Life

The appointment, part 1

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My mom’s first appointment the day her POA was activated was rough. My mom was crying and begging me to be able to have Matt overnight at her house again. Due to two recent medication errors, Matt’s case manager, nurse, and I made the call to not allow Matt to stay at our parents house overnight anymore. He was, however, free to visit them between 8AM and 8PM between medication times. My mom told her doctor she was not allowed to see him at all. Her primary doctor said she would be willing to be the second signature on the POA form and gave me the form to take to her afternoon neurologist appointment.

The primary doctor said that we needed to look for a facility to take care of my mom. She said that we should look into everything before it became a crisis and it has been at crisis stage for too long now. I told the doctor my parents wanted to stay at home and refused to go. My mom was adamant that my dad was going to take care of her. She said he was loving and supportive, which couldn’t be farther from the truth. Her doctor said in her 25 years of being a doctor, she only saw two husbands that were able to care for their wives and they had large families nearby to help. Not children who lived far away and were working full-time. She said worst case scenario was that I needed to call adult protective services to have them removed from their home.

After the appointment, I dropped my mom off at home and drove an hour to close the guardianship account my parents created for my brother back in the 90’s. The rep payee account had finally come through and I needed to close the old account. Upon arriving at the bank, the teller contacted her manager stating that I wanted to close an account that wasn’t mine. The manager said absolutely not as I pulled out the guardianship paperwork. The manager had to speak to the higher ups as I sat waiting in the lobby for an hour. When they finally talked to me, they told me the original account from 1994 was not set up as a guardianship account. Although I am now the guardian, they might still need my parents to come in to sign off the account because it was listed as a joint account. At this point, I was feeling really stressed. I was trying to hold back anger and tears as I explained I lived an hour and a half away. My dad can’t walk and my mom is losing her mind. Along with becoming my brother’s guardian, my mom’s POA was most likely going to be activated that afternoon.

I didn’t know when I would be able to come back with my parents. I took the day off to deal with everything. There wasn’t much else I could do and I had to be back for my mom’s afternoon appointment. After I left, I received a call from the bank saying the higher ups approved the closing of the account. I turned around and finally closed the account.

I picked my mom up for her second appointment of the day. She was still upset with me about Matt and was now crying because she thought she was going to be committed. The doctor was running late. After waiting for another hour, we finally saw the doctor. I explained everything that was happening, how my mom was getting worse since the last appointment. The doctor seemed upset she didn’t schedule to see my mom sooner. She signed the POA forms on the spot. Then she dropped the bomb of frontotemporal dementia. Since my mom was still crying, she asked if my mom was still on anti-depressants. I thought so but I didn’t go to that appointment with her. She told me my mom needed memory care ASAP. She said being at home was a major safety concern, especially with cooking.

I asked the neurologist about genetic testing. She said that I could if I wanted to but it was a waste of time because this condition is something you don’t have any power or control over and there is no cure. My thoughts turned dark, I would do anything to not do this to my own children and spouse. But I would have no idea I was losing my mind. For several weeks, I fell into a deep dark despair. I am still grieving the loss of my mother who is still alive. I am grieving the future I thought I would have. Angel did say something that made me feel a lot better which was that they were planning on taking care of me anyway whether I was in a wheelchair or lost my mind.

POA

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Last week my mother’s power of attorney was activated as I surmised.

The neurologist gave my mom the diagnosis of frontotemporal dementia (FDT). We suspected that was the case, but the confirmation from the doctor hit me hard. That did explain a lot of my mother’s bizarre behaviors over the last several years, like sending my daughter a picture of her ex on her wedding day. The other symptoms I noticed were narcissism, jealousy, obsessions, hoarding, being melodramatic, and saying hurtful and rude things. These are the symptoms that started first before the memory issues and confusion started. It all makes sense to me now.

It’s hard to say where my mom ended and this horrible disease began. How much of my pain and anger towards her were for something that was not even something she has any control over. The disease has been progressing quickly over the last several months. My mom can go from hating on me to love bombing me within minutes. It’s hard to be around her for long periods of time because it’s depressing seeing this disease ravage her mind. It’s difficult to not feel frustrated and annoyed.

I have been feeling a lot of sadness and grief following the diagnosis. It’s hard to see the goodness in life right now. After doing research on the disease, I found that there is a strong genetic correlation between FTD and schizophrenia. I am not sure if my mom’s family suffered from this. When my mom was a teenager, her mother died in childbirth. After her mother’s death, my mother and her siblings fell out of contact with her mom’s side of the family. My mom outlived her mother and oldest sibling by over 25 years, so we really don’t know.

