March on to the end

Life has been pretty quiet since last week. I still have my thumb bandaged up and will be seeing the doctor tomorrow for a follow up. I never realized how much I used my thumb before. I haven’t been wearing pants with a zipper and a button because what happens if I need to go to the bathroom and struggle with limited use of my thumb. Unhooking my bra strap. Tying shoes. Opening pill bottles. Cleaning to name a few… I hope it heals quickly, but I am not sure my nail will ever look the same.

I start my new job in a week and a half. I still haven’t gotten my schedule yet so I have been hesitant to plan anything. Thankfully my mom has her neurology appointment set up for next week so I should be able to take her. I will be working 4 days a week and every other weekend. I am content with this schedule as it will leave me a couple days off during the week to volunteer and take family to doctor appointments. But before I start, I need to go through 6 weeks of training which might be either in person or online 5 days a week Monday through Friday. So until I find out more, I wait.

I am starting to make some headway with transitioning over as Matt’s guardian. For the past several years, my mom has struggled with financial tracking and balancing Matt’s checkbook. She has been paying all the bills and I want to transition over to a payee. Thankfully, my husband has been helping her with this and has been wonderful with the financial end of things. He has been an enormous help with record keeping which I need to set up a payee through the county. He was able to answer questions I had no clue about. The whole process to set up a payee will take 2 months. In the meantime, I need to pay all Matt’s bills without a lot of information on how to do it.

Also, the county has been marvelous to work with as well. Over the decades, I heard a lot of negative things about the county. However, I found the opposite to be true. They have been very diligent and supportive throughout the transition process. I’m starting to feel like everything is falling into place.

Arabella is continuing to make improvements. She is starting to wear makeup again. It might not seem like it, but it’s a big deal. She stopped wearing makeup over a year ago. She didn’t care much about her appearance and had no motivation to do anything about it. Plus her old anti-psychotic medication was making her hands shaky which made it almost impossible to do her eyeliner. I know it doesn’t seem like much since most of her peers are getting ready to graduate from college. I wish she could have a normal regular life too, but she does not. She is in a good place now and any proof of that is worth celebrating.

In the next couple days I am looking forward to: doing stand up comedy, having a game night with Paul, Arabella, and her boyfriend, coffee with friends (I want to try a coffee flight), volunteering at the cat rescue, and trivia night. I am in the process of finishing my memoir, which has been 6 years in the making. Next week I will be very busy tying up loose ends before I start working full-time. I have something going on every day.

The unplanned

I was intending to write sooner but life had other plans. I ended up in the ER after I got a rather large sliver under the nailbed of my thumb. It was incredibly painful. Thankfully they were able to numb me up enough to get it out. But they had to remove a chunk of my nail to get it all out. This happened on my dominant hand so it’s been a bit of a challenge to do things. I have to keep it wrapped up for a week and watch for signs of infection. I’m not sure how it is going to look when it heals. It was a horrible and disgusting experience. I am not in much pain now, but I just feel exhausted. It didn’t help that I had my new hire physical today with bloodwork and a flu shot.

Other than the trip to the ER, this past week went well with a lot of fun activities planned. Angel came home and a group of us went out to eat and watched the musical she directed the music for. She wasn’t home for long, but we enjoyed our time together. Unfortunately for Angel, she got stuck at the airport in Chicago because the weather out east was not good and her flight got cancelled. But she did make it home safely and that’s what counts even though she did have to spend the night in Chicago.

We also had a group of friends meet us out to watch Alex’s band perform at a local brewery for St. Patrick’s Day weekend. I volunteered at a local film festival event. We saw our son’s bandmate perform on St. Patrick’s Day, drank green beer, and played trivia with friends that evening. It was probably the busiest extended weekend of the month if not year so far and one of the most fun as well. This weekend is going to be a lot quieter, but that is okay.

