I’m Living with Dementia; are you?

A Note from the Editor: Reprinted with permission from MennoExpressions, Volume 32, No. 1 Winter 2019.

"Until there is a cure, there is care." For more information, see TeepaSnow.com.

​I am living with dementia. My mother and father are living with dementia. My brother, sister, and my kids are living with dementia – and so are their cousins.

Well, only one of us actually has documented brain changes signifying dementia, but when you have a family member with dementia, everyone lives with dementia together. What does it mean to “live with dementia?” Just like saying “I live with diabetes” or “I live with a new heart,” it means I am still the same person, but something has changed. In this instance, dementia means brain changes.

We all have brain changes, but with dementia (an umbrella term for over 100 different types of dementia), determining the type (or types) of dementia is a guessing game and often unreliable until an autopsy of the brain is done. In the meantime, I care for a family member with dementia.

Just over a year ago, my mother went to the hospital with vague symptoms of some pain and confusion. She should have been sent home for observation, but the doctors kept her overnight. This began a rollercoaster week of medications, scans, more meds to counteract the ones she reacted to, until (after sleeping for 28 hours due to exhaustion and overmedication) the doctors said she would die within a week and to take her home on hospice.

I flew out early on a Friday morning to meet with the doctors and make a decision about next steps. Together, my family spent the days crying, calling home health care companies, talking to hospice nurses, and debating what was the best approach to take. By Sunday night, we had a plan in place for 24/7 home health care workers and hospice care ordering equipment and medications to keep Mom comfortable.

Mom was bedridden and not always able to focus or speak much. Ned and I flew all three of our kids out to see her and say goodbye to their beloved grandma. Nathan sat up with her and talked and read to her. Luke helped with errands and food. Hannah even painted her toenails green and sparkly, the color Mom requested. Care required two to three people to be there at all times. I stayed for three weeks helping my parents manage a new reality.

Mom has always been a determined, outspoken advocate for many other people and there was no way she was just going to die.

Mom had different ideas of what her reality was going to be, though! Mom has always been a determined, outspoken advocate for many other people and there was no way she was just going to die. Within several weeks and with small improvements showing, Dad wanted her to get up and use a walker, strengthen her legs, and make more progress. We had to dismiss hospice as they don’t allow Medicare to cover physical therapy, only “comfort care.” I had to fight with hospice to get an antibiotic for a UTI!

We hired a physical therapist to come several times a week and slowly, she made progress towards walking. I have heard that one day in bed requires one week of recovery time. We looked toward the eight-week time frame when Mom would recover from the hospital stay and her system cleared of the powerful drugs they gave her.

I wanted to honor my parents’ wishes to live at home as long as possible. We had discussed a variety of possibilities, but Dad was adamant that home was the best place to be together. This required hiring 24/7 home health care aides as the family was unable to do the care and Dad needed sleep.

I quickly realized home health care is a business, and each one has a different philosophy and leadership. Agencies charge $23—$28 per hour but pay their employees low wages ($9-$12 per hour, with no benefits or health insurance), with random assignments. Training varies, with little to no dementia training. Home health care workers are exploited and have very high turnover.

In the first ten weeks after coming home from the hospital, we had 53 different home care people coming in and out of the house for 3, 4, 6, 8, or 12-hour shifts, plus hospice nurses. Add to that a long list of visitors coming to say goodbye, bring food, calling Dad, and offering other ways to help. To go from Mom and Dad being at home on their own to rarely a quiet time was confusing, disorienting, and stressful.

Forty eight hours of wake time with 24 hours of sleep walking and falling made for very stressful days and nights. We were in crisis, not working together, and we didn’t know what to do.

Unfortunately, Mom kept falling, hitting, biting, and throwing things at caregivers and they and we did not know what to do! Agencies quit. Staff quit. Agencies filed workers compensation for injuries. Staff had bruises on their jaws from being sucker punched during what we now understand was an active dementia phase. Mom had little to no sleep at night. Forty eight hours of wake time with 24 hours of sleep walking and falling made for very stressful days and nights. We were in crisis, not working together, and we didn’t know what to do.

