Supporting your spouse with dementia starts with caring for yourself!

By Karen Rose

According to the Alzheimer’s Association 2016 Facts & Figures, every 66 seconds someone in the U.S. develops this disease. The hidden heroes are the family members who support their loved ones with dementia in maintaining their independence and dignity, too often at the expense of their own health.  Below, I offer my insights for supporting a spouse with dementia—although these tips apply to supporting anyone with dementia.

  • Take care of yourself! Supporting a loved one with dementia is a hard job.  Family caregivers are known to forego their own health needs as manifested by skipping medical check-ups and failing to maintain routine self-care activities.  This likely plays a role in poor health outcomes for many family caregivers.  Make and keep the appointments you need with your healthcare provider to maintain your own health.
  • Stay connected with your social networks. Your loved one with dementia is a person who benefits from being around others to maintain their own dignity and self-worth. It may be that your loved one no longer enjoys being in big, noisy crowds—but, that doesn’t mean that smaller, more intimate social activities surrounded by loving family and friends need to be relinquished.  You need to stay connected with your friends and your loved one does, too.
  • Stay active! Regular physical exercise is good for you and for your loved one with dementia. Being outdoors, weather permitting, can have a calming effect for your loved one as the sights and sounds of nature are known to be soothing. And, there are health benefits from regular aerobic and strength-training exercises for persons with dementia, so it’s a good thing to do for everyone.
  • Get adequate rest and sleep. You cannot support your loved one if you are operating from a glass that is “half full.”  Maintaining adequate rest and sleep help support your ability to be at the top of your game.  Avoid too much caffeine and strive to maintain a regular schedule for when you go to bed and when you rise in the morning.  A routine for you and your loved one with dementia helps everyone feel well rested.
  • Ask for help. Family and friends want to help support family caregivers and aren’t always sure how to do so. Make specific requests for assistance, like picking up a prescription or going grocery shopping, as you will find that people are eager to help.  People want to help—it makes them feel good and it helps you to continue to provide support for your loved one.
  • Reexamine holiday traditions. Are you able to pare back some of the activities of your holiday traditions while still maintaining what’s important to you and your family? You may notice that your loved one with dementia becomes anxious or seems agitated when many people are around, even if the people are family members. In this case, reexamining family traditions and reframing these in ways that will not overwhelm your loved one may allow you to continue to honor family traditions in a different way.
  • Plan for the future. Now may be a good time to have meaningful conversations with your loved one with dementia and your family so that you can make plans for your future.  Working with your attorney and financial advisor will provide you with comfort in knowing your wishes for the future are carried out in the ways in which you and your loved ones want them to be.

In short, taking care of yourself is the best way to support your loved one with dementia.  There are many community resources that are available to support family caregivers and persons with dementia.  A great place to start is by contacting your local Area Agency on Aging.  Additional resources are available through the Alzheimer’s Association and through the Family Caregiver Alliance.

https://www.tn.gov/aging/article/aaad-map1

www.alz.org

www.alztennessee.org

https://www.caregiver.org/


rose_karenKaren Rose Contact
UT Knoxville

Karen Rose is the McMahan-McKinley Professor of Gerontology in the College of Nursing at the University of Tennessee-Knoxville. She received her Ph.D. from the University of Virginia in gerontological nursing. Dr. Rose’s program of research is focused on supporting family caregivers for persons with dementia and in addressing and ameliorating neuropsychiatric behaviors in dementia. Karen enjoys traveling, hiking, doing almost anything outdoors, and spending time with her family and friends.

Still My Hero

By Susan Robertson

As it is with most little girls, my dad was my first hero. I am the third of four children, and I always tell people I was my dad’s son before my brother was born. He taught me to throw a baseball, punt a football and even taught me to sew a dress for my Barbie doll.

My dad passed away in September 2012, but because of his diagnosis with Alzheimer’s disease in 2001, we gradually said goodbye to him over the course of 11 years. I lived out of state during that time but visited my parents at least monthly. And watching my father succumb to this horrible disease was one of the most difficult things I’ve experienced.

Most often Alzheimer’s is associated with the loss of memory. I never think it is funny when someone forgets something and then jokes, “I must have Alzheimer’s.” There is nothing funny about that disease. It truly robs sufferers of everything—from memory to the ability to speak to dignity. My father’s Alzheimer’s started with paranoia—thinking people were coming into the house and changing the times on the clocks or moving things from one location to the next. That was followed by the loss of his ability to process information and although he still remembered us, he often talked about going to see his mom and dad (who had both passed years earlier).

As with most Alzheimer’s patients, my dad started to wander. He would pace endlessly around the house all day and much of the night. One night he even climbed out his bedroom window and walked more than a mile to a nearby recreation area. Thankfully, some neighbors who had gone to the area to walk the next morning spotted him and brought him home. It was after that incident that my mother had all of the windows nailed closed from the inside. She also added alarms to each entry door so dad couldn’t go outside without her knowing it; and added baby locks on the cabinets after dad ate a dishwashing tablet thinking it was candy.

Alzheimer’s caused my dad to become very childlike. He liked playing with and holding toy cars. On one visit, I was in the backyard walking around with him when he picked up an acorn and threw it at me. When I turned around, he just grinned impishly. I was crying inside, but I just had to smile because that is something my dad would have done before the disease. While dad was very different and needed around-the-clock care, he was still very much my dad.

The disease also took a toll on my mother who was dad’s caregiver. Not only was it emotional to deal with the fact that your husband of 50-plus years was no longer the same, it wore on her to have to make sure she knew where he was 24/7. One of the things I say to anybody who is a caregiver is you have to take care of yourself! Stress plays havoc with our overall health. Mom finally agreed to have a home health worker visit three days a week, and one of my sisters moved in with my parents to help care for dad. My other siblings and I gave my mom and sister breaks on the weekend so they could be away from the house while we would watch dad. It only made sense that the weekends I was visiting, I would toss the ball with dad. It was just like old times—sort of.

I wish that no one would have to deal with this disease—no individual and no family. But the truth is that today, 5 million Americans are living with Alzheimer’s; the disease is now the sixth-leading cause of death in the U.S.; and every 66 seconds someone in the U.S. is diagnosed with the disease, all according to the Alzheimer’s Association.

My paternal grandfather and my father both had Alzheimer’s, so I’ve read a lot of research about how to prevent the disease. Unfortunately, no one can pinpoint the exact cause. Researchers have identified many things such as environment, diet, etc., but currently there is no cure.

It was about 10 months before my dad passed, Christmas of 2011, when I realized for the first time he didn’t know who I was. That was extremely tough to accept, but it was not about me. My dad was very different from the man I knew as my first hero, but in my heart he was still my dad.


Susan RoberstonSusan Robertson  Contact
UT Institute for Public Service

Susan handles communications for the UT Institute for Public Service. She enjoys spending time outdoors—hiking and documenting the natural beauty of East Tennessee through photography. Susan loves watching all sports, reading, cooking and fulfilling the needs of her demanding miniature dachshund, Wrigley.