Out of the eight siblings, my mom has a younger brother and sister with similar personalities/symptoms. Her sister with similar symptoms has a daughter with schizophrenia. My brother has schizophrenia and my daughter has schizoaffective disorder. I would say my chances of getting FTD are very high. My dad’s side of the family has a high rate of dementia as well.

I asked the doctor if I should get tested. She said testing would do no good, it is something I have no control over and something that cannot be cured. I am terrified of what I could become. If there is a silver lining…or gray matter…my family can be prepared in a way we weren’t with my mom. I just don’t want them to have to live that way.

The beginning of July

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It’s been a wild ride since the last time I wrote.

I thoroughly enjoyed the holiday weekend. On Friday we enjoyed listening to a local favorite band and enjoyed the fireworks on a perfect July evening. On Saturday afternoon, my son’s band played and afterwards we invited the band over for a pool party. Today has been my first whole day I’ve spent at home for weeks and I’m enjoying getting stuff done around the house.

Work has been hectic. Last week we got a new supervisor that no one likes. She is around half my age with no education or supervisor experience. I am trying to have a good attitude about it. She pretty much just stops in and yells at everyone then leaves us alone. I’ve heard she has no family, significant other, or life outside of being ‘bossy’. I am comforted that most of the other employees feel the way I do so we will stick together if things get out of hand. She offers assistance when we have been short staffed but never is around.

The day shift and the night shift typically have two employees working together. Unfortunately, it seems as if the irresponsible employee is always paired with an ultra responsible employee. Then when the irresponsible employee calls in, the responsible employee is left with all of their work. This happened last week with a lady who only works two days a week, she called in screwing the other employee over. They were both supposed to work the holiday. The irresponsible worker called in again and the responsible worker (who is a single parent of 4 kids) who never calls in called in afterwards. In that situation, the supervisor is supposed to work. I really think it was brilliant for the responsible worker to call in because maybe something will be done about it now. It’s getting out of hand and nothing is ever done about it. I am supposed to work with both employees tomorrow so we’ll see what happens.

Things have been crazy on the home front as well. My mom screwed up my brother Matt’s medications for the second time. I had to make the tough call to not allow my brother to go home overnight on the weekends anymore. This was very upsetting to my mom. But as my brother’s guardian I had to make the right call that him going home was a safety concern. I’m taking my mom to two doctor appointments this week, her primary doctor for a physical and to the neurologist. I wouldn’t be surprised if they activate the power of attorney for her this week. This week might change the course of our lives. We’ll see how it plays out.

On a good note, my brother Matt’s rep payee went through and now I don’t have to worry about paying my brother’s bills anymore. Large expenses have to be preapproved, so that should take care of my mom making huge unnecessary purchases she wants me to reimburse her for. Now I just need to take a couple hours to close out the old account. The switchover has been difficult, but once everything is set it will be great.

Dan should be spending the next couple of weeks at home after being out of town for work since December. They wanted to send him back out again right away, but he told them he wanted to stay around for a while. Now Angel will be out of town for work this week. They are busy people. It’s been good to see them more. Dan bought a new Tesla. The car drives itself. It’s unbelievable how much technology has changed over the last 100 years. I can see a future where drunk driving might be a thing of the past. Wisconsin is usually pretty drunk, especially on weekends. But on holiday weekends, people have been partying harder than usual.

That’s about it around here. Arabella’s friend should be getting out of rehab tomorrow so we’ll see what happens with that. Good thing she is getting out after the holiday weekend. I even saw some people who were embracing total sobriety drink. Not that I’m judging. I’ve gotten beyond that in my life as drinking is such a cultural thing here.

Next weekend will be my birthday weekend. I have a few fun ideas I am planning. Nothing big. But something to look forward to when life around me is nothing but chaos.

The end of June

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How is June almost over already???

I’m just trying to keep my head above water. It’s a big adjustment going back to work full-time. My days off tend to be filled with running errands, cleaning, and checking in/doctor appointments. I am thinking my mom will be ruled incompetent soon. My dad is listed as POA and I am secondary. Either my dad will take on being POA so he can force us to let them stay at home or he will resign and it will be on me. Neither are good options.

Meanwhile, I am changing things up with my brother Matt who I am now guardian of. I switched his account over to a professional payee which will be easier in the long run but is an adjustment right now. Things are getting really messed up because my mom is still getting some of the notifications about bills and doctor appointments. Then she is making arrangements for him incorrectly that I know nothing about. It has lead to a lot of confusion all around to the point where the group home thought he was missing a couple times my mom cancelled his transportation.

