People in Nelson’s dementia caregiver support group get it.
They get it when a woman admits she got angry and yelled at her husband who suffers from dementia.
They get it when a man expresses his grief at seeing his mother slipping away, becoming a different person from the one he’s known all his life.
They understand the physical and emotional exhaustion.
“You maybe don’t even want to talk about that with your own family,” says Gerrie Melnechuk, whose husband Dale died last spring after suffering from Alzheimer’s for ten years. “But in that group you can feel comfortable to do that because you know that these people get it, they really get it.”
Gail Russell, a co-facilitator of the group, says people attending are often in emotional distress because “they are losing the person in little bits and pieces.”
She says each meeting begins with a check-in.
“There often seems to be a theme that comes forward, something that maybe others in the group have faced already, whether it be bathing, or wandering, or anger or repetitiveness.”
At some point, for caregivers, there is a shift, says Melnechuk, in which they fully realize nothing will be the same again.
“It might be the fact that you and your mother can’t go shopping and for lunch and do the fun things you used to do as mother and daughter. It is different, it has changed. You feel it. And you can come to the group and talk about that, with other people who have had that moment with their loved one.”
Russell says caregivers have to deal with anger and frustration, both their own and their loved one’s, and the group, along with training the group provides, can help them learn to manage it.
“We can learn to step back and say, that is the disease, they are not doing this on purpose, they can’t help it that they are demanding too much of me.”
She says it’s important have someone to talk to about this “because you feel guilty when you have those feelings. They just add to the burden of what you are going through.”
Melnechuk says she often reminds the group that one of the best ways of diverting difficult conversations with a person with dementia is humour. She recalls a situation in which her late husband angrily called her stupid, and she diffused it with a joke that they both enjoyed.
“I said to my husband, ‘I always told you, you should have married someone smart and not so cute.'”
Russell advises separating the person from their anger by thinking about what might be causing the anger.
“It’s their loss of control and their frustration and fear. That is usually the base. Just remember to take a step back, then empathize if it is appropriate, or divert the conversation. How do you adjust your behaviour to the problem? Because the person with dementia can’t adjust theirs.”
Melnechuk describes a time when she and her husband were working in their raised garden beds he had built years before.
“We got the peas planted and I went inside to get something and came out to put up the netting and he had turned it all over again, with the peas we had planted. My first inclination was, are you kidding me, then I thought, well, it is not about the result, it is about the process and we really got a good workout because we turned this over twice. I didn’t scold him. I just said, well if some of them grow they grow, and if they don’t, that’s the way its gotta be.”
She says the person you are caring for is always changing, and the caregiver is changing to. So you have to learn to let go. For example, she had to let go of having her household perfectly organized.
“I was not a patient person, and that for me was a big lesson to learn, letting go. I’m thinking I could be getting so much done here in the house, and had to realize I am doing the most important thing I need to do. If there’s dust, or dishes that need to be done its not that important.”
Russell say caregivers need to take a break.
“Taking respite, going on a holiday, putting the person in care for a week or two. It is a very hard thing to do the first time, but sometimes that is what you need. You don’t know now tired you are when you are going 24-7.”
Melnechuk says she tried to take that advice.
“When my husband could still spend time with friends I could get a few hours here and there. Eventually we used Broader Horizons (adult day program in Nelson). I maintained physical activity. We walked and walked and walked.”
The support group meets monthly. For more information call 250-352-7444.