Expert Advice on Negotiating the Caregiving Dynamic

By MEGAN JOYCE

‘Learning to Dance’ Expert Advice on Negotiating the Caregiving Dynamic

According to dementia expert Teepa Snow, a key element of fruitful and successful caregiving is the caregiver’s ability to live in and deal with the present reality while also keeping an eye to the future.

Easier said than done, one might say. Snow acknowledges it’s not an easy balance to strike.

Snow, MS, OTR/L, FAOTA, is the owner and CEO ofPositive Approach to Care, which offers webinars, speaking engagements, onsite training, consulting, and workshops focusing on living well with dementia and supporting caregivers through the interpersonal dynamics of caring for a loved one with a changing brain.

“If you know five individuals, then one of those people has dementia in their life somehow right now,” Snow said. “And the numbers are going to escalate phenomenally as those of us in the boomer generation are hitting that [age] 65 mark.”

She offers the following essential tips for caregivers who are trying to get firmer footing in the constantly shifting sands of dementia caregiving.

What Can They Do Right Now?

“My first message to everyone is that dementia is this really complicated and ever-changing state of being in another person’s brain that we’ve typically known, and so it’s really hard for us to let go of what was, and what the person could do, and be very present in the ‘what can they do right now?’” Snow said.

Snow cannot impress enough the importance of caregiving strategies based on what your loved one can do right now — not five years ago, not five months ago, not even yesterday. This is often a difficult mental shift for caregivers, who likely have decades’ worth of memories of their loved one’s abilities imprinted in their minds.

“[As a caregiver], if they show me something different in their ability state, I’ve got to be able to take that in, recognize it for what it is — it’s not a ‘not trying’ or ‘not willing,’ it’s a ‘can’t do right now’ — and then I’ve got to be able to come up with a response, not a reaction, that moves us in a good direction, or I’m in trouble.”

In adulthood, many of us have been through the process of helping people develop news skills — adding “tools in their toolkit,” as Snow puts it — such as raising children, training employees, etc.

So when we approach the role of caregiver, we often operate under the assumption that the care recipient’s toolkit still contains all the tools they had acquired over their lifetime of learning.

“These are people who had lots of tools, and now, all of a sudden, they’re missing their tools. And you want to point out: ‘Here’s the screwdriver; use the screwdriver.’ And they’re like, ‘It’s a what?’”

Your Roles are Going to Shift

Child, sibling, spouse, employee, friend … we already fill numerous roles in our various relationships. But when the role of caregiver gets added to the lineup — especially in a parent/ child caregiving relationship — the role shift can be especially unmooring.

Snow remembers the disorienting experience when caring for her own mother.

“Without realizing it, I’d really shifted roles with her; instead of being the daughter who’s great and comes by, I’ve become this really mean person who’s diminishing her,” she said.

Piling on an additional and especially challenging role to the caregiver’s established lineup easily leads to feelings of overwhelm.

“Keep looking in the mirror at yourself and start to figure out: ‘When is my care role exceeding my relationship role, and which one do I want to hold onto if I can’t do both? Which do I value more?’”

This brings us to Snow’s second message to caregivers: Dementia is ever-changing — and you’re going to need help.

Dementia is a Team Sport

“Make a choice to get the right kind of help or support that’s needed,” Snow advised. “You can’t carry another person 24/7.”

Snow recommends recognizing your own strengths as a caregiver as well as your weaker areas, and then partner up with family, friends, or professionals who complement your skills with their own differing gifts and expertise.

“Figure out how to bring yourselves together into a team. Dementia is a team sport,” Snow said. “It’s ‘how do we work together to get somewhere, and what’s the goal?’”

Also integral to the success of your team is “cueing up your supporters.” If, for example, your loved one’s doctor has recommended she discontinues driving, make sure your care partners know of and support the doctor’s reasoning so they don’t inadvertently throw your efforts under the bus.

The presence of a supportive caregiving team helps ensure you continue to care for yourself as well.

“What we don’t recognize is the role of isolation, stress, sleep deprivation, lack of exercising, and lack of taking care of your own brain that starts to accumulate over time, which just increases our

own risk pattern,” Snow warned.

“Get support in place before you need the support, know where to look before you’re desperate to find it — those are all really remarkably important but simple things.”

Relationship Problems Will Likely Persist

Snow sees caregivers sometimes hoping their new role will enable them to improve a previously strained relationship with their care recipient — and she cautions that may not be a realistic expectation.

“There was probably a reason why you didn’t have a great relationship before, and unless you can really let go of that previous relationship, and unless they have totally forgotten the previous relationship … Unfortunately, that’s one of the kinds of memories that can hang out, even with dementia,” Snow said.

When you notice you’re having trouble with your relationship dynamic, Snow said, it’s time to pause and pull back: Don’t keep going if it’s not going well.

“You can get people [with dementia] to form new memories, and if they aren’t good ones, now they’ve built up a bit more of a wall between the two of you,” she added. “And it’s going to make the support you want to offer harder, and it’s going to wear you out.”

Become Their Partner, Not Their Authority Figure

“Sometimes you’re not the right authority. Sometimes you’re the one who needs to stand beside the person saying, ‘So, the doctor is saying we need to make some changes.’”

Caregiving relationships, Snow said, are fraught with less tension when the primary caregiver is able to position herself as her loved one’s ally and let the doctor, social worker, or other professional be “the bad guy.”

For example, instead of listing the reasons your loved

one shouldn’t drive anymore or offering your opinion, Snow encourages caregivers to engage in active listening: Repeat out loud your care recipient’s concerns or questions and ask them what they remember about the doctor’s visit.

“You’re not parroting it back; you’re actually absorbing it and letting them hear that you’re with them,” Snow said.

Then discuss with your loved one the options the authority figure has presented, validating her frustration and selecting the best choice for right now. “For right now” becomes a key strategy, Snow said, as it doesn’t take away all hope and encourages your loved one to cooperate until you see the authority figure again.

Also essential is the concept of substitution: Give the care recipient a job to do if another job is going to be taken away. For example, suggest that “for right now,” you do the driving and your loved one does the navigating.

Snow calls this give-and-take strategy “learning to dance.”

“Because me trying to get you to do something — unless I’ve been successful previously, good luck with that,” Snow laughed, adding that when it comes to driving, “people will get another key made, they’ll drive without a license, they’ll drive angry. Even with dementia, people are remarkably resilient: ‘You are not the boss of me!’”

Snow finished by saying that if you are in a caregiving situation where you must be the authority figure, make sure your loved one has a friend and ally to talk to — even if it means that friend must field complaints about you.

And if that friend is a friend of yours or a family member, take care to protect your relationship with that person.

“Make sure you and the friend have an outside relationship where you can heal the wounds, because that can be an incredibly lonely and painful feeling, to always be cast as the mean one,” Snow said. “But it works when you have people who are working together.”