Phoenix Support Group Helps 'Transitioning Caregivers' Cope
When we think about family caregivers for those living with Alzheimer’s disease or another type of dementia, we often think about people who are actively providing care. But what is life like for those caregivers when their loved one passes away or is placed in a memory care facility?
Terry Taylor is familiar with the ambiguity of the “transitioning caregiver.”
“I always swore I would never place her. I said I would keep her home as long as possible," Terry said.
Dorothy Galiger is also a caregiver.
“This is my only second visit. I’m just learning similar to what I’m going through”
“I’m here because my wife has transitioned into memory care. It’s been a long haul,” said Jim Walters.
On this day, they’re attending Banner Alzheimer’s Institute’s Life Transitions support group, it’s specifically for people who have either they’ve placed their loved one in a facility or they’ve recently lost them, it’s a stage that is often riddled with ambiguity.
"You haven’t abandoned your wife, you’ve accepted reality."
“I was a caregiver for my wife I had to place in a memory care facility when she ran away in 110 degrees," Taylor said.
So it placing her would seem like the most obvious and safest move.
Still, Taylor feels remorse.
"I had pretty tremendous guilt feelings about that, this last summer I had to put her on hospice, another guilt trip. As Susy’s counterpart said, you haven’t abandoned your wife, you’ve accepted reality."
A few weeks after this interview Taylor’s wife passed away.
The Susy Taylor is talking about is Susy Favaro. She’s a social worker at Banner Alzheimer’s Institute.
"And then this would happen their person would be placed and/or had died. And more probably when the person had died there really didn’t seem to be an identified role in the ongoing support groups."
Banner has a lot of support groups, and people would go back to those groups even after their person died.
"They had been their psychological family, but over time they would kind of veer off or there just didn’t seem to be a role them because they were now entering a new stage for them: after caregiving."
Life after caregiving. There doesn’t seem to be a lot of information about that stage, aside from online articles that talk about what you might feel; relief, or grief, resentment, or confusion about the future. The thing is, this stage can last years, and Favaro says life is never really the same.
"It’s a huge transition. It’s a string of losses. You’ve been losing that person bit by bit and now this is the final loss. And the reality hitting you now that everything has changed, you have some experience with that, and that hopefully is going to be helpful during transition time of building life now, without that person being here."
Dorothy Galiger was a caregiver. Her husband passed away in October. She was says she’s learning that others in this group have had similar experiences to hers.
"Just a matter of sometimes the family is not as supportive as you would hope they would be."
This was Galiger’s second marriage. She says her husband’s children were not involved.
"It’s nice to know you don’t have to explain yourself. Everybody is going through their own version of what you’re going through."
"We don’t really know why," Galiger said. "And sometimes I think they would just assume remember their dad as he was and not how he is right now."
Terry Taylor faced a similar situation with his sister-in-law
"The sister told me point blank. Don’t count on me for anything."
Favaro says family conflict isn’t unusual.
"Some of the situations are so sad, you know for the caregiver that’s going through that. When they’re doing the best they can to give this care to their person and to have to be at odds with the family you hope would be supportive during this situation, but we know that doesn’t happen."
Dorothy feels conflicted about everything that has happened. And she's unsure if she's ready to forgive.
But the people in this group, like Vicki Noble, get how Galiger feels.
"It’s nice to know you don’t have to explain yourself. Everybody is going through their own version of what you’re going through," Noble said.
In her book, "Loving Someone Who Has Dementia," Dr. Pauline Boss talks a lot about what’s happening in this room. She calls it ambiguous loss, and she writes that it’s unclear, it has no resolution and no closure even when the person is gone.