We suffer alone together

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 beginning of June

Just like that Memorial Day weekend has passed, and we are well on our way into unofficial summer. I received an incident report from the group home after Matt went back after the holiday weekend. Apparently my mom mixed up his medication. If it happens again, I may have to rethink allowing Matt to go to my parents house over the weekends.

My mom has been messing up her own medication and my dad’s too. My SIL Carla spent several days at my parents house taking my mom to doctor appointments and going through her medications and cupboards. My mom had 30 containers of expired peanut butter in her cupboard. This was shocking to Carla, but my brothers and I were not surprised since my mom has been hoarding food for a long time. Carla also found out that the pharmacy has been filling prescriptions that were discontinued by the doctor. Everything is a mess. But my parents have been adamant about not going into assisted living.

After a long stressful work week, I finally am starting to feel relaxed. We just got back from spending the night on the boat and visiting with friends. Thursday night after work, I did stand up comedy. I even talked Arabella’s boyfriend into giving it a try and he did an excellent job. Friday ended up being a hectic day unexpectedly. The day before the motor gave out on our washing machine mid-cycle. Friday morning I had to go shopping to buy a new one. Then I cleaned the house. Afterwards Angel came over for a visit so that was nice. Paul and I rarely have the opportunity to spend time with just her.

The upcoming week will be another busy one. Next weekend will be my first full weekend to work. I will miss being home with Paul on Father’s Day weekend. I also have a doctor appointment with Matt on my day off. I have a feeling it is going to be a long week. Alex’s tour with his band is over now and he will be making his way back home. Hopefully he will tell us all about it, but he probably will not.

What is coming next

I want to start blogging more again. Maybe I can try for once a week. I realized today I have been blogging almost ten years. It takes some form of dedication or insanity to continue that long. One of the hardest parts for me is finding people I connect really well with and then they are gone. Maybe their blogging experience is only temporary. Sometimes bloggers pass away. That component is harder for me then finding things to write about.

This past week has been difficult/emotional in different ways. The job search has lead to several dead ends. I was selected for the lucrative job I took the proctored exam for. However, I am sitting in limbo. It’s been over a month since I applied. When I reached out, I was sent a form letter stating that I am in a pool of applicants and if/when they need me they will reach out. My test results will be on file for two years and if I don’t hear anything by then I am welcome to reapply. But I am looking for a job now.

A friend told me over the weekend that she knows someone who works for the job I am waiting on. She said for the first 6 months they had to work 3rd shift until there was an opening in 1st shift. I am not willing to work 3rd shift, been there done that and don’t ever want to do that again. I would be willing to work those hours once in a while but not often. I AM, however, willing to work day shift (early morning is fine), 2nd shift, weekends, and holidays. I don’t want to work a regular Monday through Friday 9 to 5 job either. I just don’t think it would be possible for me at where I am in my life right now.

As of this last week, I am now the successor guardian for my brother Matt. However, I am not going to do everything the same way my mom did. I am not going to cater to his every whim. This is going to be an adjustment period for all of us and I am going to be pulling off the band-aid. At first I felt a tremendous amount of guilt for doing things my way, the way I think will be the best for Matt. But I had to remind myself that I have taken on the responsibility to be responsible for my brother for the rest of his life or mine. I never signed up for this. I don’t want to have a brother with a disability. But I was willing to take it on even though it was not in my best interest. There are going to be a lot of things I have to learn.

This past week my mom had her neuropsychological evaluation we waited 5 months for. We will be getting the results this week. My brother Luke went with my mom and I to the appointment which lasted 4 hours. We had around an hour to talk to the doctor about our concerns without our mom in the room. I think we were listened to and adequately described the situation. The last few months my mom’s dementia has gotten worse and she reached a new level of raw unfiltered obsessiveness and self-focus. I think she may have more than one personality disorder on top of whatever dementia she is facing. Spending time with my mom is very difficult. I have to limit it to once a week for my own mental health. I had horrible nightmares the evening of her appointment.

This is why I can’t look for a 9 to 5 job. I have several appointments during the month during the day for my mom, daughter, and will for my brother Matt as well. Also, I would like to continue volunteering for several organizations during work hours. My husband and I just finished facilitating an 8 week family class through NAMI this week. We had the opportunity to guide ten other people who are new to mental health struggles with family members. It was great to use my experiences to help other people. We had such a great group and I am sad to see the class is over.

Every week I am looking forward to several opportunities to de-stress. This week I am planning on going to trivia night with friends. The first time we did it, we won second place. This will be the second time. After taking two months off to teach the class, I had to take a hiatus from stand up comedy. I will be doing stand up comedy this week. This weekend my son’s band will be playing so I am looking forward to going with friends and family to watch them perform.