At times my mom still wants and thinks she has full control over Matt. She has been very unreasonable with his care and I am going to change that. This has lead to stress on my part. I had a nightmare that because of the changes I made that he became violent again. There is a sliver of doubt in my mind. What if my mom was right? What if I do the wrong things for the right reason? It’s a lot of responsibility.

Arabella had her doctor appointment in there as well. The doctor is decreasing her dose of her anti-psychotic medication due to weight gain that didn’t get better on weight loss meds. We’ll see what happens with that.

Alex’s car broke down, so I have been giving him some rides to work when I can. He moved back into the house which I have mixed feelings about. He is incredibly moody and can be hard to live with but I love him anyway. He is more of a responsibility than help most of the time.

Angel is still in the area. Thankfully since confronting her stalker neighbor, things have gotten a lot better. There haven’t been any issues. Dan has been on the road all month and will be coming home soon. But after that, they have no idea what they will be doing which has been stressful for them.

Paul has been working a lot too. I am thankful for him. He offered to take Matt to his doctor appointment for me when I was scheduled to work. However, the doctor’s office ended up rescheduling Matt’s appointment and I picked a time when I can take him.

I think I’m going to call this the summer of responsibility. I try to catch little breaks when I can. Yesterday I had the day off and went to lunch with my friend Jen. It’s the little things that keep me going right now.

The beginning of June

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Just like that Memorial Day weekend has passed, and we are well on our way into unofficial summer. I received an incident report from the group home after Matt went back after the holiday weekend. Apparently my mom mixed up his medication. If it happens again, I may have to rethink allowing Matt to go to my parents house over the weekends.

My mom has been messing up her own medication and my dad’s too. My SIL Carla spent several days at my parents house taking my mom to doctor appointments and going through her medications and cupboards. My mom had 30 containers of expired peanut butter in her cupboard. This was shocking to Carla, but my brothers and I were not surprised since my mom has been hoarding food for a long time. Carla also found out that the pharmacy has been filling prescriptions that were discontinued by the doctor. Everything is a mess. But my parents have been adamant about not going into assisted living.

After a long stressful work week, I finally am starting to feel relaxed. We just got back from spending the night on the boat and visiting with friends. Thursday night after work, I did stand up comedy. I even talked Arabella’s boyfriend into giving it a try and he did an excellent job. Friday ended up being a hectic day unexpectedly. The day before the motor gave out on our washing machine mid-cycle. Friday morning I had to go shopping to buy a new one. Then I cleaned the house. Afterwards Angel came over for a visit so that was nice. Paul and I rarely have the opportunity to spend time with just her.

The upcoming week will be another busy one. Next weekend will be my first full weekend to work. I will miss being home with Paul on Father’s Day weekend. I also have a doctor appointment with Matt on my day off. I have a feeling it is going to be a long week. Alex’s tour with his band is over now and he will be making his way back home. Hopefully he will tell us all about it, but he probably will not.

Nearing the end of May

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Compared to the last several weeks, life has been relatively uneventful since Arabella’s birthday last week. A cold wind blew this way and I am huddled in a warm blanket. Tonight Paul is cooking salmon for supper, then we are going to enjoy an indoor fire as I turned off the heat on the warm days. I don’t have the heart to turn the heat back on.

Angel and Dan are making their way back home after being gone for months for work. I haven’t seen Dan since Christmastime. It’s been a couple months since I’ve seen my daughter. They are going to be home for a couple weeks before heading back on the road again. This Saturday we will be having a get together with some of their friends over to visit.

As Angel and Dan are coming back home, Alex is getting ready to leave with his band to tour the West coast. He will be getting back as they are leaving again. That is okay though as Alex and Angel are not all that fond of each other right now.

My extended family will be heading up north to open up the cabin for the summer. We will all be working sometime over the holiday weekend, so we will not be there. I’m not too saddened by this as I am sure it is going to be a real shitshow. My brother Luke is not sure he wants to go. He is stressed out about going and I advised him not to go. We’ll see what happens.

Otherwise lately my life has been focused around work and doctor appointments for myself and others. I had my GI follow up appointment today which was relatively uneventful. For fun I’ve been watching Alex’s band play, going to trivia night with friends, and doing stand up comedy.

The last full week of April

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It’s hard to believe April is almost over already. The whole month seemed to go by in a blur. This was my first full week working in the ER shadowing other employees. So far so good, I haven’t been squeamish at all.

