frontotemporal dementia

No kidding

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Life has been busy the last couple weeks with the holiday season rolling in and working full-time. I will be working every day this week except Christmas day. Although I like my job, I am not looking forward to this week since I will be working the next 6 out of 7 days.

I had this weekend off. My uncle and cousins flew into town from Texas to say good-bye to my mom. We were told this past week that the nurse was considering putting her on hospice tomorrow. She had a UTI over the past couple of weeks that speeded up her trip downhill. I kind of blamed myself for that, although I know it’s silly. The times I took her out of the assisted living facility I had to help her with the bathroom and I told myself I didn’t do something right. Why do we tend to blame ourselves for things outside of our control? I realize it’s foolishness.

Now my mom is struggling with daily activities more, like walking. My mom was always physically active so it is hard to see her like that. The dementia is starting to ravage her body now as much as her mind. She still knows who I am, but she just repeats nonsense words. She kept saying no kidding over and over. But her voice was so quiet I had to go closer to hear expecting something meaningful, but just to get a no kidding. The rest of the time she just blankly stares at me.

No one knows what to say when they don’t feel like there is anything they can do to change the situation. I just feel this nagging sadness and overall numbness right now.

No kidding.

A harsh winter is on the way

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Just like that, the holiday season has begun. Winter weather came along with it blowing its harsh cold winds. We have snow on the ground and had a few days of subzero wind chills.

We hosted Thanksgiving here which turned out being very busy with a total of 18 people. The weather was very cold and I am thankful Angel and Paul decided not to run the Turkey Trot in order to help me out more. I didn’t ask them to forgo the race to help me, but I couldn’t have done it without their help. They helped me pick up my mom and Matt to bring them to the party. I didn’t know it yet, but my mom’s health had declined since I last saw her.

I dished up my mom and Matt’s food, giving my mom easy to eat foods and Matt whatever he wanted. My mom didn’t even notice this time when Matt ate foods she wouldn’t let him eat. This was confusing to Matt. He didn’t understand why he didn’t get angry when he ate foods with gluten. He asked mom if it was okay and she didn’t respond. I told Matt that God had healed him and now he can eat whatever he wants and be fine. Matt said some day mom would be healed when she goes to heaven. Matt said he would have lots of energy when he gets to heaven and that he would be able to run very fast. Oh, to have the faith of a child and be ignorant of everything around me.

My best friend’s family also celebrated Thanksgiving with us. The youngest member of their family arrived in late summer. I spent some time holding the new baby and feeling jealous of my best friend who now has 4 grandchildren and another on the way. I spent the weekend after Thanksgiving working and this past weekend we had our first Christmas party with my mom’s siblings and their families.

It was a difficult family party because everyone there spent some time saying good-bye to my mom. It will very likely be the last Christmas we spend with her. My mom didn’t talk a lot but when she did it didn’t make much sense. She told everyone she died on her birthday. And in some way she sort of did. Back in August, she was angry with me and agitated she wasn’t in control. Now she doesn’t seem to even care. She needs help going to the bathroom and even eating. We had a heck of a time getting her in and out of the vehicle. I wasn’t even sure we would be able to convince her to go anywhere.

My mom is almost gone now. The family has been coming to say their good-byes. I’m going to try to see her as much as I can before she is gone. In many ways, I wish we knew what was going on much sooner. Maybe we would’ve been less frustrated with her inappropriate behavior. I can’t pinpoint when my mom first left us, but she has been gone for several years now. It started so gradually, but now the time is going fast.

Assisted living

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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

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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.