What I’ve Learned About Helping a Loved One with Dementia

A family emergency gave me an opportunity to care for a loved one with dementia.

Recently, my mother had a medical emergency that required my family to adjust our own lives to take care of my father, who has dementia. I’ve been living with him for the past several weeks, and I’ve learned quite a lot. There have been successes and challenges, moments of joy, and times of intense frustration. The experience has also illuminated how society views those with the condition of dementia.
 
When the opportunity arose to help my father as a caregiver, I jumped into this new role with gusto and determination. Time to give back to my dad for all he had done for me! In my youth, he had pulled me out of the fire on more than one occasion.
 

I learned that you can have fun caring for a person with dementia.

Instead of leaving my dad at home alone (not a good idea), I made it a point to include him in our errands—like grocery shopping.
 
At the store, I helped him into an electric seated shopping cart and off we went. Because of some range of motion limitations, I had to manage the acceleration and deceleration of the cart, but I still got my Dad involved with the shopping experience.
 
I made him part of the process, got him involved, and empowered him to make decisions that affected him and included him. At the deli section: “Dad, you want turkey or ham?” In the produce section: “You want strawberries or blueberries?” Spirits: “Red wine or white?” Who says you can’t give an old Italian his grape juice with dinner?
 
During checkout, I warned him about flirting with the grocery bagger. Who says you can’t use humor with a person with dementia? I hopped on the cart on the way out. “Dad, you be James Bond and I’ll be Ms. Moneypenny!” I hummed the 007 theme song as we motored toward the automatic doors.
 
If you can imagine that sight, I think you can see why customers and employees were giggling as we exited the store. I saw a slight smile appear on my Dad’s face. Who says you can’t have fun with a person with dementia?
 

I learned how important it is to plan ahead and anticipate challenges.

Planning ahead mattered whether I was bathing my dad, taking him somewhere, or simply getting ready to prepare a meal for him. Taking him to visit my mom at the hospital involved making sure I didn’t put his shoes on too early, because he would attempt to get up right away in anticipation.
 
I had to not only make sure his walker was at the ready but plan the path we were going to take through the house and make sure there was no clutter in the way.  I had to arrange whether we would exit the back door or front door. He can’t use his walker for long distances, so I had to make sure that where ever we were going, there would be a wheelchair or some type of mobile device for him.
 
I learned that planning ahead took a lot of my energy. I began to understand why I felt so mentally and physically tired so much of the time.
 

I learned that people can be incredibly insensitive and thoughtless.

I took my father for a haircut at a barbershop where he had been going for years, with his same regular stylist. Certainly, she had seen the change in my father over the years.
 
As she clipped away, I chatted with her. The stylist and I talked about the “old neighborhood,” realizing that we had both grown up in the same community. Then she blurted out a question that nearly floored me. “So, are you going to put him in a nursing home?”
 
I was livid! “Him?” He was sitting right there, in front of her, in the barber chair. Though mostly silent, he has expressive verbal skills. Luckily, my dad had taken out his hearing aids for the haircut, so was probably unable to hear her. But just in case, I replied, “Why would I do that?”
 
After thinking about what she had said on our drive home, I realized that she may have based her question on her own experiences with a loved one. Long-term care facilities can be the right answer for certain families and individuals.
 
I guess just hearing those words while I was still capable of caring for my dad shocked me into a reality that I may have been suppressing. I’m thinking now that the stylist probably had good intentions, but she had failed to acknowledge my father and treat him with the respect he still deserves as an adult with dementia by talking about him as if he wasn’t there.
 

I learned that people can be incredibly supportive of my family’s needs—and more understanding than I had initially expected.

My employer gave me generous time off my work schedule to deal with our family crisis and move in with my father. Friends and family constantly asked me how I was doing; not just how my mother and father were doing. People encouraged me to take care of myself and get plenty of sleep. This attention was thoroughly appreciated.
 
I learned that I needed to share the responsibilities if I was going to be any good for my dad and take breaks when I could. My best friend Bob, who used to work for my father, came over and simply took my dad for a long drive on a beautiful, sunny day just to give me a mental and physical break. This also provided an activity for my father and a chance for my friend and my dad to get reacquainted.
 
My son drove down all the way from Wisconsin to Chicago to take a couple of overnight shifts from me. This allowed me to drive home and return to my normal routines, if only for a couple of days, which was incredibly refreshing.
 
I learned that it was okay to make mistakes. I am trying my best. Learning is a part of the process of working with someone with dementia.
 
 

Person-centered care can no longer be reserved for our loved ones—all individuals with dementia deserve the best possible quality of life.

A societal paradigm shift regarding the way we provide dementia care is long overdue. Federal and state regulations are pushing care partners and administrators to abandon long-held, detrimental practices such as the off-label use of antipsychotics to discourage challenging behaviors.
 
New CMS guidelines specifically reference the practice of person-centered care as imperative to helping individuals with dementia access their best abilities to thrive: “Competency involves staff’s ability to communicate and interact with residents in a way that promotes psychosocial and emotional well-being, as well as meaningful engagements.”
 
To support the critical cultural change that needs to happen, training programs like Dementia Capable Care have been newly expanded, evolving to provide constructive and positive solutions for supporting individuals with dementia and reducing the likelihood and associated risks of challenging behaviors. This kind of training maximizes dignity and safety, while eliminating the necessity for chemical or physical restraints—it empowers us to deliver the same kind of person-centered care to all individuals with dementia that I have been striving to provide to my father.
 
Making practical and philosophical adjustments to my own perception of dementia and how to cope with it has allowed me to experience a meaningful chapter in my relationship with my dad. My choices to engage with a constructive and supportive approach are allowing him to enjoy life and maintain a sense of independence, which is what our elders deserve.

Person-Centered Care Podcast!

Listen to episode 67 of Unrestrained, a CPI podcast, to hear Dementia Care Specialists founder Kim Warchol explain how she developed the gold standard of person-centered memory care, the Warchol Best Abilities Care Model℠.