Help with Bev's Brain Cancer Caregiving Needs
Donation protected
Our Story
In June my mother, Beverly, began suffering weakness in the right side of her body. She had been in San Francisco for a few months caring for my grandmother. Over the phone she told me that she couldn't even hold up the curling iron with her right arm to style her hair-- which we figured might have been from straining a muscle while gardening. We told her to make an appointment quickly, because in less than a week my dad would be flying out West where they would meet and drive back across country together. They had planned a road trip across the country, with stops in Sedona and the Grand Canyon. It was going to be the first time they had taken a trip together in years because well... life just gets busy sometimes.
The day that my dad was flying out, June 24th, mom suffered a seizure that turned out to be caused by a tumor on the left side of her brain. I emailed my dad while he was on the plane to tell him that mom had been taken to the hospital. Four days later, we were all in San Francisco while mom underwent a craniotomy. The doctor removed as much of the tumor from her motor cortex as possible so as not to leave her paralyzed on her right side. Later, the tumor was diagnosed to be a Glioblastoma Grade 4 (GBM 4), the most aggressive form of cancer. We were scared, but we had something to work towards -- getting her home to Virginia to start treatment and the keeping her focused on physical therapy to help get movement on her right side.
Unfortunately, just one day after being back, she suffered a hemorrhagic stroke that left her with aphasia (limited ability to speak) and apraxia (diminished motor functions). Essentially, she is still herself and can take information in, but she has trouble getting information out. It was a huge blow to our family and it felt more dire than when we had received the initial diagnosis because we felt powerless in these new circumstances. The biggest blow was when the doctor in the ER told us that her severely weakened condition meant she would no longer be a candidate for chemo and radiation treatment and that we could now only focus on making her comfortable.
When your loved one is in a dire medical situation and can no longer communicate the way they could before, it's an excruciating position to be in. All you want is to do the right thing for them and make the right decision that will keep them comfortable and with you for the longest amount of time, while realizing that their time is precious and finite. We can't change the fact mom is facing a terminal illness, but we are determined to get her the best care that we can. We decided to move her from the hospital closest to our home in Stafford, VA, where she had been taken after the stroke, to Inova Fairfax. It's a terrible commute with tons of traffic, but we had heard good things about their work and were still hopeful that we could get her the care we thought she deserved.
Where We Are Now and Why We Need Help
Mom now has a great medical team. She's been out of the hospital since mid-August and living at home, which is what she wanted all along. Even better, she regained enough strength that she became eligible for treatment and is now halfway through her first round of chemo and radiation for the GBM 4. She's gotten back some of her speech and physical ability and is still growing stronger even though the chemo and radiation take a lot out of her. She is able to perform basic tasks, but needs a lot of help. Her brain is wired differently after the stroke. Her progress and recovery is bittersweet in so many ways, but we remain hopeful that she'll continue to improve in her abilities.
After you go through a life changing event you might long for the old days but you know that life can never really go "back to normal". I feel sad when I think about how I'll never get to go to the mall with my mom again and walk around until we get tired and end up at a restaurant drinking wine. But I try my best to focus on the present, and all that my family and I want is to give mom the best life she can have. That's why we are starting this GoFundMe to raise $15,000 to ease the financial burden on our family and provide my mom the best life she can have. It seems like a huge amount of money to ask for and at the same time it's a drop in the bucket of what it costs to care for her. We plan to divide the expenses up into three buckets: $2.5k to help with housing modifications, $2.5k to help with medical bills, $10k to help with paying for a private homecare agency to provide care for mom 8 hours a day, 3 days a week.
Home caregiving is an incredibly costly expense that is minimally or sometimes not at all covered by health insurance (the latter of which is true in our case). The cost of home caregiving is not just in financial resources, but in time, energy, and emotional well-being. While a full year of care will cost us around $32k total at the current rate of care, it will also mean sleepless nights, hundreds of hours driving back and forth to treatment, and the occasional sore back from accidentally lifting mom out of her wheelchair the wrong way. Of course, we wouldn't think twice about doing this because we love our mom and want to do anything it takes. But we need help to make it possible.
The work since my mom has come home from the hospital has taken a toll on myself, my brother and his fiancee, and my dad (who would do it all himself if he could). The type of care my mom needs, non-medical, private-duty caregiving, is what sustains her recovery and ensures a sense of dignity and a decent quality of life. Not only does mom need help with essential personal care tasks, but she needs help to keep her mind and body active to the best of her ability.
If you can give what you can and spread the word, we would be so grateful.
