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A Day In the Life of a 39 Year Old Woman with A Brain Tumor, Dementia, Amnesia, Anxiety and Depression

Updated on July 24, 2016

The Diagnosis

In 2010 I had a full craniotomy for a brain tumor. As a medical complication I was left with amnesia, dementia, depression, anxiety, and insomnia among other issues. This hub will be on a "normal" day in the life of someone with these disorders who only takes Ambien. I have avoided all other medications and here is how.

Non Progressive Dementia

Dementia is a mental disorder that comes from a loss of brain matter accompanied with behavioral changes. In my case I lost a golf ball portion of my brain when they cut an inch into my temporal lobe in order to stabilize my tumor. (Notice I say stabilize, not remove.)

Technically speaking the loss of brain matter was at one time which is the brain loss portion of the diagnosis. Depression is a side effect of the loss of my memories both current and past as well as the loss of the life I had. Anxiety comes from the fact that I am stuck in a medical system that is overburdened making it impossible for me to get to the specialists I need in order to get the documentation the state needs for me to qualify for disability. Insomnia is a result of the anxiety. Confabulation is my mind's way of creating a reality that I can function with in.

I say all this to say that I have found a way to be a functional member of my family. Unfortunately I will never be a functioning member of society, or be able to hold down a job, but my family has found a way to at least give me a semblance of usefulness, but it is not without a price. Here is my daily routine, maybe it will help someone else out there...

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Here Is A "Normal" Morning For Me

My day starts with an alarm at 6 am. That is when I get up and turn on our daughter's light to let her know it is time to get up if she wants a shower. Another alarm goes off at 6:30 am. That is so I can either tell her to get out of the shower, or to get ready for school. Another Alarm at 6:40 am means that it is time for me to get up. This is when I actually start my day.

By 6:42 am I am dressed and in the kitchen. I get out her lunch, a granola bar, fruit cup, handful of nuts, fresh fruit from the produce stand (whatever was on sale), and a container from dollar tree of water. Once her lunch is packed I make my coffee (instant due to time and money). We then move into the living room.

In the living room we go through her agenda and homework again to make sure I signed everything. (More often than not I missed something which is why this is part of why we do this.) She attends an amazing school where every homework page, every agenda page, every test must be signed. This lets the school know that we as parents are involved.

Another alarm goes off at 6:58 am. If I am able to drive we are out the door by 7:02 am, if our daughter has determined that I am not fit to drive, she will wake up my husband who can be ready in 5 minutes to get her to school. If I am able to drive we are out the door. Me with coffee in hand, her with backpack and lunch. Her school is 12 minutes from our door to car line. First bell rings at 7:25 am and she is out of the car. I check in with my father on the 12 minute ride back. If I am having an exceptionally bad day he will call my husband and let him know.

A "Normal" Day for Me

The next part of "normal" for me consists of getting ready for when my daughter gets out of school in 6 hours. With my husband's support and after multiple tests we made the choice to avoid as many medications as possible. No Zanex, no anti depresants, no anti anxiety, nothing. Any medications that affect mood disorders also lower the thresholds for seizures. My medical history puts me at a high risk for seizures therefore we do not want to take any chances with lowering my threshold. This means I must work hard to stay stable.

The best way for me to do this is through exercise. I must work out daily. This is not for my looks, but because if I don't I will crawl back into bed and not get up until another alarm goes off to get ready to pick up our daughter. I have found a high impact cardio workout is the best for me. After this, I make a shake (this is imperative!!!! and I will write a hub about the best protein shakes later). If I don't have a shake I will not be able to move the next day. Once the shake is down, I do yoga. We recently moved to a condo near the beach (nothing fancy, it is the lowest priced place we could find in a safe location), so I try to take a walk on the beach if I still feel out of sorts. Then it is time to take a quick shower and get on with the rest of the day.

After I have showered I do some brain games that help my mind to focus and I believe improve. Through multiple tests and programs we have found Brain HQ which is the recommendation of the experts I have gone to. Any program that makes your mind work will be effective, this is just the one I was perscribed.

