I read a tweet this morning by a woman who shared to recount the loving words her mom, who suffered from dementia, said to her. That made me think about the multi-year dementia journey my mom endured during her final years of life. When I first realized Mom was in the tight grasp of dementia, I searched the Internet for information and first-hand stories. I wanted to learn all I could about this disease and how to best help my Mom. That's why I'm inspired to write today--I hope our story can be helpful to others.
About five years ago, my Mom had a serious surgery for a long term health problem. There was a problem during the surgery and Mom lost oxygen for a significant period of time, enough time to cause the start or acceleration of dementia with Mom. Mom survived the surgery.
At the time, Mom was living with Dad, and I only saw here every couple weeks or so. There were a few early events that alerted me to Mom's changing cognitive abilities. She brought her usual delicious oatmeal cookies to our house, but the cookies clearly lacked an ingredient and were uneatable. Then there was a walk we took where Mom could only walk a short distance and was somewhat confused, and the time I lost her in a department store. Soon after that Mom stopped driving when she side swiped a car on a local street. While clearly on the dementia slide, Dad was taking good care of Mom so I didn't worry much. Plus Mom had another medical condition related to back pain that prevented her from going many places or staying in any place for any length of time so she was mostly homebound.
My sister was the first to recognize the severity of the problem. After a visit, my sister realized that my parents needed more support with regard to health care appointments and oversight. She encouraged us to get more involved. I was not as helpful at that time because I was so entrenched in the work needed for my own family and my work as an educator yet, I knew my sister was right. So when COVID hit, teaching became tough, and my parents' needs grew, I decided to retire from teaching and commit more time to my parents' care.
That began my journey as a part-time caregiver. I had a lot to learn, and made a fair share of mistakes as I journeyed this path. My first aim was to organize the situation by setting the stage at home and online for their best possible care. All the while, I worked with my siblings to support my parents in this regard.
Setting the stage for successful living at home was a key ingredient to helping Mom while she faced her dementia. First, along with other family members, I simplified the environment by getting rid of or moving all unnecessary, outdated, and unneeded items throughout the main rooms of their home. I also, reorganized in ways that made the essential items readily accessible. Further I purchased furniture covers and a number of tools that helped mom to be comfortable and as independent as possible. This was a trial and error process as some tools and purchases didn't help at all while others were greatly helpful.
Quality of life was always at the forefront of the work we did with Mom. Discovering and engaging in activities that she enjoyed was a positive effort. This was a trial and error process too. At first, we took drives, went out to lunch, and attended local events. As the dementia grew deeper and COVID hit, we ate out less and focused engagement on at-home dinners, get-togethers, and shared activities such as puzzle making, looking at old photos, watching shows, and reading short books.
A good two or three years into her dementia, Mom experienced a stroke. She survived the stroke, spent a number of weeks in a rehab and came home with the inability to eat solid foods or speak. This was a dramatic turn. The Visiting Nurses would not take Mom as a client and she was accepted into a Hospice program. The multi-discipline Hospice staff was terrific--they educated me a lot about how to help Mom and were there on a regular basis to help Mom and the family. We continued to revise our supports as Mom's condition changed.
Thanks to Mom's strength and her will to live and stay with Dad, she regained her mobility, ability to eat, and some speaking ability over time. Her dementia, however, deepened, and ability to care for herself was greatly reduced. Our care of mom required much more skill. We had to learn how to take care of Mom's medicines, personal needs, and more. I found this stage to be very emotional. It was very difficult to see my Mom so changed and unable to live her life as she always had. Luckily Dad remained a constant, loving, and eager support for Mom, and this brought us all strength. Again, via trial and error, we tried a lot of supports such as Meals on Wheels which didn't work out for my parents. What worked best was simplifying the schedule and home for ease of access to good supports and good living. In addition to hospice, we added additional personal support personnel. Family members visited and helped out often too.
A year-and-a-half after Mom experienced the stroke, hospice released her from their care. Mom stopped declining and was no longer able to receive hospice services. In hindsight, we should have challenged this which would have bought us more time with regard to hospice's excellent services. It took us some time to find another agency and put that care agency in place. Sadly, that agency had little information about end-of-life care so Mom's care by this group was hit-or-miss. The direct care individuals who cared for Mom's personal needs were excellent, but the more professional members of this team didn't understand what it takes to care for a person as old and physically challenged as my mom. This was problematic. Mom's condition continued to deteriorate until she simply stopped eating or desiring to move from her bed. Clearly, in pain during those final days, we urged the new agency to do a better job in order to make her comfortable and cared for as we didn't have the medical knowledge or ability to comfort Mom. Finally, they gave Mom the kinds of medicines that relaxed her. Family visited. We played a lot of music and spoke a lot of comforting words. After loving care by a home health aid and in a house full of family members, Mom died. Her long dementia journey was over. While very sad, Dad was grateful that he was able to care for Mom during her long illness and that she was able to die at home. Unlike many, I will never say Mom was ready to say goodbye--she definitely fought death for a long time as she had last rights about four times in the past few years--her condition would dip dramatically and then she'd rise up again. Mom definitely loved life.
I do believe that we all did what we could for Mom. Was it best to leave her at home. Many say yes, and I say that I'm on the fence in that regard. I do think it was good because Dad really wanted her to be home, but her care needs were so intense that I'm not sure I would have kept her at home if we didn't have Dad there 24-7 to help her. Plus her illness did take a toll on Dad who was essentially her nurse for her final years--he too was mostly home bound at that time since he was caring for Mom.
No two dementia journeys are exactly the same. One of the most difficult parts of the journey was collaborating around my Mom's care with family members and other caregivers because everyone has different experiences, expectations, and availability when it comes to caregiving. You learn a lot about each other during a process like this and it's likely that you won't always agree on what the best course of action is. This disagreement, to a large part, is based on a lack of experience as well as our deep personal connections to the person you are caring for. The more you can talk to your loved ones about your desires for later life and the more you can organize your home and assets, the better. While I experienced this challenge with Mom, my husband and I did finally create a will to help our children deal with our later life needs with some ease. Fortunately my parents had a lot of those decisions in place too which helped us with regard to our roles and efforts.
Looking back, what would I change? First, I would have been a bit more on top of my Mom's needs early on. Fortunately my sister did awaken us to her needs. It wasn't easy for my sister to be the first to recognize the need for greater care. Next, I would better understand how every family member meets a loved ones' needs in different ways--I'd respect that diversity of experience and effort more.
As for what I'd do again, thanks to the research I was able to do via friends, expert organizations, and the Internet, I'd definitely do the following:
- simplify the home making objects and spaces for good living easily accessible
- connect to helpful organizations and caregivers
- establish a positive routine of caregiving
- make sure someone is in charge of the financial issues and paperwork
- access the supports available in the community
- manage health needs via Internet accounts and attending needed appointments
- discover and engage in quality of life activities
- learn as much as possible and be open minded as to changing care needs and responses
- be gracious and thankful to the many people who will help you on this journey
- don't hesitate to do the hard work
- take time for respite--when caregiving is intense, you need breaks now and then