By Laurie Price
“Lord, if it is best, you know my heart’s desire to keep Gary with me at home during these years.” I knew that God may have planned other types of care for my husband, and yet, I whispered this prayer from time to time for nearly a decade.
As Gary’s Alzheimer’s type dementia progressed, it became obvious that I would not to be able to meet his physical, spiritual and emotional needs without help. Every patient and family situation is different, but my aim is to share how we reasoned, prayed and experimented our way through finding help. I say “we” because even though I was making all decisions for Gary, I relied on what he would have wanted, and leaned heavily on the advice of family and friends.
During the early phases of Gary’s illness, no caregiver was needed. My husband of 33 years was a wonderful Christian man. Other than monitoring his activities and keeping an eye on his driving, we were able to do most things together, and when alone, he was content to work in the garden and enjoy a cup of coffee. Increasingly, as he became more confused, I needed to supervise more, such as taking charge of his meds and vitamins, and making sure he was not left alone. How did I know to do this? One morning he took an entire week’s worth of vitamins resulting in a very upset stomach. About the same time, on a weekday, he drove over to the church, without telling me where he was going. Needless to say, for nearly an hour, I was panicked until one of the pastors called and let me know where he was. Shortly after that, his neurologist talked to him about stopping driving. Thankfully, Gary was willing to let me do the driving from then on. I bought him an inexpensive medic alert bracelet just in case I couldn’t find him.
A year or two later, it became clear that it was going to be very difficult to remain in our longtime home. A hard decision needed to be made. We needed to move to a smaller, more manageable home, where Gary could be safe and I could have a simpler time caring for him. Decisions about our loved ones’ care are not made in isolation. Caregiving spouses and/or family members need to be considered too. My beautiful home and garden of 34 years would have required most of my spare time to maintain. I chose to favor Gary over old hopes and dreams of staying in our “forever home.”
Dementia patients eventually may shuffle as they walk, so we eliminated the tripping hazard of carpet and installed laminate flooring before moving into our new home. Similarly, I had mirrored closet doors removed so he wouldn’t be confused by them. As we settled in, Gary became less stable, so we added grab bars in the bathroom. Portable ramps would be added later on as would a camera/monitor system so I could be engaged in another room and still keep my eye on him.
Not being able to leave Gary alone, I brought him along on my errands, until one day, in the middle stages, I realized I would need to make other arrangements. We were at the market, an activity Gary always enjoyed, when he stopped walking and said “This is hard for me.” I looked around and tried to imagine why. There were multiple shoppers and carts around us, colorful and attractive food displays, loud music playing, and a model train running around a track near the ceiling. Although I was able to filter out the less important sights and sounds, my husband was not. I decided the time had come for other people to care for him on my errand day. My preference was to ask his old and new friends from church to hang out with him. They spent quality time together looking at photo albums, praying, walking, weeding and many other things.
We enjoyed the help from friends and volunteers in one form or another for the duration of Gary’s illness. Sometime during the middle stages, Gary began to need more personal physical care and I did not ask our friends and volunteers to help in this way. I began with the local Adult Day Care program which was more affordable than one-on-one care. This was not easy for me to accept. The thought of sending my husband, one of the most creative, inventive, independent, witty people I had ever known, to a “day care center” to be “baby-sat” just rubbed me the wrong way. Hindsight showed me that I had many false impressions. It was a family member who suggested that we at least let Gary try it and see how he did. I remembered back to things Gary had said in years past, with a healthy and humorous mind. “When I get to be old and a problem, just stick me in a corner somewhere.” I was reminded by a friend that Gary would never have wanted to be a burden to me, and if I needed a few hours a week to run errands or meet a friend for coffee without him, I should remember that he was a brave guy, and had borne many burdens for me over the last 35 years. I should not assume that he would not like the Senior Adult Day Care program. I decided to try it, and to trust that God would lead. When I brought him to the center, he was warmly greeted by kindhearted caregivers, who involved him immediately with the activities. He was content there and seemed to be enjoying himself. I am happy to say that our first experience with entrusting Gary to strangers turned out to be a good thing that lasted for two years until he began to require too much one-on-one care. I was sad to see it come to an end.
The need for someone to stay with Gary for a period of time on a regular basis was ongoing. The time had come for a professional caregiver in our home. I engaged a caregiving agency. It was difficult to entrust Gary to a stranger for several hours a week in our home knowing he couldn’t speak for himself. Lots of prayer went into this decision. As the Lord would have it, the caregiver assigned to us was a lovely Christian woman. While I ran around getting my responsibilities done, and having a little respite, she enhanced his life with walks to our recreation center where she played hymns on the piano for him, read to him and talked with him. As a trained professional, she was able to offer personal hygiene assistance as well. She wore scrubs and a badge, contributing to the appearance of professionalism, and I’m sure, setting Gary more at ease about the personal care needed. We couldn’t have had a better introduction to professional caregiving. There were many other caregivers over the next three years. Some were from that same agency, but most were hired privately by me.
Again, every situation is different. Financial resources, levels of need, and personalities vary. For Gary and I, finding our own caregivers through word of mouth, and our church’s opportunity sheet turned out to be the best route for us to take. My years of helping Gary with his contracting business had given me experience with scheduling, and payroll. I have always loved planning and organizing people and things. Putting together a notebook to keep caregiver information and schedules handy was actually a fun, nerdy project that I enjoyed. I could tell it would be a big commitment to do the hiring, firing, scheduling, and make sure we were complying with payroll and tax rules, but it was worth it to me to be able hand-pick and manage Gary’s caregivers. I was able to find an online payroll service that was very helpful. I checked with my homeowner’s insurance to be sure my household employees would be covered if injured.
