frontotemporal dementia

The year of May

/ Outrunning my demons / 2 Comments

I feel as if a whole year has passed this month.

Yesterday was my mom’s funeral. Right now I feel like an empty shell of a person. Numb, nothingness, just trying to make it through the next couple days.

We knew it was going to happen. We just didn’t know the when. The last few weeks have been a blur. My daughter’s baby shower, we spent so much time preparing for, gone. Bountiful, beautiful baby girl gifts sweet watermelon pink. Family, friends, strangers to me celebrating the gift of life to come. The following day, Mother’s Day.

In the morning, Angel, Paul and I went to visit my mom. We had a really good visit. My mom seemed to know what was happening around her and we took some pictures with my mom’s hand on Angel’s pregnant belly. The only 4 generation photo that will ever be. Later that evening, as we were going out to eat where Arabella works for Mother’s Day, as my plate was set in front of me I got the call. My mom was having some sort of cardiac event. I told everyone to finish their food and then we would embark on the 45 minute drive to see her hopefully not too late.

Sunday night they called the family in. Little did we know she would live another 5 days. For those next five days, we spent every waking minute possible with her. I spent countless hours in a folding chair just sitting there watching her breathe. We only took time away to eat and sleep. My brother Luke came home, along with two of my mom’s sisters. We sat with her. She seemed happy to see us and sad when we left, although she was no longer able to speak, eat, or drink. We gave her liquids on a sponge. Near the end I remembered one of her favorite drinks from ages ago, Blue Moon beer mixed with an apple cider drink. She opened her mouth wide to take it in and closed her mouth tightly when I tried to take the sponge out.

Alex found an old piano down the hall and started to play. We had the hairbrained thought to bring the piano into the room, which we did and Alex played beautifully for his grandma. The last day we saw her was the hardest to leave. We stayed until the early morning hours. It was the early morning of Arabella’s birthday. We had plans for later in the day. Alex had a big gig to play at and Arabella wanted to go for her birthday. We were almost to the show when we got the call from Aunt Jan saying my mom had passed. I decided to wait until he was done playing to tell him. Although it was a difficult time, we knew we did everything we could to make her passing a time of great love. We were there as much as we could be and have no regrets about that.

It was a time of great sadness, but also one of healing and mending old wounds. We also spent a lot of time with my dad which gave us mixed feelings since he was never much of a dad or grandfather. He was there for my mom at the end, but in a way he had to be since he was sharing a room with her at the nursing home. He decided he didn’t want to go to the funeral. He didn’t want to be a part of the planning in any way. My brothers and I did all the planning. Cremation or burial? What to wear? What type of headstone? I was the one who told my brother Matt that mom went to heaven and wasn’t going to be coming back.

Yesterday was the funeral at my childhood church. It was hard to believe the woman in the casket was my mother. It didn’t look like her. She lost so much weight at the end. I thought at any moment she would walk into the room and this was all just a dream. I thought for a minute I caught a glimpse of her walking away, but it was just her sister not her. Then came the family, friends, and strangers to me celebrating her life with me. It was rather overwhelming seeing relatives I don’t recall ever meeting. People came from far and wide, my mom was worth remembering. Some said to forget the woman she became in the end and remember the woman she was. None of this has really sunk in yet.

I was able to reconnect with a cousin who lives out of the country who happened to be home visiting. She said she has a lot of family videos with me in them and wanted to send them to me. I also reconnected with a close friend, who used to date my brother Mark, who came to the funeral. I haven’t seen her or her husband in over a decade. We used to get together and play bridge. I’m not really sure how to navigate this new motherless world. I am happy her suffering is over on this earth. I know I haven’t had much down time to process everything yet. I will be busy working the whole holiday weekend, but after that maybe everything will sink in.

April’s crying

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The snow is gone and the grass is green, almost in need of the first mowing.

The floodgates opened and April came in crying. For a whole week, we had torrential downpours. We lost power for an afternoon. Rain water seeped into cracks of our very foundation we never knew we had before. I had to throw away a few things, but compared to others it wasn’t a big deal. Several nights driving home from work, the lightening flashed like a strobe light. The rains flooded area streets and you couldn’t see it coming even as you were driving through it. Hail cracked at my windshield. The first hit like a stone throw. What is happening? Crunching golf balls under my tires. Do I drive across it like I’m driving through snow? This was new territory even for me. How do I navigate it?

My mother is dying. I think it will be soon. I am asked which funeral home. Does she want to be buried or cremated? Will I be calling one of her siblings to tell the rest or will I be calling all of them? Mother’s Day ads. Songs about mothers on the radio. Songs about the passage of time. I can’t cry on my way to work. Old pictures. I had better set some aside. What will she wear? She is just skin and bones. How can they repair?

How can you sum up a life in an hour or two? Then she will be gone forever. Just to leave me behind with only the memories we shared. Was I good enough? Will I have regrets? What was her? What was her diseased state of mind? Maybe if I had more compassion instead of irritation.

This is new territory. How will I navigate it?

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.