One thing to note is that dementia does not equal memory loss does not equal Alzheimer’s. When we finally visited an Alzheimer’s and Memory Care Center with doctors specializing in geriatrics, my mother passed the memory component of the testing with flying colors! She doesn’t have Alzheimer’s. With two additional brain scans, the medical team ruled out some types of dementia, but couldn’t confirm what they thought might be happening. Her 88-year old brain shows normal signs of aging!

She responded very well to the medicine they prescribed, which is another way to determine what type of dementia she might have. Thankfully, the medicine helped her stop falling and having as many negative reactions to staff. Now we needed to find and train qualified staff.

This is where occupational therapist Teepa Snow’s “Positive Approach to Care for People Living with Dementia” (PAC) comes in. Teepa Snow has developed specific techniques to celebrate and care for people living with dementia. I had never heard of her, and I had little to no understanding of what dementia was.

She describes stages of dementia as six different gems. For example, a “Sapphire” would be someone like you and me: able to do all things, think clearly, and be independent. As dementia is a progressive disease, the gems change. The last stage is a Pearl, which may describe a person living with dementia as quiet, hidden, but still beautiful inside. How do we as Sapphires bring out the beauty of a Pearl? Intriguing.

Did you know people living with dementia can have limited vision, like looking through binoculars, and as the disease progresses, vision may become monocular? Did you know approaching a person living with dementia from the back where they can’t see you or hovering over the person can make them startle or lash out? Did you know that approaching someone living with dementia on their dominant side in a knee bent position about six feet away and greeting them with outstretched hand will eliminate much stress? Did you know the “hand under hand” technique (with your hand underneath and gentle pulses on the palm of the person living with dementia) is a simple, yet calming technique? I do now! Along with a variety of other techniques designed to bring out the best in someone living with dementia, we finally had a way to find light in a stressful situation.

As the agencies could not fill the needed hours of home care, and the overnights became the most misunderstood times, I began hiring caregivers privately, paying them a living wage, and Beth Tesfay, certified in Teepa Snow’s Positive Care Approach, trained them to become care partners. Finding the right person became a complicated mission of interviewing, posting on Craigslist, emailing local community colleges with LPN students, asking a friend of a friend of a friend for recommendations, but through hard work and perseverance, I began to find people with a variety of skills to help my family live fully with dementia.

The care partners work from three to 40 hours a week, and some have no caregiving experience at all! One woman loves to sing and read, so she brings bags of songbooks along and sings for a few hours with my mother, who loves to harmonize. One person has a fulltime insurance job, but can’t wait to retire and get her home health care business up and running. She loves working for my parents and just relaxes there. (She almost quit before learning the Positive Approach to Care techniques; now she plans to hire only staff with PAC training for her future business!) One person likes to sew and knit and gets my mother knitting her llama wool into scarves. One care partner manages to get my mother to do almost anything, having acquired a deep bank of PAC skills at her previous job. Two people only work at night as that is their absolute best time to work and be awake!

Together, with the help of my family, their neighborhood and church community, memory medicines, and the Teepa Snow techniques, we have put together a team of dedicated employees, several of whom have now worked for my family for over one year. I have lost agencies, had two people quit as they would not attend training sessions with Beth, but overall, at this moment I have a good team working together to help a family live fully with dementia.

Living fully with dementia today is very different for my family than it was one year ago.

Living fully with dementia today is very different for my family than it was one year ago. These days, Mom gets physical therapy twice a week. She attends church 95% of the time, goes out to eat with family and friends several times a week, and goes out to musical programs several times a month. My parents joined the “Sing for the Moment” choir for people living with dementia and their care partners, which was a wonderful experience. They never missed a rehearsal and can hardly wait until March when the choir starts up again! With help from her care partners, my mother is assisting with cooking and baking again, keeping the house organized, and making cards and gifts for a variety of people.

Oh, and did I mention the game of Pente? This simple, quick game played with green and yellow beads on a grid has complicated strategies and can be played for hours, which my mother does with every staff person and anyone else willing to play. Her record with a care partner is 76+ games in a row one night when they stopped counting! And, she often wins.

Perhaps this is a good metaphor of dementia: small brain changes that make for a complicated diagnosis and treatment, but provide endless ways to live full, fun, and engaged lives.