Fears

We suffer alone together

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And so it begins again. This time with a different child.

Five loud raps on the front door, and the baying of the hounds. Something seemed wrong, but I couldn’t tell if I was awake or dreaming the whole thing. I heard his voice, arguing with someone. What is going on I thought as I dragged myself out of bed and towards the door.

The police were here, my son pleading with them he was fine and they should leave. He saw that I was up and became angry they woke me up. What is going on? Why are the police here in the middle of the night? The officer said they were here for a welfare check on my son. Someone called to tell them my son was planning on ending it all that very night. Alex was arguing he was fine and didn’t want their help. I ran to the bedroom to wake up my husband.

He wasn’t fine, my son. He was drunk and suicidal. I took him aside in another room as my husband spoke with the police. He told them he would stay with our son. We spent the next hour and a half listening. My son said he couldn’t do it anymore, live. He spent most the night curled up on the floor sobbing.

He was scaring his friends. Getting drunk and walking in the middle of the road at night. Wanting to borrow a gun. Talking about death and loneliness. They didn’t know what to do. Some contacted us, someone called the police, and most just walked away. I went to bed. My husband stayed up all night. Alex fought and made it through the night but missed his work meeting in the morning.

I had a restless night’s sleep and got up for work like usual the next morning. I didn’t tell anyone or talk about it because these kind of illnesses no one brings a casserole for. He was embarrassed and ashamed of his fight with the demons no one else can see on the inside outside.

Through this we suffer alone together.

He lost his job last week. Fired.

We long for the best and fear for the rest.

I hope he can hear our offerings over his cries for help.

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.

Safe people

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I spent the last couple of days in Wisconsin Dells, the waterpark capital of America. I never really understood why the waterpark capital would be in state with such a cold climate. But I’ve learned not to question such things and decided to hop in the car for a little road trip. I was accompanied by my husband, son, and his girlfriend.

We were there to celebrate my son’s belated birthday. (His birthday was on Father’s Day). And more importantly, we were celebrating Alex going back to tech school and obtaining several certificates in music. He recently found a job in a music store which he seems to like. Meanwhile, he is still creating music and performing with his band. Maybe, at 24, he is finally finding his place in life and figuring out who he is and what he wants to do.

We went after rescheduling the trip three times. The weather this summer has been very odd. It seemed to rain every other day. Every time it rained, it really poured. But you know what they say about the third time. It was a real charm. We had sunny but not overly warm days. The best part, because it was so close to school starting, we didn’t have long waits in lines. We had a great time.

I didn’t go on very many rides. I never had a high tolerance for intense rides, but now my tolerance is much lower as I age. Lexi never went to the outside waterparks before. Thankfully she liked the intense rides so my son didn’t have to go alone. About half the time Paul went with as well. I didn’t mind sitting and watching. It was kind of fun to just watch them.

While I was at the bottom of the slide watching for Alex and Lexi, Paul left to head to the bathroom. He came back a few minutes later with a little girl and a baby in a stroller. What?? Apparently the little girl was frightened because she couldn’t find her parents. She came up to Paul and asked for help. She left the baby in the stroller and walked around with Paul in search of her parents. I went to the stroller and looked inside. There was a sleeping boy somewhere around 18 months old. The girl told Paul she was 6.

I felt a surge of anger rise up in me. What kind of parents would leave their 6-year-old in charge of a baby so they could go on rides?? After about 10 minutes, the girl saw her parents coming off of a ride and her anxiety and fear visibly turned into relief. Paul comforted her the whole time and reassured her that her parents were coming back for her. Then he delivered the kids to their parents and we were on our way. I asked him if he said something to the parents about keeping a better eye on their kids. He said he didn’t because the parents were from a different country with a culture different from ours.

I said it shouldn’t matter. Responsible parents don’t just leave their little kids behind to go on rides. Geez, what could possibly go wrong? Two little kids left alone around water not far from the wave pool. The little girl asking a stranger, a man by himself, for help. Good thing she asked Paul. And I was afraid to leave behind my phone to go on rides. A million scenarios were going through my mind about what could’ve happened to those kids, none of them good.

I wish I could say I didn’t see the kids again, or better yet I saw the parents taking the kids on rides. But I saw them two more times at the park. The second time I was sitting at a table waiting for my clan to get off a ride. There they were at the table next to me. I went over and talked to the girl who was sitting on the table. This time the baby was awake and babbling in his stroller. The girl was no longer afraid being left behind. She spoke to me until my group got off the ride and we left.

