National Caregivers Month
Caregiving is becoming a public health issue. As diagnosis for Alzheimer’s related diseases increases, so does the number of caregivers. According to the Alzheimer’s Association, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias each year. In 2019 alone, caregivers provided an estimated 18.5 billion hours of care.
While facts and figures are a vital part of recognizing this crisis, they only tell part of the story. They don’t humanize the daily caregiver struggle with mental fatigue, social isolation, and despair. They don’t illustrate the beautiful love behind the hard choices and the heartache of those who still remember when others have forgotten.
For National Caregivers Month, we aim to share caregiver stories of lessons learned, lives lived, and love that endures tragic circumstances. For those who remember, like Jack Sanderson, the pain is real, and their stories deserve to be told.
Jack Sanderson is a caregiver for his wife, Norma, and the first to bravely tell the story of their life, love, and the dramatic effects of dealing with Alzheimer’s.
Meet Jack and Norma Sanderson
Norma is the love of my life. It’s hard to put a lifetime into a few Facebook posts, but people be made aware. Caregiving is challenging enough without a pandemic to compete with. This is not the life we imagined together. I want to be with my wife, but I want to keep her safe. Right now, I can’t do both. Nearly seven months into this COVID nightmare, and still counting. The situation remains-look but don’t touch. Frustration, fear, anxiety have all taken on a new meaning. I want the hugging and touching switch to be turned back on. If it doesn’t, things will only get worse.
Oddly enough, it all began at a shoeshine event at Michigan State College during the Spring Quarter in 1954. A group of women from North Williams Woman’s Dorm (where Norma lived) raised money for a campus charity event by shining shoes at the Phillips Hall Men’s Dorm (where I lived). I mentioned to a friend of mine that I thought the petite little brunette in the grey skirt was really nice, so he and his girlfriend arranged a blind date, and that was where it all began.
We were married during our senior year on September 8, 1956. We brought our first daughter Wende into the world in January of 1958. I went on active duty in the US Air Force in March 1958 and after flight training in 1959, was posted to RAF Station Sculthorpe, an airbase north of London. Because Air Force regulations did not permit women who were 6 months or more pregnant to fly on military aircraft, Norma had to stay home with my parents and deliver our second daughter, Erin, all by herself.
Because of more regulations regarding the age at which newborn babies could fly, I didn’t get to see and hold Erin until mid-summer of 1959. Our third child, and son Russell, was born in November of 1967 in Pontiac, Michigan, and Gretchen, our fourth and last, was born in Gainesville, Florida, in 1969.
We have been truly blessed as all of our kids are happily married, thankfully employed, and we have been blessed again with 7 grandchildren (6 boys and 1 girl) and thus far, 3 great-grandchildren (1 boy and 2 girls) who are now scattered around the country in Boston MA, Macon GA, Thompsons Sta. TN, Tuscaloosa AL, Denver CO, Seattle, WA, and Portland, OR.
What’s Happening with Norma?
We first noticed small changes in Norma’s condition and behavior during a river trip in 2015. She seemed to lack her usual amount of energy and enthusiasm. She tired quickly and seemed to want to sleep a lot more than necessary.
On one of the side trips, our small group had wandered farther than we thought. We soon realized that and had to run back to the ship before they left without us. Norma just couldn’t keep up the pace, and we literally had to carry her.
Shortly after, the falls began to occur, and she suffered some severe bruising on her head and back. This became a serious concern for us. After more testing, x-rays, and MRIs, she was diagnosed with spinal stenosis, which explained some of the loss of balance and frequent falling. Then came the usual forgetfulness and memory loss.
Our doctor wasn’t available to meet with us one day, so we met with his PA. She ran some memory tests with Norma and suggested we meet with a neurologist. We did that, and he arranged for us to meet with the health psychologist for some additional testing. She ran Norma through several days of intensive testing and concluded that Norma was suffering from MCI.