I am also planning on finishing the third edition of my memoir this week. Last year I was planning on ending it but so much more has happened to write about. I feel like I finally found a good place to stop the story. My plan is to have it completely finished by April 11, which would’ve been my grandma’s 100th birthday. Even though she has passed many many years ago, I want to celebrate her day and the life she has given to me. Without her influence in my life, I don’t know where I would be.

Other than that, my husband and kids are doing well. It’s great they are all in a good place right now. I feel like I am at a crossroads of sort. It is a very uncertain and anxious time, yet on the other side of the same coin is a sense of anticipation and excitement for what is to come next. I might take some classes and go a whole different career route. Who knows at this point? I think I should have a lot of answers this week.

Blue Monday

Apparently I forgot to cancel the trial and tribulations subscription in time for the new year. It’s been a rough start and I am feeling frustrated.

Some of it is the little things. This past weekend my son was performing with his band. As I was scooting my chair closer to the bar, I smashed my finger. I didn’t realize as I was pulling it in that the seat separated from the base. I sat down on my finger trapping it between the chair and the base with my body weight. Man did that hurt! My finger swelled up and was bleeding from under the nail. It still hurts a little and my finger is bruised under the nail, so I’m hoping I don’t lose my nail.

Or we can talk about today. Today I found a worm on my cat’s backside. I had to give both cats, under protest, de-wormer and deep clean their cat boxes. As I was cleaning, dirty litter box water splashed on my face. Fun times! As I was taking the dirty litter out to the garbage, the bag broke spilling dirty litter all over our walkway. I had to clean this up so the dogs wouldn’t get into it outside while the temperature was twenty below zero.

Then there are the bigger things. Like our investment falling through, from when we sold our business, that we were planning on living on the next couple years. Now I have to go back to work full-time. All the things I have been planning had to be cancelled, like our road trip out to Virginia to see Angel and Dan who will be living out there for the next couple of months. I applied for a job over the weekend. I think I have a good chance of getting it. I will need to pass a proctored exam to see if I will qualify. That was even a big process because I had to update my resume and all the stuff that goes into looking for a job. I will also need to pass a physical as the job is very active. Against medical advice I started running again.

The other big thing is that my mom’s health is deteriorating rapidly. It has become apparent that I need to take over guardianship of my brother Matt. That is not as easy as it would seem. I had to take an online class and fill out a whole bunch of complicated paperwork. At first, my mom refused to sign the paperwork to resign as guardian. She doesn’t think anything is wrong with her. She is trying to hide her dementia.

My brother Luke came home to try to figure out my parents finances. They have several accounts that are an absolute mess and haven’t been balanced in years. My mom is refusing help with her finances. Finally on Friday my mom signed the guardianship resignation letter. Luke and I went with my mom to pick up Matt from his group home. Then we stopped at the grocery store which was insanely busy. Luke and I were trying to help my mom shop with Matt. If you can imagine what it is like taking someone who has dementia and is confused along with someone with intellectual and mental illness. Neither have any awareness of other people. Matt almost bumped into someone. I had to pull him out of the way. Luke and I were very stressed out. I almost started crying in the store. But everyone was very nice and looked upon us with pity.

I have an appointment later in the week to meet up with someone from the county to see if my parents qualify for meals and in home care. I’m still in the middle of the whole guardianship paperwork process. That is also going to be intensive with the financial reporting, needing to meet with doctors and the case manager. My brother lives 40 minutes away so it is going to take a lot of time on my part to get everything set up.

Not to mention doctor appointments with my own daughter. Arabella is doing well on her new medication, but it is causing her to gain a lot of weight. At the last appointment, she gained 13 lbs in 6 weeks, so I’m not sure if she is going to go through another med change.

I have a feeling it’s going to be a long year.

Riding with the changes

I have been feeling uninspired as of late. I feel bored; which I guess isn’t too bad because it is a step above feeling melancholy. There is no immediate crisis, but change is in the air. I can’t tell if it’s good or bad or just is.

The past several days have been very summer like. It has been easy to convince myself that fall is way off into the future somewhere even though the calendar says otherwise.

Uncertainty and change are all around us. Who will our next president be? What kind of changes will that bring?

There have been some big changes in the business we are running and there is uncertainty which road to take. We are waiting in anticipation to see if our finances will change. If not, what kind of changes will that bring? My husband wrestles with wanting to retire and wanting to keep working indefinitely.

I have entered a new decade and my health has been changing.

My son and his girlfriend got new jobs. My son-in-law and daughter might be moving across the country for work for 6 months. I think it’s an exciting opportunity, but I will really miss them. They could be leaving within the month or not.

