A Journey With Dementia

“When you love someone with dementia, the goal is not perfection… it’s okay to be good enough.”

I have heard that when you meet a person with dementia – you’ve met one person with dementia.  My husband was diagnosed with Parkinson’s disease in 2015, and dementia and cognitive impairment became more apparent in the last few years. We have been lifelong Alaskan partners for over 35 years. 

I do think it is helpful for caregivers to share their story and experiences.  Here is mine…

Patience. I don’t really feel like I am an expert at being a caregiver, nor do I always get it right.  I’m the first to admit that I screw up at times. When you love someone with dementia, the goal is not perfection… it’s okay to be good enough.

Caring. Everyone says “take care of yourself” which is sometimes annoying to me, because it’s hard to put my needs in the forefront.  It’s a balancing act.  However, I’ve found that self-care is not selfish, it keeps me sane. I make time to practice and teach yoga, enjoy a relaxing bath, venture outside daily, take part in counseling, cook a meal, and talk with friends. These activities help give me strength and protect my health. 

Support.  Find people to connect with. You need someone to lean on – everybody does.  Reach out to your friends, church members, and acquaintances to find support.

Learning. Learning and accepting help has been hard for me to do.  People often ask me, “What can I do?” and it is not always easy to come up with an answer.  I am getting better at this.  It has also been a process getting in-home workers through an agency and then to feel comfortable having someone new in my home. 

Flexibility. Sometimes I feel overwhelmed and it can be hard to stay positive, kind and compassionate – especially when I’m feeling tired, frustrated or annoyed. These are the times when I’ve found that I need to slow down and drop my agenda. When all else fails “the 60-second hug” helps or to walk away from a situation instead of reacting to it. 

Humor. We always try to keep a sense of humor and laugh at the funny things that happen throughout the day.  Once he dressed with my leggings on his arms. My husband experiences hallucinations and we call them “no-see-ums.”  He even wrote an eviction notice to them!  I admire his sense of humor and I’m not so sure if our roles were reversed I would be the same.

Knowledge. I took the Savvy Caregiver training through Alzheimer’s Resource of Alaska and thought it was very helpful.  I enjoyed hearing from caregivers all over the state and their stories.  The information was very insightful and has helped me on my caregiving journey. I have also attended some of Teepa Snow‘s online/video training. They helped to see her positive approach to people experiencing dementia.

Love. My husband and I try to do things we both enjoy doing together such as taking a walk, listening to music, or watching a movie.  These are activities that bring us closer together and make our journey easier.

My advice to caregivers: Live each day as it comes, make the best of it, and laugh when you can.