mom

Assisted living

/ Outrunning my demons / 4 Comments

I scheduled an appointment to visit an assisted living facility with my parents after my mom’s birthday in early August. They had two immediate openings for two rooms next to each other with a shared bathroom. They were willing to take both my mom and dad, although my mom needs memory care and my dad has a physical disability. We jumped at the opportunity. Finally a windfall!

My aunt threw a birthday party for my mom on her birthday which I attended. My mom expressed anger with me at her party for allowing my brother, whom I am guardian of, to have an unrestricted diet. It was all very awkward, being reprimanded by my mom in front of everyone in a public place. I told my mom we could talk about it later but at the moment we were there to have fun and celebrate her birthday.

My SIL also threw my mom a birthday party at the family cabin. It would probably be the last time she goes up to the cabin and maybe the last birthday she will be somewhat cognizant for. That in and of itself was depressing. Once again, my mom expressed anger towards me about Matt. I helped Matt make a plate of food for himself and my mom took half the food I put on his plate and threw it in the garbage. She was upset I forgot to bring his applesauce for him to take his pills. I also forgot a few other things I had no idea she wanted me to bring. She was so upset she wanted to leave.

Then last weekend arrived, the weekend my parents were set to move in. On Saturday we went up north and closed down the cabin for the season. Then my brothers and I sat down and talked for several hours about the plan going forward. What are we going to do with the house, cabin, their vehicles, finances, cleaning out the house, etc. My brother Luke said he was living off his faith to get through it. I said I was burning off my anger. It’s hard to have to grieve your parents while they are still alive, even more so because my relationship with my parents is complicated. I feel a lot of anger about how I was treated in the past and how the mess they made, we are going to have to clean up. Because of their hoarding tendencies, I think it’s going to take years to clean out the house. I hope I am wrong.

Then moving day came along. We went to my parents house to load up some of their belongings. My mom kept grabbing things to put in boxes. My SIL took them out and put them back. I decided to go outside with my mom to keep her out of their hair. My mom wanted to take a walk to her church down the road. I was the last one to walk with my mom down the only road that I could remember her living on. My mom stopped along the way to pull out weeds along the ditch. She carried them over to to a grassy area on an uneven pathway. I was afraid she might lose her step.

When we got to the church, mom wanted to walk around the cemetery and talk about people who died. I saw the gravestones of my ancestors and familiar names. My mom asked if I knew them, the graves of my great-great-grandparents. I said I did, but I didn’t really. I softly cried on the walk. My mom was always a fast walker, and I had to struggle to keep up. But this time she shuffled along and I was afraid she might not have the strength to make it all the way back.

This time my mom was kind towards me, almost childlike. I watched her say good-bye to her house, the only house I’ve ever seen her live in. The grief slipped from anger into sadness. My mom is gone now. She is leaving more and more every day.

The appointment, part 1

/ Outrunning my demons / Leave a comment

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

/ Outrunning my demons / Leave a comment

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 last full week of April

/ Outrunning my demons / 3 Comments

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.