By Bill Fulton
(pictured above with his wife Deryn)
Bill Fulton is a caregiver in Snohomish, WA for his wife Deryn (DJ) who was diagnosed with Alzheimer’s in 2015. Bill keeps a quarterly report of his wife’s journey with dementia to document her changes over time.
“I’m afraid.” That was all she said.
It was 2009, and we were skiing very steep and deep powder snow in the Canadian Rockies. Deryn had skied tougher terrain in the past with confidence and ease. In fact, she was the only woman to pass the full certified ski instructor’s test in the Northern Rocky Mountain region in the spring of 1972. She was skilled, physical and courageous. “I’m afraid,” she said. That was the start.
Years of marriage to Deryn (since 1969) told me something wasn’t right. The little slips in her memory continued, and she gave up managing her Snohomish business. In 2015, she was diagnosed. I went part time and sold my accounting practice to become a caregiver. My responsibility spans the spectrum from simple care to case management and is guided by love.
The proceeding genesis lead to the creation of this quarterly report. It provides a road map and structure for understanding the nature of the challenges that come with dementia. At the same time, future bumps are introduced and rated. The following are the last two quarterly reports of 2019:
DJ 3rd Qtr. 7/31/19
- GPS & ID bracelet
- Below zero
- Cup is half full
When we talk about death, illness or affliction it is with conviction and knowledgeable comments. They are second person until the experience is lived. That mindset is true throughout life. It’s the mechanism allowing us to go further, reach for higher goals and advance humanity. We are naive and in denial. After all, downsides could not happen to us. So, it is with dementia. I know it’s coming and am surprised.
Tools are our first line of defense when confronted with challenges. However, they aren’t always the answer. Take for example: wandering. It occurs in six out of 10 dementia cases. A health bracelet or GPS is the perfect answer. A wandering person can be identified by the use of ID bracelet or found with a GPS locator. Marvelous tools. Unfortunately, the tools must be worn and accepted by the person living with dementia. Deryn simply took them off, and away she went.
The data schedule lists symptoms on a scale of 5 to 0. Forgetfulness is the first category and showed the first decline. From five to four it quickly slipped, and then three and ultimately, it became zero. The reporting is permanently frozen at zero but the decline continues. What I thought was unimaginable is now in the rearview mirror as Deryn slips ever lower. It takes a complete mind set change to accept and understand the decline.
That is why the cup is half full. I’ve been reporting it half empty and listing the failings. How naive. Accepting today as it is and reaching out to higher goals is the better choice. Believing we can’t when there is still a glimmer of hope erodes the quality of life and the spirit. There is a world of opportunity and going for it, tripping, picking yourself up and savoring the triumphs is the way to the future.
DJ 4th Qtr. 10/31/19
- The path is steeper
- Example of decline
- Descent is not linear
- Complicating factors
As we climb a mountain the path grows steeper. In our youth, we decided to `hike up’ Mount Rainier. Wearing tee shirts and runners, we reached Camp Meir (10,000 ft.) without much trouble. Then we looked at the task ahead and the increased incline turned us back. Caregiving responsibilities are the same. They increase as the persons’s mental health declines. The difference is: there is no turning back.
In the beginning, toileting meant, “Excuse me while I use the restroom.” Next, a gentle reminder of the direction to the restroom was needed. Later, guiding her to the restroom was appropriate. This was followed by identifying and directing her to the toilet. Now, she doesn’t know how to sit down or wipe.
The toileting reads as a linear decline. It’s not. The decline is akin to an incomplete deck of cards. The game can be played and sometimes with only a slight hint of a card’s absence. Then as more cards are removed the game turns into a contest of survival. The complicating factor is Deryn doesn’t know the cards are missing. She will say, “I’ll do that.” When I say ok, she’ll get a blank look and say, “Will you help me?” This brings us full circle to why the mountain called caregiving gets steeper.
There are complicating tangents. These are actions completely unrelated to a normal life. Chanting is an example. At some point in the night Deryn will say “What’s wrong with me?” The phrase or phrases are repeated over and over and over. As she says them, she is in her own hallucinating world. “What’s wrong with me? What’s wrong with me?” The mountain is getting steeper as she slips into primitive hardwired skills.
Despite all, DJ is a gem and her kindness is unsurpassed. Over and over, she puts my welfare ahead of her needs.
Are you a caregiver for a loved one with dementia? You are invited to the Journey Dementia Family Caregiver Conference on Feb. 22 in Everett Washington. This FREE conference is designed to provide tools and encouragement for family caregivers caring for loved ones with dementia and are open to any unpaid dementia family caregiver. Learn more and register here.