This third post is guest written by my wonderful partner and Counsellor of 20+ years experience, Joy Greenleese. She describes her own experience of looking after her husband. I thank her for the honesty and integrity that she has put into her words.
On Being a Caregiver
It’s 2 a.m. and you’re awakened from dream-muddled sleep by a loud noise. Your eyes fly open and try to adjust to the murky darkness of the bedroom. On high alert, you take a moment to listen intently as your breath pushes out in short, shallow bursts, waiting for the next crash. Not for a second are you fearful. This experience is not foreign to you. You know what it is, and you know that your aid is likely required. You are the caregiver of a spouse with dementia, and at this time of night, you are all on your own.
He is now sleeping in a separate room, for he roams the house at night and you need to scrabble whatever sleep you can from the nighttime hours. You place your weary feet on the floor and force your unwilling body into an upright position. The cat has begun to howl outside your husband’s closed door, as if you didn’t already know that a problem needed your attention.
Inside his room you find a now-familiar sight. He’s fallen out of bed and is tangled up in sheets and the legs of a table you’d wedged behind bed and wall in an effort – clearly unsuccessful – to avoid such a problem. Getting him extricated is not as difficult as getting him up on his feet, but you’ve solved this one before. You sit on a chair, brace his feet against yours and, grabbing his arms, manage to ratchet him up to a standing position.”
It’s time to get him back to bed. The cat is still howling, and you stifle the urge to strangle her. “Shut. Up!!!” You glare at the cat because directing the same venom toward your spouse will surely backfire. You shove the offending table into a nearby closet and collect the bedding that has been strewn around the room. After securely tucking the sheets around three sides of the bed, you turn your attention to getting your man back into it.
He stands stolid and unyielding despite your suggestion that he get in. You sit down and pat the space beside you, yet still he stands. You grab his hand and pull but he resists. The tone of your voice rises in intensity as you tell him he needs to get into bed, but his mid-night confusion persists. Dementia is winning. Everything you try fails. You long for the comfort of your own bed. Exhaustion is a constant companion and it’s getting the better of you. You yell: “Get in bed!” He begins to cry, but still he stands by the bedside, snot and tears running down his face. What now?
You are out of ideas. All of your expert problem solving skills are dissolved. You know if you give him a wee push, he will land safely on the solidity of the mattress directly behind him and your goal will be achieved. So you push him, as gently as you can, but this frightens him and he grabs for you. His fingernails find your soft belly flesh and you howl like the cat did earlier. He looks surprised, and in words that only vaguely resemble English, asks what is the matter. You raise your shirt and show him the marks, red-angry ridges rising from your flesh. He begins to cry once more.
You feel awful. You should have lied and said it was nothing, but you were overwhelmed by exhaustion and frustration and the desperate sadness you feel all day long. In a weak moment, you wanted a bit of empathy, and you blew it.
This is caregiving.
I’ve lost track of the number of times I’ve heard stories of saintly carers, praised endlessly for their unstoppable levels of patience, all but beatified. I suspect the tellers have no knowledge of the deep-night dealings, the poorly slept, irritation-laced negotiations like the one described above. I’ve been there, however, and I gleaned a few juicy learnings in the process.
1. No matter how good your problem solving skills, they will fail, and that’s okay.
2. You can’t do it perfectly all of the time. It only matters that you’re doing it.
3. You aren’t meant to do this alone, but sometimes you will be the only one in the room, and your best is enough, even if you become impatient and irritated.
Way before he was diagnosed with Young Onset Alzheimer Disease at the age of 55, my husband, Barry, used to say this to me when I found my best efforts inadequate:
“Get off your back, dear!”
That’s still the best advice I could give any caregiver, whether they are caring for a parent, a child or a spouse, in good health or poor. The myth of the perfect carer is just that – a myth – best left to the storybooks.