Laughter & Care for mom with LBD Dementia
Donation protected
My world turned upside down with a phone call in 2014 that still echoes in my head, the call was from my mother Pat. Pat was crying on the phone and said,” water is everywhere and rushing into the car”, the next words changed our lives as we knew it forever, Pat then said, “I have no idea where I am”.
At first, we thought this was due to low blood sugar or a bad day. However, after Pat began showing more signs of confusion and seeing bugs that were not there, we turned to medical tests to determine what was causing the loss of her memory and hallucinations. In 2015, Pat was diagnosed with Lewy body dementia http://www.lewybody.com/ . A shocking diagnosis for both Pat and I, Pat was only 63 year young and an active vibrant woman. At 63 Pat lost her driving privileges and could not manage easy daily chores such as paying bills cooking or running a household. Being her only child and mom having limited financial means, I became her caregiver with the help of her boyfriend of 25years. This was challenging because my job and house were about an hour away out of state and my work hours were long averaging about a 70-80 hour a week.
The past 5 years has brought us a lot of changes along with 3 major moves. It’s been shocking and mentally exhausting how difficult it is to get a loved one help. This is a brief timeline of our journey, and where we are today and why we are asking for help.
May 2015
After Pat was diagnosed it became clear my small one bedroom was not suitable or offered enough room for two people. I made a move to one-bedroom loft condo so Pat could have her own room and routine. This move came an increase in my living expenses and a decrease in my wages. Pat would stay with me 2-3 days a week then return to her house with her boyfriend the other 3 -4 a week when I would work long 10-12 hours shifts. Mom’s time with me was precious and filled with activities she could engage in, helping me cook, home facials, coloring, and long walks to name a few things.
,
September 2016
Sadly, with the progression of the disease Pat needed more care than what he boyfriend could handle. Pat moved in with me full time. My job allowed me to be creative and mom was set up with her own deck where she had a TV, DVD player and lots of crafts. She took on tying bows for the store bags and loved it! This this activity was taken very seriously because she thought it was a job and gave her purpose of being needed. We also continued our nightly walks and tried to make loving memories.
Late 2017. early 2018
Pats abilities began another decline. Her hallucinations became her reality, sadly she thought bugs were in her food and started to wander at night keeping both of us up. Pats attention span was less than 15 min and sadly she had reached a point of not being able to tie a bow or wright her own name. Finding in home care for mom or care at all for mom in our current living area was obsolete. Realized another change was needed
April 2018
We moved to be closer to family and get help for mom. Shortly after the move mom was excepted into the local adult day club, she loved it and started attending 5 days a week. This move allowed me to keep my job but added a one-and-a-half-hour commute. To help both of us my aunt cares for Pat two nights a week allowing me to stay with friends closer to work on those long days. The move allowed Pat to enjoy family, feel loved and be safe. It allowed me to focus on work while there and love mom while with her.
April 2019
Pats abilities are that of a “toddler state of mind”, she no longer dresses herself, eats or use the toilet without coaching. She is also showing more of the Parkinson’s side of the disease, with her loss of balance and low mobility. Pat own frustration with her disabilities have made her act out at the Adult Day club making it unclear how long she will qualify to attend.
Having spent hours trying to find in home help with no success, and the fear of my own abilities to provide the care Pat’s needs in the future sought out a social workers. The social workers found a memory care unit that will except Medicare, but we need help. The memory care unit is two hours from both my home and work, leaving me with an unsettled future and maybe another move.
Why we need your donations & where the money will go
The only way mom qualifies to be put into a memory care unit is to have a major medical emergency or pay for the bed unit Medicare kicks in. This cost is $8,000. a month. Mom receives a very small check from social security and my savings has been completed.
Pat needs to live out her remaining years safe and comfortable. She also needs family in her life, leaving me with another move. This chapter of our life has been filled with a lot of LOVE, but also a lot of confusion not just for Pat but for me on what the future has to hold, and how to move on after caring for mom.
PLEASE HELP US REACH OUR GOAL!!! Every dollar counts and will help us reach our goals of $32,467. This will help mom get care in the years to come and allow me to continue to be in her life.
Further information
Please follow are journey, we hope to help bring insight to this terrible disease and show how laughter gets you threw the darkest days. Love is felt, when the memory fades.
If you are unable to donate, please know that your love, support and prayers are just as meaningful to us. Please send thoughts and prays of strength and support as we navigate through the difficult day ahead.
