! It’s no shave November. LOL
  2. My husband is on week 2 of the detox diet and doing good.
  3. I’m grateful that Angel and Alex got gym memberships and work out several times a week. I’m happy that two of our kids have picked up on some of the healthy habits my husband and I have.
  4. The last couple of days the weather has been seasonally warm and sunny.
  5. I have appointments tomorrow with both the dentist and the doctor for a physical. YUCK! So the following day I made an appointment to get a massage. Yippee! It’s been ages.
  6. I started rereading the first edition of my book. It’s been almost two years since I wrote it and this will be my first read through since then. I’m grateful to have started the process again.
  7. I got a major project crossed off the list in the garage apartment. We finally got an oven hooked up after 6 months. My mom donated her oven which was great except that it was hooked up specially for propane and not natural gas. We needed someone to hook up the oven to the gas line. But the hard part was finding someone that could convert the oven back from propane to natural gas. I had 3 service guys out that couldn’t do it. We had to wait for parts. Some of the parts were incorrect. The guy from the appliance store that finally was able to fix it was out for the summer due to open heart surgery. He even had to come out a couple of times but he was finally able to get the oven converted this week.
  8. Angel and I met with the florist this past week for wedding planning. He was an old friend of ours from the community theater and gave us a discount. It was great to visit again. Crossed that off the list.
  9. I was able to cross off DJ from the list as well. Believe it or not but back in the day I used to drive my minivan out to the school once a month for the PTO meetings. I helped plan the school family dance and went through this DJ. We also used him when we planned my husband’s and friend Jen’s 40th birthday party. He said he would give us the same rate that he gave us over 10 years ago which is way under market price. Win, win, win.
  10. We have all the major stuff planned now for the wedding. They have the wedding chapel, the reception hall, cake, DJ, flowers, my daughter’s wedding dress, and photographer. My daughter asked me to be their wedding planner because I am a super anal organized detailed person. Since Angel lives at home we are able to talk about it and bounce ideas off of each other. Unfortunately this may have caused her future MIL to feel left out who is more of a fly by the seat of her pants kind of person. Thankfully we are all aware of the situation and maybe it can be fixed now before it is a problem.
  11. Yesterday Angel and Dan had their engagement pictures done. It was a horrible day for Angel however. Once in a while she provides care for an elderly lady with dementia. Angel was out walking with this woman yesterday when the woman fell and broke her leg. It was a very traumatic experience for them both. Thankfully since it was a beautiful day outside, there were several people nearby who offered help instead of walking away or recording the event. The whole experience was very upsetting for my daughter who was crying the morning of the day she had her engagement pictures done. The family of the elderly lady was very kind as well. I can’t imagine how horrible she must feel. I felt a little of that guilt when I tripped over my dog and thought we might have to put him down. It’s an awful feeling. Thankfully everyone was supportive.
  12. While I have enjoyed the time this week by doing some creative writing, I haven’t been really talking much about what is going on. This week was a lot more chill than the last couple of weeks. However I did find out that Arabella did not get the job she interviewed for earlier in the week. She also reached out to me today for the first time since I last did the gratitude list. Unfortunately it did not go well and I got another fuck you from her. Her insurance is not going to cover the cost of psychological testing and she blames me for it. She said she took me off of her HIPA form so I can’t talk to her doctors anymore. A couple of days ago I called the county to ask what kind of mental health programs they offer, but since I am not her guardian and she is over 18 there is nothing I can do. At this point I feel like I’ve done everything I could possibly think of doing for her. I do feel a sense of peace and gratitude that I’ve done everything I could humanly do for her. She may need a guardian some day but I don’t think she will ever let that person be me. I feel very conflicted with the holidays approaching. I’m not sure what is going to happen, but I feel like I am able to handle things better.
  13. I’m grateful my mom is going to spend a couple of days with her sisters next week. My mom hasn’t been doing too well lately. She has been having insomnia again and is very anxious she is going to have a nervous breakdown. I just can’t handle this right now.
  14. I’m grateful for everyone who has been supportive during this difficult time. Thank you to my followers for the prayers, well wishes, kind comments, and offers of support and hugs. I really wish I could thank you in person but that would blow the whole anonymous thing. I want to especially thank my husband who has been a rock for me even though he is going through his own hell with this. I know he reads my posts and is even okay when I vent about him. Thanks! Thanks to my daughter Angel who has been more like a best friend since we are so much alike. Thanks to my best friend Cindy who is always texting and calling to make sure I’m okay. She won’t let me slip away. Thanks to my son Alex who doesn’t fully know everything I’m going through but cares anyway. Thanks to my dog and my cat who still cuddle up to me when I manage to push everyone else away. Thanks for the good people out there who don’t get recognized but step up to help someone in need. You are the people that keep this world going and make it beautiful place to live in.
  15. I finished the What’s Normal book. Yeah, I’m pretty much screwed.
  16. Angel and I have been reading books together. We just finished One Flew Over the Cuckoo’s Nest and watched the movie. Seems like I could relate to that book better than the what’s normal book. LOL.
  17. Although I didn’t look at the stats, this must be my longest gratitude list yet. Wow, I must be a super positive person after all. I am making good on yesterday’s fortune of pushing away the negative today.

