Marie Nedland: The Long Goodbye!
- Published on Tuesday, 16 October 2012 13:48
- Written by Heather Rosen
Marie Nedland: The long Good Bye - Living with Alzheimer's Disease
Vern Nedland's Experience as told to Heather Rosen
(Marie and Vernon’s 1950 Wedding photograph added by Stan Berg)
In 2004, during the “Arizona Jammer’s Reunion” in Prairie Farm, WI was when Vern suddenly realized that his beloved wife, Marie, only 72 years old, was facing something far more significant than “the aging process”. Struggling with names and looking to him for answers was far away from Marie’s usual behavior. Her ability to recall names, faces, phone numbers, and simple day to day goings on was diminishing. “I didn’t know what at the time, but I did recognize something was very wrong,” shares Vern.
After the 2004 Jam, Marie was invited to play at the “Long –Live-the-Squeeze-Box Musial Festival” in Haugen, WI. Marie played well, and did not seem to have any trouble at the festival. Vern and Marie then returned to Arizona and reconnected with her band “Marie n’Da Boyz.” Most of the time everything in regards to Marie’s ability to function seemed fine. So Vern set his concern of the issue to the back of his mind.
Going back a few years, the accordion played a significant role in Marie and Vern’s lives. Although she played her sister’s accordion as a child, it wasn’t until 1995 that Marie actually learned to play the accordion. In April 1995, at the age of 63 she was given her first accordion. This accordion was an old Nicolo Salanti, made in Italy. The instrument was made before 1910, or around the turn of the century.
For the next 8 or 9 years, Marie amazed uncountable people with her talents. She was completely self taught. Looking back, that “free” accordion cost Vern a lot of money! But the fun they had around music and accordions was immeasurable. At 64 years old, Marie was asked by Arizona University to share with students her ability to learn new things!
Marie continued to amaze many people across the US and Canada with her talent of learning to play the accordion like a professional! In a world publication of “Norsk Hostfest” in 2003, Myron Floren (World Renowned Accordion Player), Teddy Edwards (child Prodigy) and Marie, were picture in an article promoting the 2003 Hostfest. Teddy sat by her, and learned from her playing. At the 002 banquet for the accordion club, Myron Floren gave Marie a hug and kissed her on the cheek. Marie was quite star struck and Vern would tease Marie, saying that she didn’t wash her cheek for 6 months after that!
After the first of the year in 2005, Vern realized something was happening. By February 22, 2006 Vern realized Marie was really struggling to play with her band at performances. Vern recognized the need for medical attention and upon arriving back in Wisconsin in April 2006, the doctor confirmed what Vern suspected: Marie had Alzheimer’s. Further diagnosis indicated that this was specifically the start of Alzheimer ’s disease. In the fall of 2006, Marie was told the diagnosis and she chose to do all she could to further research into the disease. The doctor did prescribe Aricept and Namenda in attempts to slow down memory loss. At this point Marie and Vern both daily recognized and grieved the loss they were experiencing.
In the fall of 2007, Marie was enrolled in Alpha Medical Research Center in Union Hills, Arizona. This was a trial study group in attempts to research Alzheimer ’s disease. The ultimate goal was to find help for those diagnosed Alzheimer ’s disease. Marie continued in these studies for two years.
With seemingly little hope, Vern reached out through a letter to Maria Shriver, the summer of 2009, who’s father R. Sargent Shriver, Jr. had also been diagnosed with Alzheimer ’s disease. Sargent Shriver is the man that started the Peace Corp and was active in several presidential cabinets. Sargent Shriver was married to Eunice Kennedy Shriver. With the family being very wealthy, Vern thought that with their millions, they would potentially have some of the answers that he was search for in regards to Marie’s diagnosis. Maria went on to say “we MUST keep on with these clinical trials before we lose another generation.” Vern realized that no mater how much money you have or who you are in the world, no one on earth knew the answer or cure for the disease of Alzheimer’s.
Vern had not planned on returning to Arizona to participate in more trials. Vern’s sons encouraged him to go, he may always wonder what might have been. Through Maria Shriver, Vern learned of another study, so Marie and Vern spent another season in Arizona at the Banner Alzheimer’s Institute.
These tests were conducted by Pfizer Pharmaceutical. Vern and Marie came home the end of April in 2010; Pfizer was going to fly them back in June to continue the tests. Sadly, in May Pfizer canceled the tests. Vern sates he could have told Pfizer what they were doing was not helping, as he only saw Marie’s condition decline. Pfizer stood to make millions if there was even a small chance of the treatment improving the condition. It was t this point that Vern realized they had run out of options.
In the mean time life was getting tougher. Marie was no longer remembering things, like how to cook. One morning Marie put oatmeal in the coffee maker instead of grounds. Another morning Vern came into the kitchen to find that Marie was about to eat a bowl of pepper instead of cereal. Eventually, Vern was hesitant to even go to the post office to get mail unless someone was with Marie. Marie also began to have her days and nights mixed up. Wanting to go to bed at 5:30 PM, she would wake up while the sun was still out only a few hours later thinking that it was morning. She would then be up until early morning hours. This was exhausting not only for Marie, but also to Vern. Fear set in that even one second at some point in a 24 hour period could be fatal to Marie if not supervised. Vern then took the knobs off the gas stove, only to have Marie manage to figure out other options of turning on the gas burner.
Vern shares that he still feels guilty even, now that he wasn’t able to take care of her 24 hours a day. He had come to the realization that hew was no longer able to meet Marie’s needs for care and safety. Vern states “no one has any idea what it is like to make decisions about your mate until you are faced with having to actually make decisions about her not living with you.”
Vern emphatically shares, “my fun is gone. No matter how good and wonderful the rest of the people in my life are, my fun is gone.”