Paul and I spent my day off walking around the NFL draft area. Too bad I am not a sports fan, otherwise I would go all out. Paul loves football but he doesn’t get all decked out. I mainly wanted to check it out to people watch. We wanted to get some food from the food trucks but the line was a mile long and there was nowhere to sit.

The last two days have been cold and windy. Yesterday was downright miserable with highs in the upper 40’s with strong winds and rain at times. My son’s band was set up outside to play last night and we were absolutely freezing. I could see my breath it was so cold. Today it will get up to 60 and it will be sunny, so it should be a better afternoon and evening being outside to watch my son play in both the bands he is in. I am not driving so that is even better.

Absolutely everyone is sick, but somehow I managed to keep my head above water. For once my body has not failed me being around sick people at home and work. Arabella and I are the only ones who managed to stay healthy. Ever since Arabella got her tonsils out, she has not been getting sick every time a cold wind blows.

Angel and Dan made their way down to Georgia with their camper where Dan will be working the next week. They made the trek on Easter day. Dan drove the camper down in his truck while Angel followed him in her car. On the way, Dan’s truck broke down. He is driving a truck from the 1980’s. Dan’s dad is a mechanic who taught Dan everything about fixing vehicles. Thankfully they were able to make it to the campsite they are staying at. My daughter and her husband live a very frugal life which I am very proud of. But sometimes I just have to roll my eyes and laugh a little as they don’t have to live that way. Some of it is because I know we are the same way.

A couple things happened this past week that are worth noting. One day was particularly rough as I had an 8 hour day of reading policies for work. Over my lunch, I had a dentist appointment. They took my blood pressure before the cleaning and it was high. I have been checking it at home and it is still higher than it should be. I’ve also started getting headaches every day. Nothing major, but I never had headaches before. I am keeping an eye on things but I don’t have time for another problem. I’m too busy worrying about other things, like my mom’s blood pressure. Her doctor wanted her to come in and get tested as it has been running high lately.

Next week my mom has two doctor appointments. One is for a PET scan over two hours away from her house. My sister-in-law was going to take her but she backed out. Since it is on my day off next week, my husband and I will be taking her. I am not looking to 5+ hours of driving. I am really hoping to get some answers with this test as her MRI results were inconclusive. I still haven’t found anyone to take her to her other appointment yet.

The other notable thing that happened was that I got asked to be one of the comedians for a comedy show on Mother’s Day weekend. Patrons will need to pay to get in and I will be getting paid to be in the show. Not too bad for someone who just started doing stand up comedy a couple of months ago. Who would’ve guessed?

This weekend I am looking forward to my son playing in his bands. The biggest challenge will be finding a work/life balance trying to take care of my mom’s health without neglecting my own. I do have some fun things planned during the week such as trivia night and stand up comedy. I will plan on making time to do another update next week.

Middle of April update

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I am getting into the swing of things with my new job. Last week I had the online orientation. This week I took two classes, yesterday and today. Monday I shadowed an employee doing registration in the ER. It was a hectic day as one of the employee’s called in. The person who was training me said it’s always busy there and they can barely keep up with the work. The company I work for manages two ER’s, one is always busy the other is not. Most people want to work at the ER that is not quite as busy. But I, along with the trainer, would rather be too busy than not busy enough.

Next week I will start training with the ability to login as an employee instead of just watching. I will be working full-time next week which is going to be super crazy busy with the NFL draft in the area. I am going to be seeing a lot of things. It seems like in the one day I already have.

All is well in the home front. My mom made it to her MRI appointment without me having to take off work. I had a marvelous weekend, although once again I stayed up way too late. This weekend is going to be a lot more low key. We are planning on having people over for Easter, but nothing too big. I have to work all day Thursday and Friday. Tomorrow night I am planning on doing stand up comedy.

This week I washed the windows and put on the screens as it might get into the 60’s.

We found out yesterday that my daughter Angel and her husband will not be home for another month. We thought they would be home by the end of this month. This weekend Dan will be done with his job in Virginia and they will be moving their camper to another job site in Georgia. Dan hasn’t been home since Christmas. Angel stayed home through January which was a bit of a problem as her next door neighbor wrote her a love note in January. She wasn’t comfortable there by herself because of that. She recently got footage on her Ring camera that her neighbor was looking into her windows. Thankfully when she comes home, Dan will be with her to have a conversation with the creepy neighbor.

That’s all for this week. So far the new job seems interesting and I think I will really like it.

Happy Easter!

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.