My parents are experiencing a great deterioration of their health. This has been problematic in many ways. I realized recently that my relationship with my parents has been very destructive and toxic. I sacrificed my young years, my best years, trying to help them because they needed me so much. I was more of their parent then they were ever mine. Looking back, I wish I cut ties with them decades ago. But I didn’t, and now I will never be set free. I will never have the relationship with them that I would’ve wanted.

My mom has been having memory issues, but refuses to admit anything is wrong. I’ve been seeing my mom in her raw form which is very difficult to see. She no longer disguises her extreme favoritism towards my disabled brother. She insists that the world needs to change around Matt instead of helping Matt adapt to the world he lives in which has been a huge disservice. She has placed her favoritism towards Matt over the safety of her children and grandchildren. Nothing is wrong with Matt or her, the problem is the rest of the world. Yet she seeks attention for being a martyr for taking care of my dad and Matt. It’s painful for me when others talk about their fond memories with their aging parents when the only thing I have to bring to the table is shame. There is a lot of uncertainty what will happen with my parents and brother in the near future.

Then there is Arabella. She is having side effects from her medication which have been hard for her to deal with. A couple weeks back I had to take her to the ER because of it. The doctor made a mistake and it ended up being a traumatic experience for both of us. Being on her medication has been a lifesaver, but not an optimal long term solution. Just keeping someone alive is different from being fully alive. Although a lot of troubling negative behaviors are gone, she is just a shell of the person she used to be. She used to be outgoing and fun loving. Now she spends her free time in isolation in her room watching TV. Her friends are gone. Her social interaction is limited to family and work. Her ex moved on and that has been hard for her. No one ever mentions how recovery is a lonely road.

Things have even changed on the blogosphere. Some of my favorite bloggers have fallen off the face of the earth. That feels like losing a friend. I have no intentions of leaving, although I know I’ve been too much of a stranger as of late. What is the purpose? Some days feel meaningless and it’s really hard to find motivation in that mind frame. I’m trying to just ride with the changes, although I’ve never been particularly good at that.

Safe for now

I feel like I got my daughter back. The daughter I had before everything started. Before the suicide attempts, the cutting, sneaking out late at night to meet up with strangers, the delusions, the depression, the mania, hospitalizations, jail, and all the other struggles I’ve been writing about the past 4+ years. We are getting along better than we have before.

Everything changed once she was on the right medication. At her last hospitalization, they put her on a mega dose of the powerful anti-psychotic Haldol. The doctor has been slowly trying to taper her off the medication. In the beginning her doctor also put her on Lithium as a mood stabilizer. She has been diagnosed with Schizoaffective Disorder which is a mix of schizophrenia and bipolar. After several months, her doctor tried to take her off of Lithium thinking an anti-psychotic would be enough to manage her symptoms. After a week off of Lithium, she started to hear voices telling her to kill herself. Thankfully she communicated what was happening to her with me. I called the doctor’s office and they put her back on Lithium. Once again she was stable.

At the last appointment, the doctor tried to reduce her Haldol. He wants her off of the medication altogether. I asked the doctor if the hospital made a mistake by putting her on Haldol in the first place. He said when Arabella was admitted to the hospital she was very, very psychotic. If a psychiatrist says that it must mean a lot more than usual. They had her on ten times the average dose. That’s why when we visited her in the hospital, we were traumatized to see her because she was shaking and couldn’t talk right. Her jaw was tremoring and her words were slurred. They put her on another medication for side effects of Haldol and that caused her to have vision changes.

At the last appointment, the doctor tried to taper Arabella down to a high dose within the normal range. She didn’t respond well. She started to have intrusive violent thoughts. He decided to put her back on her dose previous to her last appointment. And once again, she is stable and enjoyable to be around. If it was up to me right now, I would like to keep her on the medication she is on now for the rest of her life. But the doctor said that after being on Haldol long term she will very likely have irreversible side effects similar to the ones she had before on the mega high dose. By age 30, the medication that is saving her now will cause her to be physically disabled by her condition.

Is it worth it? We might not have another choice. The doctor said it’s going to be a very long process to get her where she needs to be. But as for right now, it’s wonderful to have my daughter back.

Mental health awareness month

Many of you are probably aware that May is mental health awareness month. Maybe you already shared the cutesy memes on social media stating you are a friend that anyone can call day or night. Maybe that is enough for you to feel good to check off your awareness month, and have moved on to planning your pride party for June. Or maybe you also live in Wisconsin and are stocking up on cheese curds for June dairy month. I know, I know…cheesy..

Or maybe you are like me and found out that mental illness is not all that cute. Maybe you or your loved one has already lost the friend that you can call anytime. Mental illness is tough. I’m sure everyone who struggles with it would remove that part of their life if they had the choice. It’s so painful and malignant, that far too many remove themselves from life altogether when it refuses to leave them.

