Emotions Are Normal: Understanding the Impact and Management of Emotions as a Caregiver

November is National Alzheimer’s Disease Awareness Month and in an effort to fight this debilitating disease that affects an estimated 5.7 million Americans, Chaffin Luhana LLP team members, Katherine Mayo, and Rosemary Shameer interviewed Jami Pazuchanics, the founder of Optimal Aging Advisors, a company that counsels families on geriatric care management.

What emotional impact can a dementia or Alzheimer’s diagnosis have on an individual and their family?

Typically, when someone is first diagnosed, there have already been some memory issues going on prior. They’ll begin searching for words, or “Where did I put my keys?” or “What did I come in here for?”

Over time, people learn to mask this problem. By the time we get the diagnosis of Alzheimer’s, they’ve had a lot of practice compensating for memory lapses.

They go through a grieving process, where they’re denying it. “I know I don’t really have this. I’ve been forgetful for years.” Or, “It’s just the normal thing that happens to people.”

Eventually, they come to terms with the fact that they have memory impairment. Many of them will begin to hold on and fight for what they feel are their rights.

They don’t want people thinking that they’re crazy. They don’t want people telling them what to do.

When they lose independence—for example, maybe they’re not driving as well and people are starting to tell them that they shouldn’t drive anymore—a lot of times they’ll lash out. They’ll say, “I’m not crazy.” Or,

“There’s nothing wrong with me.”

That type of response is normal. It’s a scary diagnosis. There is a stigma attached to it, sadly. There is a lot of fear and not knowing what’s down the road.

We see people attempting to hold on to their independence, and they can become a little cantankerous. They can become angry toward their loved ones.

Their loved ones, on the other hand, are needing to take over more of that person’s activities, causing the diagnosed person to lose more of their independence. The emotional component of this is vast and everyone is impacted by it.

What advice do you have for caregivers dealing with their loved one’s dementia?

Support groups can be very helpful. A lot of organizations, like the Alzheimer’s Association, will offer support groups. You’ll be in the midst of other people who are going through the same types of situations that you are.

Education is also helpful. This means educating yourself, not necessarily about the disease process itself, but how to function and live on a daily basis with someone that has this disease.

Their reality is very different from ours.

Educating yourself on how to communicate is critical.

One of the things that we coach people on is meeting their loved one where they’re at, stepping into their reality.

There’s something that we often use called distraction and redirection. Let’s say your loved one sees someone walking outside when it’s time to eat lunch.

The person with Alzheimer’s gets fixated on that person outside. They may be afraid of that person, or curious, or angry for some reason at that person, unbeknownst to everyone else.

The caregivers may get angry. “Come on Mom, it’s time to eat. Don’t worry about what’s out there.” Maybe they’ll try to guide Mom over to the table.

Mom’s mad because she wants to see what’s going on with this person outside. So she becomes a little combative.

The family member that’s trying to get Mom to eat is thinking, “Mom lashed out at me.” Or, “Mom’s mad at me.”

So you’ve got this caregiver feeling that range of emotions, not understanding why Mom is behaving this way because they’re not educated well enough on what happens.

They have to learn how to live with someone who has Alzheimer’s. They have to learn what those daily tasks mean because it’s different now.

Let’s revisit that scenario that I just gave you. Instead of getting angry, let’s do something to distract Mom in another way.

Maybe we turn on some music. Whatever we can do to get mom’s fixation off of the person outside. Maybe once we’ve gotten mom to look another way we close the curtains, so she doesn’t see outside anymore.

Once mom’s distracted from what she was fixated on, we’re going to now redirect her. “Hey Mom look, I’ve got food for you. Can I eat with you?” Whatever it takes to get her to sit down and enjoy that lunch with you.

So you’re distracting and then redirecting. That’s just one situation out of a 24-hour period of constantly having to think outside of the box of what is considered normal for the average person.

How does caregiving change throughout the course of the disease?

