Meet the delos Santos Family
Tim, Rachel and Wee
I recently received a call from our friend Sol Angel. She was reaching out to ask if I thought our group could help a really wonderful family who was in need. She explained that this was a young couple in their 50’s with a teenage daughter. The wife was suffering from early onset dementia. She had been a physical therapist but was now unable to work. The husband had to quit his job to become her full time caregiver.
I will be honest with you, immediately my mind was flooded with a list of all of the demands on my time at present. Where was I going to find the time to devote to this family when I was already feeling overwhelmed with the fullness of my own life. Well, I didn’t stay in that place very long before I knew, of course that I had to help. I asked Sol Angel to send me the details and I would figure something out. Who could say no when an “Angel” asks you to help right?
So, this was on a Friday morning. At 11:30, I was to meet with Carina at Watercrest. While we were meeting, someone from the Alzheimer’s Association stopped by. When she left, Carina made the comment that she wished she could spend her time raising money for the Alzheimer’s Association. It was then that I was reminded of my earlier conversation with Sol Angel. I shared the story of the woman with the Alzheimer’s –like dementia, with Carina. She grabbed a notepad and ideas flew from her pen so fast I could barely keep up. Soon there was an entire page filled with possibilities; fundraisers, a 5K run, respite care for mom, free up time for the husband to possibly work part time or at least get some rest and of course, something special for the teenage daughter whose world had been turned upside down.
Wow! This was amazing! I knew immediately that it was no accident that Spirit had led me there. It was Spirit was saying
“See Jean, you just had to be the voice to carry the message, there are many hands here to share in the doing of it all.”
A meeting was arranged so that we could get to know this special family and hear first hand what their needs were. Right on schedule a couple walked in the door. Imagine my shock when I realized that I knew this woman! At first I was just so happy to see her again. I ran to her and hugged her! I had not seen her in a couple years. I asked her if she remembered me. Her eyes lit up and she said, yes. We sat down at the table and I held her hand. Then it suddenly hit me. The realization of why she was there sitting next to me finally sunk in. Sadness and disbelief flooded my thoughts as I looked into her eyes, I was now looking into the eyes of a friend. No longer was she” the woman with early onset dementia.” This was my friend Rowena (Wee).
As Wee’s soft spoken husband Tim shared the details of their journey, he would look at her lovingly and reach out to her. She said very little, but he would offer her the opportunity to add to the conversation. She and I sat side by side, holding hands under the table. We would look at each other and smile. I could see such love in her eyes and I wanted her to see that I loved her too. Sometimes she would, in a mere whisper say, I remember you and I would say, I remember you too.
I am reaching out to you, as I so often have done over the years.
I am letting Carina take the lead on her many great ideas and I will let you know about them as they develop. You know me, I am a grassroots kind of girl so I am going to start with asking for help with a number of things. Walmart, Winn Dixie, Target and Publix gift cards are always a blessing. That way they can use their very limited funds for other things while being able to use the cards for food, prescriptions, personal care items, household goods and even clothes. You can also donate nonperishable food items, household cleaning supplies, toilet paper, paper towels and the like. Oh, and how about gas cards? That would be great too! And cash! Yes, I am happy to accept cash!
In being kind of nosey, I also found out that the kitchen faucet is leaky and the garbage disposal doesn’t work. If you know how to repair such things and are willing to help in this way, please contact me. There may be other household repairs that I am not aware of, so if you are handy that way, let me know as well.
Perhaps one of you enjoys yard work? Although I did not discuss it with Tim it is probably difficult for him to even get outside to cut the grass, as Wee cannot be left alone.
Do you work for a homecare agency? Would your company be willing to donate some hours where a caregiver could spend time with Wee while her family tends to other things or even just gets out of the house for awhile? Wee is very sweet and gentle. I know they would love spending some time with her. They may even know her as she has worked with many homecare companies over the years. She was able to express to me that she really misses her patients.
What about a gift certificate from a cleaning service? I would want to ask Tim how he feels about that, but if it is in your heart to provide such a service, let me know and I will ask him.
