Tools & Resources for the Dementia Journey
I feel compelled to write this after experiencing a truly beautiful holiday season with my mom. I never imagined that I would rekindle my relationship with her or that we would share such tender, meaningful moments as we have over the past several years.
As some of you know, my Mother, Peggy, was diagnosed with dementia more than eight years ago, and we have been on this journey together ever since. Her diagnosis is alcohol-induced dementia, and based on my lived experience, I believe this may be why her symptoms have progressed more slowly. I want to be clear that I am not a medical provider. What I share here comes solely from walking this path alongside her.
I also want to acknowledge, first and foremost, that the dementia and Alzheimer’s journey is not an easy one. In the early years, I relied heavily on the Alzheimer’s Helpline, which offers 24/7 support. I cannot recommend this resource highly enough. The kind individuals on the other end of the line have encountered nearly every situation imaginable and offer practical guidance, reassurance, and compassion.
I have called the helpline sobbing from the airport when my mom refused to travel with me from Florida to Minnesota. I have called them during moments when she became aggressive with a caregiver. Each time, I was met by knowledgeable, steady, and deeply kind humans who helped me find my footing again. Repeatedly, they have talked me “off the ledge”.
In many ways, I feel that I am one of the lucky people who has been able to relinquish a relationship of joy with my mom. It hasn’t always been this way. Allow me to provide a bit of context.
When my father was navigating lung cancer, I began to notice that my mother was no longer showing up in the ways she had during so many of his earlier health crises. She struggled to remember to give him his medications and was unable to tell me what the doctors said from one appointment to the next. This was striking, because she had cared for him through countless serious and life-altering situations. This time, though, she seemed distant, aloof, and often angry.
Toward the end of my father’s life, my mother was drinking more and more each day. Nearly every day was marked by anger or rage, and my father became increasingly afraid of her. I was traveling back and forth between Minnesota and Florida and could not be there daily. We created emergency plans with the hospice workers and our dear friends who were able to see what was happening. My dad and I tried to address alcoholism on multiple occasions and even attempted communication with her health care provider, who was unwilling to speak to us.
The night my father passed away, my mom appeared largely indifferent. She made several comments about him that felt unsettling, though at the time I attributed them to grief. Her health care provider refused to believe that she was navigating alcoholism or memory issues.
After my father passed away, my mom’s alcoholism advanced. Neighbors frequently reported to me her strange behavior and nearly every two weeks she had another goose egg on her head from falling. My mother reported that there were other women living in her home and that the neighbor hit her on the head with a frying pan.
There is so much more to this story, but I will pause the story here. Likely you have the flavor for the complexity that was happening.
In honor of my mom and so many others and care givers who are traveling this challenging road, I want to share some of the mindsets, wisdom, and resources that have helped me over the last eight to ten years.
Every person diagnosed with dementia has unique symptoms and trajectories. The twists and turns can be a challenge to predict and navigate. Some individuals may have multiple diagnoses that complicate the scenario. My mom also had a seizure disorder and that was challenging to parse out.
Please don’t argue with or insist on being right with your loved one. In fact, this is often one of the first hints that cognitive change is occurring. Most people with dementia are lost in time and space. They may not know what city or state they live in or who owns the house they live in. If you think about it, this doesn’t really matter as long as they are safe.
Telling the truth is not always possible. Sometimes the truth can be anxiety provoking to our loved ones. For example, telling my mom that I was selling her home would have sent her to the moon.
At the time I sold her home, I was not only her power of attorney (POA), but I was also my mother’s formal court-appointed guardian. My mother wasn’t aware she owned a home at the time. Instead, she thought that her parents owned the home, though they had never lived in Florida.
Using white lies or “therapeutic fibs” as described by Teepa Snow is a legitimate way of navigating challenging moments. For example, when my mom was in a facility in Florida, she refused to give a urine sample. The staff were frustrated, but when I spoke to her on the phone, I simply said she would need to go to the doctor to give a sample. She promptly became compliant.
Logic rarely applies to our loved ones’ behavior, thinking, or circumstances. The more we try to make sense of what is happening through a lens of logic, the more likely we are to become frustrated.
I recommend getting POA (Power of Attorney) paperwork in place before any diagnosis takes place. I ended up seeking Guardianship, in addition to being able to require mom to stay in the facility. Elder law attorneys can walk you through the process and determine what is most appropriate for your family.
A home assessment, ordered by a physician or psychiatrist, is key to getting 24-hour care or placement in an appropriate facility.
Don’t throw out the idea of hiring a concierge-style psychiatrist. At one point, my mother became physical with care providers. I was facing the idea of hospitalizing her in a psychiatric hospital, which would have been terrifying for her. If you are in the Sarasota/Bradenton (Florida) area, Dr. Miguel Rivera is the best. He also has a helpful YouTube series.
Don’t rule out an appropriate facility. After navigating my mother’s care journey, from having no help at home to 24-hour live-in care, and ultimately transitioning her to a facility, I’ve gained a firsthand view of what each option really entails. Not all facilities are created equal. My mother is currently in a fabulous facility here in Northern Minnesota, where I live, and they care for her as if she is a family member. She is truly living her best life, free of worry.
When my mother was discharged from the hospital, the physician insisted she be sent to a 300-bed facility that required 3–5 hours of physical therapy each day. It was clear the provider did not fully understand or acknowledge that my mom had dementia.
Instead, I found a much smaller facility that was able to bring in a physical therapist to meet her needs. Despite repeated attempts, I was never able to get a call back from the large facility the physician recommended, to even schedule a tour.
Trust your instincts when touring facilities. Pay attention to red flags and gut feelings, they matter.
The physician documented that I was going against her recommended discharge plan. Looking back, I’m grateful I did.
Conversation looping and “confabulation” are common. One of the initial signs of cognitive change that I noticed, in addition to argumentative behavior, was the looping my mother did for years before her diagnosis. These loops were nearly the same each time, word-for-word and they started happening only minutes apart as the disease progressed.
Enjoy the present moment with your loved one. While this can be challenging, the present is often all they truly have. My mother delights in laughing, singing, watching movies, and so much more. Yet, just minutes later, she may not remember which holiday we’re celebrating or what gifts she opened.
What remains are the feelings, the warmth of love, laughter, safety, and belonging. Those moments stay in our loved ones’ hearts, even when the details fade.
There is so much more I could say and share, but these are “top of mind” for me in this moment as I consider the path we have been on. My hope for you, too, is that you honor the care you have provided and find self-compassion for yourself. This is a challenging journey, under the best of circumstances. Please be kind to yourself.