The neurologist disagreed, calling it early Alzheimer’s, which was a shock for us. We didn’t believe anyone from our families had ever been diagnosed with Alzheimer’s. Late last year, our doctor downgraded her condition to the final stage of Alzheimer’s.
The Caregiver Dilemma
I truly believed that I could handle it and take care of her. Still, soon we had to hire someone to come in a couple of times a week in the morning to get her up, give her a bath, get her dressed, and sit with her while I got went out to do the running around that had to be done.
Then came numerous concerns and family debates about the need for a move to a retirement care community. That meant selling the house, liquidating many sentimental possessions, leaving a city and friends we truly enjoyed and loved, and moving up to Macon, GA, to be closer to our oldest daughter.
This was a heartbreaking time in our lives and very difficult for both of us. We made a move to a long-term care community in Macon during January of last year. With the endless help of our four kids and their families, it all went very smoothly. We settled into a two-bedroom apartment in independent living to begin yet another new chapter in our lives.
The Tough Decision
We knew that we would have another tough decision about an eventual move into memory care. Still, we didn’t think it would happen so quickly. The mental decline and the falling continued.
We were blindsided when Norma began to wander. One day late in October, we were both in the apartment. I worked in the office, and Norma was reading in the living room while outside the staff was arranging chairs and tables for a late afternoon event.
Then, the doorbell rang, I opened the door, and there was Norma between two staff members holding her up by her arms. She had watched the people setting tables, so she went out of the patio door without the walker and stumbled out because she wanted to help.
Because wandering in an LTC community can become a significant liability issue, I answered the door again the next morning. I greeted the CEO and several other leadership team members, who kindly advised me that it was time to move Norma into memory care. I argued against it, assured them that it wouldn’t happen again, and provided ways and solutions to prevent it. They politely listened and gave us another chance.
Two weeks later, an identical situation occurred again. The doorbell rang, and there was Norma between the same two staff members. They found her riding up and down on the elevator. Somehow, she had gone out the front door, and I just didn’t hear her leave. The next morning, again, the doorbell and the leadership team, but this time there was no second chance.
In late November, we had to move Norma into memory care. 80 days later……COVID19!
Along Came COVID
Alzheimer’s is complicated, and COVID19 is complicated. Mix them together, and the result is toxic. The solution(s) will take patience, understanding, forgiveness, a smile, and a hug. Your loved one needs all of this.
I’ll take any kind of lifting of regulations that come along, but we’ve got a lot more lifting to go. Before COVID-19 and when Norma first went into memory care, our lives underwent a considerable change. It was easier for me because I had a massive amount of worrisome responsibility and weight taken off my shoulders.
For Norma, it was the exact opposite. She despised what was happening to her, and worse of all, she blamed me for “getting rid of her.” And that was like a blow to the heart, and it wasn’t the last time I would hear that accusation.
I could call her on the phone, go up to her room, sit with her, and hold her hand. I could check her out of memory care, take her down to our apartment, eat together, talk, watch TV, go shopping with her, go for a ride in the car, do all of the things that a happily married couple usually does. It was not the most excellent arrangement, but it was bearable.
We had a sense of togetherness, but I was still responsible for getting her back to her room that day. It sort of reminded me of getting your date back to her college dorm by 11pm.
Then came March 11, and all that was good became a nightmare and a bad dream.
Can I Talk to My Wife?
Presently, there are three communication/visitation methods for family members with loved ones in memory care.
Telephone. If your loved one can still independently use a phone or cell phone, you’re in luck, but that’s not the case with Norma. We must utilize the one phone (at the nurses’ station) available for resident use. That phone is still and, hopefully, without restrictions. Yet, often family members must make multiple calling attempts as the phone is being used by another resident.
Video chat. Our memory care unit utilizes either Facetime or Zoom. We can do one 20 minute chat per week, but you must sign up in advance for a specific time and date. It works fine when all goes well, but Norma has difficulty holding the screen in place, so often, we’re looking at the ceiling or the chair across the room. Once the GA infection rates dropped below an established number, the rule got better. Now we have 2 visits per week and 1 video chat, but that is causing some confusion as a question has come up. The rule also states that if you do the visitations, you lose the video chat, but what if one does just 1 visitation instead of 2. Do you still lose the zoom? No one seems to know, and the one person that could solve the mystery has been gone for almost 3 weeks.