In June my mother, Beverly, began suffering weakness in the right side of her body. She had been in San Francisco for a few months caring for my grandmother. Over the phone she told me that she couldn't even hold up the curling iron with her right arm to style her hair-- which we figured might have been from straining a muscle while gardening. We told her to make an appointment quickly, because in less than a week my dad would be flying out West where they would meet and drive back across country together. They had planned a road trip across the country, with stops in Sedona and the Grand Canyon. It was going to be the first time they had taken a trip together in years because well... life just gets busy sometimes.
The day that my dad was flying out, June 24th, mom suffered a seizure that turned out to be caused by a tumor on the left side of her brain. I emailed my dad while he was on the plane to tell him that mom had been taken to the hospital. Four days later, we were all in San Francisco while mom underwent a craniotomy. The doctor removed as much of the tumor from her motor cortex as possible so as not to leave her paralyzed on her right side. Later, the tumor was diagnosed to be a Glioblastoma Grade 4 (GBM 4), the most aggressive form of cancer. We were scared, but we had something to work towards -- getting her home to Virginia to start treatment and the keeping her focused on physical therapy to help get movement on her right side.
Unfortunately, just one day after being back, she suffered a hemorrhagic stroke that left her with aphasia (limited ability to speak) and apraxia (diminished motor functions). Essentially, she is still herself and can take information in, but she has trouble getting information out. It was a huge blow to our family and it felt more dire than when we had received the initial diagnosis because we felt powerless in these new circumstances. The biggest blow was when the doctor in the ER told us that her severely weakened condition meant she would no longer be a candidate for chemo and radiation treatment and that we could now only focus on making her comfortable.
When your loved one is in a dire medical situation and can no longer communicate the way they could before, it's an excruciating position to be in. All you want is to do the right thing for them and make the right decision that will keep them comfortable and with you for the longest amount of time, while realizing that their time is precious and finite. We can't change the fact mom is facing a terminal illness, but we are determined to get her the best care that we can. We decided to move her from the hospital closest to our home in Stafford, VA, where she had been taken after the stroke, to Inova Fairfax. It's a terrible commute with tons of traffic, but we had heard good things about their work and were still hopeful that we could get her the care we thought she deserved.
Where We Are Now and Why We Need Help
Mom now has a great medical team. She's been out of the hospital since mid-August and living at home, which is what she wanted all along. Even better, she regained enough strength that she became eligible for treatment and is now halfway through her first round of chemo and radiation for the GBM 4. She's gotten back some of her speech and physical ability and is still growing stronger even though the chemo and radiation take a lot out of her. She is able to perform basic tasks, but needs a lot of help. Her brain is wired differently after the stroke. Her progress and recovery is bittersweet in so many ways, but we remain hopeful that she'll continue to improve in her abilities.
After you go through a life changing event you might long for the old days but you know that life can never really go "back to normal". I feel sad when I think about how I'll never get to go to the mall with my mom again and walk around until we get tired and end up at a restaurant drinking wine. But I try my best to focus on the present, and all that my family and I want is to give mom the best life she can have. That's why we are starting this GoFundMe to raise $15,000 to ease the financial burden on our family and provide my mom the best life she can have. It seems like a huge amount of money to ask for and at the same time it's a drop in the bucket of what it costs to care for her. We plan to divide the expenses up into three buckets: $2.5k to help with housing modifications, $2.5k to help with medical bills, $10k to help with paying for a private homecare agency to provide care for mom 8 hours a day, 3 days a week.
Home caregiving is an incredibly costly expense that is minimally or sometimes not at all covered by health insurance (the latter of which is true in our case). The cost of home caregiving is not just in financial resources, but in time, energy, and emotional well-being. While a full year of care will cost us around $32k total at the current rate of care, it will also mean sleepless nights, hundreds of hours driving back and forth to treatment, and the occasional sore back from accidentally lifting mom out of her wheelchair the wrong way. Of course, we wouldn't think twice about doing this because we love our mom and want to do anything it takes. But we need help to make it possible.
The work since my mom has come home from the hospital has taken a toll on myself, my brother and his fiancee, and my dad (who would do it all himself if he could). The type of care my mom needs, non-medical, private-duty caregiving, is what sustains her recovery and ensures a sense of dignity and a decent quality of life. Not only does mom need help with essential personal care tasks, but she needs help to keep her mind and body active to the best of her ability.
If you can give what you can and spread the word, we would be so grateful.
Organizer and beneficiary
Alexis Gonzaludo
Organizer
Garrisonville Estates, VA
Richard Gonzaludo
Beneficiary