My Mom is Suddenly Gone

[JeremyAMG]

Friends,

I lost my dear mother last week (7/24/24). I go to pick up her ashes tomorrow. I’m absolutely devastated! This was not something we expected but, in hindsight, not really a surprise. After beating esophageal cancer two years ago, we noticed little things over the last six months that I now realize were signs. She lost too much weight, felt a little dizzy now and then, couldn’t catch her breath briefly. She had been to every doctor you could imagine. Cancer free, bloodwork good, NOT eating right after esophojectomy, PET scans clear. She kept losing weight, I moved in (Dad is sick too) and helped them both. Got her eating right, gaining weight, working PT to help her walk, it kept getting worse. I noticed that she would slur speech a bit. She’d drink water and it went right away. But it kept getting worse, more frequent, walking was hard. Took her to ER and they again said she had to eat better, get exercise. Took her home and it kept getting worse, to the point I was almost carrying her to bed, toilet, everything. Now this all happened in a period of 5 weeks. I took her back to the ER and got very forceful with the staff. Told them this is more than what they were saying and that I didn’t care what their tests said I wanted scans done from the top of her head to the bottom of her feet. I was thinking a slow developing stroke? 
 

The doctor came in and informed me that Mom had a 3cm brain tumor pushing against the ducts that supply spinal fluid which is why she was losing weight, balance, muscle mass. In addition it was near her stem which was causing the other problems. I had her transferred to the best research hospital in the state. Consulted with a neurosurgeon who gave us grim news but 3 options. None good and none would lead to quality life of more than one year at best.

I knew what mom would choose. She decided to not be treated and go home to the Lord and my little brother. It happened fast. Ten days after the ER visit that identified the cancer she took her last breath in comfort with me holding her hand. My Dad had broken his shoulder in the hospital coming to visit Mom (he fell, being stubborn and not using wheelchair.)  I’m laying in their home (I basically live here nowdays) missing my mom, taking care of my devastated father.

i wanted to be a part of a community where I could share, talk, laugh, cry. My mom and I were very close! I’m her only surviving child. We spoke every single day on my way to work, saw each other all the time, got kicks at talking about UFO’s, and went on an amazing spiritual journey over the last six years coming to truly know Christ together. It is safe to say that my Mom was my life long best friend. She had no problem sharing that role with my lovely wife who is my best friend. She loved me through thick and thin, in my highest and lowest points. She would give me tough love when needed but was always proud. This hasn’t been the hell that losing my 16 year old brother was in 1991, but it’s hard. Dad doesn’t have that long either. 
 

Anyone in this position have any advice, dint mind sharing with their experience? I’m feeling awfully sad right now and angry at the docs too. I’m not looking to sue or anything but I do have trust issues with our medical system. Even if they’d discovered it early the outcome would be the same. 
 

God bless..

 

[Matthew48]

Dear Jeremy,

I want you to know that I am in the same boat as you -- my mother died a little over a year ago. I know the deep pain that you're in. An adult child couldn't have been closer to his mother than I was.  Although she had her faults, she was an amazing mother to me and my sister, especially while bringing us up. 

My mother was a healthy person all of her life; she had only had asthma and some arthritis.  When she was 68, she was told by her doctor that her blood work was fantastic for a woman her age (most don't have such blood work).  Well, all of that ended a year later.  Right  around her 69th birthday, she became very pale and started to get some rather unexplained bruises on her body. She said she thought she had an asthma flare-up, as it was mid-winter, and that her bruises were most likely from running into things by accident. While she never lost her appetite, or any weight, for that matter, she continued to get more and more bruises. Also. she said that she was getting terribly out of breath when she would walk up her staircase to her bedroom. I remember her vividly saying that it didn't feel like asthma. She kept refusing to go to the doctor's. Almo t 2 months after developing her initial symptoms, she came downstairs after having taken a bath, and said that she needed to Urgent Care or the emergency room as she could barely get through bathing herself.

My father and I took rushed her to a local Urgent Care where she was misdiagnosed with pneumonia. They told her that they did blood work, but not to expect the results for a day or two. The PA said that she was sure she was very anemic, but she should be okay until the blood results are in. Two  days later -- very early in the morning -- my mother gets a call that she must go to the emergency room for a blood and platelet transfusion. We all rushed to the hospital where she was admitted a few hours later. She  as told she might have leukemia, etc. A few days later, they ruled out cancer, and said that she needed to see a top hematologist at a hospital almost 2 hours away. There , my mother was diagnosed with severe aplastic anemia, a rare very autoimmune blood disease.  She was told that she could go into remission, or potentially cured at some point; but, for the meantime, she would need to continue transfusions.

A month later, she got her treatment and it didn't work. She  as informed that she would need to do a second treatment of a different kind of medicine, but ended up having a brain bleed from low platelets in the meantime. To m ke a long story short, she recovered very well from the stroke on a physical level after several months, yet her mind was forever gone.  While her memory and certain aspects of her personality remained perfectly intact, she was no longer the same person.

My father and I were her caretakers 24 hours a day. Some days were better than others, but she was unbelievably difficult to care for: she would often keep us up all night long; she'd get combative; and she'd want to go to the bathroom 20-40 times or so a night.  Not only that, she wouldn't be reasonable about certain things, and was usually terribly apathetic. There were days were should would walk 30 times between the living room and the kitchen, adjusting the thermostat in as many times. She would be better with company/visitors than with us usually; in fact, there were a few times where she'd act almost like her old self, albeit short-lived (an hour or two). As t me passed, she no longer wanted to do much of anything, except eat. No longer was she able to put on a good face in front of others in general (few exceptions). Towards the last few months of her life, she was a full-fledged insomniac (maybe slept an hour or two, if that). Some nights, she never slept at all. 

Finally, a month before she died, she had a massive seizure. Her  mind was really gone now, although she still had her memory and was able to talk with no problems. She'  make sense for a few minutes, and then all of sudden, she'd be totally delusional. She was about ready to be discharged after three weeks, and suddenly contracted hospital-induced sepsis (which could have been prevented!).  She died 3 days later, if that. Her mind was completely gone in the last week of her life.

I know all about the pain of caregiving, as my father and I did for almost 2 years after her stroke. We knew the end was coming, even before the seizure. My mother just had no more will to live. Her mind didn't have to be as bad as it was, but she had terrible anxiety most of her life, and that made her stroke mind much worse. You often bring your past mental history into a stroke. 

Her aplastic anemia started to get better strangely at the end of her life. There was no explanation for this, as she had never gotten a second treatment, relying solely on transfusions. The last month of her life she needed no blood transfusions -- only platelets. That was all very bizarre.

As of now, my father and sister and I still feel so much pain every day. Everything my family did was centered on my mother. It's just hard beyond belief, as you know well. Yeah, some days are okay once in a while, but most days are either bad or just full-on terrible. That's just how the journey of grief goes. The first year was just a blur.

Some of my mother's sisters started fighting with me and my father because we asked them not to put pictures of my mother on Facebook. They act like we committed murder for just asking to be respectful to our family. They turned on us as quickly as you'd switch on a light. My m0ther's brother told us that we were sick because we were posting on Facebook with my mother's account (my father shared it with my mother). It was just awful. We've  cut them all out of our lives for good. One  aunt apologized and still talks to us a little.

Yes, it's true: you find out who really cares about you when you go through a loss. In my case, it's definitely not my mother's family. 

All in all, I know your pain. I unite with you in pain. Please let me know how you're doing.

Profound sadness is very normal because you loved your mother so much. You'll get through this all -- it just takes a lot of time.

Take good care of yourself.  Peace .