Please tell us your name and a little about yourself.
My husband, John, and I live in Raleigh, NC where he is the Director of the Raleigh Rescue Mission. The RRM is a ministry that seeks to Rescue, Renew and Restore homeless individuals to a relationship with Christ and move them on to full employment, car ownership and affordable non-government housing.
We have two daughters, a son-in-law and granddaughter who all live nearby.
I earned a BS degree in Journalism from the University of Kansas and a MS in Community Counseling from Georgia State University. I also earned a diploma in Christian Counseling from the Psychological Studies Institute.
I spent nine years after college on the Staff of Campus Crusade for Christ (CRU) serving in various capacities. Six of those years I worked with college students ending up at the HBCU’s of the Atlanta University Center working primarily with female students from Spelman and Clark Atlanta colleges.
Since the birth of our children I have worked in the field of education. Most recently I have worked as a Chaplain and as a substitute teacher.
Can you tell us about your journey as a caregiver?
In 2007 my family was living in a suburb of Atlanta, Georgia and my mother was living in an Assisted Living facility in Topeka, Kansas. My sister was the only sibling still living in Topeka and was doing a great job taking care of moms needs; such as paying her bills, making sure she had her meds, taking her back and forth to Dr. Appointments and church activities.
Then Mom broke her hip and had to move out of her Assisted Living residence because she would need more care than they could provide. My sister was forced to put her into a convalescent home near where she lived. Mom didn’t like it at all and hardly ate any of the meals served there, except for ice cream! She dropped 30 pounds in a year and a half. The home began suggesting a feeding tube be inserted. Because she was so healthy and functional otherwise we felt this was too drastic a measure at that time. After much prayer, John and I decided we would move Mom to Georgia to live with us to see if she would start to thrive again. This started our caregiving journey
When mom came to Georgia our oldest daughter Courtney, was starting her Senior year in high school and Lindsay was starting her Sophomore year. The stage of life John and I were entering is aptly referred to as “The Sandwich Generation”. The caregivers are sandwiched between their parent(s) who need their care and their children who also need their care. Being in this sandwich, we would find, left very little wiggle room and our lives, as we had known them, changed drastically.
Mom had moderate Alzheimer’s disease and was fairly functional physically. She used a cane or a walker and toileted herself during the day. She ate without assistance, and could swallow her pills. This, I thought wouldn’t be so bad. Then came the endless phone calls to Social Security to get her checks arriving at our home. Getting our office transformed into her room, finding a doctor that specialized in geriatric patients, getting her prescriptions transferred etc.
My teenagers were pretty self-sufficient but mom on the other hand had to be helped with her RDL’s; (routines of daily living) such as bathing, combing hair, putting on her clothes and more.
Mom was a trooper though and did not complain, except about my insisting on more than one bath per week. We had a two-story house and someone had to help her up the stairs in the morning and at night.
My major difficulty with this new normal was that I could not come and go as I pleased anymore. I didn’t feel comfortable leaving her at home by herself in case she fell on the way to the bathroom, or become disoriented and try to go upstairs with out assistance. There were a few places I could take her along, like to my prayer group. But taking her places like the grocery store was much harder because she couldn’t get the hang of the battery powered seated carts and she could not keep up with me using her walker. I would have to wait until another family member was at home to run my errands.
This is where the girls were so helpful! Even though they were busy teenagers, they never minded me going out in the evenings and keeping an eye on mom. I was almost always back in time to do moms bedtime routine. I can only imagine how difficult it must be for a caregiver who has no one they can call on to give them a break.
With Courtney heading to college I decided to go back to work as a Substitute teacher to help with college costs. I found a wonderful adult daycare center called “Sarah Care”. When I had a teaching assignment I would drop her off in the morning and they would feed her breakfast and lunch. She never could remember what she did there but she always seemed happy to go.
How has your faith shaped your role as a caregiver?
My relationship with Jesus was and still is the bedrock on which I found my footing. Taking care of someone who can’t fully care for themselves is reminiscent of caring for an infant, only without the cuteness. There were many times I was resentful of the loss of my freedom or just got tired of the daily chores involved in her care. I had to continually ask God for the strength and patience to keep a positive attitude and to serve mom as she had so selflessly served us as children.
I was forced to cast my cares on Jesus so that I could keep moving forward. Jesus did indeed give me just enough strength for the day I was experiencing. I soon depleted any personal horded emotional resources and would have to spend time in the word of God to refuel and be reminded of Gods great love for me. The example of Jesus himself being equal to God but coming to earth and humbling Himself, living as a human, not demanding his rights, dying on the cross for us was my ultimate example.
