The Weight of Caring when the Carer Can’t

Frances Henke, Hastings, Australia

Writing about the physical impact of caring for, then loss of, a spouse as a polio survivor may seem self-serving, but in this case, having talked to others, I realized there were valuable shared experiences worth passing on.

When daily routines that match our abilities are suddenly added to, life can become debilitating. The person we may have relied on to do the heavy shopping, walk the dogs, cook evening meals, load the dishwasher, etc., can’t do it anymore. They may be in pain, need daily nursing, or require frequent hospitalisation and rehab.

On top of those chores comes attending to their every need—drinks, meals, dressings, falls, and bad accidents in the bathroom or elsewhere involving heavy cleaning. Daily visits to the hospital can mean long corridor walks and parking lot battles.

Then comes the new equipment—shower chairs, toilet seats, walkers, cushions, protective sheets, and new electric recliners. All of that freaked me out. At first, I didn’t know why. Dr. Steve de Graaff suggested a touch of PTSD from blocked memories of childhood equipment. Accepting this helped me face and then eradicate it.

Thus, the first thing I did once I knew my husband Ian wasn’t coming home ever again was to get rid of the lot. Our honorary granddaughter arrived on Christmas Day asking if there was any-thing she could do. “Yes,” I said rashly, “Take all that stuff back to Frankston Hospital.” I had telephoned the Hospital in the Home people twice asking for it to be removed. They promised to collect, but before Christmas … nah. Anyhow, it was eventually all loaded into a 4WD and deposited at the hospital. Best gift ever.

My next clearance was to pass on Ian’s two specially-built electric recliners to friends. One, with Parkinson’s, was so pleased, as it allowed him to rest without going to bed during the day. The chair was also a link to the man who had been so supportive of him.

My excuse for this blitz was not callous, but motivated by my desire to return the home to a state of wellness. I didn’t want electrified chairs or powered anything. To replace the recliners, I searched online. I made myself promise I wouldn’t buy anything, even with free delivery, without first checking the Salvos.

So, the next morning I hit the Op shop store. In their Hastings window was a beautiful Moran lounge chair. Okay, the upholstery is ivory, not ideal for a gardening, art, and dog home, but the cleaning lady recommended I “just throw a shawl over it.” Done … very comfy, too.

Also, promptly and remarkably, after cancelling his cleaning day (grrrr) the week after his death, windows and carpets were professionally cleaned and everything dusted. I had given Mercy Health a stern lecture on organizations like Telstra and Centrelink1 with the help of trained bereavement officers. I was incredibly upset, needing the support of the cleaner who had been with us for years (once saving Ian’s life by calling an ambulance). A subdued Mercy Health manager agreed they, too, needed bereavement training and grace on accounts for cleaning up after the deceased.

Naturally, fatigue was a huge issue in looking after Ian. I am still not sleeping well. The dogs are still out of sorts, too, missing him. They had gotten used to him going to the hospital, then coming home. Not this time.

The emotional weight of well-wishers had to be managed, too. I was exhausted from the influx of kind friends and family bringing flowers and food. We didn’t have a formal funeral. I couldn’t manage that emotionally. His death coincided with the funeral of one of our Mornington Peninsula Post-Polio Support Group (MPPPSG) members, a big church affair. I knew Tricia would understand me not going.

For Ian, we had a small, informal lunch instead at Tooradin Sports Club, where we would meet friends every year at Christmas. He had said recently that he was looking forward to that lunch. Well, he was there, his ashes released into the nearby inlet.

We polio survivors are notorious for “doing it mineself,” powering through pain. There are times we have to call “barley,” ask for, and accept help. Caring for family is one of those situations where it is essential to find out what support is available and make the most of it.

When the provider would not accept Centrelink’s verbal acknowledgement that I could be grandfathered under the new scheme in order “not to be worse off” as legislated, I became unusually anxious about my security, needing GP and medications to settle.

A face-to-face meeting at Services Australia was recommended. I had spent hours online last year in discussions over the new legislation. I did not expect to be told that I had to pay 25% for each service from November 1, 2025. That would mean cancelling services or reducing hours with the very people who keep me mobile (chiropractor, podiatrist, massage therapist, orthotics, etc.), and it would potentially be a bad outcome for those workers, as well. Already they are suffering. Our gardener had not been paid since before Christmas, and the local mobility store hadn’t been paid for goods provided.

Back at Services Australia, aka Centrelink, it turned out that the Hastings office does not have an aged-care-trained officer. They had to communicate online with the Mornington office to resolve my issue. The separate interview over financial affairs was pretty odd, too. Claims of six figure sums we once had—pure fiction or error.

Losing a spouse of fifty years does not come easily. We only half celebrated that anniversary coming in the midst of his illness. But we made it. Ian Henke’s influence is alive and endures. His legal research won a case against the state government the day he went into the hospital. The phone has rung off the hook with people telling me what he’d done for them—saved their farm, business, family, sanity. A senior barrister said Ian had “a colossal and vibrant intellect.” Yes, a colossal intellect, but he never talked down to anyone, especially me.

I am okay. I am having to learn to manage the accounts and do some cooking. But, as a friend said, “Someone has to take over.”

All columns originally published by Post-Polio Health International (www.post-polio.org)