The third time I saw the kids, they were sitting at the same table. The girl was sitting on a chair dozing off in front of the stroller. It seemed like she had been waiting for a while. I felt fearful for them. I wanted to tell off the parents. Paul asked me what I was going to do that was going to change things for the kids. Paul was right, there was nothing I could do except be a safe person for those kids. Although telling off the parents would make me feel better, it could lead to a worse situation for the kids.

I had to let it go and focus more on what I can influence and change. In that moment, life was good. We were on a mini vacation celebrating my son’s accomplishments. The weather was good. The parks were quiet. And for a moment some tiny hands reached to ours knowing we were safe people.

Aloha!

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Paul and I just got back from our trip to Hawaii. Over the next several days I will be posting about our travels. I’m glad we were able to go. It was looking iffy about whether or not we would be able to go. Arabella was in crisis mode right before we left experiencing mania and psychosis. I felt like it would totally crush my spirit not being able to go. But I also felt guilty about leaving her. Some time there is not such a thing as good timing.

Paul and I worked hard to make the trip possible. We set up a meeting with a social worker who is working on getting Arabella a case manager. We had Alex and Lexi set up to watch over Arabella and our pets with Angel and Dan being the backup for them. Then we also had our best friends being backup for our adult children.

We were gone over Easter which was a different experience altogether. I felt a little bad for leaving over the holiday because I didn’t want Alex and Lexi to have nowhere to go. Arabella was spending the holiday weekend with my mom. Thankfully Angel’s in-laws invited Alex and Lexi over for dinner and even got them little baskets of candy. It warmed my heart to see them having a nice time without me.

I was worried about how things would go at home. But like most of my fears, the bad things I worried about didn’t end up happening. And the things that actually did happen were not expected. Such is life.

We ended up having a snowstorm at home while we were gone and the power was out for over a day. The power came back on in the wee hours of the morning right before we got home. Thankfully the refrigerator was pretty empty so we didn’t lose a lot of food. There are still some people without power from the storm. The yard is full of sticks and small branches from the strong winds which is really making the dogs happy.

Overall, though, everything went as good as it could. The medication is finally working and Arabella is no longer psychotic. She is doing so much better which is a great relief for us. We are slowly digging out of the pile of laundry, emails, and cleaning. The house is still standing.

We had a wonderful getaway.

Green light, red light 5

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Another crisis was averted when Arabella rescinded the release order she signed the day after her voluntary commitment. Paul and I decided it was time for us to visit Arabella.

We arrived during adult visiting hours in the evening. Once again we had to lock up all of our belongings including our cell phones and sat in the waiting room with a sad lot of people. Like in an elevator, no one looked long at each other. We all got swept by the metal detector screening us for weapons. Then with a buzz the outside door unlocked and we silently walked down the long hallway into the cafeteria where we waited for our loved ones to arrive.

It seemed like we waited a long time for Arabella to arrive. Everyone else arrived before her. We watched while the others embraced with a smile and sat down as if in a regular restaurant to have normal conversations. Arabella arrived in disarray clutching a notebook with the word password written on it. She said password was the password and if we could read it, we could look inside. She cautioned us that the hospital was bugged. First we had to bug the system to debug the system. It was strange because they were having issues with their phone system which Arabella slid comfortably into a delusion that everything was bugged so we had to go to a different algorithm.

Arabella said she was a genetic freak. She was born of one woman and two men. She had an extra chromosome. She said she was colorblind, men can only see primary colors and women can only see secondary colors. She said she liked apple juice because she ate from the tree of knowledge of good and evil. When she ate she knew all the answers to all the problems of the world.

She said she needed Bryan to come to the hospital because he was her soulmate, her other half. Her bloodwork wouldn’t be complete without him coming in the have his blood drawn. They were storm chasers and she could leave now because it wasn’t storming. She spoke of science, DNA, physics, time travel, and biology. The things she was saying had an iota of truth but was jumbled and didn’t make a lot of sense. She was unable to hold a conversation with us.

But the most troubling thing was that she was slurring her words off and on. We noticed that when we were talking on the phone several times but thought maybe it was from being sedated. She held her mouth funny at random times and words almost seemed to whistle through her teeth. She said she couldn’t talk because no one ever showed her how to talk right. She also said no one ever showed her how to brush her teeth and she had gingivitis.

We were very concerned about her new symptoms. Then she started singing. They said sometimes she would sing loudly in her room. When visiting time was over, the patients had to line up on one side and the visitors on the other. Arabella went her own way and started to take one of the signs off the wall. We told her she couldn’t take the signs off the wall.

