I’m very sad to let everyone know that Phyllis passed away on Sunday, May 27th. She went peacefully in her sleep, just three days after her 58th birthday. We are heartbroken that she’s not with us anymore, but we’re also incredibly relieved that she’s no longer suffering.
We are so grateful to everyone who has sent sweet notes, or prayed for us, or contributed financially to this campaign. I cannot express to you how much everyone’s kindness has meant. Specifically with this campaign, it has been so beneficial to my dad to have this money coming in over the last few months when he became Mom’s full time caretaker and was not able to work.
Any donations to this campaign from now on will go toward after-death expenses and helping my Dad financially while he adjusts to life without Mom, looks for a job, and gets back on his feet.
Our lives changed in 2012 when Phyllis began having trouble with tasks at work. At first we believed it was simple memory loss due to menopause. However, after being released from her job, Phyllis turned to medical tests to determine what was causing this loss of memory. In 2013, Phyllis was diagnosed with a subtype of dementia -- a shocking diagnosis for a 52-years-young woman… and for her family.
Our Current Situation
Neurologists tell us there is no cure for dementia; that the medications prescribed will only slow down the progress. Today, Phyllis' condition has progressed to a point that she cannot be left alone. She is unable to perform simple tasks like pouring a bowl of cereal or dressing herself, has trouble communicating her thoughts and needs, and has forgotten names of family members.
Thankfully, God has provided Stan with a job that permits him to work from home and care for Phyllis with help from friends and family. However, we are quickly moving to a place where more help is needed. This is the reason for our "Phyllis Fund".
We have no way of knowing how much time we will have with Phyllis - it just depends on how quickly her disease progresses. It could be two years, it could be twenty years. Either way, this will be an ongoing journey and we will need help in the years to come.
A Note From Phyllis' Speech Therapist
"I don't know how the next few months and years will be for Phyllis but I'm hopeful that she can maintain where she is for a while. I do worry about her future safety because I know some progressions of dementia involve loss of muscle movement. She does a lot of things from muscle memory like feeding herself and walking but I don't know how long that will last. I'm hoping she has many more years but I think it is important for [the family] to prepare [themselves] for that. I remember [Stan] saying that [he was] looking into long term care facilities and I think that will be so important for the future. I'm greatly impressed at [Stan's] ability to care for her. I know 24-7 can't be easy but [he is] doing an excellent job!"
Here is a short video demonstrating Phyllis' difficulty with words:
Where Your Money Will Go
In researching our options, we discovered that even the most affordable care for Phyllis would quickly drain the family’s finances. In-home care costs about $20/hour, for a minimum of 12 hours per week (we would likely need more than that, eventually). We are also looking into adult daycare programs, which cost about $50-$75 a day, but we’re not sure how Phyllis would do in such a new, stimulating environment. We are going to try both and see what makes Phyllis most comfortable. We would like to avoid an assisted living situation for as long as possible, but the uncertain nature of this disease makes planning for the future difficult.
Our fundraising goal of $13,000 is based on an estimate of $1,000/month - that amount would provide Phyllis with roughly 14 hours of in-home care OR 3 days of adult daycare each week for a year. Stan would also like to take Phyllis on a special anniversary trip this December while she is still able to enjoy that kind of thing. Some of the funds from this campaign may go toward this special trip, but the majority of the money raised will be used for Phyllis’ daily care.
A secondary purpose for this campaign is to educate people as to this terrible disease. You can read about Phyllis' condition here , and visit the FTD site for more general information about Frontotemporal Degeneration (http://www.theaftd.org/ ).
Please feel free to contact us through this gofundme page if you have any questions.
If you are unable to donate, please know that your love, support, and prayers are just as meaningful to us. Please pray for our family as we grapple with both the practical and emotional difficulties of this situation.. especially Stan. We also ask for prayers of healing - we do believe in miracles and are hoping for God to heal her miraculously.. but ultimately we want His will to be done, even if it is beyond our understanding. We love you all and feel blessed to have you in our life. Thank you for your interest in our family as we navigate through the ongoing difficulties of dementia.