Parkinson’s disease caregivers need patience and support

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by Sally Smith

She was a bit nervous talking about being a caregiver… not that she hasn’t been one for years as a mother, nurse, and wife.

But in this role as a full-time caregiver for her husband Robin, Sheila has found she has to be even more vigilant, aware of situations, and more thoughtful of needs (both his and hers).

Robin, 72, has Parkinson’s Disease, compounded by Lewy Body Dementia and now Alzheimer’s. He lives at Maple View Lodge in Athens. She lives in Perth. In their heyday, they farmed two farms, one near Portland and one outside Easton’s Corners, but now she’s centred in Perth with a two or three times weekly drive to Maple View.

Every day she misses him. They spent 31 years putting, and keeping, a marriage together through good times, fractious times, with kids and now grandkids, and she knows he’s well cared for at Maple View, but still.

Sheila knew for some time that something was happening. “I had to push him out the door to go to work,” she remembers, which was unlike him. As a long-distance trucker and then as a Public Works employee for Merrickville-Wolford Township, Robin had to be on his toes. But there was one foggy day Sheila says that, “he was just done.” He left their farm in Portland, got as far as Seeley’s Bay, pulled into a garage and that was it.

They sold the farm, moved on, and three years ago Sheila moved to Perth. For many years before this last move, Sheila kept her own job in Brockville. She left at 6 am and got home at 8. Robin was on his own during that time. It was a long drive. She vividly remembers getting at least two phone calls where Robin wasn’t making any sense and she had to leave work quickly.

Sheila is a determined woman with a strong ‘can-do’ ethic. If she had her way, Robin would be with her in Perth, but she is also practical, with a long nursing background. She knew, for his safety, she’d have to find a place for him, so she started looking. She chose three, and will be forever thankful, she says, that she found a spot at Maple View. “It’s hard to get into homes now,” she adds, “with Covid-19 on everyone’s doorstep.”

But she’s still on the go, learning, asking questions, finding out what it’s like to be a caregiver. She went to friends who care for husbands and asked, “what do you need to be a caregiver?” Each had an answer, support and patience. So, Sheila found support groups, read all the information she could find, and put it to use.

Parkinson’s Disease (PD) is a neurodegenerative disease that is caused by the deterioration of dopamine in the brain. PD affects one out of every 100 people over the age of 60 (30% are under the age of 50). People commonly experience muscle rigidity, balance difficulties, and tremors, but there are also many non-motor symptoms, including sleep issues and loss of smell. The rate of progression varies with each individual, making diagnosis challenging. Early diagnosis is important, however, so that treatment (including medication, diet, exercise and physiotherapy) can be started. Some studies suggest that having PD increases your risk of developing Lewy Body Dementia, but most patients have only one of these conditions.

Today, as Sheila looks at Robin, she sees he’s gone from a big man to a thin version of his former self. “Robin lost the farm, he lost his mind, he lost his physical mobility…and he knew this was happening,” she says, tearing up.

But she also sees his eyes as blue as ever, his hair thick and curly. She knows he likes to dance (“yes and no,” she says, smiling), Buddy Holly, and, she adds with another grin (and a dig that only a wife can make) — “I molded him into something good.”

Once a caregiver, though, always one. Sheila found a planter box for Robin (her girls paid for it). It was a medium sized one that his wheelchair can slide under. She’s filled it with earth and marigolds, his favourite plant.

This year, the Lanark North Leeds Parkinson Canada SuperWalk takes place on Saturday, September 11, with a Virtual Opening Ceremony at 11 am. To register, donate, or for more information, visit donate.parkinson.ca/lanarknorthleeds or call 1(800) 565-3000 ext. 3392.

All activities will follow Provincial COVID Guidelines.

To understand more about caregiving for people with Parkinson’s go to https://www.parkinson.ca and look under Care Partnering.

 

1 COMMENT

  1. My husband was diagnosed of Parkinsons disease 2 years ago, when he was 59. He had a stooped posture, tremors, right arm does not move and also a pulsating feeling in his body. He was placed on Senemet for 8 months and then Siferol was introduced and replaced the Senemet, during this time span he was also diagnosed with dementia. He started having hallucinations, lost touch with reality. Suspecting it was the medication I took him off the Siferol (with the doctor’s knowledge)  him on PD natural herbal formula we ordered from TREE OF LIFE HEALTH CLINIC, his symptoms totally declined over a 3 weeks use of the TREE OF LIFE HEALTH Parkinson’s disease natural herbal formula. He is now  almost 61 and doing very well, the disease is totally reversed!  (w w w. treeoflifeherbalclinic .com)

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