Ingrid and Pete.
I’ve known Ingrid for three years. We met through the United Way of Northern NJ Caregiver Coalition. Initially I knew Ingrid as caregiver to her beloved husband, a person living with dementia. Over the years, I’ve gotten to know Ingrid – a smart, funny, compassionate woman who is a terrific poet and doesn’t suffer fools gladly.
Despite caring for her diabetic mother, her bipolar sister and helping her grandmother bath, it was not until her husband that she claimed the title “caregiver”.
“I became a caregiver when Pete, the love of my life, the man who was supposed to journey through life with me, holding hands, side-by-side, equal partners in all things, the other half of Quick and Quick, could not perform activities of daily living. But long before that, our equal partnership had begun to falter.”
“I am my husband Pete’s caregiver” doesn’t begin to cover her love, devotion and strength on a long and difficult journey. To anyone caring for a person with dementia, Ingrid’s story may seem familiar. For me it was a revelation. (Jump to 911 Help)
80’s: Hints of what is to come.
“My husband lost his keys and his wallet more times, then I thought humanly possible. His farm truck looked like he drove it in a demolition derby, despite being an extremely skillful driver. One day he carried his work shoes – dirty and muddy from the farm – through the house and set them on the kitchen counter. We made an appointment with our doctor.”
The MRI showed an AVM – arteriovenous malformation, which at the time was considered different but harmless. It is now known to increase the risk of a brain bleed. The EEG came back abnormal. Suspecting narcolepsy, the neurologist prescribed Ritalin.
“And life went on.”
90’s: More unsettling changes.
“Our four-year-old grandson Jason loved the farm, the farm truck, and his grandfather. One day, off they went to the farm. Upon returning, Pete came into the house looking shell shocked and announced he had hit our daughter and son-in-law’s car parked in our driveway.” I asked Pete, “where’s Jason?” but he did not respond. I asked more forcefully, “Peter where is Jason?” Still no response. Jason’s parents and I rushed outside to find Jason sitting in the truck, patiently waiting for someone to come get him. It was the last time any of the grandchildren could ride alone with grandpa.”
“And life went on.”
2000’s: Troubling Times
“Our country had just experienced the horror of 911. We had tickets to a figure skating tribute to the 1961 amateur team and their coaches, who had perished in a plane crash. Arriving at Madison Square Garden, we’d normally take the stairs directly up to the Garden but post 911 we were directed to street level. There was no guidance as to where we would be able to enter the Garden, but how hard could it be? If we circled the building, we’d find an entrance. But my husband was extremely agitated. Even after we entered the building, the chaotic atmosphere rattled him. We made an appointment for a geriatric assessment.”
If my husband was Superman, dementia was to be his Kryptonite.
“In August of 2002, my husband had a tractor accident. He had failed to set the brake and shut the tractor down. He leaned over the 5’ tire to pick that one last ear of corn he’d spotted and accidently hit the clutch. The wheel pulled him down under the tire. His spine suffered a couple of compression fractures, most if not all his ribs were broken and he had flail chest, where attempting to inhale causes your lungs to collapse. Knowing he had to get help, he chased the tractor, climbed into it, drove it to the edge of the field, parked it, got into his pick-up truck and drove to a neighbor’s farm where he knew there was a phone and called 911. He was medevacked to RWJ’s trauma center.”
“Three months later, he returned to work full time. I said he got a Z- for the accident and an A+ for everything he did after that. Our grandson Taylor said that if we took off Grandpa’s shirt, we’d find a big “S”.”
“And life went on.”
2012: Pete’s troubling behavior was increasing.
“Pete left to go to the post office where he parked the car, blocking a driveway. Later he realized he locked the key’s in the car and forgot his phone. In blistering heat, he abandoned the car, walked to the other end of town to a shop and called me. I suggested he go to the police station to get help while I came with the extra set of keys. Did you know that there is no one to help you at the police station – or at least not on a Sunday? By the time he got back to his car, there was a police officer there. The officer did not think to be concerned about an older man, in the heat, who had parked illegally, locked his keys in the care forgotten his phone. Now we couldn’t let Peter drive on his own.”
“Pete was an avid exerciser. He ran with the dog, went on daily walks. When he got back to the house, he would call me on his cell phone, and I would open the garage door for him. One day he forgot our phone number – the number we’d had since we were first married. He kept punching in numbers placing calls all over the US. I took his cell phone away and disconnected the service.”
