It’s strange to reflect on the quality of life with dementia, for myself and my mother.
“Your Mother looks so wonderful! You are so lucky to have her living with you!”
Coping with Mom and her Life with Alzheimer’s
Editor’s Note: No identifying personal information has been included about the author.
I grit my teeth and smile at an acquaintance I have not seen in months. Yes, Mom looks fabulous- well groomed, lipstick on with a bright smile. What people cannot see is that her brain is failing due to Alzheimer’s disease.
They also cannot see the fatigue and the hopelessness that I feel. I adore my Mother and I do feel blessed to have her in my life. Honestly, I never realized what it meant to live with someone with dementia. The physical tasks of helping comb their hair, brush their teeth and get dressed appropriately can be draining. Memory impairment robs executive functioning. A person with Alzheimer’s may put her dress over a nightgown or brush her teeth without toothpaste.
When a caregiver- whether or not it’s family- tries to help, they are often met with resistance because individuals living with dementia ‘know’ they have done the task properly. Caregivers have to learn how to provide assistance without making the person feel like they made a mistake.
This is challenging for people who have become accustomed to getting a full night of sleep and having little stress in their lives. To the weary caregiver who faces this challenge daily, or several times a day, it can result in a significant decrease in the quality of life. Heated arguments and rivers of tears are common.
My mother is incredibly healthy. Her quality of life despite dementia is high. An avid outdoors’ woman all her life, she is still active, loves to walk and be in the garden. At 70 years old, her medical records are nearly empty except for yearly physicals and neurology reports starting 3 years ago.
That’s when dementia became a household word and the whole family did research in the hope of slowing the progression of this disease.
The Challenge of Caring with a Parent with Dementia
My father was her primary caregiver and I visited once or twice a week. My sister lives across the country and would come each month for a few days. The family did not realize the extent of Mom’s dementia until Dad died suddenly last year. It was then that we realized how much Dad had been doing for Mom. Mom always looked wonderful when we saw her.
My sister stayed with Mom in her home following the funeral. Mom was awake most of the nights, wandering around the house. She would tell my sister she was getting ready to go to work or had to pick the girls up from school. Mom would have several layers of clothing on at the same time, refused to take a shower and did not seem to know how to comb her hair. We were stunned at her mental decline and wondered how Dad had managed. An appointment with the neurologist confirmed that Mom’s Alzheimer’s had progressed and she would need around the clock care for the rest of her life.
We researched options including memory care in assisted living communities, residential care, and family care homes. After reviewing the finances, we knew we needed to keep Mom home as long as possible. She does not have long term care insurance and while she is not poor, she would not be able to pay to live in a community long term. My sister and I decided that Mom would move in with my family. We found a wonderful adult day care program that caters to people with cognitive impairment. Mom would go there while my husband and I worked during the weekdays.
Reaching out for Dementia Support
We contacted The Dementia Alliance of North Carolina for information to help us with the transition. We set up her bedroom to look as it did in her home including her favorite pictures. I found a dementia support group and planned to attend. We thought we had everything in place.
We knew it would take Mom time to adjust to living in our home and to Dad being gone. Emotions ran high and the tears continued. Change is extremely difficult for people with memory loss.
For Mom, she not only lost her husband, she lost her home as well. Mom wandered the house nearly every night which meant I could not sleep. I was afraid she would turn on the stove or walk out of the house so I stayed awake listening to her. When I would encourage her to go to bed, she would get angry and tell me she was going to do what she wanted. When morning arrived, it was time to help Mom get ready to go to the adult day care. Occasionally, she would cooperate.
More often than not, there were more tears and the battle to get both of us dressed and out the door was daunting. By the time I would get to work, I was drained. My work suffered and I worried I would lose my job. There was also tremendous strain in the relationship with my husband. One of us needed to be with Mom at all times. Neither of us was sleeping. We weren’t keeping up with household tasks and we were eating primarily fast food. Our energy was focused on Mom.
Finding a Solution for Living with Dementia
I knew we could not continue this way. Then, I found home care. I didn’t know these agencies even existed. At first, we were not comfortable at the thought of someone in our house. The more research I did, I realized there are ways to choose the best one for your situation. We talked about what we needed most at this time.
With Mom’s quality of life with dementia regressing and her nighttime wandering, we decided we needed overnight care. We scheduled caregiver visits from 8PM to 8AM. With this schedule, the caregiver would arrive in time to help mom get ready for bed and allow my husband and I time to relax before we went to bed. The caregiver worked all night. She not only walked the house with Mom, some nights, they would do the laundry so we would wake up to baskets of clean folded clothes.
Other nights, they prepared meals so we had dinners ready to heat up when we got home. And other nights, they swept the floors and dusted the furniture. The caregivers not only allowed us to sleep, Mom enjoyed being busy doing tasks she was used to doing. In the morning, the caregiver was the one to help Mom get dressed and make breakfast. Initially, we had caregivers every night- until we felt we were no longer sleep deprived. We now have visits 4 nights a week to save on expenses.
What we have learned through this journey is you need to have support from different sources- build a team that will help you provide care to improve the quality of life with dementia.