A Day in the Life

For my fellow dementia caregivers--a band of dedicated wives, husbands, daughters, sons, sisters, brothers, and friends, who toil mostly behind the scenes with little credit or thanks, doing it out of a sense of rightness and, if truth be told, out of love. This blog post is for you. 

A day in the life of a dementia caregiver has three distinct components: you physically care for your loved one in whatever ways he or she needs, you anticipate, and you remember. Sounds simple, doesn't it? But it's really very challenging. 

Many people wonder what you do when you care for a loved one with dementia, and the answer will vary from caregiver to caregiver. Some of us are busy helping with bathing, feeding, and walking, but many of us, especially those of us dealing with behavior variant Frontotemporal Dementia (bvFTD), also spend time dealing with bizarre, unpleasant behaviors. Usually that means we are cleaning up messes after they have happened because your bvFTD loved one can think up things to do you cannot imagine. 

A few years back, my youngest son and I had to apologize to store employees because Gordon, my formerly courteous husband, would fly into a rage at helpful, unsuspecting employees and swear at them using the "F" word. Then, of course, there are the money problems. 

Families caring for a bvFTD loved one often have suffered devastating financial losses resulting from the loved one's poor executive function and choices, which means the caregiver has the added stress of figuring out how to keep a house over their heads and food on the table. Scary.

In addition to the physical caregiving, there's the anticipation factor. It's all about anticipating what's going to be needed next. It's about helping with minutiae, the hundreds of things you and I do each day without thinking about, on autopilot, but the person with dementia can no longer do without help. For instance, I loosen the jars and caps I think my husband might use that day to alleviate his frustration because his grip is now weak. I put items he might use in exactly the same spot so that he can find them. And I've recently begun to help him with dressing. He's tries to put shirts on upside down and gets all tangled up, and then sometimes he needs help with buttons. We caregivers never know what the next day will bring. We may have several calm days where we are lulled into a routine, and, then, bam, something new pops up. As you might suspect, we don't get much sleep, always half listening, waiting for the proverbial other shoe to drop.

Oh, and then there are the doors being left open. Whenever Gordon goes outside, he leaves the door open, and he often leaves it open when he comes back inside, or he closes it with a beloved pet outside and doesn't hear it scratching or whimpering or meowing to get inside. I'm often searching for my very frightened cat or letting in my very puzzled dog, neither of whom understands what has happened. Dementia is hard on pets too.

Perhaps the most difficult job of a dementia caregiver is being the rememberer, the caretaker for the memories of the time before your loved one developed dementia. Somehow, in the midst of irritation, frustration, anger, loneliness, despair, resentment, pain, and confusion, an array of unwanted emotions that wash over us when least expected, we have to keep enough perspective to not let the spouse, parent, child, or friend that we once deeply loved and cherished be lost to us and to the world. We have to tell the first part of our loved ones' stories in addition to the last part. As Gwydion says in Lloyd Alexander's The Black Cauldron, "so shall I honor Morgant for what he used to be." Replace Morgant's name with our loved ones' names and honer them for what they used to be. Our loved ones did not choose this dreadful disease, so we must find ways to remember and honor our loved ones' lives before they developed dementia.

Wow, all that in a dementia caregiver's day, and I didn't even touch on the driving issue and taking the keys away, or the fears and reality of abandonment by family and friends who choose to be in denial or are scared or don't want to be bothered. And how about getting reliable respite time for oneself? Ah, there's always more to write, isn't there?

Big hugs to all my fellow caregivers,

Kate

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"Why Are the Seeds on Top of the Dirt?"

"Katinka, why are the seeds on top of the dirt?' asked Gordon with a puzzled expression in June 1983. We had been together as a couple for almost three years, and I was seven months pregnant with Amy. We were at the mountain ranch that would be our family home for the next twenty-one years, and we were planting a vegetable garden. Gordon had handed me a packet of seeds and said to follow the directions. Well, I did just that, followed the directions, which said "place seeds 4 inches apart." The look on Gordon's face was priceless. Then, he smiled, laughed, and hugged me close, and said, "I forgot you've never planted anything before. The seeds have to go in the dirt." Whereupon, he knelt beside me on the ground and showed me how to plant seeds. This is one of my favorite memories of Gordon and me together because Gordon did not tease me, put me down, or ridicule me. Instead, he was patient, kind, loving, and made me feel cherished.

What prompted this memory? Recently, I read an article about dementia caregiving, and one of the suggestions is to "Spend time remembering who the person with FTD was." I haven't done this much because I find it very painful, but the point was a good one. If you remember your loved one before FTD (frontotemporal dementia), remember what you loved about him or her, it will help you to be more patient and understanding during the sad, lonely, frustrating days, weeks, and years of caregiving.

Soon after I met Gordon, I sensed he was special. The beginning, however, was not auspicious. He would chitchat, and I dislike chitchat because I find it pointless, plus I'm not very good at it. One Saturday at the office in 1976, three of us were talking about politics because it was an election year, and I asked Gordon a question. He replied with some cliched comment, and I looked at him and said, "If you cannot give me a thoughtful answer based on intelligent ideas, then don't bother talking to me about politics." He laughed uproariously and went back to his office. A few moments later, Gordon came back to where I was and answered my question thoughtfully and fully. 

 

From that moment on, Gordon only talked about real things with me--poetry, politics, saving the world, and so much more. Until FTD changed him, Gordon and I had many, many fun, spirited, deep, intellectual, thoughtful, sparkling conversations that went on for hours. One rainy day in January 1985, during our three day honeymoon, when I was seven months pregnant with Gavin, while it poured with no let up all day, we spent more than six hours engrossed in our discussion about the book A Passage to India by E.M. Forster and the film based upon the book. The hours flew by; it was pure heaven. At dinner that evening, we considered that afternoon to be one of our finest ever.

I think two happy memories are enough for this first remembering exercise the article recommended that we dementia caregivers do. More than two memories might be overwhelming because of the stark contrast between then and now.

I often wonder if there is any part of the Gordon I loved and married and had children with left, or is his essence all gone. Mostly, I think it is gone, but every once in a while, months or years apart, Gordon will say or do something that echoes the past.

This morning, Gordon said, "Katinka, good morning. How are you today?" This may not sound remarkable to most of you, but it was the first time that Gordon has said it to me, when no one else was around (with visitors in our home, basic courtesies sometimes kick in--it's a puzzlement), since August 2002, eleven long years ago. For a moment, it took my breath away, then brought a tear, then a smile, making me remember our mornings so long ago that often began with Gordon awakening me with a kiss and a bit of poetry. What do you know? A third memory. 

Take care,

Kate

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