I can’t believe it has been one year since we said good bye to my mom. My mom left us on January 5, 2011 and she will never be forgotten. I think of her daily and wish I could see her just one more time. I miss her every day. I remember the day like it was yesterday. It’s strange, on one hand it feels like we have barely blinked since she passed away, but on the other hand it feels like it like so much time has passed since we lost her. My mom was good-natured and nice to everyone. She was so gentle and didn’t have a mean bone in her body. She was my best friend and my biggest cheerleader. She stood behind me no matter what and supported me with whatever I wanted to do. I could talk to mom about anything and I spoke to her every day, multiple times. I would call her if I saw something funny on TV, needed advice or just needed a reminder of some random thing we had discussed. We had a very close relationship. I would give anything in the world to have her back, especially with everything she has had to miss out on.
She definitely did not deserve the hand she was dealt. My mom’s troubles all began in the summer of 2007. I started noticing that she was acting different. She had a difficult time remembering things and had a hard time remaining focused. She would be in mid-sentence and completely lose her train of thought. I definitely knew there was a problem when she started getting lost going to places that were always familiar to her. I was extremely concerned about her and decided we needed to get her into the doctor. This was not normal. My Mom was very emotional and did not understand what was happening to her, but she did acknowledge there was a problem. We scheduled her an appointment and I went with her to the doctor. I absolutely wanted to be there because I was afraid she would not be able to articulate what was going on. I wouldn’t say the appointment went horrible, but I wouldn’t say it went great. They did some simple tests on her (asking her questions, testing her memory, having her draw out things, etc.). She was very nervous, embarrassed and scared. She got very emotional because she couldn’t answer some of the questions. It made me so upset seeing her cry. The doctor did blood work and took a urine sample. Her doctor also referred us to a neurologist because she thought she should get a cat scan. At this point, they were not ruling anything out. They said it could be anything from depression, to anxiety, to dementia, to problems with her thyroid, diet, etc. All sorts of things cause memory loss. Her doctor said she was very young (she was only 54) to be having problems like this.
I took my mom the next morning for a CAT scan. She also had an abdominal ultrasound too. They could see something wrong with the CAT scan right away and told me that her doctor would be calling me later that afternoon. I spoke to the doctor a few hours later and they were able to determine that she had a brain tumor. They said it was 3 inches in diameter, about the size of a baseball and it was very inflamed. I was not expecting the news we received. It hit me like a ton of bricks. I was scared. They made us an appointment with a neurosurgeon the following morning so they could do an MRI. They were able to determine that her tumor was benign and it appeared that it had been slowly growing for the past 20 years, but was just starting to show the symptoms. My mom never had headaches, blurred vision, speech issues or anything that would make us think she should have gotten a CAT scan/MRI sooner. I remember getting all of this news was just a rush of emotions. We knew something was going on with her, but didn’t expect it to be that. At this point, my mom knew what was going on, we could still have conversations with her and she was “with it.” She would just occasionally lose her thoughts or forget things. She was still driving, going about her days and was completely independent.
Fast forward to November 6, 2007. My mom went in for major brain surgery to have her tumor removed. My whole family got to hospital around 6:oo in the morning to see my mom before she went into surgery and we camped out in the family waiting area for the majority of the day. It was a long surgery, it lasted about 6 hours. Afterwards, the doctor said it went excellent. She was in recovery for a while and then was moved to the intensive care unit. After she woke up from her surgery, she was a bit confused, which was expected, but she was able to speak. She didn't look like herself. She had part of her head shaved and stitches running across the whole side of her head. Within a couple of hours the doctors had her up and walking. It was going to be a long road to recovery for her. She spent about a week in the ICU. Since the hospital was so close to my work, I was able to go back and forth frequently to see her. After she was released, she went directly to Marian Joy Rehabilitative Center where she spent 2 more weeks. While in rehab, they had her engaged in occupational and physical therapy. She had to relearn a lot of things people take for granted. She didn’t fully understand why she was there and she would cry when we would leave. She was making some progress and was released to come home. When she got home, she still had a long journey ahead of her. She was in out-patient rehab twice a week and we all worked with her to help her. After a few months of her rehabilitation, her insurance money ran out and we had to discontinue the sessions. We tried even harder to work with her at home. She seemed to be doing better. She could carry on conversations and she even was able to drive (short distances). I tried to spend as much time with her as I could. I would take her bowling or shopping and we would cook and bake together. She loved making cookies. My aunt and nana also spent a lot of time with her too.
