Through her own experiences in dealing with aging parents, local writer Donna Randall has penned a guide of sorts to help others through the same process.
Randall wrote the Essential Family Caregiving Agreement, an agreement designed to guide families through the aging and death of a parent figure, after she had experienced the trials and tribulations of dealing with her own mother near end of life.
“My mother was living with my brother and his family when we started realizing that things with her were changing quickly and drastically,” explained Randall, adding that it had become clear to them her mother was dealing with dementia.
After her mother living with family as her main caregivers for as long as possible, Randall and her family solicited help from Island Health who provided home care support.
“It came to a point where Island Health wanted her to go into care because her need was getting to be too great to be at home,” said Randall.
“The whole situation made me really start to realize what it takes to keep an aging family member at home.”
When her husband’s mother began needing care, Randall said she sought out advice on how to best deal with the situation, hoping to learn from the experience with her own mother.
“We knew if we were going to take on caring for her and get involved with the situation that we wanted to get a lawyer involved so we had a clear agreement of both parties’ expectations,” said Randall, who added that people often feel like because it is a family member, legal advice or documents aren’t needed.
“In fact, that’s the biggest reason they are needed,” Randall said, “because it can preserve the relationships between family members.”
When looking into care agreements, Randall said, she found many agreements only catered to aging people going into care and not aging people being cared for at home.
“What we needed was an agreement that catered to us being the primary caregivers, and that didn’t exist. So, being a writer, I thought ‘why don’t I do this myself?’”
Randall continued to say that while writing it, she fine tuned it many times after coming across different hurdles.
“It had to be specific enough to address certain issues like the depth and expectation of care, when outside caregivers would be brought in, what the plans should be if care at home was to become too complex, that sort of thing. But it also had to be broad enough that everything could fit into it. We really had to use our imaginations,” she said.
What the end document is, Randall continued, is an important piece of all the other essential items and documents that are compiled in advance of someone’s death.
“This is something that goes along with a will, a financial plan and all the other essential documents you have drawn up when someone is approaching end of life,” said Randall.
Randall said the use of a document like the Essential Family Caregiving Agreement not only clearly lays out expectations on both sides for care (things like living space cleanliness, nutritional needs, how business transactions are to be handled, transportation needs, etcetera), but it also helps open the door the more difficult discussions that may not be possible to have once something like dementia sets in.
“It allows you to touch on and discuss those tough topics like incontinence and bathing in a way that makes it clear for both sides what the desires and expectations are,” said Randall.
Although Randall is not a professional advisor, she said the agreement is a great place for anyone to start and it can be tailored from there.
“Once you’ve purchased the document, it can be tailored to you and your family and then taken to your lawyer to be included in the rest of the essential documents,” Randall said, adding that the agreement is particularly useful for families who may not all live in the same area.
“It puts everyone on the same page,” she said.
The Essential Family Caregiving Agreement is available online (at a cost of $200) on Randall’s website at dfrent.org.
“What I hope is that this document will prove to be really useful for people who are aging themselves or dealing with an aging parent,” said Randall.