By: Craig Cottingham
Craig and his wife, Randie, lived together in Bothell, Wash. for over 40 years. Randie now resides in Kirkland, Wash. at an adult family home.
When I look back at how my wife Randie and I struggled with her dementia, some of the solutions were counterintuitive.
At one point, she surmised that all the pieces of bark and dirt she was picking up from the floor on her hands and knees, were being delivered deliberately by our neighbor. She wanted to call the police. I gave her rational explanations, like, our very large dog and both of us brought them in when we came inside. She had no capacity for rational explanations and became more and more agitated.
When I reached out to her sister to help me reason with her, she came over immediately. She totally accepted Randie’s point of view and reinforced her desire to call the police. I was shocked, dismayed and felt betrayed. I vowed never to reach out for help again.
But the more my wife’s sister “took her side,” the more my wife calmed down and let go of her extreme agitation. The next day, she no longer brought the issue up. It never seemed to bother her again.
Being a 24/7 caregiver gave me the sense that I knew what was best about everything. Now I know that rational explanations, etc., can be useless at times dealing with dementia. I felt it was always important to share the truth, explanations, knowledge with her. But, I shared it in kind and gentle ways. The best I could do was to get to know her, enjoy her, love her, as she moved through the stages of diminished capacity.
I now try to share bits of joy and laughter in our conversations. I have gratitude for whatever recognition seems to appear. I hadn’t been able to be in her physical presence for a year because of the pandemic. I accept how she is each day, anywhere on the spectrum.
I’ve finally made some progress enjoying myself and my own company as I am alone now.
I marvel at how generous, kind and caring all the people in my life are. It is truly a wonderful world of thoughtful kindness.
A month later, I re-read these words and realize how things have changed. She continues to deteriorate. Her body jerks at times. Her hands are cold and she has no interest in moving or going outside her room. Sadness envelops me like a dark cloud, mist shrouds my eyes like soft rain.
Although I can visit in person now, the isolation bubble I’d maintained for over a year suffocates my natural optimism. Loneliness contains my aspirations. The phone calls in the morning went somewhat well, recognition seemed present. But now I’ve given that up as well. Grieving and loss pervade my self-awareness.
Exercise and hydration are my lifelines, though absent from my routines, I know they can get me back on track. Oddly, they don’t occur to me. I have to focus on my own health. I’ve become less active, gained way too much weight, often feeling listless. I need to engage, be more social find some joy in my separate life.
The Alzheimer’s Association Washington State Chapter invites you to join us for the 2022 Journey Conference for dementia family caregivers on March 5, 2022, in Lynnwood, WA. This free, all-day event offers education, information and resources — as well as inspiration and encouragement for the caregiving journey. Light refreshments and lunch will be provided.
Learn more and register at alzwa.org/conferences or by calling 1.800.272.3900.
Hi Craig – tough story to read. After a couple of years of increasing memory issues and disorientation, my wife of 49 years was diagnosed with Alzheimer’s earlier this summer. I’ve transitioned to full time caregiving as well, and your anecdote about the dirt on the floor was so familiar. It’s all very discouraging for me. I can get out with the dog for multiple walks during the day, which helps a lot, and occasionally I get one of our two kids to stop by for a couple of hours so I can run to the gym, which also really helps. You note that you need to pay attention to your own health; many friends have told me the same thing, so I hope you can find the motivation to do that – you know as well as I do that it’ll help improve your outlook. Hang in there, and take care!
Just read your post and my heart goes out to you. My grandmother who raised us got hit with Alzheimers when I was in my teens. Grandpa had died and she didn’t get over it. It was such a surprise at how her entire personality changed. I got diagnosed a year ago. It answered some questions, and I kinda know what to expect, but I’m not sure how much longer I can live alone. My heart goes out to you and my prayers are with you.
Hi Deb, you are not alone. I truly admire and respect the courage and bravery my wife maintained throughout her journey towards Alzheimer’s Disease. She hated having to go through it and her loss of independence was the biggest hurdle. Please reach out for support wherever you can find it. You are a very special person. Take care, Craig
Sandi, a used-to-be social worker, my wife of 58 years, is stricken by Alzheimer’s like her mom and Granma. Sandi doesn’t “die by inches”…slowly…or quickly, too. She doesn’t go by multiple “Thuds” by a cold steal rod through my many-times punctured heart or by sudden vacuous suckings of air from my lungs. She dies by multiple, sudden shocking, unexpected, um-welcomed DEATHS many times a day…every day!
As her husband, a clinical psychologist, my decades-trained, deep observations pick up all these deaths. I cannot not see. I can’t stop the dreadful, deeper onslaught of grief I will experience in the future. I automatically let the future wreck my present. I see the multiple daily deaths and I suffocate under the weight of all the future deaths decimating the present because I still am learning to stay in the here and now.
“Other than that, Mrs. Lincoln, how did you like the play?”
Mary Todd Lincoln never recovered from Abe’s death.
In an imagined therapy session I ask her to “talk” to “Abe” in the empty chair I place in from of her. She expresses grief, guilt and the cloud-like inconsolable loneliness in which she exists.
“Switch!” I direct her into the Abe chair.
Having been instructed to respond as Abe would respond when she sits in the Abe chair, he responds, “Please, Mary, don’t keep me stuck at death. I lived an entire life…most with you. Please remember all of our times together. I don’t want you saddened by the thought of me; I’ve moved on. I remember you with gladness. Please love me back!
Sufficient unto the day are the troubles thereof. Life in the “eternal moment” – the “Right NOW” – contains both joy and sorrow. Let me help you return to life by the words I share through your heart-talk from the me still in you. You can hear ME! I’m still with you!