NORTH CANTON, Ohio — Joni Shaw is going on 30 years of marriage with her husband, Mark.
But right now, she can’t see him very often at all.
“Mark was diagnosed in 2014 at 51, but we really knew something was wrong prior to that, years prior to that, when he lost a job. He was always a really hard worker and that was really out of character for him,” said Joni.
Mark, now 57, has late stage Alzheimer’s disease.
“It was devastating news. My husband took it with a lot of grace. He’s always been a really calm presence in our home and very loving and he took it very well,” said Joni.
Joni said for a long time, Mark’s Alzheimer’s was manageable.
Until 2018 when he had a seizure and he began to rapidly decline. Joni said she made the difficult situation to put Mark in a nursing home.
“Which is something you never really want to do. Luckily, in the early process of his diagnosis we did talk about that. Mark was very clear for me to do whatever I needed to do, and he would not be upset. So that gives me a little bit of peace. I’m so lucky that we had that conversation.”
Mark went to live at Green Meadows, a home not far from Joni. She said she was there every day and would sometimes spend the night.
“Really our visits weren’t really visits because the time by the time he went into the nursing home, he was pretty incoherent, and you can’t really have a conversation. It was more about managing his behaviors and helping him with things. And then as time went on, he got a little calmer but then he needed more and more care.”
Joni said Mark now needs care 24/7, and because she still has to work, thats not something she can provide for him at home.
When the coronavirus pandemic hit, there were large restrictions on when and where Joni could see her husband.
“As sad as I was, and I had some very hard days because of it, I, I knew that it had to be that way. So, in that sense, you know, I was able to deal with that a little better. I also like I said I love the staff so I was calling them every day they were giving me reports on him, and I knew he was getting good care,” said Joni.
She said she read articles online and talked with people in similar situations. Joni said she found out that other states have allowed what’s called an Essential Family Caregiver, “something that allows every resident at a nursing home to have one family member to take a class, and to go through all the other restrictions and abide by all the rules of any nursing home staff, you know temperature check and all that, but that way you can go in and be with your loved one.”
Today, there are many people here in Ohio with similar situations. Together, they are trying to get the state to allow Essential Caregivers access to nursing facilities as well.
“It would mean everything. My husband’s not actively dying, but he is dying. He’s terminal. So, you know, imagine your person, the person you love, that you’ve spent your whole life with and raised kids with and loved and you can’t hold their hand through this, I mean, this is the worst time in his life, and he doesn’t deserve this. Nobody deserves that, but at least I always felt like I could be there to hold his hand scratch his back. Tell him I love him, you know, kiss him, feed him, do all those kind of things and that’s just so important,” said Joni.
Joni and the others have reached out to Gov. Mike DeWine’s office, but haven’t heard back.
“I realize we’re still dealing with the virus, and we probably will for quite some time, but these are people’s last days last weeks, months, whatever it is, I don’t know when my husband’s going to pass. And I don’t want to wait until he’s actively dying to be there to hold his hand. I don’t think that’s right. It seems inhumane to me. So we’re asking the governor to take this seriously and take a look at this act.
Spectrum News One spoke with a representative from the governor’s office who said nursing homes are some of Ohio’s most critical facilities. They said it’s a setting where a virus can spread quickly and to a vulnerable population, which is why the state has strong precautions in place.
