In anticipation of next week’s release of my new book, Open Circle, which deals with dementia and Alzheimer’s, I’m sharing interviews and stories from people “in the trenches” of living with dementia. AND I’m giving away a custom canvas tote bag filled with goodies. Look for details at the end of this post.
Today I’m excited to share part of a conversation I had recently with Lynda Sandvold about her mother’s 20-year journey with Alzheimer’s. The love Lynda has for her mother, now gone 12 years, blessed me tremendously as we talked.
Please share some of your mom’s story.
Louise Stevenson was a terminal care nurse who worked in private duty. She was hired by families to attend to their loved one in the hospital and at home. Her care was so exceptional, doctors requested her for their own care.
She and my father were married 58 years and raised four kids—my brother, two sisters and me. My dad took care of her as long as he could, until the last year of his life. Both were born in January and both died in July.
My mother was extremely bright, very social, and an avid reader. Music was always a big part of her life, which turned out to be important to her in her Alzheimer’s journey. I learned so much from her throughout my life, even through her battle with Alzheimer’s.
How did the diagnosis come about?
Mom was diagnosed with Alzheimer’s at age 68 after extensive testing from her doctor and psychiatrist. We noticed she was reading less and had become withdrawn, which was odd because she was a very social woman who loved interacting with others. Later we realized she was embarrassed when people told her she was repeating herself.
How did she react to the diagnosis?
She was extremely sad and afraid. She’d seen it with her mother, aunt, and grandmother, and knew what was coming. Mom wouldn’t talk about it except to say how awful it was for the rest of us.
This was back in the 1980’s when dementia, and especially Alzheimer’s, was something to hide. Her great-grandmother had “hardening of the arteries” and was called senile and daft after she was found wandering in the field. These were issues to be hidden from friends and family. It was shameful to have a family member suffering from a debilitating illness.
Mom became depressed and paranoid—thought people were saying things about her and that Dad was doing things she didn’t know about. As the disease progressed, she started hiding things (personal care products under the bed), and changed from a pleasant, docile woman to aggressive and combative. The good thing was that at the end of her life, she reverted to the sweet woman she’d been before.
How was this journey for you?
So very painful. She’d been my strength and resource, a joy to be around. I was sad that my children wouldn’t know who she really was before the disease changed her.
One time I was called to where she was living by the staff who said she’d been crying and was inconsolable. When I arrived, she was able to tell me that she was losing the rest of her memory. It was heartbreaking to realize she was aware enough to know that the rest of her was slipping away. That was when we created a sign for her that said,
“My name is Louise. I am a child of God. A gift from above.
I am cherished. I am loved. I am Louise. I’m a child of God.”
It hung next to her door where she saw it every day. Her faith never left her, which was a testament to who she truly was.
I would have her help with laundry to keep her engaged in daily activities. She asked me how it felt to now be the mom. I told her that our roles hadn’t changed; I just got to help take care of her.
How did you find help and resources?
When my mom’s journey started, we found the Alzheimer’s Association to be a great resource. We learned about the stages of the disease, symptoms, where we could find help. It’s so important for caregivers to have a good team of people around them to take some of the weight off. We want to be able to do everything for our loved one, but we can’t. It’s exhausting physically, mentally, and emotionally. The team at the Alzheimer’s Association helped me understand and accept that I was doing the best I could.
We hired a lawyer to attend meetings with us (a case manager with a nursing care background) who could be mom’s voice without that emotional connection. That allowed me to simply be the daughter, which was important to both of us. Then I could share information from the case manager with the rest of my siblings that was clear and focused rather than shaded with my emotions. That was a huge help in so many ways.
You and your husband, Terry, have worked together to raise funds and support the Alzheimer’s Association. Tell us about that.
Because of all the help, support, and encouragement we received, we wanted to do our part to support the organization, so we started raising funds. Our three kids would raise money for and participate in the Walk to End Alzheimer’s. It was important to us that we do that together for my mom and others struggling with dementia.
We started attending the Purple Gala a number of years ago (in both Minneapolis and Arizona) and have sponsored tables to bring others to this wonderful event. We volunteered to work on committees which was a great way to do our part to make it as successful as possible, and to get to know so many others working toward the same goal. Two years ago, we were asked to serve as co-chairs which was a tremendous honor. Terry and I are from Minot, ND so we would look at each other in wonder that two punks from Minot were privileged to be part of such an amazing event! We were thrilled to be asked to host again for the 2018 Purple Gala which raised over $1 million.
My husband and I have been privileged to attend the Purple Gala as your guests, and know firsthand the importance of the work being done by the Alzheimer’s Association. Thank you for all the work you do to support the organization.
What did you learn through your mom’s journey?
The value of unconditional love. Regardless of how the disease changed her, she was always my mom and deserved respect and love. And I learned how important it is to have long-term discussions before there’s a crisis or diagnosis.
What final thoughts would you like to share?
Don’t be afraid to reach out for help. As caregivers and family members, we need to talk, to share the joys and concerns of living with this disease. Help is available; don’t try to do it alone.
Keep your sense of humor. While we aren’t laughing at them, we can laugh with them. If we don’t, we’ll cry the whole time. Mom loved chocolate covered cherries, so we enjoyed them together a lot. There are sweet moments along this treacherous path. Savor them.
I asked my mom one day, on her long journey with Alzheimer’s, what was one word she thought of when she remembered her mother. She replied without hesitation “Love.” It was a perfect response because that is the one word I would also select for my mom.
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Lynda Sandvold is a Child of God and a woman of faith. She is a daughter, sister, wife, mother, and new grandmother. Born and raised in Minot, ND, she graduated from Minot State University with special education and psychology degrees. She and her husband Terry reside in both Plymouth, MN and Scottsdale, AZ. They are active donors to Alzheimer’s Association and a variety of charities.
Lynda’s mission in life is to help others and to be kind and compassionate, the way her mother raised her and how she and Terry raised their children. Her passion in life is to use her God-given gifts to make a difference in someone else’s life in some positive way each day. One of her key passions is being involved with the Alzheimer’s Association to raise awareness of the disease, as well as all of the resources and assistance available through the association. She wants people to know they are never alone on this journey of life. “We are all here together to help and support each other.”
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To celebrate the launch of my newest book, Open Circle, on June 21, I’m giving away a fun custom tote bag, an autographed copy of Open Circle, and other fun goodies (some not included in photo!). Follow this link for a chance (or two!) to win: a Rafflecopter giveaway