Due to the high cost of care, and a very limited budget, I wondered if I should go back to work. I wrestled with this dilemma for some time, until I did the math, and realized that any moneys I netted would go to the full time caregivers. Instead I chose to ask the Lord for “our daily bread” and continue as Gary’s main caregiver. There were many, many periods of uncertainty that drove me to prayer, asking for wisdom and more trust. The budget was very tight but the Lord provided exactly what was needed for each level of care.
On the front end of needing care for an indefinite period of time, and needing to preserve dwindling resources, I continued to fill in with friends. For instance, Saturday morning one-hour visits from Bible Study group men allowed me a quick run to the store or a walk. I made sure he’d been to the bathroom first. This was for Gary too. He enjoyed the men in his life before, and I wanted to keep that going for him.
Gary’s balance eventually degraded to a point where I was hurting myself trying to help him walk without falling. He could still support his weight and walk, but a walker was too confusing for him. During an average day, he would need assistance getting to the bathroom, or a daily outdoor stroll, but stabilizing Gary was a two-person job. I couldn’t justify hiring a caregiver to sit around during a normal shift waiting for the occasional walk or help to stand or sit. What to do? A friend suggested I pray and ask God for the right kind of help, whatever that was. I couldn’t even imagine what to ask for, and the whole situation seemed impossible and discouraging. Looking back, I’m ashamed at my lack of faith. Shortly thereafter, the Lord provided a wonderful, young man who came to live with us for about 6 months to help as a volunteer. Jason was a friend of my daughter and son-in-law from their church who had been praying for us for some time. The Lord laid it on his heart to see if we would like his help for a while. He was a trained CNA (Certified Nursing Assistant), had experience helping an elderly man in their church, and had a telecommuting job that involved phone mentoring. The type of job he had dove-tailed perfectly with my occasional needs for his help throughout the day. He was even available to assist me with Gary at doctor visits, and other outings. I was shocked at what a perfect fit he was for our needs. He was well-vetted by my family members who had known him for years. He was a huge blessing and remains a special friend of the family. Nothing is impossible with God.
By the time Jason left, Gary’s mobility was greatly diminished. Gary was mostly confined to his bed, a wheelchair, or his recliner. His sleepiness was overwhelming his life, and even church became difficult as he was falling asleep in the wheelchair in an uncomfortable position. We tried a reclining wheelchair, but I could barely lift it in and out of the car and it was obvious that he would be more comfortable in his hospital bed at home. Another decision needed to be made. Would I continue attending church without my husband? For 38 years, we had worshiped together. The entire idea of being apart on a Sunday morning was foreign to me, and upsetting. Gary was physically unable to continue attending on Sunday mornings, and seemingly unaware of the change. For me this would mean a big adjustment and another opportunity for the Lord to stretch my faith. I “felt” like staying home with him, but as much as possible I needed to be with the body of Christ, on the Lord’s Day, and I was sure Gary would want me to continue. This particular lifestyle change was one of the most painful choices I made over the years, but the Lord comforted me. Being able to sing and hear the Bible taught alongside other believers gave me a peaceful, quiet kind of joy. Our regular caregivers wanted to attend church too, so I hired agency caregivers to fill in on Sunday morning shifts. The agency required a minimum of 6 hours per week, so I used the time after church to run some errands or go to lunch with friends.
Running concurrently with all these caregivers, was hospice care. Gary’s primary doctor recommended it for “us.” She saw how tired I was getting and suggested we apply because of the support that they can provide. I didn’t understand much about hospice at that time. Taken aback, I asked, “Are we really there yet?” Gary was still mobile, though he needed help with most “activities of daily living” such as safety, eating, drinking, grooming, dressing, hygiene, toileting, etc. Was he really ready for hospice care? He was not dying was he? His doctor explained more about hospice care, and I saw that it could really be a good fit for us. With Gary’s diagnosis of Alzheimer’s type dementia, he qualified for hospice and as he continued to decline in ability, and health, he was recertified periodically. By the time Gary went to Heaven he had received hospice care, in our home for 2 ½ years. His health aide came to us 3 times a week to help with bathing, walking, and range of motion exercises, and his nurse visited him weekly. Medicare paid for it and it was a HUGE help for me.
As Gary’s abilities declined and I grew more tired, the caregiving hours increased. Each wedding anniversary reminded me that I was on this journey with my beloved “until death do us part.” I scheduled enough caregiving so that I could have respite; weekly time with a friend, a monthly day away, a yearly weekend retreat. The caregiving was for me just as much as it was for Gary. Without regular “reboots” I would have burned out for sure. We started out with just one morning at the Adult Day Care, eventually adding a second and third. By the time Gary went to Heaven, between the volunteers, and professionals, we had caregivers in our home 28 hours a week. Our team of caregivers, each with their own strengths, gave so much to us, and became our friends. Gary’s illness began with occasional confusion, and ended with being bed-bound and sleeping nearly round the clock. At the beginning I knew nothing about caring for someone with a disability, but with each step, I learned a little more, and the Lord led us faithfully through our 9 year journey.
“Do not fear, for I am with you.” Isaiah 41:10
About Laure Price: Laurie was her husband’s caregiver for nine years. Gary had early onset Alzheimer’s dementia.