Last week I met with Matt’s case manager and program coordinator. I was not surprised to find out that my mom had complete control of Matt’s finances and medical care. I don’t want to control anything. My mom wouldn’t allow the care team to attend appointments with Matt, which is what they typically do. My mom also had extreme and strict restrictions on what the staff could and could not do. (Why couldn’t my mom be a clean freak instead???) I basically told them that all restrictions would be removed. They were all overjoyed, except for my mom that is. I know she is angry with me for not doing things her way and for not being able to control me. The way my mom treats me is hurtful at times. But my expectations of my parents are so low that it doesn’t matter all that much.

Both Paul and I feel terribly alone with our lifelong lack of parental guidance. I honestly don’t know if I would miss my parents much when they pass away. We don’t have that kind of relationship. It seems like they have been gone for years. I feel sad and jealous of stories of warm and loving parents. Parents that don’t leave a legacy of messes for their children to clean up. There is never a dull moment. But in some ways I rejoice for not being controlled because in families there are rules. I can finally do things my own way and no one cares. I created the family I wanted and what more could I need? Maybe grandchildren…

My best friend is going to be a grandma again. Her 21 year old son and his girlfriend are going to have a baby. It was a bit of a surprise no one was expecting which created a lot of mixed feelings. They are young, immature, and not ready to be parents. But who is, really?

I’m not sure what this next week will bring. I guess I needed a reminder that things don’t always go according to plan. Planes are late and accidents happen that throw off the normal trajectory of life. Sometimes, though, it is easier to face disappointment and suffering when you plan on it being that way.

Marching on

I found a job.

It’s a job I didn’t have on my radar last week. I was hired by a hospital to work in ER admissions. I never worked in a hospital before. The ER department sounds stressful but exciting. The only thing I really don’t like is being around sick people all the time. My immune system has been strong as of late, so I’m hoping it will stay that way. This is not going to be a 9 to 5 Monday through Friday kind of job. I didn’t want a job with those hours anyway since I have appointments for family members several times a month.

My mom had her follow up appointment this past week with the neuropsychologist. The test results showed a major neurocognitive disorder. However, more tests will need to be done before we know what kind of dementia she has because it is not presenting itself in the normal way. She will need a MRI before we know more, and maybe more testing beyond that. One type of dementia the doctor thinks it could be has a strong genetic component and is very aggressive. However, my mom is older than the age where it usually presents itself which is within the age range my younger brothers and I am. The thought is horrifying that I could have this ticking time bomb inside of me. I am trying not to think about it all that much until we have more answers. But damn is it scary. My dad’s side of the family has a strong genetic link for dementia as well. I may have to start doing some planning soon depending on the test results.

My mom has been very confused and frightened. It’s terrifying for her because her memory is still within the range of normal. However, her executive functioning is at 5%. She doesn’t have the mercy to forget something is terribly wrong with her. The doctor said she should no longer be driving. My mom will need to do a driving simulation test and if she fails that, she will no longer be able to drive. She is not supposed to attend appointments by herself and it is almost time to get her power of attorney paperwork in place.

Meanwhile, I have become Matt’s guardian and will meet with his case manager this week. There are several things I need to figure out, such as how to transition over the financial aspect of it. I am hoping to have everything in place before I start working full-time.

I have been trying not to let the stress get to me. Thankfully I have a lot of experience dealing with stressful situations so I know how to cope with everything. Last night Paul and I went with family and friends to see our son play in the band. It really was a great time. He will be playing again next weekend…so more fun. When we are all free, Paul and I play games with Arabella and her boyfriend which is fun. I did stand up comedy this week and went to trivia night with Paul and friends.

This week Angel will be coming back home from out East to visit. We will be going with her and a group of people to see the musical she was the music director for. It’s been a month and a half since we last saw her. I can’t wait until she comes home again. We have a lot of fun things planned.

The weather is slowly starting to warm up. I saw my first robin of the season yesterday. The snow is starting to melt.

What is coming next

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.