"I never want to end up that way."
It seems such a definitive statement. So simple. No one wants to imagine themselves with dementia, unable to manage the basic needs of survival: shelter, nutrition, sanitation, etc.
Wish as we may, according to the Canadian Institute for Health Information, 1 in 4 people in this country age 85 and older will be diagnosed with dementia. How many of those insisted they did not want to end up that way?
Mental acuity and physical well-being are, for most of a healthy person's life, like pieces of jewelry, a shimmering anklet. As an individual's autonomy is gradually lost, that anklet can become heavier and thicker until it transforms into a weight and shackle. Not only does this burden the bearer, it also shifts responsibility to that person's next of kin, generally their children. How does that child navigate this forest of dependence with a parent who, "Never wanted to end up that way"?
Is there a sweet spot? Is there a point in time when a parent and child can together clarify their roles and their wishes, and understand when and how to abdicate decisions that will impact an elderly person's life and death?
If there is a perfect moment, it is while both parties are patient and lucid. It can also never come too early.
Shelley Snow, PhD is a licensed psychotherapist in private practice in Montreal, Canada, who spent years working in hospitals with dedicated units for older patients, assisted living, and long-term care facilities. "Sit in a relaxed moment with the person,” she says. “Say, 'do you have any thoughts about, or have you ever considered, how you want to spend the next period of your life moving forward?'"
She emphasizes that calm, open-ended questions are less threatening. She says patience is paramount. "Sometimes it's a process over long periods of time."
Unfortunately, this conversation is often delayed—perhaps because of denial of its necessity or a fractious parent-child relationship—until an autonomous living environment becomes untenable, adding stress to an already delicate situation. "When people are at risk of dementia, and they start having difficulties with memory," Snow says, "that's probably when it is most fragile." It is also when it can be most frustrating. This is the moment when the parent a child has known their whole life starts to disappear, and is replaced by this new person, this fragile stranger.
The child also assumes the role of protector, which often means being the person who strips away a parent’s foundation of individuality and freedom. A common example is when a parent is no longer competent to drive.
This conversation, Snow says, must be a delicate balance between validating a parent's feelings, and stating facts about why their operating a vehicle is no longer safe. She spoke about navigating this with her own mother. "The first thing I would say is, 'I understand this is very hard for you; I understand your anger. You've been doing this for many years, and it's really hard to not be able to drive anymore. We did not enjoy taking this away from you, but you had several accidents and you were putting yourself in danger, and other people in danger. That's why we had to do this.' I think the first thing is to affirm a person's feelings...the second thing is to remind the person [of what happened], because they may not remember."
These discussions become even more complicated because the child brings their history into the discourse. They are not only talking to their mother or father about driving, or assisted living or nursing care, they may also be walking into a room dragging a subconscious suitcase full of issues.
"There is [often] a lot of unresolved anger towards the parent that can make it much more difficult," Snow says. "[Children should] listen and hear, and put the parent's needs first, or even identify what [those needs] are, apart from what the child is wanting."
In some circumstances, they are not just talking to their parents about their care. They are also trying to resolve that argument about the boyfriend their father despised, and their mother’s curfew they didn't respect, and when the child insisted on moving away for school leaving the parent feeling abandoned.
"It can be really helpful," Snow says, "to have a person outside the situation who is a trained therapist helping: [A person] to sort through what is from the past, what is going on in the present, what they need to do for themselves, what has to happen ideally for the parents...and what they can live with."
Social workers, occupational therapists, doctors and nurses in a hospital may be the first interventionists when a patient is diagnosed with dementia and needs a change in their living environment. They, too, have invaluable experience in guiding not only the parent, but also counselling a child who is wrestling with stress, desperation, and a sense of helplessness.
Those feelings are also exacerbated by limited available options to seniors needing assisted living and late-in-life care. Shame and guilt can be overwhelming, especially when a parent asks to move in with their child.
In some cultures, this is simply a given. Snow has worked with many Greek or Italian clients who have told her, "It wasn't an option. This is what we do."
She says it was not always easy, "It may be difficult and demanding, but there is just no question. They put up with all of it, because that's what they do." She admits that children do not always want their parents living with them. Regardless of the parent’s wishes, Snow says the choice is ultimately up to the child.
The choice of when to initiate conversations about the next—and eventually final—stages of life most often also rest with the child. "Listen exquisitely to what [your] parents or loved ones in your family who are getting older are telling you what they want and need." Snow says. "Look at what future plans are going to be. In my experience, if you listen really well, a person will tell you some very important things about what they need and what they want."
Which may avoid them ever being the person who didn't want to end up that way.