At first, we thought this was due to low blood sugar or a bad day. However, after Pat began showing more signs of confusion and seeing bugs that were not there, we turned to medical tests to determine what was causing the loss of her memory and hallucinations. In 2015, Pat was diagnosed with Lewy body dementia http://www.lewybody.com/ . A shocking diagnosis for both Pat and I, Pat was only 63 year young and an active vibrant woman. At 63 Pat lost her driving privileges and could not manage easy daily chores such as paying bills cooking or running a household. Being her only child and mom having limited financial means, I became her caregiver with the help of her boyfriend of 25years. This was challenging because my job and house were about an hour away out of state and my work hours were long averaging about a 70-80 hour a week.
The past 5 years has brought us a lot of changes along with 3 major moves. It’s been shocking and mentally exhausting how difficult it is to get a loved one help. This is a brief timeline of our journey, and where we are today and why we are asking for help.
May 2015
After Pat was diagnosed it became clear my small one bedroom was not suitable or offered enough room for two people. I made a move to one-bedroom loft condo so Pat could have her own room and routine. This move came an increase in my living expenses and a decrease in my wages. Pat would stay with me 2-3 days a week then return to her house with her boyfriend the other 3 -4 a week when I would work long 10-12 hours shifts. Mom’s time with me was precious and filled with activities she could engage in, helping me cook, home facials, coloring, and long walks to name a few things.
,September 2016
Sadly, with the progression of the disease Pat needed more care than what he boyfriend could handle. Pat moved in with me full time. My job allowed me to be creative and mom was set up with her own deck where she had a TV, DVD player and lots of crafts. She took on tying bows for the store bags and loved it! This this activity was taken very seriously because she thought it was a job and gave her purpose of being needed. We also continued our nightly walks and tried to make loving memories.
Late 2017. early 2018
Pats abilities began another decline. Her hallucinations became her reality, sadly she thought bugs were in her food and started to wander at night keeping both of us up. Pats attention span was less than 15 min and sadly she had reached a point of not being able to tie a bow or wright her own name. Finding in home care for mom or care at all for mom in our current living area was obsolete. Realized another change was needed
April 2018
We moved to be closer to family and get help for mom. Shortly after the move mom was excepted into the local adult day club, she loved it and started attending 5 days a week. This move allowed me to keep my job but added a one-and-a-half-hour commute. To help both of us my aunt cares for Pat two nights a week allowing me to stay with friends closer to work on those long days. The move allowed Pat to enjoy family, feel loved and be safe. It allowed me to focus on work while there and love mom while with her.
April 2019
Pats abilities are that of a “toddler state of mind”, she no longer dresses herself, eats or use the toilet without coaching. She is also showing more of the Parkinson’s side of the disease, with her loss of balance and low mobility. Pat own frustration with her disabilities have made her act out at the Adult Day club making it unclear how long she will qualify to attend.
Having spent hours trying to find in home help with no success, and the fear of my own abilities to provide the care Pat’s needs in the future sought out a social workers. The social workers found a memory care unit that will except Medicare, but we need help. The memory care unit is two hours from both my home and work, leaving me with an unsettled future and maybe another move.
Why we need your donations & where the money will go
The only way mom qualifies to be put into a memory care unit is to have a major medical emergency or pay for the bed unit Medicare kicks in. This cost is $8,000. a month. Mom receives a very small check from social security and my savings has been completed.
Pat needs to live out her remaining years safe and comfortable. She also needs family in her life, leaving me with another move. This chapter of our life has been filled with a lot of LOVE, but also a lot of confusion not just for Pat but for me on what the future has to hold, and how to move on after caring for mom.
PLEASE HELP US REACH OUR GOAL!!! Every dollar counts and will help us reach our goals of $32,467. This will help mom get care in the years to come and allow me to continue to be in her life.
Further information
Please follow are journey, we hope to help bring insight to this terrible disease and show how laughter gets you threw the darkest days. Love is felt, when the memory fades.
If you are unable to donate, please know that your love, support and prayers are just as meaningful to us. Please send thoughts and prays of strength and support as we navigate through the difficult day ahead.
Fundraising team (4)
Michelle Gordon
Organizer
Gardnerville Ranchos, NV
Jeff Gorelow
Team member
JoAnne Grazzini
Team member
Rebecca Griva
Team member
