The appointment, part 1

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

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

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.