Phyllis' Young-Onset Dementia Care
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.
A lot has happened since my last update. I apologize for not keeping this space updated, but it's hard for me to write about what's happening with mom.
Mom has officially progressed from stage 6 to stage 7 (the final stage of dementia). In stage 7, the ability to communicate has continued to get worse, and we are starting to see signs of difficulty eating and walking. She usually has a lot of difficulty understanding even simple direction. She is also easily agitated and anxious, which is hard for those of us around her, both practically and emotionally. One minute she will be smiling and happy, and the next, she will be upset and crying. And in both cases, she isn’t able to communicate why she is feeling what she is feeling. It has been sad and hard.
With the official diagnosis of stage 7, we learned that Mom qualifies for Hospice care. When we first heard that, it took us by surprise, because Hospice care is typically reserved for patients who are in their very final days. But we learned that Hospice can play a critical role in dementia care, whether mom has months or years left. Dementia care is intense and difficult, so their role is to provide support for Dad and comfort for mom. The team includes doctors and nurses to keep an eye on mom's overall health, a social worker to help with various paperwork (and also a little bit of grief counseling), a chaplain for spiritual guidance, and volunteers who can hang with mom so my dad can take a break. They have been invaluable to our family since they joined us a few weeks ago. It has been a big relief for dad, and it has also been beneficial for us kids as well.
Overall, we are doing okay. Every day gets harder, but the Lord is providing through the generosity of so many kind friends. All of the time spent with mom, the dinners provided, the notes of encouragement, and the money raised have been such a blessing during this difficult time. We don’t know how much time we have left with mom, but we are so grateful to know that we are being taken care of. We love you guys!
PS: Dad wanted you all to see the video below. As mom has begun to have trouble walking, she has been practicing with a walker. This video was taken on a good day, as you can see she was able to follow direction fairly well.
Today as I reflect on 2017 I am reminded of God’s blessings, and then I am reminded of YOU! There have been so many who have loved and served our family this year. Home cooked meals delivered each week (because everyone knows I can’t cook ;P), Phyllis’ personal hair dresser/nail tech who takes Phyllis for a few hours to give me a break, friends who have taken Phyllis to lunch, to their home or shopping… once again providing a break for me. Kelli, Alex and Josh who sit with Phyllis while I attend a support group two nights a week. There have been those who cleaned the house and others who purchased medical items while some have simply stopped by to check on us… all a great blessing to us!
Also there are those of you who have generously donated to this campaign, so many with whom we share precious memories yet live many miles away, and also those whom we have never even met! You have been the hands, feet and voice of God in your prayers, your cards, your calls and your gifts. Please accept our Thank You and please continue to pray for Phyllis. We ask that God would heal her mind and bring her back to us!
I SO wish that you all could experience Phyllis’ smile in person and her wonderful hugs… she is still the same sweet Phyllis we have known for all these years!
P.S. Please feel free to share our story with others as we hope to raise awareness for dementia.
Some videos of mom from their trip:
- Mom in the car on their way, talking about Dad (and snow coming through the sunroof): https://youtu.be/DLjMAIk7xz0
- Mom saying “hi” to everyone from the back porch of their cabin with a beautiful view (note the way she holds conversations now.. mostly just repeating words): https://youtu.be/RUQz3-JQlQE
- Dad teasing Mom with snow and her silly reaction (They have always had so much fun together!): https://youtu.be/mF6Jv73SiAY
I want to give an update on where things are now.
As Dad mentioned in the last update, Mom’s dementia has reached Stage 6 of 7, and she requires extensive assistance to carry out daily activities. She forgets names of close family members and has little memory of recent events. I wish there we some good news to report but unfortunately there isn’t really. Things are just really hard and keep getting worse. She continues to be mostly happy and does still recognize us as people she loves, so those are things to be thankful for.
One of the original goals of this campaign was to raise money for in-home care for my mom. Dad and I have talked a lot about when would be the appropriate time to make this transition, but we are finding that this has been a very difficult call to make. For one thing, it's tough to say “We can’t take care of Mom anymore” and so we are resisting it as long as possible. But also, we know this disease can only continue to get worse, so we believe the wisest decision is to save the money for the inevitable moment when it’s no longer an option. For now, Dad is still able to take care of Mom with the help of myself and a few wonderful friends each week, though the demands are increasing as the months pass. In response, my dad has left his position with Wycliffe Associates, effective December 31st. He is currently searching for a job that allows him the flexibility to continue caring for Mom each day. We know the time is rapidly approaching when we won’t have an option but to get outside help, but we’re clinging to the way things are now for as long as we can, and we are grateful to have the funds from this campaign for when that day finally comes.
Again, we appreciate all of your donations, kind words, and prayers. They are all felt deeply, and we are so grateful for so many good friends that take the time to read these updates. It really means a lot to us!
I know Stan and Phyllis from Grace Ministries. We now live in Arkansas and my retirement career is as a home care provider. Some of my clients are stricken with this terrible disease. I love the pictures of Phyllis because she seems happy. That is the strange part of this think. The family hurts so much more than the person seems to. I hurt for all of you. My sister was recently diagnosed with the same but at least she is 70. You are definitely in my prayers
Phillips is so sweet b beautiful....so happy n her spirit is so alive....
Continue from previous post... maybe a raffle instead of an auction...
The Lord had placed something on my heart and it's not much but I'd like to put one of my wreaths up for an auction. 100% of the money collected will be sent to you to help with Christmas. Hopefully folks will bid good for you and your family. I'll also ship it if needed (in the US) at no charge. I would love to have your blessings before doing it though. Your family holds a special place in my heart and in so many other folks hearts as well!! Love y'all!