When my mother was first diagnosed with dementia, we couldn’t use the word "dementia" in front of her. She didn’t have dementia, she had "memory problems".
I would spend the next 15 years balancing my health care job as a nurse continence advisor and clinical educator with being a family caregiver for my mother.
In the beginning, our gerontologist said he might have missed mom’s dementia except for her poor math skills. My mother was a banker who could add a string of numbers in her head faster than you could write them down. The gerontologist prescribed medication, which did help to improve her memory for a while. She did stop taking the medication because her appointment was postponed and no one thought to reorder it so she started to decline. It is important to continue once starting medication. Once Mom was back on the medication she leveled out again.
As Mom’s dementia progressed and her condition deteriorated, the lines between working and caregiving blurred. I learned some key lessons about caregiving along this journey.
Lesson 1: Don’t put guilt upon yourself because you didn’t see things changing. Parents want to stay independent and protect their children.
Mom and Dad managed fairly well for a few years with her dementia without too much intervention. They took holidays to the U.S., up to the cottage, and out East. Then my Dad needed bypass surgery. Mom wanted to stay with him, so we arranged for her to stay in the hospital’s residence.
When I arrived for a visit, Mom had gone back to her room to get something but I couldn’t find her. When I did find her, she was wandering and searching for her room in the wrong direction. It was distressing to see her so lost – as I am sure it was for her. This was the dementia decline I had been expecting, but because they had been so independent I really didn’t see it. Or, maybe it was willful blindness.
Dad recovered, but Mom continued to decline. She wasn’t able to keep up with the financial tasks she had always managed. She paid the hydro bill twice and not the phone bill.
Mom was also becoming incontinent. Since I’m a nurse continence advisor, I thought I could “fix” my mom… but I couldn’t.
I arranged for the proper incontinence supplies, but she was just using regular feminine pads. My dad was doing daily laundry of wet clothes and sheets. I finally figured out that she thought incontinence pads were too expensive. So when my dad started getting a pension, we told Mom it was for her pads, and she started using them.
Lesson 2: Use any means available to support your parent. You have to use your imagination.
My parents came over to our place regularly for dinner. At home Dad did the cooking. Mom would say, "You cooked, I’ll do the dishes.” Then she would sit there until Dad got up in a huff and washed the dishes. She’d say, “Your Dad is always mad at me. I don’t know what I’m doing wrong."
I tried to explain to my dad that she wanted to do the dishes, but would forget. He had trouble handling these situations, and I had trouble watching them at odds with each other. When I learned Montessori methods for dementia I learned that if Dad had given her a physical cue, like handing her the dish towel, she would have gotten up and done the dishes. It would have alleviated a lot of stress for both of them.
Mom became frailer and spent two weeks in the hospital after collapsing at home. At this point she was admitted to long term care.
On the first day at the facility, likely confused and frightened, she stood up to walk to the bathroom and fell. She was then more or less confined to her bed, and within the month she got deep vein thrombosis and was re-admitted to the hospital.
When she returned to long term care, she was made to use a wheelchair, with the reasoning that she required two people to transfer her. Just a month earlier she had been walking independently.
I was able to use my professional knowledge to get Mom up and moving. I did get resistance from staff who felt her ablilities were unreliable. Fortunately, there was also a wonderful physiotherapy technician who helped mobilize Mom in her spare time.
Lesson 3: You know your loved one better than anyone. Trust your gut. Do what you think is best for them.
That fall, we transferred Mom to the facility that was our first choice. She thrived there. She did give my Dad a hard time, and that was very difficult for him. I was the Sergeant Major. She often told the staff that I kept telling her what to do. She would then smile a beautiful smile and say, “What would we do without you?” My answer was usually, “You would have a peaceful life.”
We laughed a lot. She walked to the dining room with a walker. The staff set her meals up, and she wolfed everything down. If she fell, they picked her up and had her walking again.
One evening after work I asked her if she wanted to give a fashion show with some new summer clothes that I bought for her. She stood up and sat down numerous times as we helped her try everything on. We laughed all evening. When someone came in to see what was so funny, Mom said, “the Sergeant is back and I have a new wardrobe.”
Lesson 4: People with dementia can make decisions. You just need to give them time.
Mom began to depend on a wheelchair. It was also difficult to get her in and out of the car.
We wanted her home with us one Christmas. My husband and my brother, a fireman, planned to carry her in a kitchen chair up the stairs to our big living room. When I explained the plan to Mom, she looked at the stairs and said, “I can walk up there.” With my husband and brother on either side, she marched up the stairs like a pro, enjoyed the afternoon and then walked down again 3 hours later for dinner. It was one of the best Christmases we’d had in a long time. It was also her last.
The following September, my dad passed away. When he was in the hospital we took Mom to see him and to say goodbye, but I’m not sure she understood then how ill he was. She went to his funeral and managed very well, considering her advanced dementia. We hired staff she knew from long term care to come with her so she was not left unattended.
Lesson 5: Don’t dwell on the dementia disease. Focus on the person’s strengths and enjoy their pearls of wisdom.
While managing her dementia care Mom and I spent a lot of time together baking, knitting, walking, driving and laughing. I highly recommend learning the Montessori methods for dementia.
Don’t dwell on the dementia disease. Value the moments, the pearls of wisdom, their smile, laughter and humour.
One memory that stands out now is when we were driving to a family event. Mom looked out the window and commented on the beauty of the trees and the sunlight. I’m not sure where it came from, but she was right. It was beautiful.
When one of my daughters broke up with a long term boyfriend, Mom said, “Well, we didn’t like him anyway. He wasn’t right for her.” She was right. When my sister first started dating an old friend, Mom came right out and asked him when they were going to get married. He said she would be the first to know. Mom was at their wedding, and she looked fabulous.
In October, after Dad died, I went to visit my daughter in BC for her baby shower. I went to see Mom before I left to say goodbye and to show her what I had bought from us for the shower. She was not eating and would not eat for me either. I took her back to her room and on the way she said, “What would you do without me?” I answered that I would miss her but be ok. I thought maybe she had got her words mixed up. She didn’t . When I arrived in Vancouver I got a call that Mom had taken a turn for the worse. The staff were wonderful and sat with her whenever they could, even on their time off, until I got home. It is important to develop a healthy working relationship with the staff. They were so valuable to us.
She passed three days later, exactly four weeks after Dad. It was difficult to lose them so close together. I knew they were hanging on for each other, and had missed each other very much for the last three years when Mom was in long term care.
I miss them both terribly. I encourage all Alzheimer’s and dementia caregivers to share stories and find support. Everyone learns something new along this journey. We often overlook our own needs in the caregiving process, but caregivers are at risk of burnout and need help too. It is hard to look after yourself but imperitive if you are to continue to care for your loved one and cope after they are gone.
Dementia is the longest funeral you will ever attend. It’s also a very meaningful journey. It’s an opportunity for us to say and do all the things we mean to, but sadly, often take for granted.