Once I have taken my shower it is time to clean up a little. Vacuum, dishes, make a list for dinner those types of things. I have recently begun writing as an outlet. If I do the things I need there is a little extra time, not enough to really do much, but enough to go a little stir crazy.

Picking Up Our Daughter

In order to make sure I don't forget to get our daughter I have no less than four alarms that start going off 30 minutes before I am supposed to leave. One is to let me know I need to get ready, one is to remind me when I forget that that one went off, another is that I need to head out the door, and a fourth for when I actually have to pull out. Each alarm has a different tone and volume increasing as I get closer to the time I need to leave.

Once I have left the house I take the same route every day. The school has my number and my husbands as does our daughter in case I do not make it. (Her school is a fundamental school so parent involvement is a large part of what makes the school so desirable.) This ability to have her safe until I arrive is a key to why I am able to watch her and do what I do. Being nine at the time this is written, she is old enough to know when I am having a bad day and reach out to make sure that we stay on point. That is when she is not pushing my buttons as a nine year old can do.

Afternoon Routine

As soon as I pick our daughter up from school we head to the library. Once at the library we get a group study room in order to be able to talk freely. After homework our days are regimented and highly scheduled and tracked. Not only is our daughter making sure we get where we need to be every location has a secondary check that will contact my husband if we do not show up at the appropriate time.

Google calendar is an essential part of my life. Every event is color coded with text, email and phone alerts to ensure that we get to where we need to be. Without the calendar there is no possible way that I could function in the afternoon. I literally spend my days checking my phone to survive. There are multiple free events that can be utilized for kids and if you have a little money even more. Programs such as 4H, library events, music at the park, beach or nature walks. Things that keep us out of the house until 6:30-7 every day.

Night Routine

When we get home I make dinner (scheduled out and written down well in advance). While I make dinner our daughter plays piano for me and tells me more about her day. Unfortunately we do not have a table currently so we do sit at TV trays and have dinner. This is the little electronic time she has watching an episode or two of Disney. Then it is time for shower and bed. She is in bed by 8.

My husband and I try to spend a little time together after she is in bed. This is important because when I go to sleep I will lose roughly 20% of my day which my mind then fabricates based on what I should have done. By 9:30-10 it is time for me to take my evening shower and take my Ambien effectively knocking me out to repeat the cycle again the next day.

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    • Hope Kulin profile imageAUTHOR

      Hope Kulin 

      2 years ago from Tampa, FL

      Hi Girl Power, thank you and I applaud you on your continued action as well! I did not explain our medication reasoning very well which was my mistake, and probably should write a hub related to it as well :). But the short version is that according to my Psychiatrists, all but one of the medications that they believe would be effective would reduce my seizure threshold. If I have a seizure I am not allowed to drive for a minimum of 6 months. After my surgery I was not allowed to drive for 6 months. My husband and I extended that and I did not drive for a year which was by far the absolute worst thing for me. The fear of seizure is a major part of our choice.

    • girlpower profile image

      girlpower 

      2 years ago from eugene oregon

      I am amazed at how active you are, i have progressive Multiple Sclerosis and believe exercise is the best thing for my symptoms and to keep me from getting depressed. You have a well routine that suits you and i am happy for you. I know you don't want to use a lot of medications but if your depression ever gets unbearable, taking a low dose medication could help you get over the hump of not wanting to get out of bed, i have worked with people with disabilities for 30 years and have seen a few people come out of their shell by the medication selected from a psychiatrist, (a general practitioner isn't always on top of the latest medications) get a good assessment and take it from there, they may not recommend meds but if they do keep an open mind. Why not utilize everything available to help you. You are already doing a lot to help your situation, staying on a schedule and finding ways to enjoy your family. Thank goodness you have a supportive mate, that really helps and its someone you can count on. Just don't ever rule out medicine as some can help in ways you have no idea until you try it. Worse case you can quit the med and move forward.

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