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Jenison woman fighting for changes to Michigan's end-of-life rules

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JENISON, Mich. — A Jenison woman is trying to help change how the state of Michigan handles end-of-life rules when it comes to families.

“I’m not done fighting for the essential caregiver stuff for people, because we still need that,” said Karen Lynema.

She’s had a pretty rough year. Before the pandemic hit, the family made the tough decision to put their matriarch in a nursing facility.

Pat Vander Weide came to St. Ann’s home in Grand Rapids in June of 2019. Visits though were quickly put on hold.

“And then they’ve been closed for a little bit in 2019-20 for flu and then COVID started March 12th,” Lynema said.

We first talked with her last year as the family was getting ready to celebrate the holidays.

Because of COVID, visitors were not allowed in the building. The family had to say ‘hi’ to mom through the windows. After a year of those interactions, the state started to loosen restrictions.

“I would set a visit up at least once a week so that she got a visit from one of us during the week because there’s five of us kids,” Lynema said.

Her mom ended up in the hospital in May with pneumonia and congestive heart failure. She came back to St. Ann’s for a couple weeks before returning to the hospital.

“Thankfully she ended up at Blodgett Hospital," Lynema said. "They let us all in there on Monday, Memorial Day. All five of us got a chance to get in there and then her grandkids too, almost all of them. If this had happened a couple months ago we would’ve been lucky if one of us could’ve gotten in to see her.”

Lynema tried to visit as much as she could. But her mom didn’t really understand why they had to talk on the phone or through glass.

Her goal now is to prevent that in the future.

“My mom never ended up with COVID so none of this is because of COVID it’s an end-of-life thing anyway,” she said, “but even the people with COVID should still have been allowed to do what employees were allowed to do and see their loved ones at the end because no one wants their loved ones to be by themselves at the end.”

Pat Vander Weide passed away June 2nd.

Her memorial was more of a celebration of life. The family put her wheelchair, and walker along with other orthotics she used next to a rose.

Then wrote on her casket with markers and attached some butterfly stickers.

“The year that she was locked down pretty much we’ll never get that year back and neither will anybody else,” said Lynema.

She’s now using her family’s experience with nursing homes, especially during COVID, to fight for change.

She’s already met with lawmakers and testified in front of house committees.

Now she’s asking the state to make changes for essential caregivers. Saying there’s nothing forcing locations like nursing homes to let caregivers in even during a pandemic.

“I feel extremely frustrated and angry for the people who had to deal with their loved one passing away and they could only maybe get outside a window or see them on video, that is not acceptable,” Lynema said.

Husbands and wives, children, family members and friends could all be kept out. Meaning no one’s around to even check on their loved ones to make sure they’re being taken care of.

“Because by the time I would get to a nursing home or whatever, if we don’t change this and there’s another COVID episode or whatever it is next that comes down the pike, and I wanted to see my kids I wouldn’t be able to.”

Lynema is trying to make sure that doesn’t happen to others. Because in the end she said it’s all about love and her mother’s final words to others.

“She would always end the conversations with people and she’d say, ‘I love you’. And I’m going, ‘you don’t even hardly know them why do you say ‘I love you?' Now I know why she does because you never know when you’re promised the next day. So ‘love you’ is an important thing to say to people,” Lynema said.

Even though her mom’s gone, Karen still visits at least two women at St. Ann’s who love the company.

She’s already working on another letter to lawmakers advocating for a solution.