I’m not a patient woman by nature. I’ve never gone slowly and carefully into things but run full bore ahead. One of my mottos is, “If all else fails, read the directions.”
When I start something new, I want to go to the last chapter first and worry about how to get there later. In this hurry to get to the goal, I often lose patience with those that can’t keep up. I’m not proud of this, but it’s my nature – or perhaps my conditioning.
When Alzheimer’s kidnapped our lives, I was jettisoned into an immersion course in patience. Becoming a caregiver for my husband, Bob, was fraught with failure.
I often thought I fell short of being a good caregiver. I seemed to tumble off the patience wagon more often than was comfortable with. I was forever straining to pull myself back on, vowing to be better, yet not being able to fully realize that desire.
Sometimes I’d watch as my body and psyche shut down. It could happen gradually or swiftly. There was a physical reaction, often centered in the solar plexus, as well as an emotional retreat, that could be triggered by something as innocuous as Bob staring at me while I was cooking.
It’s dinnertime. We’re in our small kitchen. “What’s for dinner?” Bob asks for the third time.
“Pasta with smoked tuna and an arugula salad with sun-dried tomatoes.” I’m a frantic, focused cook, moving quickly around the kitchen with no time to wash up as I go.
“What’s for dinner?”
“Pasta and salad,” I say with strained patience and gritted teeth.
The smell of sautéed garlic and onions fills the room. I try to distract Bob with jobs like setting the table or washing whatever I’ve already thrown in the sink or piled up on the counter.
“What’s for dinner?”
“We’re having a yummy pasta and an organic green salad.” I try to brighten my answer and solidify my resolve to be patient, as I pour white wine into the sauce. In reality though, it’s better to repeat the same answer.
I secretly try to dirty as many items as possible to keep him busy. But as soon as he’s finished, he stands off to the side, just on the edge of my peripheral vision, almost at military attention, and watches my every move.
“What’s for dinner?”
Logically, I know there’s no harm in this watching or questioning. Logically, I know he’s bored and has nothing else to do, and I’m his only entertainment. Logically, I know this has nothing to do with me.
But emotionally, it drives me mad. It triggers a reaction I’m not proud of – shutting down and becoming crisp cold. I watch this happen and feel powerless to stop it.
It’s not until my brain chemicals subside and the gate of warmth opens that I can really be with him again, friendly and affectionate.
I’ve studied these shutdowns, trying to figure out a way out of them, a way of being more compassionate with my husband. Sometimes they come upon me for no special reason, and I watch myself retreat inside a suit of armor.
The harder I struggle, the more locked-in and distant I become. It feels like I reach a point where I’ve had enough, and I just can’t give anymore.
I’ve realized that the only way out is through. The only thing to do is to be as aware as possible of what’s truly going on. It seems to me that this awareness holds the key to healing.
I also see the need to have compassion for myself and for what I’m endeavoring to do. Awareness and self-patience don’t come easily. You can read more about these realizations in my book Piece by Piece: Love in the Land of Alzheimer’s.
For years I repeatedly failed at patience, until one day it was as though I’d stepped through an archway into a new country, and I was patient.
I could finally be with Bob without berating myself for failing. I could be with him, open and inviting, experiencing what was going on with curiosity.
I’ve come to see that caring for him was a gift on so many levels, and one of the gifts that has stayed with me is patience. Believe me, my family, friends, and staff are grateful for this gift.
Are you a caregiver? What do you do to stay patient? If by nature you’re impatient, what experiences have you had to deal with it? If you’re a caregiver, what tricks did you use with your loved one to be more present with him/her? Do you feel guilty for your impatience? Do you have any advice to help those who struggle with impatience? Please share your thoughts and experiences below!
The title of the article is “How I learned to practice patience as a caregiver”, but I couldn’t see where you actually explained the “how”.
Eventhough my husband & Mom have consumed 12 yrs of my life it has been w/out the trappings of the dreaded alz. Unfortunately my husband died w/ cancer after 2 suffering yrs. Mom is 102y/o & we have been together 24/7 for 9 yrs. Her’s is a spotted dementia & I find myself w/ a guilty lack of patience most days. The 4 months of singlehood between them makes me long for’a life’, I am embarrassed to say. Two cruising vacations w/ friends before plandemic gave me a headwind to plow onward, however it’s been 6 yrs & I’m out of wind most days anymore.
Plus guilt knocks at my doorstep.
Thanks for tacking this subject. I think all caregivers have moments/days/yrs of guilt. We will survive & it’s good to hear from all ppl suffering guilt!
For all of you — and to myself.
I helped my Mom (now 90) when my Dad was fading — not with Alzheimer’s, but those “shadowlands”
in and out of consciousness, the diapers, the endless moaning and asking questions, the being awake
with him until he fell asleep. I am taking care of a failing Labrador Retriever and I see that in the same way–knowing we will have a vet help him leave–but we can’t do it yet because we are waiting for our wildland firefighter son to come home and be with the beloved Lab when he passes, and I am tender and patient and accommodating, sleeping on the sofa near him because he can’t go up the stairs. And now–I’m 68 and in between my 90-but-okay Mom (brother next door) and 83-but-starting-to-fail husband. I feel guilty for feeling restless and seeing my days to travel march on without me. I want to jump in a jeep and drive away and become a “missing-by-choice person.” I am afraid by the time I am free of care-taking, I will be struck by illness and never go anywhere! I say out loud,
“For better, for worse, in sickness and in health,” and smile that this is what I promised 36 years ago when I married a man 16 years older (we have a wonderful son together). Thanks for sharing. The feelings of guilt and resentment and restlessness topple over each other. I feel better not feeling alone with these thoughts. Part of the journey. I will say, being with my Father as I watched my mother kiss him and say, “It’s okay, Jason, you can go now,” was a stunning and beautiful moment I feel blessed to have bee a part of. They were together 70 years. I tear up remembering that. Know that the greatest gift you give your loved ones are these hard times! Be proud of yourself. Be pleased.
I care for my parents. They are both mentally sharp (for the most part) and are 93 and 91. My patience is tried every day because they live with me and I have to do more and more in the house and the gardens. I work from home most of the time so am always available. I’m not much of a cook (really don’t enjoy it) and housework is a pain. So the more I have to do, the more impatient I get. Until Dad will say, ‘Linda….’ and I say back in a very impatient way, ‘Yes….what now.’ I feel horrible when I get to that response, but I can’t seem to stop it. I have started yoga once a week and try to leave them to their own devices during the day, but I can hear everything they do and often run upstairs when I hear they need help. It’s not an easy job, caregiving, but I don’t to waste our time together with me being impatient. Any suggestions would be gratefully received.