Kelly Spencer - Happy Healthy YOU
(A wellness column by Kelly Spencer: writer, life coach, yoga & meditation teacher, holistic healer and a mindful life enthusiast!)
You might remember the movie, The Notebook. It was a 2004 romantic-drama based on the 1996 novel of the same title.
A story of Noah and Allie and the love of a young couple during the 1940s. (Warning: story revealed.) Their story is narrated from the present day, by an elderly man telling the tale of true love to a fellow nursing home resident, who is suffering from dementia. The man, Noah, shares the story to the woman (Allie) with dementia to help her remember. One day, she briefly recognizes who he is, and their love is remembered. But she slips back into the grips of her dementia and has a panic attack, forcing medical personnel to sedate her. Noah has a heart attack and is hospitalized, while Allie is sent to a dementia ward in the same hospital. In the middle of the night, Noah visits Allie’s room, and she remembers him briefly once again. Noah reassures her that they can do anything with the love they share, he climbs into her bed and they hold each other, dying in their sleep with a nurse discovering them in the morning. The movie is lovingly heart-wrenching with a beautiful romantic story of unconditional love weaved throughout it, beginning to end.
Unfortunately, this is the not the case for most people living with Alzheimer’s and dementia. For many diagnosed with the disease and those that care for them, their stories have little romance and a lot of heartache and pain. Through the eyes of someone close to me, I have watched them witness the fading of the woman they call mother.
A few years back, he would notice his mom’s forgetfulness, small things like conversations they had had. Progressively, his mother experienced greater memory loss and other cognitive difficulties. Problems included getting lost while driving, trouble handling money and paying bills, repeating questions, taking longer to complete normal daily tasks, and personality and behavior changes. She lived on her own in the country, and while seemingly managing life solo, his concerns for his mothers grew, as did her symptom progression.
Not long ago, he received a call from his mother at 4:30 a.m. Concerned, he sleepily answered his phone. She asked him, “why are you asleep at 4:30 in the afternoon and why is it so dark out today?" He could not convince that it was the middle of the night.
The son tried to get help through his mom’s medical doctor. They made an appointment to go to the clinic together. She was having a 'good' day with her wits seemingly still about her on their joint visit to the physician. This left the doctor’s and the sons hands tied.
It felt as though he was waiting for the ball to drop or for something bad to happen before someone could help them.
Eventually, the ball dropped.
The son received a call from the police.
The mother’s car, covered in mud and dirt from apparent back road travels, had made her way to the highway, where she ran out of gas. The car, still on the road of a busy highway was at a complete stop. People, concerned for the woman who was fidgeting with her windshield wipers in the middle of a highway and seemingly confused, called the police.
She did not recollect where she was going. She did not remember where she was coming from. Fortunately, the only thing she could remember was her adult son’s phone number.
He immediately went to the hospital. The staff directed him to the room in which they were treating his mom, but he walked into an empty room. She had gone. He went looking outside the hospital, where she was wandering around looking for her car. Excited to see him, as if it was a chance encounter, she said, “Hey, what are you doing here?”
He helped her back to her hospital room. The doctor came into examine her. Lifting the four layers of sweaters his mother was wearing, the doctor placed the stethoscope to her back-rib cage. The son, horrified to see his mothers skeletal frame had not realized she was physically wasting away to the degree she had. She was only 86 pounds. She was forgetting to eat.
The last several months have been spent by the son, taking time off work to drive his mother to appointments, with numerous follow-up calls to make more appointments, paying her bills and meetings at bank to get finances in order, and taking her grocery shopping as they have taken away her car and so on. He receives numerous phones calls every day from his mother, often asking the same questions repetitively.
The tough and independent mid-60-year-old woman he once knew is no longer. She is regressing, deteriorating, fragile and dependent on him.
The nights are more difficult. Most commonly associated with Alzheimer's disease, but also found in those with other forms of dementia, the term 'sundowning' or 'sundowning syndrome' is a multitude of behavioral problems that begin to occur in the evening or while the sun is setting. More panic, anxiety, fear and anger are witnessed in his mother’s behavior during the evening hours. A 2011 study by G. Smith called 'Sundowning: Late-day confusion' released by the Mayo Clinic, Minnesota, states research showing that 20-45% of Alzheimer's patients will experience some sort of sundowning confusion.
There is nothing simple about this disease for anyone. And while the reasons are different, both the afflicted and the care giver can experience much anxiety, fear and difficulty with massive changes and disruptions occurring in life they once knew.
Here is a short list of how the caregiver can take care of themselves.
1. Contact your local Alzheimer’s and Dementia society.
2. The 3 R’s: Repeat, Reassure, and Redirect.
3. Educating and getting well-informed about the disease is an important long-term strategy.
4. Learn ways to cope and deal with difficult behaviors from the loved one afflicted by the disease.
5. Joining a support group can be a critical lifeline for caregivers. These support groups allow caregivers to find respite, express concerns, share experiences, get tips, and receive emotional comfort.
6. Find healthy ways to deal with your own stress, fears, guilt, frustration and anxiety. Counselling specific to Alzheimer’s care givers is available.
7. Self-care is imperative. Continue to take care of your physical, emotional and spiritual wellbeing.
Alzheimer's Association: 1-800-272-3900 (toll-free, 24/7) firstname.lastname@example.org www.alz.org
Alzheimer Society of Oxford: 1-877-594-2368
Alzheimer's Counselling: Woodstock 1-(519) 421-2466
Alzheimer Society of Brant, Haldimand Norfolk, Hamilton Halton: 1-888-343-1017
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