Difficult Diagnosis, Difficult Decisions for Caregivers & Seniors

By Wendy Johnstone
July 26, 2016

Today was a very hard day for me as a gerontologist and case manager. I have a client who has Alzheimer’s Disease. It’s been five years since her diagnosis. She is on the highest dosage of Aricept and is well supported in Assistive Living. She is very functional and maintains a high level of independence and quality of life. But some cracks are starting to show. About three months ago she fell and hit her head hard resulting in blood on her brain and notably, a decline in her memory loss. Her physician felt it would be important to monitor over a few months to see how well she “bounced back”. My client also presents well and most times when people meet her, they don’t understand just how affected she is by her memory loss. As we went to see the physician today to make some decisions about her medication, a memory test was given (the standard Mini-Mental) and the physician was shocked at how poorly she did. I wasn’t as shocked. My client was devastated and was grief stricken with news of her advancing loss.

Receiving a diagnosis (or in this case re-hearing) of dementia uncovers the complex world of decision- making process for people with the disease and their care team. Few individuals make decisions entirely on their own. In most cases, family members play a very vital and important role in future decisions. Sometime the stress and emotional aspects of providing care result in family caregivers making decisions on behalf of the person they are caring for. Under the stress of providing care, family caregivers may not see that discussing the care receiver’s wishes is a priority, especially if there are issues with cognition. Family caregivers don’t always know as much as they think about the care recipient’s needs and preferences for care and support. This uncertainty adds strain to an already stressful situation.

Research shows an increase in health and well-being of both care recipients and caregiver when difficult decisions about future care are made together. Although initial resistance is not unusual, when values and preferences are discussed both the person caring and the care recipient feel more satisfied and increases quality of life.

Most spouses, and adult children and their parents, respond positively to a conversation that focuses on values and preferences for care and involves planning for the future.

Research also shows that caregivers gain more satisfaction if everyday care matches the care receiver’s values and preferences. Both the one who is ill and the one who provides care seek what is in the other’s best interests.

SO DON’T FORGET ABOUT L.O.V.E.

When my father had his first of three strokes, a defining moment in how he was cared for is forever etched in my memory. We were having a family dinner and, wanting to be helpful, I took the liberty to cut Dad’s meat in small pieces so that he wouldn’t have to struggle with one hand.

Furious, he said, “Parents cut up their food for children, not the other way around. Don’t do that again!”

My feelings were hurt and I walked out of the room muttering, “I was only trying to help, Dad.”

A half hour later, Dad opened the door to the porch waving his white handkerchief. Under his arm, was a bag of peanut M & Ms – my favorite. He smiled and said, “Truce?”

Dipping into the bag of chocolate, Dad spoke about the paradox of accepting help. “On one hand, I feel this immense sense of pride and love that my daughter is so caring and willing to help. And then I feel this incredible wave of anger and resentment towards you for having to help me.”

As Dad struggled to cope with staggering losses — multiple strokes, an inability to work as a lawyer, loss in physical strength and energy, he also became acutely aware of the “burden” he was placing on his family. Doing his best from slipping off the rope, he tied a knot and hung on to what he did have — independence and control.

It’s important to remember that aging parents receiving care are experiencing their own roller coaster of emotions — knowing that they need help but resisting for fear of losing control and independence, feelings of uselessness and being a burden on the family, and anger and resentment regarding the aging process.

Think L.O.V.E.

L – Listen and Only Listen.

By that I mean, turn off your inner voice and do not pass judgment about what they say. As difficult as it may be, just listen. This is often a big step in gaining their confidence so they may tell you more.

O – Omit the Advice.

There is one thing most experts agree on — imposing your way of thinking or giving unsolicited advice will yield undesirable results. In not so diplomatic terms, you’ll tick off your loved ones and they’ll probably dig their heels in further. Although we don’t mean to, when offering advice, we inadvertently hold the person we are caring for unable or incompetent to make decisions. We take away their control and independence.

V – Validate and Then Ask Questions.

Rephrase and repeat what you hear so that they know you heard them. This then allows you to ask questions. You may not agree with what they are saying, or perhaps you feel they are making the wrong decision.

Asking questions and asking for details allows everyone to think through the response. For instance, you might wish to ask questions such as:

• “What are the advantages and disadvantages of using a home meal program versus having the children cook?”
• “If you don’t sell the house, will there be any possible long-term effects?”
• “Mom, if you move to Toronto, how would that affect the family?”
This approach allows the person you are caring for to be directing their care and decisions in an open and non-judgmental manner.

E – Empathize.

Put yourself in their shoes and think to yourself, “If I were Dad and the effects of the stroke made reading difficult, how would I feel?” Your goal is to understand how they are feeling and being able to support them by saying things like, “You must feel so frustrated by your stroke. I know how much you love to read Dad.”

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“You are amazing! What I tried to do in 2 months, you did in 1 week. You’ve helped us navigate the system, made sense of Mom’s disease, and gave back her independence and control. Thank you for making such a difference in Mom’s life and giving us, her family, complete peace of mind.”

– Mike G., Nanaimo, BC

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