We left in shock. Our daughter was still gone. Would she ever be the same again?

Green light, red light 3

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Arabella said she would go to the hospital if her dog Bryan could go with her. We waited for what seemed like an hour for the crisis center employee to find an open bed. Afterwards, she told us she found a place for Arabella. However, they would not accept dogs real or imagined. Arabella said that was okay because she was on the same wavelength as Bryan so she could take him in her mind. As soon as we could, we left for the hospital. The officers reminded Arabella to follow the rules and they left as well.

The ride to the hospital was long, not in distance but in endurance. Although it was late morning, I was exhausted. Arabella kept talking about algorithms, time travel, and said strange things like her dad wasn’t her dad. She didn’t have a dad, but then all dads were collectively her dad. She wasn’t making a lot of sense and I just tried to listen and placate her until we got there.

We went along with Arabella into the assessment room. We had to lock up all our belongings in a locker before we could enter. They took a wand to sweep over our bodies for weapons. Finding none, they opened the door with a badge and took us into the assessment room without windows. Once we entered, the door locked behind us closing us in the small room with the assessor.

There was paperwork to fill out and questions to answer. We didn’t have all the answers, but most of the time Arabella answered with green light, red light so we gave him our best guess. When was the last time that Arabella felt suicidal? We didn’t know. She was having a hard time being present. At times, she would laugh at nothing. When I asked her why she was laughing, she responded she could see lights and diamonds all over the walls.

On some forms, she wrote down that her name was God. She didn’t know how old she was because she was in an alternate world with alternate time. The questions she answered either yes or no almost angrily without expression. She told the assessor that she was married to Bryan and she lived with him. She said she was the president of the United States. About ten minutes later, the assessor asked Arabella if she was the president in which she emphatically answered, “What, NO.” She said she was several cartoon characters.

Arabella tapped on the assessors computer and said the computer was bugged. Then she stopped answering most questions and asked us repeatedly as her parents whether we chose red light or green light. If we answered green light, she said it was time to go home. If we answered red light, she said it was time to stop and go home. She wanted to get back to Bryan who was waiting for her at home.

After awhile, I asked the assessor what time it was. I made lunch plans with my friend Jen several weeks ago. Earlier in the morning, I pushed the time back to 12:30. It was already past 12:30. I asked the assessor if I could be let out to check my phone. Jen texted me 10 minutes earlier to tell me she was waiting for me at a table. What was I going to do? I asked the assessor if he thought it would be a while yet. He said the assessment was a lot more complex then he thought and would probably be a while. I decided to meet up with my friend and left Paul behind with Arabella.

I ordered a large pizza to bring some food back for him. We left in such a hurry we didn’t bring anything with us to even drink. In the hours we were there, we were each offered a small bottle of water. That was it. I quickly stopped back home to check on the dogs and grab my glasses. Everything was just as we left it. The lights were on and the coffee mugs were left on the table. As I was heading back I received a text from Paul saying he was ready to go home.

It was a miracle he was able to talk Arabella into admitting herself into the hospital to receive help. We were in a crisis mode, but the good news was that the doctors were finally able to see Arabella in the psychotic state we were telling them about. The last time it happened, she got arrested.

Freezing to death

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I naively thought we might have escaped the harshness of winter with our unseasonably warm December and start of the new year. Until last week, that is. We got hit with several snowstorms and kicked the weekend off with a blizzard. Then we plunged right into arctic cold wind chills.

Paul was supposed to go on an ice fishing trip in the far north woods of Wisconsin. The mild winter only produced a couple inches of ice on the northern inland lakes and Lake Superior has open water. Usually by this time of year, people are driving their trucks on the lakes and have their ice shacks set up. This year with the weak ice followed by a blizzard then arctic cold, the trip got cancelled. Although the ice is forming fast now.

While Paul was gone, I had plans to go on an overnight trip to a casino. My friend Sue, who won a small jackpot months before, had to be present for a chance to win a car and $100,000. Paul said since his plans got cancelled, he would be willing to drive us there in his truck. But with the weather, we weren’t sure if we were going or not. Normally the trip takes us two and a half hours. But since half the trip is small towns and back roads, no doubt it would take a lot longer. The side roads would be snow covered and slippery since ice doesn’t melt in subzero temperatures if the roads are not plowed right away.

