A number of years back, my dad, who had developed dementia after a surgery to correct problems from a World War II brain injury, was seized by sudden, horrendous pain. While Dad had to cope with considerable pain from arthritis and some back issues, this was different.
I knew his pain was acute and extreme by his body language and vocalizations, even though he couldn’t articulate exactly what was wrong. Dad generally had the ability to communicate, though his dementia often skewed the information he was trying to share.
However, this pain was more than he could put into words. He was writhing in utter agony, only able to moan and even holler in pain. Slowly, I realized that he thought he was being tortured.
I rushed to the nurse who was in charge of his floor at the nursing home. She explained they had called the doctor, but the doctor couldn’t figure out what was wrong. The Physician’s Assistant would visit Dad that day, on her rounds. Meanwhile, I was sickened by his agony and my inability to help him. I tried my best to comfort him, but felt powerless.
When anyone we love is in pain, most of us want to find an answer. When that person can’t tell us what is wrong, our feeling of helplessness can be nearly overwhelming. We try one thing, we try another. We have experts examine the person. We do all we can, but when the pain doesn’t change, yet the person isn’t terminal, we wonder - at least, I wondered about Dad - how can he go on like this? He wanted to die and I didn’t blame him.
Dad’s non-stop agony went on for over two weeks before the Physician’s Assistant mentioned that a medication he had been taking for quite some time can cause pain in the extremities, even though the purpose of the medication was to control nerve pain. She was skeptical that this medication could be the cause, but I was right onboard and said please take him off of it. They did wean Dad from the medication and that pain ended.
The relief was huge and we were all grateful for the answer, though those weeks of Dad’s extra suffering are imprinted on my brain. His helplessness, my helplessness - I struggle with tears at the memory.
Chronic pain affects many of our elders. Arthritis can cause severe chronic pain, as can nerve disorders, digestive disorders and other health issues. Chronic pain is tough on anyone, at any age. But for the very young, for severely disabled people of all ages, and for those with brain diseases that can strip them of their ability to articulate their pain, chronic pain is even more dreadful.
The need to communicate our distress to people who care about us is human. Babies cry, and frantic parents poke and prod and sooth, searching for the cause so that they can stop the pain. Someone with dementia may moan or scream and beg for help. Others may shed a silent tear. How are we to know what is wrong? How are we to help?
As Dad’s case shows, knowing the pain is there doesn’t mean we can fix it immediately, especially when people can’t say how or where they hurt. We need to be alert to what is normal for these people, so we can spot unusual pain. We need to learn their body language and other signals well, so we can spot distress and stop it if possible.
The differences in the body language of mental anguish and physical pain may be subtle. This is where memorizing the body language of our loved ones is vital. We won’t always be right, but if we know our loved one’s movements and expressions well, we should be able to know when medical intervention is called for. This knowledge will also help the treating physician, if we are fortunate enough to have one who listens.
With Dad, even though his pain was obvious, there was an attitude by some medical people of just giving up or giving in, as if they’d done all they could. That was unacceptable to me. I knew him well. I could generally tell if physical pain was his major problem, or if his demented brain was the problem. I pushed and complained. I made noise. Eventually, the culprit was discovered and some of Dad’s misery was halted.
We are the advocates. We sometimes need to push to make sure everything that can be done, is being done. That often means knowing the language of our loved one’s body and doing our imperfect best to help him or her when we can. If there is nothing we can do medically, we can hold on tight, offering the comfort of love through touch. It’s something.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.