I can’t pinpoint the exact timing, but sometime in late 2008, she started regressing. She wasn’t getting better, but she was getting worse. We would take her to her neurologist every few months and they would change her medications and do additional CAT scans. There was no sign the tumor had returned. The doctor had said that her tumor was so large and when they removed it, it left a big hole in her brain and it would have to slowly return to its original form. Also, where the tumor was located is where the memory and speech are controlled in the brain. My mom was starting lose her independence. She could no longer do anything for herself. She relied solely on my Dad. She had difficulty holding conversations. She could have an artificial conversation and would often ask “How are you?” or “What’s going on?” Over the next two years she had a few admissions to the hospital for episodes she was having. In September 2010 she was admitted because wouldn't stop shaking and was delusional. The neurologist on staff thought she might have been having seizures. She was in the ICU and they did multiple tests on her (CAT Scan, Brain Wave Test and many different blood tests). The tests showed no seizure activity and her blood tests all came back normal. She was diabetic too so they thought maybe her blood sugar levels dipped down, but those were fine too. They finally came to the conclusion that she has been over medicated for too long and she had a really bad reaction to it. She was on like 9 different types of medications – 3 different things for her brain/memory, anxiety medication, depression medication, cholesterol, diabetes and a few other things. Her new doctor we saw couldn’t believe how much stuff her other doctor had her on because he said it was all just way too much. The new doctor reduced her medications. She was released from the hospital but she was still in bad shape. Over the next few weeks, my mom went completely downhill. She was at the point where she needed constant attention. She didn’t know who I was anymore. She couldn’t process anything you would say to her and she would not make any sense when she did talk. It was absolutely heartbreaking to see my mom like this.
We decided that we needed to get my mom back into the doctor. (After her last hospital admission we switched neurologists. Her new doctor was much more compassionate and tried everything to help us. He treated us like we were family and genuinely wanted to help my mom). We learned something new at this appointment. Basically, the whole reason she digressed the way she did was because of her surgery. We always thought it was the size of the tumor or the position of it. But, when they were removing the tumor, they had to cut through and around the tumor/brain and when the meninges (sp) were cut it caused significant damage to the brain. Specifically in the area of the brain that controls speech, communications and thought process. The new doctor reviewed all of her charts 10 times over and said it was inevitable with the way the tumor was positioned. Her other doctor that did the surgery never came right out and said that and always gave us the impression there was hope for her (through occupational therapy, speech therapy, etc). They told us the surgery was a success and they were able to remove the entire tumor. It was a not a success in the terms that it was going to cause permanent irreversible damage when it was removed. Her new doctor also told us that my mom stroked during her initial brain surgery and we were never told. He was able to see that in all the scans. Again, there is a possibility this all could have been prevented if she was treated for the stroke at the time of the surgery. The doctor’s main plan going forward was to give her medication that will keep her happy and tranquil. He said that she was progressively going to continue to get worse.
The whole situation really took a toll on my dad. He had been her primary care giver and it was at the point that he could no longer take care of her. I had approached the topic of looking into other options for my mom such as a nursing home. My Dad was completely resistant and did not feel this was an option. He was not ready to give up on her. In the meantime, I hit the ground running trying to look into different nursing homes and visited several facilities. Trust me – this is something I hope you never have to do for your parents. Nursing homes are not a place you want to be and they are very sad. It is depressing to think of leaving your loved one there to live. I never thought I would be shopping around for a nursing home for my “mom” who was only 57 years old. Again, my Dad was not willing to accept that she needed to be placed in a nursing home (even though it was clearly obvious). He said he would take care of her as long as he physically could. Just a short time later, she continued to decline and deteriorate. She was no longer eating and could barely walk/stand. I went over to my parent’s house on New Year’s Eve (last year) and she was not responsive and we could not get her out of bed. We didn’t know what to do so I called for an ambulance and they brought her to the hospital. The doctor’s said it did not look good for her. They could try running some tests to see what was going on, but we all knew she was dying. After a long tearful discussion among my family and her doctor's, we made the painful decision to let her go. She was moved to hospice and we let nature take its course. This was a gut-wrenching decision for my dad (and for all of us), but in the grand scheme of things it needed to be made. Hospice was brought in to make her as comfortable as possible. My mom held on for 5 days before she decided it was time to go. We sat with her every single day and told her how much we loved her. It was horrible to see my mom like this, but in the end she went peacefully. The hospice nurses told us that she would go on her own terms when she was ready. My mom waited for everyone to leave for the night, and decided it was time to go when it was just her and my Dad. At 11:30 pm on January 5th, I received the call from my Dad that my mom was gone. I threw on some clothes and went back to the hospital. I broke down as soon as I saw my Dad. We sat with my mom in the room and waited for the priest. We prayed and cried. Even though she was gone, there was a powerful presence that she was still there with us. It was very sad to leave the hospital that night. To this day, I have a hard time passing the hospital on my way to work every day. It makes me sad.
A day has not gone by where I don’t think of her and wish she was here with us. I know she is watching over us and I’ve seen signs that she is still around. She has been in my dreams and I cherish all of the memories we’ve ever made. Even though this is the story of her troubles, it is not the story of her life and it is not how I choose to remember her. She was a great mom, wife, grandmother, friend, sister and daughter. She always put others before herself. I wish she could be here to see my daughter grow up. They say that the eyes are windows to the soul and I believe it. After my mom got sick, you could see through her eyes that she was not the person she once was. She was lost. I don’t know why this had to happen to her. When your mom dies, it is like someone cut a piece of your heart out with a sharp knife. No one can replace your mom. I miss everything about her but I know she is in a better place. I can't believe one year has passed already.
I love you Mom.
