schizophrenia

The appointment, part 2

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July was the month of appointments, none of them mine. Matt had an appointment scheduled for his physical. I had a long list of questions to take with me. My mom never allowed anyone to take part in Matt’s care. She wanted full control and everyone had to do what she told them.

I expressed concern to the doctor how many supplements Matt was taking along with his medications. Matt was even taking a multi-vitamin with iron, although he had no medical purpose that I knew of to be taking it. I asked the doctor if Matt should be taking dozens of supplements. Was it possible his previous liver issues were due to taking too many supplements? The doctor said it was likely.

Then I discussed with the doctor the strict diet Matt was on. I told her I would like Matt to try a diet with no restrictions. The doctor asked Matt if he would like to have some ice cream. I told her Matt has no idea what ice cream is because he never had it before. As kids, we never drank milk. There were many foods Matt never had before. I wasn’t sure how his system would respond to a new diet. I was fearful he might have an allergic reaction of some sort. The doctor decided to draw some blood just to check if Matt was deficient and needed vitamins.

The blood draw was difficult for Matt as they couldn’t find his veins easily. The doctor said she could order allergy testing and even a brain scan to see what was going on if I wanted. But I told her I didn’t want to do anything invasive to Matt if what we were doing was working for him. His anti-psychotic meds are working. I didn’t feel the need to do a brain scan to prove he has schizophrenia or another disease or disorder.

The doctor told me the group home called her and pleaded with her to talk to my mom about Matt’s care. I went home and cried. I was overwhelmed with sadness that Matt was forced to live this way for so long with no one stepping in to tell my mom she was going too far. I came to the conclusion that he wasn’t sick, she was. It rang Munchhausen by Proxy warning bells in my head. It made me question everything I ever believed, everything she taught me as truth. I felt anger towards my mom for the abuse. I am so ashamed of my family. I feel nothing but disgust, yet I have to be the bigger person to make the decisions about everyone’s care. Was I making the right call??

Weeks passed, Matt started trying new foods. He ate ice cream cake for the first time at 49 years old. He really liked it. He didn’t have a reaction to it at all. Then he tried pizza. My mom found out that Matt was off his special diet. She became very angry and yelled at the staff member who gave it to him. I was afraid something like that would happen.

The last time we visited Matt he looked happy. I have more compassion towards him. I feel sad I couldn’t have changed things before. But my mom was the guardian and wanted to be in complete control. I couldn’t do anything about it before, but I can now and I am.

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.

What is coming next

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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

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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.

almost to the end

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Over the weekend, we hosted a Christmas party with my mom, my siblings, and our families. We also attended a Christmas party with my mom’s extended family. There has been no hiding that my mom’s dementia is getting worse. She no longer recognized her brother-in-law, someone she knew since she was a teenager.

After the first Christmas party, my siblings and I had a meeting to discuss the current situation of our parents. Then we spoke to our parents about some of the things we discussed. I was very stressed out before the meeting. Thankfully my brothers and I are in agreement about how things should be handled. The biggest problem is that our parents are not in agreement with us.

My parents should not be driving. I’ve received several calls about my mom’s driving. She got into a car accident this year causing an injury to another person. Her friend told me she pulled out in front of someone without looking first and her friend came close to being killed. She also drove across her friend’s lawn and face planted her car into the ditch instead of using the driveway. When my brother asked her about her driving, she told us that she was a good driver. My dad can barely walk and doesn’t see well. They refused to stop driving or look into options such as assisted living.

The only thing they said they were willing to do was give me guardianship of my disabled brother Matt. Honestly, I don’t really want to do it. But I don’t feel like I have much of a choice. I told my brothers I was not going to baby Matt or give him special treatment which he is used to receiving from our mother.

I can’t stand even being at my parents house because the level of dysfunction and chaos is almost more than I can handle.

It’s hard not having any sense of control and just stand by waiting for something bad to happen before any changes are made. But I’ve been through this before recently when my daughter started developing a serious mental illness. When someone is an adult, it’s nearly impossible to intervene on their behalf if they don’t want your help.

Despite the stressful meeting, the holiday parties went really well. Everyone was for the most part nice and respectful. With the exception of a couple days, I’ve been in good spirits. I joked around and laughed a lot with my family when others around seemed to be rather down with all the bad news. Maybe it’s because I don’t care as much anymore about the things I can’t control, which is freeing. Maybe I’ve gotten used to living with suffering all around me and I’ve become desensitized. Or maybe it’s because I’m medicated. Life is just too short to take seriously all the time.

The most wonderful time of the year?

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It’s the most wonderful time of the year, or is it?

Just like everyone else, I’m getting into the hustle and bustle of the busiest time of year. I’m hosting 4 parties over the holiday season. I don’t really mind the decorating, the cleaning, set up, take down, or cooking all that much. As much of a planner and how organized I am, sometimes I don’t want to do all the planning. I don’t enjoy the menu planning anymore. It’s a ton of work trying to keep in mind everyone’s dietary restrictions and preferences.

Overall, Thanksgiving went well. But try as I might, I couldn’t get the menu right. Several people are gluten and dairy free. I tried to improvise by using dairy free butter and almond milk for the mashed potatoes versus regular butter and milk. But I found out that several people were almond free too. I had to set aside some plain potatoes for my brother Matt. My mom was constantly reminding me to set some aside for him. I was so annoyed as I had several foods I was preparing at once. She wanted me to mash his separately. I made sure at least one turkey was gluten free, as I had a regular and a smoked. Then I found out Paul’s step-dad’s fiancée couldn’t have turkey. Thankfully she brought some of her own food along to make it easier. But she ate something my mom brought which wasn’t GF and my mom didn’t tell her until she was almost done eating it.

The holidays are difficult in other ways. To me it’s a constant reminder of broken relationships and dysfunctional family members. This year my oldest two kids are not on speaking terms which is hard on me. There is a lot of strife with other family members. My dad is not a part of things because he is a horrible person. I think we all just do our best to tolerate each other which is not how family should be.

My mom’s cognitive functioning has greatly declined. Thankfully I have an appointment in the books for the end of February to see what is going on. It took months on the waiting list just to be able to schedule the appointment. I’m hoping she can hang on until then. I’ve been getting concerned calls from family and friends of my mom. My mom’s friend told me my mom went in the ditch at her house. As she was leaving, she drove across the lawn and into a deep ditch. She also said my mom didn’t even look before pulling out from a stop sign in front of somebody and they almost got hit. She said my mom was no longer a safe driver. She also said my mom needed to stop babying my disabled brother and my dad needed to get off the couch. The last two have been issues since I can remember.

I am hoping to sit down with my brothers over Christmas to discuss the care of our parents and disabled brother. I don’t want to be the only one making these calls and having all the responsibilities. I’m sure they would be willing to help, but they live further away and we don’t see each other often.

Other than that, I have most of my shopping done. My husband, our kids, and their significant others all made Amazon lists which made things really easy. So far everything went good with Arabella’s boyfriend meeting the family. By the end of the year, he will have met pretty much everyone. It’s so awkward to start dating someone right before the holidays. We like him, and he is absolutely crazy about Arabella. She is going through some major medication changes and she is responding well. Earlier in the year, I never would’ve guessed we would be at the point we are at today.

It will be interesting to see what the new year brings.

Riding with the changes

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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

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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

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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.

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.