We decided to brave the trip. If we waited for perfect weather conditions in our state, we would be hibernating half the year. Late Saturday morning, Paul and I set off for our trip with Sue and her husband. We had supper at an Italian restaurant with really good food. Then we went to the casino. The drawing for the car and chance to win the money was at 10 PM. While there, I saw several people win big jackpots. The place was packed with jackpot winners waiting for their chance to win yet again. Sadly, Sue didn’t win. But we had a fun time anyway.

Arabella was home watching the pets. I spent a lot of my time worrying that the dogs were going to freeze to death. It was the first night we left the dogs for the night. Even if I am home, I am very paranoid the animals are going to freeze to death. Maybe the cats will sneak outside with someone. Maybe Arabella will let the dogs out then forget to let them back in. The maybes start swirling through my head faster than the snow in the blizzard winds.

Why am I always so worried about my animals when it is cold outside?? Then it hit me. As a child of around 13, I did have some animals freeze to death when I wasn’t home. It was probably around October and it was freezing at night. Two of my outdoor cats had kittens. One had 6 and the other had 4. One of the mama cat’s was a good mom and the other cat was not. The mama cats were sisters and they took care of each other’s babies. At night, I had to lock the cats in with their kittens because one would stay and the other would not.

We hardly went anywhere, but that night we got home late. Too late, in fact. One of the mama cat’s was with a box of babies and the other was not. The box of babies without the mama cat froze to death. My mom said I needed to bury the box of dead kittens. I found a shovel. It was dusk when I found a good burial spot. The ground was cold and hard. But I was able to dig a little hole. I put my hand into the box to pick up one of the fluffy kitties. I screamed when I touched the kitten’s little frozen body. I couldn’t do it. The kitten was so cold and death was so final for these babies. I started crying and threw the box, kittens and all, into the weeds.

I felt awful. Maybe their deaths could’ve been prevented if I didn’t go somewhere with my mom and brothers. I blamed myself. And on Arctic bitterly cold days, I can’t help but worry it could happen again.

What’s happening this week – 11/9/23

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Hello! I think this time of year is always one of the hardest thinking of the winter ahead. I can no longer trick myself into thinking it is summer because the warm days are gone along with the healthy summer glow. With the time change, the skies are dark at 5 PM. All I want to do is sleep or eat like I’m preparing my body for hibernation.

I haven’t been feeling the best either. Some days I can really tell I have an ulcer with the stomach upset and nausea. The last several days have been cool and rainy. My joints ached like crazy. My whole body seemed locked down in pain and I just felt tired and crabby. It’s hard to believe the weather can affect how I feel physically. It doesn’t seem logical. There is still a mourning process to everything. Five years ago I ran a 50k. Now there are some days where walking up the steps feels like climbing a mountain. The whole experience has really humbled and changed me.

This week has seen it’s fair share of problems. This past weekend, the hot tub stopped working. The jets made a clicking sound and turned on and off by themselves. It sounded like the motor was going to burn out. I haven’t been able to find someone to fix it yet. One evening Paul and I came home to a strange noise downstairs to find water shooting out of the back pipe of the toilet. Several rooms were flooded including Arabella’s bedroom. At least it was clean water and it wasn’t from the leak Paul fixed a couple weeks ago. One of the dogs has a red swollen eye. I’m hoping it’s nothing serious. Best case scenario is the cat got him and he will learn his lesson about chasing cats. I don’t want to think what worse case scenario is. This morning I caught the dogs pulling stinky algae encrusted dead leaves out of the stagnant water of our decorative pond, fighting over them, and then gouging them down. Gross!

Arabella finally was able to get back on her health insurance and went in for a check up to get some of her medications reissued. She has been coughing quite a bit lately. I’ve been jokingly telling her she needs to quit smoking. Turns out she ended up testing positive for strep. I’m not surprised she started a new restaurant job and is sick already.

Angel and Dan left earlier this week for their honeymoon/anniversary trip to St. Lucia. It sounds like they are having a wonderful time. I was the one who suggested the location since it’s the most beautiful place I’ve ever been. I was able to give them a lot of tips and ideas about travelling and what to see while they are there. Paul and I are very jealous and long to be in the Caribbean sun right about now. I’m really happy for them they can experience travelling while they are young and carefree.

Because of my health, I’m fearful of the best travelling years window starting to close. It happened so much faster than I was ever expecting. My husband said the other day instead of climbing mountains, we can still view them. There is some truth to that.

This week I started writing my memoir again. I am a lot further along then I thought I was. I probably only have a couple weeks left until the writing is finished and the editing begins. I am excited about this. But what happens after? I would like to keep writing but don’t have any more big goals.

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!