The squeaky wheel

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Last Wednesday my mom came over. She walked in saying she told my dad she was going to move back into my house if he didn’t take a shower. In an instant I felt more stressed. She lived with us I would guess somewhere around 4 months. My dad showering was always a fight. If it was up to my dad he would never shower again. One time he didn’t shower for a whole year. It is a topic of marital conflict that I would bet most of your parents never have had.

It wasn’t long after my mom showed up that the police called her. She found out not only one, but two of my brother Matt’s caregivers in his group home stole money from him and his roommates. It broke my mom’s heart because she really liked one of the caregivers because she was good to Matt. Not only that, but my mom found out that someone most likely a caregiver stole my brother’s cell phone. My mom got a cell phone bill for hundreds of dollars on Matt’s phone for texting and data. My brother doesn’t read nor write. He said he couldn’t find his phone for the last couple of weeks. No wonder why, it was stolen.

This was very upsetting for my mom. She is going through so much. Sadly, it’s nothing new. From what I heard the police were going to arrest one of the women as they have a low tolerance for people that steal from the disabled. My mom needed to go to the police department the following morning to sign a subpoena to get the cell phone records. It never ends for my mom. The week before Matt was exposed to COVID and his roommate had pneumonia.

As my mom was dealing with some major problems with her special needs child, I was dealing with some major issues with mine. I knew that my mom was not as concerned about me in that moment as she was with everything going on with my brother. I spent my whole childhood pretty much used to that. My mom always said the squeaky wheel gets the oil. Some way or another, Matt was always that squeaky wheel. The other three tires never made much noise in comparison.

The last year and a half Arabella has been that squeaky wheel. Lately, she is all we ever talk about. She was sending me upsetting texts while my mom was busy with everything going on with Matt. Lately Angel picked her maid of honor for her wedding. She was excited because she was also picked as the maid of honor for that friend’s wedding. We were happy for her, but then the conversation quickly switched back to the problems we are currently having with Arabella. Angel said it wasn’t fair. She was doing great but no one ever focuses on her.

I understand totally as a special needs sibling. Tonight Paul and I are taking Angel and her fiancé out to eat to thank her for keeping a good eye on the house and pets while we were on vacation. We try to celebrate the good, but in all honesty everything going on with Arabella is bringing us down. There isn’t a lot of joy in my life right now. On a scale of one to ten I would list my joy rating at a zero. One of the only things that is keeping me from jumping off a cliff (or should I say the Kennebunk bridge) is looking forward to my daughter’s wedding.

Arabella’s time at the hotel was running out. She wanted somewhere to stay and didn’t want to stay with us or with my parents because the environment was way too unhealthy. She wanted to stay with my best friend’s family. Cindy has an 18 year old son living at home. I told my best friend not to let her stay there. If my daughter makes false allegations against her son, or husband for that matter, it could ruin their lives and I couldn’t live with that. Would she end up living in a car? Winter is coming. Then she ‘accidently’ sent me a text conversation she had with someone which detailed her overdosing. Maybe I’ll share that tomorrow. It’s hard to read though as a parent. Every day I expect a phone call telling us she is dead. That’s my life right now.

She doesn’t want anything to do with us, she said. But then she asked me if I would take care of her frogs. I have been but I don’t want to. I feel sad because every time I look at them I think of how they were a gift to her to show her how much we care. I don’t want her to take them because I am afraid they will die because she can’t even take care of herself. As I went to the pet store last week for more crickets, the guy who worked there forever commented to me how happy he was to see pets in good homes like mine. I almost started crying. I have a good home?? It’s so easy to doubt that anymore. I’ve been told how awful I am that I am almost starting to believe it or think that others see me that way.

How do people view me? Am I still the kind calm person with a sad smile? Or do people just see me with the weight on my shoulders that brings me down? Do they see the angry lady who beats her fists against the walls? The sad lady that almost cries in pet stores? Or do they see the real me in there somewhere? The me I can’t even see anymore. I’m so beyond broken at this point. Dealing with this stress day in and day out is killing me. But I’ve been through hell before and kept on going.

Caring for Matt

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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

/ Outrunning my demons / Leave a comment
  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

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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.