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Watching a Parent Who Has Pick's Disease Slowly Slip Away - Part 6

Updated on April 13, 2012

I remember getting the phone call on August 25th, from my mom's care facility just like it happened yesterday. They were calling because my mom was sick and they needed my permission to transport her if needed. My dad was out of town on vacation at the time and they were unable to get a hold of him. I was finally able to reach him and advised him about mom's condition. I went to check on her later that evening after I got off from work. The doctor's were currently treating my mom for a bladder infection and she was having trouble with her oxygen levels. She was placed on oxygen and the staff told me that she has been in bed the last two days. When they would take her off of the oxygen her O2 stats would drop.

After I left her care facility, I called my dad and updated him of her condition. I teased him that she knew he was out camping in her favorite spot and wanted to go with him. On Thursday, the nursing home calls me again because the doctors decided to send my mom to the hospital by ambulance. I left work immediately and drove to the hospital to meet my mom. She was in serious condition when I got there. She was struggling to breathe, it was heart breaking to watch. My mom was then transferred to the ICU. I spent the afternoon at the hospital with her.

The doctors said my mom had pneumonia and was very sick. They began to treat her with heavy antibiotics and administered breathing treatments. She had a CPAP machine placed on her to assist her with her breathing. My mom had a DNR on file and they wouldn't tube her. She seemed to be getting a little better the next morning when I went to visit her. I spoke to her doctor and they figured out that she was aspirating. This is what was causing her pneumonia. Her diaphragm was also very weak on her right side, the doctor said she has muscle degeneration. I called my dad and let him know what the doctor said.

I notified my mom's side of the family to let them know that she was very sick and that she was admitted to the ICU. She remained in ICU for about a week before my dad made any decisions about her care. My mom didn't want to remain on life support for an extended period of time and her prognosis wasn't good.

It took a few days for the hospital and my mom's Alzheimers care facility to coordinate my mom to return home. My dad contacted a hospice care company to assist in keeping my mother comfortable. They transported my mom back to her home on Monday evening. The hospice care team immediately stepped in and made my mom comfortable.

She passed away on September 1, 2010.

Brain Autopsy Revealed TDP-43

The end of mom's life was only the beginning, she was part of a research program to help doctors and health care professionals further understand Pick's disease. They took her brain shortly after she passed away, so that they could do a complete analysis on it.

It took them almost a year for them to provide results to my dad. The autoposy report showed that my mother had Pick's disease or frontotemporal lobar degeneration with adnormal TDP-43 Immunoreativity.

The TDP-43 is being found in 25% - 50% of Alzheimer's patients. Researchers are unsure whether this is an incidental finding with Alzheimer's disease or it this protein is actually a contributing factor. This protein is found in the hippocampus, amygdala, and adjacent areas of the brain. The hippocampus is located in the temporal lobe of the brain and it plays an important role in behavioral functions, memory, and is the cognitive map. Alzheimer's dieases attacks this region of the brain. Once the damage starts taking place, patients begin to exhibit memor problems and disorientation. As the damage progresses, more symptoms such as oxygen starvation, inflammation in the brain causes confusion, memory problems and hallucinations, and can contribute to seizures.

There is still very little information on how exactly this gene plays a role in Pick's disease, Alzheimer's disease, and other forms of dementia.

If a loved one is diagnosed with this horrible disease, they can help researchers find a cure for future patient's by participating in study groups and allow researchers to perform an autopsy on their brain.

In Loving Memory....

I wrote this 6 part story about my mother's battle with Pick's disease in hopes to help others become more familiar with the disease. As well, as help caregivers realize that they aren't alone.

It has been a little over a year since she has been gone, I miss her dearly. I wish she was still here to go shopping with, hang out with, and for her to see her grand babies. I know that she is a proud grandma. She knew my two older kids; however, I was blessed with my third child in May of 2011. She didn't get to meet him and this makes me sad.

Mom loved many things in her short life, but her favorite thing to do was spend time with her family. She looked forward to soccer games on the weekend and going camping in Colorado at Chapman Dam Campground each summer. She always wore a smile on her face and always thought of others even after she was unable to speak.

My dad shared with us that she was given some flowers in her nursing home and then she saw some family members there grieving the loss of their loved one. She took the flowers and gave them to the family members.

Mom you may be gone but you are not forgotten. Love you always.


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    • BEAUTYBABE profile image

      BEAUTYBABE 

      6 years ago from QUEENSLAND AUSTRALIA.

      I knew this was going to be a sad story but your have written a brilliant account of what you and your family went through watching your mother slowly slip away as you knew her.

      I'm sure she would have been very proud of you in using her story to alert others to not only what this disease entails, the symptoms to look for in someone but also the way to support them.

      You have also shown in all six stories in such a beautiful way the love you had for her and the way you helped her keep her dignity right up to the end. Sometimes when people are in a hospice or palliative relatives feel bad that they are not caring, but you have shown here that this is the best way to deal with this. The people in these facilities are trained to look after the terminally ill in ways that we can't.

      Thank you once again for opening your heart to all of us here and especially me, as I have gained so much from your rendition, even though it was so sad.

      I am also on cpap with humidied oxygen at home now because I have a condition called severe obstructive sleep apnoea which causes me to stop breathing when I am sleeping and my O2 stats drop down so I need humidified oxygen.

      I am getting used to it now.

      I want to congratulate you on these six hubs regarding your mother's journey from the time she was diagnosed with this heinous disease, Pick's Disease to her time of death.

      You may not realise this now, but in time a lot of people will read these and identify with the symptoms, etc as being similar to symptoms a friend or member of their family might be experiencing.

      This is a brave thing putting all the details down in writing. I know that from personal experience because I have written hubs about my own situation. I am so pleased that she was in her own home with her family around when she passed away, which is the way it should be.

      Like you I hope one day they do find cures for these diseases that are so debilitating that they stop those suffering from doing the things they enjoy in life.

      I will be thinking of you on September 1st, the 2nd Anniversary of her death.

      I feel like I know you after reading all of these stories. Thank you once again for sharing.

      God bless Pam x

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