“And life went on.”
My husband had a wonderful sense of humor, but he was aware something was wrong.
One day I told him I had heard that people who have a sense of purpose live longer.
“You need a purpose,” I said.
“I have a purpose,” he said.
I said, “Oh. That’s great. What’s your purpose?”
“To live longer,” he said.
At some point on this journey, my husband did something that baffled me. I asked him “why would you DO such a thing?” He responded with “I don’t know, there is something wrong with my brain.”
There is no stopping the progression of dementia.
Ingrid, like many family caregivers was constantly figuring out how to cope with each new behavior.
• “He started to take his pants down at a local restaurant. After that, I was very careful about where I took him and stayed alert.”
• “He started to open the car door while I was driving 65mph on route 78. He got out of the car when I asked him to wait for me while I got the mail and promptly fell on the driveway. From then on, I had him sit in the back seat with the child locks engaged.”
• “He closed the fireplace damper in the middle of the night, filling the whole house with smoke. I made sure to have working fire alarms and carbon monoxide detectors.”
• “He came down the stairs with both legs in one pant leg; fell out of bed. After that I moved him downstairs to a mat in the family room.”
• “He put the caps on the wrong end of the lancets. I checked everything, eventually taking over his entire blood testing.”
• “He couldn’t shower. I had to stay with him and give him verbal directions and assist.”
Struggling to find a diagnosis.
The diagnosis from Pete’s first geriatric assessment was a slight adjustment and sequencing problem. The only out come was the question: “Do you have any idea how smart your husband is?” “Well, I’m sorry, bring smart doesn’t help.”
The second assessment resulted in an unequivocal statement that he did not have Alzheimer’s. “That turned out to be correct, but still, not helpful.”
It wasn’t until the third assessment that the doctor was finally concerned. “An MRI showed he’d been having multiple strokes all through his brain. So now we had a diagnosis, vascular or multi-infarct dementia.”
“Life was going to change.”
When the caregiver needs care, what happens to their caree?
A member of our Caregiver Coalition, a VNA nurse, had explained to Ingrid, “If you ever need to call 911 for yourself, explain to the first responders that Pete has dementia and has to come with you.
“I started getting injured early on because of the physical strain of caring for Pete. One night in 2015, disaster struck. I was trying to stay awake, afraid of what might happen to Pete while I slept. I fell asleep, fell off a step stool I was sitting on, and fractured my arm in three places. Using the wood floor as a splint, I pushed myself to the top of the stairs. Pete – ever my hero – heard me and came to the bottom of the stairs. He was able to find the cordless phone but didn’t know how to use it and could not follow my directions. Terrified, I told him to climb the stairs and bring it to me. Miraculously he didn’t fall and went back downstairs to let the first responders in. He never returned to our house.”
“After surgery my arm was healing really well. I was regaining amazing range of motion and then my implant failed. The cement separated from my natural bone. While I was recuperating, Pete was in a progression of nursing homes, and assisted living facilities and I realized I could no longer care for Pete by myself.”
To Pete, wherever you are is home. – comment from their doctor
“At every stage of my recovery Pete asked when we would be going home, until we went to a facility where I was able to stay with him overnight, sleeping (when I could) in a recliner. Even at this facility, even though my body was just barely holding up to the strain of caregiving, I participated in all aspects of his care. In some cases, to keep the cost down, others because I wanted him to have the best care and to be kept calm.”
February 20, 2018
“On Feb 20 I left my husband with our children, their spouses, and Stein Hospice to go to a caregivers meeting. I don’t think I expected him to die that day. Maybe I hadn’t accepted that he would die at all. But when I returned, my son-in-law was waiting in the parking lot for me.”
“I rushed to his room and was told that he had just taken his last breath as I entered. Did he know I was there? Should I have held him as fast as I could for those few moments when there was still some oxygen left in his brain? I’ll never know, and I think I was too shocked to even think of it. I sat with him for perhaps an hour trying to absorb the fact that I had lost him.”
“I was no longer a caregiver. But my life went on.”
Ingrid wrote this poem after Pete died, she says it will probably be her last.
Raindrops and Teardrops’
On rainy days
I sit and weep
In the house we shared
Where I cannot sleep
On rainy days
I wonder when
The sun in my soul
Will shine again
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.