grief

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.

Green light, red light 7

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It has been a whole month now since the mania and delusions started. Arabella is gradually getting better, but these kinds of medications take time to kick in fully.

The endless pacing back and forth has gotten slower but she can’t sit down. When she talks her voice isn’t as loud as if she is yelling. She no longer talks non-stop but she is still constantly interrupting conversations. Having a conversation in the room she is in is next to impossible. If we go in a different room, she might knock on the door.

She has become like that of a young girl, around 6 or 7. She has given up smoking. I’m not sure if it is because she now thinks she is too young or even if it will stick after all this is over. If it ever ends.

The voices in her head are quieting. I didn’t know she heard voices. She told us she thought everyone heard voices. Sometimes the voices told her to do awful things like cut or kill herself. Sometimes the voices she hears are like my voice. It can almost make sense to me why she thought I was tormenting her.

It’s exhausting. At times the suffering and grief is unbearable. Sometimes I think this is going to kill me. Sometimes I don’t even care if it does.

I am envious of people who in times like these can lean on their faith to bring them peace, comfort, and hope. As a seeker, I never can seem to find what I’m chasing after.

Why has this been what is chosen for me, my daughter, my family.

Green light, red light 4

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The aftermath after our daughter was committed was like that of a bomb going off. We were left with shattered lives and broken pieces of rubble. Shards impossible to put back together even as it was a few weeks before everything crumbled.

I can’t find the way back.

We both walked around like zombies afterwards. It’s even hard to focus enough to tell this story adequately. But that’s all a part of being in crisis mode. In utter despair our tears fell to the ground. Arabella was doing so well for the first six months after jail living at home. She found a job. We gave her a stable environment and that gave us a false sense of hope and control. The stress of her tonsillectomy was enough to send her into a relapse worse than we ever saw her in before. She was seeing things and talking to people who weren’t there.

I can’t find the road she is on.

The prognosis bleak, the illness severe. But it’s not the kind of illness where anyone brought her flowers and sent her cards to get well soon. There will be no speedy recovery. Schizophrenia, people shudder in fear and stay away as if it’s contagious. It’s not the mental illness offering up cutesy meme’s of awareness and support. It’s scary and shameful without go fund me and caring bridge pages.

I can’t find anyone who really cares.

I don’t want to talk about it over and over again to people who don’t understand. It’s exhausting in every possible way. I feel tired when I wake up. Bipolar mania, she needs support day and night. She needs support when I need to sleep. No, you can’t buy a snake. You talk too long and too loud. I need a break just to get the things done I need to get done.

I don’t have the strength to do this anymore.

Borderline personality disorder, sometimes you love me and other times you hate me. Which will it be today? It’s too much trapped inside of one body. Finally the doctors were seeing in the hospital what we were seeing at home. Right away, she signed an AMA (against medical advice) to come back home. They had 24 hours to evaluate her before she was going to come back home. Could we even take her back home? She had nowhere else to go.

I don’t know how to help her.

Sunday morning I tried to hide my swollen eyes as I went to church. I felt bitterness enter my heart. I didn’t want to see the happy healthy families. I don’t want to hear about kids going into the ministry. My daughter thinks she is God, does that count? It’s painful to see the normalcy all around me, like being impoverished while everyone is feasting on their riches. I don’t feel the joy or God’s blessings. I think I’ve been cursed since the day I was born. I don’t want to see suffering anymore. Sometimes I even get bored with my feelings of anger towards a God who is supposed to be loving.

Yet I can’t find the way.

What were we going to do? Where are the answers? What if she comes home too early in an agitated psychotic state? Do I call the police? Do I send her back to jail? Do I have her face her felonies or go to prison for an illness she didn’t choose and doesn’t have control over? How was I going to make hard decisions when I couldn’t even think? Decisions that could affect the rest of her life.

Yet I can’t find the way.

We had to find a way to get her to stay as if our very lives depended on it.

Where is the way?

Sitting in the muck

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It’s hard to believe the first half of December is over already. A few days ago, I finished writing my book. Now hopefully no new traumas happen like the first time I finished my book. After that, I ended up rewriting most of the book I earlier finished. I’m going to take a couple weeks off and come January I will start the editing process. I’m going to try to blog more often again.

It’s been a busy month as most Decembers are. I am ready for Christmas though. The gifts are all bought and wrapped. Now I just have to get ready to host several parties in the next week or so.

Last weekend we got together with Paul’s step-dad Darryl, his fiancé, and another couple we haven’t seen in about 20 years. Darryl’s fiancé’s dad passed away back in May. He was in his mid-90s. Darryl’s fiancé is still feeling a lot of grief over his loss. It’s hard for me to understand her level of grief as he lived a very full life. Her therapist told her she needs to go out more. So we went out and had a really nice time visiting and catching up.

I was starting to feel a bit jealous. Not only did Darryl’s fiancé have a great relationship with her dad, but her therapist told her to go out more. I wish my therapist would say things like that. Last week my therapist told me to sit in the shit. She said I needed to get comfortable with being uncomfortable.

Why can’t I be told to go out more and have more fun in my life??