Can you share any challenges you faced as a caregiver and how you overcame it?
I think my biggest challenge was feeling trapped and alone. Even though we did move Mom into a personal care home for the last year of her life, as a Caregiver you are never free of the concern for your care receiver. I still visited her a couple times a week and we took her with us to church on Sundays as well as doctor appointments, etc.
I talk in the book about my experience when mom was in our home. On many mornings I woke up happy to start a new day. When I remembered that Mom was in the next room and that I would have to get her up and start our morning wash up routine, I would become full of dread. In those moments sadness would overwhelm me and I would feel trapped and hopeless. I would have to confess my attitude and thank the Lord that He loved me much more than I could imagine. I could then take a deep breath and ask for His strength to face another day.
There was also the challenge with Alzheimer memory loss. Mom’s memory was greatly compromised and therefore she was often confused; many times asking the same questions again and again. This especially happened regarding her mealtime. She would continually ask when dinner would be served and then five moments after dinner ask when we were going to eat dinner. This especially enraged our youngest daughter who would yell back at mom, “you just ate five minutes ago grandma! This same daughter did learn to be patient with her grandma and was the one I depended on to help out with mom after her older sister went to college.
Another challenge was vacations. I had two brothers who lived in the area but did not feel comfortable taxing them with the job of taking care of mom’s bathing and dressing for any extended time. My sweet sister-law would probably have been willing but she worked full time herself and they didn’t live nearby. Thankfully we found a Sr. Living home nearby who offered respite care by the week. We used this respite care several times and it was great refreshment for the whole family. Several times we took mom with us on short weekend trips.
I share in the book about one vacation experience where we look mom to a family reunion. It was a fourteen-hour drive! As you can imagine she was not the best of traveling companion. It seemed that every 5 miles she asked how much further it was to our destination or inquired of the driver, who was usually John, how fast he was driving. It had always been mom’s habit to never sleep while she was a passenger so as to help keep the driver awake.
The girls and I were ready to throw mom from the moving car after a few hours but John continued to joke with mom and defused the situation. He would answer her with little quips like, “would you like to drive a while mom, I’ll pull over and hand it over to you. “ Do you need some exercise? I’ll let you get out and run along side the car, or even, when we stop to get gas I’ll let you pump mom”. He asked her questions and talked to her, which helped to keep her mind occupied. We were all grateful for my wise husband. This became an example for us all in dealing with mom! You can actually diffuse the annoying memory loss with humor!
Can you tell our viewers about your book, “Who Cares for the Caregiver? Discovering God’s Care in the Midst of Chaos“?
The book is a short memoir about our family’s experiences giving care to Mom. Each chapter looks at a difference biblical theme that relates to how God is the ultimate Caregiver for those who give care to others. He meets our needs while we are striving and sacrificing to meet the needs of others. Although our jobs as caregivers was 24 hours a day while mom lived with us, I envisioned the book to also be useful for those who are caregivers as an occupation, such as doctors, nurses, childcare workers and those sacrificial souls who care for the elderly in senior living settings.
What inspired you to write this book?
My friend Ginger suggested I write a book to help other caregivers. Although I love to write, this was not a project I wanted to attempt. After mom went home to be with the Lord I continued to meet people who were caregivers. I worked as a chaplain in Senior Living homes and worked with family members and had constant contact with the wonderful staff who cared for those, who like mom were hard to deal with. I warmed up to the idea to start writing this book.
I ran into snags trying to find an editor that I could afford, and I had no idea where I would have it published. Upon our move to Raleigh, I found a writers group that met monthly. This helped me be accountable for finishing the manuscript and I also found an editor and publisher thru this group.
Were there any new lessons you learned during the process of writing?
One of the reasons I was so hesitant write the book was that for a very long time everything was still so fresh and my emotions still raw. When I finally started to put some thoughts down; before I knew it I was half way finished. I did not know if I could write about the last months of mom’s life when she was on hospice. But it became a cathartic experience to relieve the story and I felt myself healing from within.
I learned from this experience that I could do hard things though the power of the Holy Spirit!
In my own strength I was not able to get beyond the feeling of sadness, There were also feelings of false regret that I had to fight. Satan will fill your mind with thoughts that you did not do enough. Don’t listen to these attacks.
I also learned that one has to do a bit of writing each day, or at least every few days to get into a rhythm, or routine. It has to become like brushing your teeth; a part of your routine.
Lastly, I learned that there are so many people around the world who are giving care to others who needed the encouragement that I needed. I am getting such great feedback on how the book has been helpful. For that I am grateful!