Well, that is probably a good start. Please contact me if it is in your heart to offer a helping hand in some way, big or small.
Feel free to call me to pick up your donations or you can drop them by Medco if you pass that way. You can also bring donations to the AIE meeting on Tuesday the 19th. I have lots of room in my car. The great thing about gift cards or “foldable green energy” is they are easy on the back!
Thank you on behalf of Wee, Tim and their daughter Rachel. They hope by coming forward in this way that they can bring much needed awareness to the community about corticobasal dementia.
The story below was written by Tim in 2015. It documents the beginning of their journey with this life altering disease. God bless.
Life According to Tim – Written in 2015
In April 2014 I lost my job and at age 50 Rowena was diagnosed with corticobasal dementia, a rare progressive neurological disease. There has no cure. A once highly independent, successful, and caring physical therapist now needs assistance in dressing, speaking, orientation, movement (e.g. going up and down stairs); all activities of daily living that people take for granted. Our daughter, Rachel, was in the 7th grade. We had to pull her out of Providence where she attended since Pre K-3. At twelve years old her world fell apart.
Presently I am Rowena’s full time caregiver. Social security disability benefits are our only source of income. (1/4 of our previous income). At one point our house was days from being foreclosed. We have adjusted to not having access to hot water and an old but still safe high mileage vehicle.
Unemployment and chronic/long term illness produces anxiety, doubt, stress, worry, anger, and depression. Our family relationship(s) and dynamics were and still continue to be strained due to the “Job like” situation. Friends started to disappear and disassociate. People were not willing and able to sympathize and eventually apathy resulted in confusion, loneliness, and emotional isolation. An invisible caste system became evident. It’s not feasible to relate when two families are in different, contrasting, and non-congruent circumstances. It can be attributed to economic and professional inequality. Tragedy plunged us to yearn for a deeper significance and purpose in life. Our abyss like season of life affected us spiritually, emotionally, and physically.
As a family we are adjusting, but have not completely accepted this season of life. Rowena’s dementia/Alzheimer’s is medically progressive with no cure. She is disabled and I am not able to work. Rachel going back to Providence is no possible.
It’s not a coincidence that God led us to Celebration before the tragic events. It was November 11, 2012, the day the Arena opened. Our purpose in visiting Celebration was shallow; to smell the new paint, check out if Celebration had theater seating, world class lights, HD screens, and disco like sound. As we sung “You Amaze Us” we were captivated and overwhelmed by the worship experience. We all three elbowed, looked at each other and in our head said, “There’s something about this place. The next week we literally ditched our old church in exchange for the presence of God. (Proof that loud, well-engineered disco-like sound brings people to Jesus :)
Five months before tragedy struck, God, by His divine plan placed us at Celebration. Pastor Stovall’s anointed and powerful preaching style is perfect for Rowena. She has found hope, comfort, peace, and healing. Her health and things of the world that she thought identified her were ripped away. But God filled the void, the emptiness.
Before Rachel was born our hope was for God to give us a child that will honor and serve Him. With God’s grace and prayers Celebration Church made Rachel a disciple, a Christ follower. Her faith and salvation is her own not ours. Rachel attends FUSE/RIOT, now she’s serving with Celebration Worship. All the services, sermons, worship experiences is her cope emotionally. Her RIOT friends, leaders and the staff of Celebration encourage her to stay strong and to focus on His unconditional attributes. Rachel continues to develop in ministry, worship, homiletics, personal evangelism, and in apologetics.
Through this journey our dependence on our unchanging God has multiplied. It’s drawn us closer as a family. Back then the stress and busyness of American life forced our priorities to be misaligned. Now we live a God First Life, where order is restored, blessing is released! God’s love was re-revealed and we truly experienced the presence and manifestation of God!
Going forward, we covet your continued prayers for complete restoration and a super natural healing for Rowena. Miracles? Yes, God is still in that business! Thanks for this opportunity for us to “show God off”!
Tim delos Santos