genetics

17 thoughts

/ Outrunning my demons / 4 Comments

This summer has been very busy and unfortunately I haven’t been able to set aside as much time as I would’ve liked for writing. Here is a summary of what has been happening which may or may not lead to future posts about the events.

  1. My mom’s POA was activated after a diagnosis of frontotemporal dementia.
  2. I set up a tour for my parents of an assisted living facility. They will be moving in this weekend.
  3. My brothers and I will be meeting over the weekend to make some hard decisions about what to do with my parents properties, vehicles, belongings, etc… As my parents are hoarders, this could take more than a year to straighten this mess out.
  4. I am still dealing with guardianship issues with my brother Matt in terms of his finances and health. My mom has been very angry with me that I am allowing him to have a diet with no restrictions. There will probably be more about this in a later post.
  5. Arabella broke up with her boyfriend. It was more of a mutual breakup and they left on good terms.
  6. Arabella has less than a month of probation left.
  7. Angel and Dan moved their camper from North Carolina to Indiana. They are doing great, but it’s been an adjustment this year not seeing them often.
  8. Paul had genetic testing done for cancer. On the test, 76 out of 77 screenings came back as normal. The other was neither negative or positive as they don’t have enough info to be certain if it’s a problem area or not.
  9. Our dog jumped the fence and was missing for 24 hours. We looked for him everywhere. We thought he was a goner until the following day when I came into the house to find him laying on the couch like he never left.
  10. The dog ran away right before I had to leave for work. That day I went in late. I left a message for my supervisor who didn’t bother to ask if we found our dog. I think that was the point where I started to despise my supervisor. The company I work for and the management really suck as I’ve seen them screw over the employees. This left me in a hard spot. I really like my job, the people I work with, and the patients. But is that enough for me to stay with a company I have no respect for because they don’t take care of their employees.
  11. Talking about employees, a previous problem employee of ours when we ran our company was convicted of felonies which landed her in prison.
  12. For the first time, I was called to go in for jury duty and was selected to be one of the jurors for a felony case involving the se#ual assault of a child.
  13. I decided to have three rings resized that were a gift from my mom when I was in my 20’s. It means a lot more to me now that my mom is ‘gone’.
  14. My son moved back into the house. He is doing really well as a musician, having a full-time job, and starting a business on the side. But in other ways he is not doing well. Like his dad, he struggles a lot with his drinking. At least at this point he is acknowledging it’s an issue he needs to work on.
  15. I really think that now is a good place to end my memoir. It’s been six years since I started it. I even finished it at one point, but life kept happening.
  16. The bar I made my stand up comedy debut in shut down. There are other venues I can try out though.
  17. There are so many things I probably forgot about…

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.