Author: Outrunning my demons

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.

The last week of May

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After working on Friday, I had the rest of the holiday weekend off. Saturday we threw a party for Angel and Dan, kind of a welcome home and all the holidays/birthdays they missed in between. It’s been great to see them again. I haven’t seen Dan since Christmas and Angel since March, so it’s been awhile. The weather was nice and the party went well.

Alex left on his West coast tour with the band. Arabella’s friend and Alex’s love interest left for rehab. A lot of changes happened over the last couple of weeks. I had to do a colon cleanse yesterday but the rest of the weekend so far has been relaxing. I am finally finding serenity in my life. I’m refusing to take responsibility for the choices of others which has been more freeing than not caring what others think of me. Along with that, I probably made some family members upset by not going up north this weekend to open the cabin. But, oh well, they can be haters if they want to be. Nothing I say or do will change them anyway. I will probably go up north next weekend.

Angel and Dan had to have a talk with their next door neighbor. The 60 something year old guy next door who lives with his wife, daughter, and grandchildren has been prowling around the house. Earlier this year, he sent my daughter a love note and was messaging her so much on Facebook that she ended up blocking him. Then they got Ring doorbell videos of him looking in the windows and trying to get into their house. Once they returned home, they printed off the images and gave them to his daughter saying if he comes back again they will be calling the police.

Incidentally, I received a message from a high school boyfriend who sent me a screen shot of a song on Spotify called Hold Me Now by the Thompson Twins. Then he sent that he was thinking of me with a heart. What a bunch of whack jobs. I didn’t respond at all. We are not Facebook friends. It’s been almost 10 years since he asked if I was happy in my marriage. My gosh, I dated him when I was a teenager. I’ve been with my husband almost 30 years now.

Not much else is happening. The next four days I will be working and on my two days off I plan to go up north with my kids.

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.

Middle of May update

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The clock keeps on ticking and time seems to fly by. Today is Arabella’s birthday and I have the day off of work. We’re planning on getting our nails done and going out to eat.

Life has been eventful as of late. I ran into an old friend of Arabella and they reconnected which lead to a whole bunch of excitement. Let’s just say that several nights were spent drinking. Literally whole nights where I woke up in the morning and they were still up. Arabella’s friend was doling out shots the whole night and come morning she was totally wasted along with my son. Through their intoxication, they realized they were totally in love. Arabella and her boyfriend were trying to talk both of them to go to sleep and figure things out later when they were sober. I awoke to Arabella’s boyfriend yelling at Alex.

Alex could barely walk as I walked with him to his room. I’ve never seen him so drunk. He had to perform in his band later that evening. By this time I was fed up with the whole lot of them. That evening was more of the same. Arabella’s friend was flirting with much older strangers talking them into giving her cigarettes and buying her shots. Paul had enough of it and ended up confronting the girl and telling her she was no longer welcome at our house unless she got her drinking under control. She already has been cut off by her family and has an ignition interlock device on her car from drunk driving. I hope she gets some help and figures her life out.

This was the first time Paul told someone they were not welcome here due to their drinking. Believe me when I say her drinking was pretty out of control for Paul to say that being a drinker himself. We were both afraid it would jeopardize Arabella’s recovery and if she started dating Alex the relationship would be toxic to say the least. They probably would both take their drinking to new heights.

We were sad to see Arabella’s friend go. Arabella doesn’t have many friends and this girl has been a good friend to her in the past. The rest of the weekend was pretty mild compared to this. Mother’s Day was almost uneventful. Paul and I took my mom and Matt to her church. My mom and brother displayed inappropriate behavior both passing gas several times in the pew. My mom was very confused. She couldn’t seem to reason that she needed enough room for 4 people to sit. But in some ways I enjoyed going to my childhood church. One member said I look more and more like my grandma the older I get. It made me feel good to receive that compliment and to be around people that remembered family long dead.

The rest of the time with my mom was stressful and I couldn’t wait to leave. She was confused about her medication. Earlier in the week I received a call from my dad who said that she took too many pills and ran out. She gets angry and emotional easily. Her food hoarding has gotten out of control. She wanted me to reimburse her out of Matt’s account (I am now his guardian) for over $200 worth of food which included 8 bags of gluten free flour and a dozen containers of breading.

Some good things did happen so far this week. I met with my therapist who said I am in a good spot and after almost a decade said I didn’t need therapy anymore. I saw a quote recently I thought applied to this which said that as someone with Complex PTSD we don’t need to know how to survive trauma and pain. This is something we are used to dealing with skillfully. What we need is to know how to handle joy and happiness, something I never learned how to do. It really resonated with me.

Over the next couple of days, I am looking forward to spending some time with Arabella for her birthday. Alex’s band is playing outdoors this weekend. Early next week Angel and her husband will be back home for a couple weeks.

Mayday

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This whole past week has been hectic, almost overwhelmingly so. Although yesterday I did make some time for fun checking out area rummage sales, eating where my daughter was waitressing, and watching my son’s band perform.

The week started with taking my mom for her PET scan appointment several hours away. Hopefully we will have some results soon. Then I worked Tuesday through Friday at the ER. So far I’ve seen a lot of interesting, horrible, and sad things. I wonder when I will become apathetic towards others like my co-workers seem to be. You almost have to be in that setting to keep the suffering from bothering you.

The rest of the week went by in a blur. This next week will probably too. I will be working the next four days and have Mother’s Day weekend off. Unfortunately the Mother’s Day comedy show has been cancelled. I have this feeling that most comedians are like artists and musicians who are so focused on the creative that they overlook the structure.

My plans for Mother’s Day weekend are volunteering, going out to eat while my daughter is waitressing, and watching my son play kind of like this past weekend. But it is what I enjoy doing. Angel and Dan will not be home for Mother’s Day weekend. They moved their camper from Georgia to Alabama to spend the next couple weeks at a new job site. But they will be home soon!

I am also planning on going flower shopping this next weekend for a couple planters for my patio and as a gift for my mom. Just this past week everything got green. The buds are almost turning into leaves on the trees and the grass is starting to grow.

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.