How is it October already??!?

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I can’t believe it’s October already. It’s time to get back to writing more often again. Today ushered the end of the warm summer days. We covered our pool. It’s always such a difficult time of year knowing there will be many dark days ahead. I do love fall though. It is my second favorite season after summer.

This week the adoption papers went through for my shelter cat and right now he is sitting on my lap helping me type these words. He is such a lovey dove. I promise I will show you pictures very soon of my new pets. But right now we are trying very hard to get them used to each other without any big fights. No easy task which tries our patience.

We had some record high temps in the last couple of days. I did my best to try to get outside and enjoy them. Paul had a great birthday party last weekend. The weather was absolutely unbelievably perfect. Everything went great. We had a fire in the evening and the band played for a long time. We had a lot of good food. I did all the cleaning and cooking. But this time if people offered to help by bringing food, I let them. Even Paul’s stepdad brought a camper and parked it in our yard reminiscent of cousin Eddie in the National Lampoon’s. It’s really not a party until someone shows up with a camper.

Although, we did get some bad news. My friend Lisa tried killing herself. Her husband, who was working out of town, thought something was up and had the police check on her. By the time they got there, Lisa was unconscious and had to be airlifted to the hospital. They put her on a ventilator. This wasn’t her first attempt and I am very afraid for her. She had a very traumatic upbringing and experienced a tremendous amount of loss. She never got past the grief of the death of her daughter in a car accident.

When Lisa showed up at the party, she told me about how she was just released from the hospital. She looked terrible. I’ve never seen her so rough before. She had too much to drink. I really wish I could do something, anything, to help her. But through my own life experiences, I found there is nothing I can really do. I don’t have any control over it. I wish I did. Lisa is one of my best friends and if something happened to her I would be devastated.

Life otherwise has been busy but rather quiet. Just feeling worry about my friend…worry about the pets getting along with each other…the letdown after the big party…the end of summer…

One thing is constant and that is change. My son’s roommate moved out. Our neighbors are moving. I feel pretty neutral about it. The uncertainty comes with who is going to move in. Everything went good with them until they had a baby. Honestly, I think the guy is pretty embarrassed he yelled at my son and his friends for lighting off fireworks on the 4th. He lost his cool and I don’t think that happens often. He works for the foster care program and he was out yelling at some kids.

We finally met our other neighbors. They seem pretty chill. I told them we got two Beagles. They told us they have 10 free range chickens. What could possibly go wrong?? They also said if something happens to their chickens they wouldn’t be upset with us.

That’s about it. I don’t have big plans for the weekend besides preparing for my colonoscopy early next week. Sounds like a good time. Not!

Solving communication issues

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Last week Paul and I had our couples therapy appointment. I think we had a breakthrough regarding some of the communication issues we have been having.

What I need from Paul is to be relational. I want to know he feels the same way or has some of the same worries so I don’t feel alone in my suffering. Paul wants me to give him hope by telling him everything is going to be okay and offer encouragement. For the longest time, we have been giving each other what we would want for ourselves. That has proved to be a frustrating experience all around.

The second time Arabella went to jail I felt very fearful for her future. There is a myriad of feelings involved when your child is incarcerated. I have been feeling despair, hopelessness, anger, guilt, anxiety, uncertainty, shame, and fear. Nothing really associated with ‘positive’ feelings about any of this. Now I usually keep these feelings to myself and go into a nice dark corner to lick my wounds. But my husband has been rather distraught by my isolation so through therapy I resolved to tell him how I feel instead. He found he didn’t really like what I was feeling.

When I am feeling despair, his response is to trust in God and everything will be okay which usually makes me quite angry. What is wrong with me? Why does he seem to have this faith that I don’t? How am I supposed to get out of survival mode if all I am doing is trying to survive? Who is the person I was supposed to be if I didn’t have childhood trauma? Trusting? Trusting in God? How do I have faith when I feel if God exists he doesn’t really care about me? Maybe he doesn’t exist at all. Why does he allow so much suffering? Why do my prayers go unanswered? If I have already given control over to God, why is he choosing this for my life?

In therapy, I told Paul I really wanted him to try to be relational, like talking to a best friend. I don’t want him to fix, solve, or tell me everything is going to be okay. I want him to commiserate with me that sometimes life really fucking sucks. He has been making the effort. He said he also has doubts about God, feels despair about our daughter’s future, and questions why there is so much unnecessary suffering in this world. It made me feel like I wasn’t alone.

Paul wants me to give him hope and tell him everything will be okay. This has been a struggle for me because it doesn’t feel authentic. I don’t know if everything is going to be okay. Arabella might end up killing herself, hurting someone else, and being in and out of jail or mental health treatment centers the rest of her life. It’s very likely the life she will end up living. I think I will outlive my daughter. Where is the hope in that? I have been trying to offer up hope and encouragement even if I don’t believe it because that is what my husband needs.

So I guess in some ways it has been beneficial to have our lives fall apart so we are able to rebuild it into something better. There really hasn’t been much Paul and I haven’t been through in life and if we survive it, maybe we can help others.