Through NAMI, and talking with other parents whose children struggle with mental illness, I was surprised to find some striking similarities. I am not the only parent whose child attempted suicide. I am not the only parent whose child was incarcerated after a psychotic episode. I am not the only parent whose child, after making abuse allegations, moved in with another family. I am not the only parent whose child hears voices commanding them to end their life and soothing voices telling them how peaceful death is. I am not the only parent whose child has lost a lot of good friends because of their mental illness. I am not the only parent whose child was bullied because they are different.

I could make a much longer list. But the point here is awareness. Don’t blame the family. Don’t blame the mentally ill. Most would choose to change it if they could. Don’t shun them out of ignorance or fear. Treat them as if they have a potentially life threatening form of cancer. Treat them with compassion while being mindful of your own mental health as well.

Be kind to the server who has cutting scars all over her arms. For today, she has successfully battled the voices in her head. She has battled the voices outside her head sending similar messages about her worth. She has many battle wounds but is still alive fighting. That girl is also my daughter. But she could be your daughter as well. Or your son, sibling, parent, partner, neighbor, friend, or yourself.

Be aware that one in five Americans struggle with mental illness.

Aloha!

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 7

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 6

Several times during her hospital stay, Arabella put in requests to come back home. On day 10, we picked her up and brought her back home. She was doing better, a lot better than when we took her in. But she was still manic and delusional. Maybe our expectations were too high. Or maybe we picked her up too early.

She didn’t sleep the first night we brought her home. The hospital changed all her medications. Then when she got home, she took her old nightly medications. It was a jumbled up mess so we decided to call her psychiatrist’s office in the morning to figure it all out. The process of figuring everything out took the whole day. By that afternoon, things got progressively worse. Arabella was very manic and kept interrupting us every few minutes to tell us a bunch of nonsense. By late afternoon, Arabella told us she took a couple of gummies and smoked weed. She was stoned out of her mind, and totally freaking out.

My mom stopped by for a random visit right around that time. She wanted to go for a walk, but I was in the middle of a million things. It’s nearly impossible to get all the things done I wanted to get done when I’m constantly interrupted and in crisis mode. That is when we received a call back from the doctor’s office. Paul and I took the call in Paul’s office on speaker phone while both my mom and Arabella came in and talked to us while we were having a serious discussion with the nurse. We were beyond annoyed, frustrated, and stressed.

The nurse said the doctor wanted to discontinue some of the new meds from the hospital while adding back some of the old meds and discontinuing some others. They were going to call the prescriptions into the pharmacy and would be available two hours before the pharmacy closed. She was going to need to start the new medications that evening. I was going to need to figure it all out before she went to bed. I took a bag full of her medications on hand and went through everything while waiting for the pharmacy.

I needed to go through the meds, fold laundry, and make supper before picking up the meds. My mom tried calling several times while I was getting everything together to make supper. I figured she wanted to talk about Arabella since she left while we were on the phone with the doctor’s office. I ignored her call because I was in a real hurry and didn’t want to take the time to explain everything yet again.

Then Paul came into the room while talking on the phone. He asked whoever it was if they were going to be arrested. I knew he wasn’t talking to Arabella since she was in her room. It was my mom. He said that while she was on the way home she hit a guy on a motorcycle with her car. He said that I needed to go pick her up from the scene of the accident. He said my mom was okay. The guy on the motorcycle was alive but injured.

While in a crisis, we got hit with yet another crisis. I abandoned supper to get ready to pick up my mom. Paul said he would pick up the medication before the pharmacy closed. He wanted me to do it originally because it was my strong suit. On the way out the door, I called my best friend Cindy on the phone. She lived a couple blocks from the accident. She told me I should come over to her house and she would drive me because I was way too shook up myself.

Cindy and I picked up my mom from the place where they towed her car and the motorcycle. Good thing Paul picked up the medication because the pharmacy closed before I got home. The pharmacy screwed up the medication. But at least they gave her a prescription for something she was no longer using. The hospital also gave her an injectable medicine the day she left and I got a prescription bottle with a vial of the injection in it.

While all of that was happening, I received a call from Alex’s friend. It was his 21st birthday that evening and they wanted me to come out celebrating with them. It was a sweet gesture that my kid’s friends also think of me as their friend as well. Paul was just meeting with this young man and helping him set goals to get his GED which he just finished. I will always think of my kid’s friends as children even when they are in their 20’s and able to go out to the bars. If anything, I was worried that they would all make it home safely. Especially after the kind of day I was having.

They weren’t the only ones on the road. Dan and Angel were just getting home from a vacation in Japan. The flight back home was a rough one, then they had to drive another 4 hours to get back home. I was anxious all around. My nerves were shot and I didn’t know how much longer I could handle the stress. Bad news doesn’t seem to shock me anymore.

Now I find it shocking when good things happen.