While not minimizing other diseases and conditions that also steal from people’s lives, Vern shares that he grieves daily, the loss of Marie. He continues to visit her several times a week at the assisted living center she lives in. He thinks of her almost constantly, and feels guilty for not being with her. Thinking of her happens when he wakes up in the morning, and she is not there. When eating meals without her, when spending time with his family and not having her there, and then having to leave his family to go see her at a home that is not theirs.
Looking back, recognizing that Marie was not going to get better from this disease was the most difficult thing that Vern has ever had to accept in his life. Many times throughout the course of Marie’s illness, Vern has broken down crying and praying to God for help. He continues to do so.
Vern states “I realize you have to accept the disease, because there is nothing else you can do. You have to accept it. However, accepting it doesn’t change our feelings about the one you love. She is still the love of my life!”
“If there was anything else I could have done, I would have done it. I kept her at home until I was physically and mentally exhausted. Then I realized I was unable to care for her and keep her safe, so I had to look into other options. My family was very supportive, and they all told me “Dad, it’s your decision” It is the toughest decision I’ve ever had to make in my life, moving her to a home other than ours.” Marie now lives in an assisted living facility that specializes in dementia care.
Dr. Pierre Tariot, the leading doctor in Alzheimer’s disease at the Banner Alzheimer’s Institute, talked to Vern about the physical changes that Marie was going through with the disease. Staff at the Institute were very honest about the condition, they told me it would get to the point where she wouldn’t know anyone, and now, years later, we are there.
Vern wants to share his story about Alzheimer’s disease, because he knows what it is like to be alone. Vern states “I know there are others out there, family members, spouses, that are going through this same thing. If there is anything I can say about your experience that can be helpful to others, this experience will be worth something.” Vern feels strongly that it is impotent to get together with other people and family members that are on similar paths, with diagnoses of dementia.
Being with others in similar situations really helped Vern to not feel alone. “Talking about the problems, and listening to each others experiences helps so that you do not feel so alone in the problems.” Says Vern with a sigh. Vern finds strength in areas such as support groups. He also admires staff at facilities that work with anyone having dementia. He finds encouragement in their willingness and patience.
Vern’s advice to others is “Not to be scared to talk about your situation or your feelings. To be open to discussing matters such as this is takes courage.” We all have experiences, and discussing the loss and hurt helps us get through it. Vern encourages anyone struggling with care for love one, to find a local support group and utilize it!
“All my life there was always one more river to cross, suddenly there was Marie’s Alzheimer’s, and I had grown old,” says Vern.
Heather Rosen’s Note: Having heard Marie and Vern’s story, stirs my soul. Vern’s strength and willingness to be open and share their story is humbling to me. There is so much more that this article cannot contain about the life of the Nedland’s. And while I do not know Marie personally, in talking with Vern, I have no doubt that she was an amazing, patient woman who, despite her personal battle, was an absolutely lovely woman. She is very much loved by her husband and family.
The End of the “Long Goodbye”
As all of these stories end, Marie died from the Complications of Alzheimer’s at 4:00 AM on 1 October 2013 at the Assisted Living Facility, Monroe Manor in Barron, Wisconsin.
The photograph of Marie and her cat above, was also taken at the Monroe Manor Assisted Living facility in Barron. I added this photograph to the story following the funeral...a black and white version appeared in the printed obituary...
From the time of Marie’s first short term memory problems as noted by her husband Vern in 2004, a period of nine (9) years slipped by before Marie’s journey into the darkness of Alzheimer’s ended at her passing on 1 October 2013 at the age of 80.
Marie’s nine (9) years journey was a little longer then the average of eight (8) years as noted in the technical literature of this disease. It has also been estimated and suggested that from the time of diagnosis, the average remaining life span is reduced by one half as a result of the impact of Alzheimer’s. This suggests that without Alzheimer’s, Marie might have lived to an age of about 89.
Marie’s funeral notice appeared in the Barron News-Shield, Barron, Wisconsin on Wednesday, October 2, 2013…with Marie’s funeral on Saturday October 5th at the United Lutheran Church in Prairie Farm, Wisconsin and with internment at Sunset Cemetery, Prairie Farm, Wisconsin. - Stan Berg - October 10th, 2013.
Marie's Funeral Remembrances
Marie's Obituary - Barron News-Shield
To read the related story of Marie's journey through Alzheimer's (on this web site) as told in the exchange of birthday cards on Vern and Stan's mutual June 14th Birthday, click on the below link:
Vernon Nedland died on Saturday 30 April 2016 from injuries he received in a fall at his home...the below obituary appeared in the Barron News-Shield Wednesday May 4th 2016 Edition...Vernon was age 90 at the time of his death.
Cory Nedland - Prairie Farm, Wisconsin - (4 May 2016): "I was reading the story about Marie Nedland (My grandmother) To see what Vern (my grandfather) had wrote. That was some sad times for all of us. My grandpa Vern is with her now. He passed away on 4-30-16 at the age of 90. I miss him a lot. But was lucky to still be living in Prairie Farm with my wife and children. So we got to see grandpa Vern everyday and I thank god for all of the days he gave us with him. I still remember one of the last things we talked about and that was how happy he was that I had a baby boy in February of this year. As my grandpa told me that's a total of three Nedland great grandsons that are boys so the Nedland name should keep going on. My family and I will miss his smile, laugh and all of the awesome stories. I just wanted to let you know that he is with Marie now and I like to think his heart is complete again..." (5 May 2016): "His funeral is today in Prairie Farm. He had a wonderful life that touched so many people. I can only hope to someday become as great of a man as my grandpa Vern was. Missed but never forgotten"