Visitation Booth. We are fortunate, as our LTC has built a visitation booth that enables us to visit with Norma. It’s 10 – 12 feet square with transparent Plexiglas walls, nicely appointed with cushion chairs, rugs, and plants. Norma sits inside, and up to three visitors sit outside the booth. There is still no physical contact, but you can see Norma and do the hands on the window thing (look but don’t touch).
Obviously, it’s better than the telephone or Facetime. It works very well, but often residents and/or visitors have difficulty hearing each other. We have solved that reasonably well by using two cell phones on the speaker. The staff is looking into some sort of 2-way speaker system, so it may become a reality if all of this goes long term.
We are allowed two 20 minute visits per week, and you must reserve a time and date in advance. For this to work efficiently, visitors must be allowed to access the property and enter the building. But when the state or county infection rates go up, and visitors are not allowed, the visitation booth has to close until the rates drop back to an acceptable level and visitors are again allowed access to the property.
There’s always the hope that written letters would work, but that doesn’t seem to be successful either. Norma cannot remember what she had for breakfast, if hard to put anything down on paper.
Emails and other forms of electronic communication obviously are out of the question. What I do that seems to work is to send up a care package on Friday afternoons. The weekends are slow in memory care (I think), so the care package gives her something to open and perhaps produce a little comfort and maybe put a smile on her face.
It’s just a manila envelope with a couple of newspapers, a magazine, a couple of candy nuggets (she a bit of a chocoholic), and a card with a remember photo (our kids, grandchildren, trips and vacations, friends, whatever, etc.)
What Does She Do All Day?
Norma remains under the “shelter in place” orders, with no visitors allowed into her room. There are daily activities for the residents, so I am told. Still, you don’t know which or any activity in which she participates. CNA’s and staff can encourage participation, but they can’t insist. You don’t want to continually bother staff, and I can’t ask Norma because she can’t remember. So I’m left in a state of constant uncertainty about what she does during the day.
What can I do to help with her care? Staff will insist she’s ok, but I can’t just sit and wonder.
The major problem that fuels my frustration and mental state of well-being is the landslide of federal and state rules and regulations that bury the healthcare facilities to the point that they can barely function properly. CDC, CMS, DPH, HIPAA, (US Fish and Wildlife – who knows)? The frequency and requirements are so demanding that the facility is forced to hire additional staff to handle the paperwork. If you don’t, you have to overload existing staff, which takes them away from their primary function of caring for their residents. They literally are caught between a rock and a hard place.
Caregivers in Crisis
There are many sources of information about caring for someone with Alzheimer’s and dementia. Still, I would advise caregivers to learn as much as you can about the disease. Read, watch, listen, and talk to other caregivers because this is how you know how to approach the problems that come up between you and your loved one. Be willing to try new something different, improvise, and share. Your solution to a situation may help someone who is experiencing the same dilemma.
I have attended several meetings with dementia support groups, some of which I believe are organized by the Alzheimer’s Association. We had one going here at our facility, but that has been put on hold during the COVID19 crisis. I have made several inquiries about restarting the group utilizing one of the video chat forums, but nothing has materialized so far.
I think my most significant frustration is that I’m not in control. I’ve given that control over to the LTC. But, when problems arise, I sincerely believe that all issues have solutions. Still, solutions
have to be tested and proven feasible before they can be enabled and established. But when you are tied up and unable to move by rules and regulations that perhaps have not been tested or discussed, then the problem persists and becomes impossible to solve.
I think our healthcare staff and nurses are doing their absolute best under these circumstances. Their job is made almost impossible with all the rules and regulations that change so quickly. I personally know that many of them love what they are doing. God bless them for doing and carrying that thought in their heart and soul.
To read more stories or to share your own, visit alz.org/honor