Dementia patients get to a point where they don’t even know that they’re impaired anymore. We work with people in all phases of Alzheimer’s,

because while you are learning a skill for today, two months from now it may not work anymore.

We don’t know what’s going on emotionally in the later phases of Alzheimer’s, because no one has been able to document what they’re experiencing. But we know that the person is still there, because every now and then we’ll get some kind of glimpse where they verify that they remember who you are.

We have had clients who would always say a specific phrase to us. Then they advance in the late stages of Alzheimer’s and lose their ability to communicate. But then that person would utter the phrase that they used to say to me years earlier.

How can caregivers process their feelings of grief, guilt, and anger?

A lot of times, group therapy with siblings works well. We encourage people to look at the strengths of each member of the family unit.

Maybe one sibling was the one who always had fun with Mom.

Maybe another was the responsible one who could get things done.

Because the person diagnosed with the disease is functioning on longer-term memory, they’re going to be able to identify that adult child based on their role in the family. So we encourage people to assign tasks in caring for that loved one that fits their role in the family.

Everyone fits in where they can. It can be a big help to the person who is bearing the brunt of the care.

Within a few months of caregiving, the person who’s bearing the brunt of the work, their blood pressure rises. They often become sick because they’re so stressed. Their well-being is critical.

It’s important for everybody to understand that this is not personal, but it’s just so hard for them to do that. That’s where the counseling and support groups can come in and help them to understand that this is not their fault.

The other thing that we tell people is, that’s still your loved one. Enjoy them. They’re still in there.

Do the things that you can do together with them. Fold the laundry together. Eat a meal together.

Let’s say your loved one used to love to play bridge. Just give them a deck of cards and sit there with them. Maybe you’re just shuffling the cards around the table or picking them up one-by-one.

Find out what they liked to do in the past and try to recreate it in a way that’s going to be something that they can enjoy. It doesn’t have to look the same. It just has to create the same enjoyment.

I think the people who work with people with Alzheimer’s are just so dedicated and loving.

They’ve got nothing to feel guilty about, but that’s something that they have to come to themselves. They come to that conclusion by having a professional help point out to them these ways that they’re helping, and ways that they’ve made a difference in that loved one’s life.

In the earlier phases, the relationships oftentimes are really strained. But as the disease progresses, the things that were said and done in those earlier phases are forgotten.

The adult child or spouse gets to be with that person in such a simple, loving, and caring way. Unlike an accident where you lose a loved one suddenly, you get the privilege and the honor of walking that journey with your loved one.

What is the goal of Optimal Aging Advisors?

Optimal Aging Advisors is a geriatric care management company. Care management as a profession had its inception back in the 1980’s.

There was a group of social workers and nurses in New York who got together. They felt that there were needs that were not being met along the spectrum a hospitalization or a facility to home, and then home back to hospitalization or facility.

At Optimal Aging Advisors, we know that aging is going to happen, and as we age and our bodies begin to fail. The quality of life is significantly impacted because one loses the ability to control one’s own environment and well-being.

Quality of life as we age becomes imperative. It’s something that can’t be compromised.

We look at 10 different life measurements. They can include functional assessment, medical assessment, social, spiritual, end-of-life, finances, and safety. This encompasses the entire person, allowing them to optimally age under their circumstances.

Successful aging happens without any negative occurrences. None of us are going to successfully age, but we can optimally age. Optimal aging means doing your best under your circumstances.

Our overall goal is to improve the quality of life, the well-being, and the autonomy of our clients. We want to let them have as much control as possible so that their quality of life and their meaningfulness can continue on.

We advocate for our clients, who are typically 55 and older. We coach families. We guide them through disease processes, like Alzheimer’s. What’s going to happen next, what you can expect in the home, some strategies that you can employ.

We are there for them 24/7. If they go to the ER, we’re there with them so that we can facilitate that conversation with the professionals, whether it’s a healthcare professional, a lawyer, or a financial fiduciary.