Dementia

Marching on

/ Outrunning my demons / 7 Comments

I found a job.

It’s a job I didn’t have on my radar last week. I was hired by a hospital to work in ER admissions. I never worked in a hospital before. The ER department sounds stressful but exciting. The only thing I really don’t like is being around sick people all the time. My immune system has been strong as of late, so I’m hoping it will stay that way. This is not going to be a 9 to 5 Monday through Friday kind of job. I didn’t want a job with those hours anyway since I have appointments for family members several times a month.

My mom had her follow up appointment this past week with the neuropsychologist. The test results showed a major neurocognitive disorder. However, more tests will need to be done before we know what kind of dementia she has because it is not presenting itself in the normal way. She will need a MRI before we know more, and maybe more testing beyond that. One type of dementia the doctor thinks it could be has a strong genetic component and is very aggressive. However, my mom is older than the age where it usually presents itself which is within the age range my younger brothers and I am. The thought is horrifying that I could have this ticking time bomb inside of me. I am trying not to think about it all that much until we have more answers. But damn is it scary. My dad’s side of the family has a strong genetic link for dementia as well. I may have to start doing some planning soon depending on the test results.

My mom has been very confused and frightened. It’s terrifying for her because her memory is still within the range of normal. However, her executive functioning is at 5%. She doesn’t have the mercy to forget something is terribly wrong with her. The doctor said she should no longer be driving. My mom will need to do a driving simulation test and if she fails that, she will no longer be able to drive. She is not supposed to attend appointments by herself and it is almost time to get her power of attorney paperwork in place.

Meanwhile, I have become Matt’s guardian and will meet with his case manager this week. There are several things I need to figure out, such as how to transition over the financial aspect of it. I am hoping to have everything in place before I start working full-time.

I have been trying not to let the stress get to me. Thankfully I have a lot of experience dealing with stressful situations so I know how to cope with everything. Last night Paul and I went with family and friends to see our son play in the band. It really was a great time. He will be playing again next weekend…so more fun. When we are all free, Paul and I play games with Arabella and her boyfriend which is fun. I did stand up comedy this week and went to trivia night with Paul and friends.

This week Angel will be coming back home from out East to visit. We will be going with her and a group of people to see the musical she was the music director for. It’s been a month and a half since we last saw her. I can’t wait until she comes home again. We have a lot of fun things planned.

The weather is slowly starting to warm up. I saw my first robin of the season yesterday. The snow is starting to melt.

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.

On caring

/ Outrunning my demons / 5 Comments

It’s been four years ago today since my daughter Arabella’s first suicide attempt. In this I am rejoicing because she is still alive. It’s been a long hard road, but here we are.

Yesterday, in the early morning hours of Valentine’s day, Arabella had her tonsils removed. So far nothing crazy has happened, unless you count the nurse splattering blood all over the floor with her second attempt to start an IV. All of that makes me quite queasy, along with the thought of anyone I care about being in pain.

I was asked this week if I considered getting medical training to care for my parents in their home. Nope, that thought never crossed my mind. Then I felt the guilt of maybe that thought should’ve crossed my mind. I just don’t think I could do it.

I’ve been a caregiver since the beginning of my time, while I myself was still in the need of care. The earliest (traumatic) memory of that is of watching my three younger brothers by myself in the lake when I was six. My youngest brother almost drowned. I was always the ‘second mother’ since I can remember. I was my mom’s ‘best friend’ and I had to take care of her and make sure she was okay while I went uncomforted.

As a teenager, I was providing care for my autistic brother Matt who was less than two years younger than me. I was also helping with showering and personal care. My mom relied on me more than she relied on my dad when I was yet a child. Starting at age 12, I started working as a babysitter for about a dozen neighborhood families.

In college, I worked as…you guessed it, a caregiver. I was still a caregiver for my brother Matt along with a man with schizophrenia and a woman with dementia. Two months after college graduation, I got married, and two months after that I was pregnant. I never questioned whether or not I would be a good mother. I was actively parenting my own three kids from 1998 through 2021. While actively parenting, I became a babysitter to several other children, one of whom was in a wheelchair. I also provided care for my Great Aunt Grace who had dementia which also included bathing and personal care.

Then in 2020, exactly 4 years ago today, my daughter developed a serious mental illness. Even though she turned 18 in 2021, I will probably have to provide care for her in some capacity for the rest of my life. I will also become the guardian of my brother Matt when my parents can no longer do it. Last week we had the conversation of putting me on my brother’s account so I can write checks if my parents are unable to so he can continue to stay in his group home without disruption.

Right now my mom seems to be slipping into dementia, but physically she is in great shape. My dad is of sound mind but in horrible condition physically. The only thing normal about my parents is that they both want to stay in their home as long as they can. They don’t want any caregivers to come out to the house because they don’t trust that people won’t steal from them. I have been helping them check what their options are. I am totally fine helping them manage their care and making sure they are in a good place, but I don’t think I would be willing to be their caregiver.

Some may say it’s selfish, but I have my own life and my own problems. This week I started a new medicine for ulcerative colitis. I have my own health issues. But even if I didn’t, I still wouldn’t want to do it. I can’t recall one single good memory with my dad. He was abusive and his issues with addiction pushed most of the family away. If he was a great dad, I would bend over backwards to help him. There is truth to the old saying of you reap what you sow. When I was younger I hungered and thirst for justice. But not any longer as I see it playing out before me just as it was meant to be.

There is a reason why some old people are sitting alone with no visitors at the nursing home. No doubt, it is incredibly sad. I wish it wasn’t that way either. But if you never put any money in the bank, how are you supposed to take any money out?

I try to put everything I can into my relationships that are meaningful. Everything else can take the back burner.