WellMed Charitable Foundation hosted the San Antonio Caregiver Summit 2015 on Nov. 13 at the Whitley Theological Center in San Antonio.

 

Tam Cumming, Gerontologist, “Untangling Alzheimer’s”

Carol Levine, Director of the United Hospital Fund, Families and Health Care Project.

Carol Bertsch, Attorney, “Legal Issues for Caregivers”

Dr. Roberta Jones, Psychiatrist, “Running the Race – Surviving the Pace”

I’m fortunate to have a group of relatives who are in their 80’s and 90’s. They are our family treasures, and I recently had the opportunity to spend some time with them. All of them have paid or family caregivers. They live in nursing homes, assisted living, and in their family homes. So November, the month we recognize and honor caregivers, demands more than lip service in my book. It is personal. I am a caregiver, and my loved ones rely on caregivers at this stage of their lives.

We just held the 2015 WellMed Charitable Foundation Caregiver Summit celebrating caregiver month with nearly 260 caregivers and professionals attending. Our keynote speaker was Carol Levine, author and recognized caregiving expert from the United Hospital Fund. She conducts research and makes policy recommendations on caregiving.

Carol said some of our notions of caregiving in the good old days, where families took care of their own families, are a bit of a myth. Women of color and poor families often had to work outside the home, working as paid caregivers for others while trying to support their families. This is still true today.

Carol also talked about how caregiving used to take place behind the scenes, largely invisible to the public. Luckily, caregiving is coming out into the open. The costs of caregiving can deplete the finances of the person being cared for as well as the family member who provides the care. Family members are being asked to provide care that nurses used to provide, taking on complex medication management, wound care, and more.

The country is just starting to experience the aging of the baby boomers with their multiple chronic conditions, lack of savings, and inability to access a comprehensive system of long-term services and supports, because it doesn’t exist.

Caregivers are asked to take on so much and the cost is so high. And caregiving impacts most of us at some point in our lives.

During Caregiver Month, we won’t forget the rewards as well. We balance the universe when we care for someone else who used to care for us. Giving back is its own reward. We benefit as a society from the deep humanity of finding value in caring for other people who are sick, frail and vulnerable.

Caregiving may only be recognized one month out of the year, but it takes place every day as it has for generations. Some things haven’t changed at all. But some things are changing rapidly with advances in technology, restructuring of the healthcare system, and efforts to allow even more people to age in place in their own communities as the old paradigm for hospitals and skilled nursing facilities is challenged.

Today, we say thank you to all of the family caregivers and paid caregivers. We know your contributions. We are working to change the world of caregiving for the better. And we will continue to try to do more to help you along the way.

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.

Communication is complicated. It can include the ability to speak, the ability to hear, and the ability to understand the words that were said. Think of the husband who lost his ability to speak in a stroke; the mother with throat cancer; the father who has grown deaf over the years. 

I was staying with my own mother recently, who now has Alzheimer’s, and she is helping me rediscover the art of communication. One of the great ironies of growing older is that we can have multiple challenges going on at the same time. On this occasion, her hearing aid had accidentally been washed, and was no longer working. She already has a hard time understanding what words mean, and this made it even harder.

It’s probably best in any situation to be in the same room with the person with whom we’re communicating, facing them and speaking clearly. With a broken hearing aid, it became especially important.

It soon became apparent that she was queuing off of my actions. This simply means that she was watching me to try to figure out what to do. She wouldn’t eat unless I sat down to eat as well. She didn’t get ready for bed until I put on my pajamas too. This isn’t unusual. We all do a certain amount of watching others to make sure we are doing the right thing. We do this at school by watching the other children, how they dress, determining what is considered “cool.” For someone who is confused on many levels, watching others is their best tool for coping in their environment.

But it’s important to realize that even this type of communication is a two-way street. I learned from noted geriatric psychiatrist Dr. Nestor Praderio that I needed to watch her actions, and try to get the meaning behind her words, as well. It’s like the time my mother-in-law, who also had Alzheimer’s, told us that she was going to have 92 babies as she shyly patted her stomach. She had gall stones. She knew something was different and painful, and this was her interpretation. Of course, we didn’t realize what she meant until she needed immediate treatment. By that time, we felt horrible that we had missed the clues she was giving us.

This time, I was better prepared. When my mom asked me what time it was over and over again, she was really wondering what she was supposed to be doing. When she asked me how long it would be until the rest of her family returned from vacation, she was communicating that she was worried that perhaps her family wasn’t coming back. We had hidden conversations that we both had to decipher. Perhaps this is what she was saying to me:

“When are they coming home?”……… “I’m worried. I don’t see the people I recognize.”

“You have so many things.”………. “All of the clutter on the counters and dresser confuses me. There are too many things to look at, and too many choices.”

“I don’t want to take a bath.”…… “I get cold unless the room is warm. I don’t want the water too hot or too cold.”

“Do you want a cookie?”……”I want a cookie. I’m hungry.”

“Where did you learn to do that?”…….”I used to know how to do that.”

“No! I don’t want to.”……..”I can’t remember how.”

“Sometimes my brain does funny things.”……..”I know something is wrong with me.”

“Are you my sister or my daughter?”…….”I know you are family, and you are someone close to me.”

“I love you.”…………”I need to feel loved.”

It was at these times that the most basic communication worked the best – a smile and hug …. and perhaps one of those cookies.

Carol Zernial is Vice President of Community Relations for WellMed Medical Management and Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.

The prevalence and sheer number of prescriptions written by doctors for highly addictive opioids in the US is alarming. Painkillers such as Oxycontin, Demerol and Percocet are made readily available for anything from a toothache to post-surgical pain management.

I am not denouncing pain management or saying that there is no value in this category of drugs; I simply believe that one should be knowledgeable about the fact that these are narcotics and that those who care for loved ones prone to addictive behavior may want to avoid them, if at all possible.

It is more important now than ever before for caregivers of older adults to know what is being prescribed to their loved ones and what potential problems may arise. Caregivers should always ask if there is an alternative, non-addictive medication that can be prescribed instead of an opioid. In some instances, the use of an opioid is called for, in which case the lowest possible dose should be administered at first, until an appropriate level of pain relief is established. This is much easier on the patient and the caregiver in the long run.

Please note that those who are in recovery from addiction to alcohol or prescription drugs should have these medications monitored closely. Many will do this of their own accord; some will see it as a free high. Also, make sure that these drugs are not accessible to children or other household members who may be prone to “experiment” or already have an addiction problem.

The generic names of these most commonly prescribed drugs include fentanyl, oxycodone, oxymorphone, hydrocodone, hydromorphone and buprenorphine. This trend is causing many of our loved ones to inadvertently become addicted to drugs. These “accidental addicts” may develop a tolerance over time, wanting to take them more often or in higher doses. Not everyone who takes opioids will become addicted to them. Many people are able to take them as directed, even recreationally, and stop without consequence.

You may see no signs of addiction until after your loved one is taken off the drug. You may want to consult your doctor about how to lower a drug’s dosage over a period of time to allow the body to wean itself off of the medication completely.

If addicted, when the prescription runs out, your loved one may exhibit any number of symptoms, which vary for each individual. Irritability, weight loss, mood swings, headaches, changes in normal behavior, isolation, etc. could be a legitimate cause for concern. If addiction is the culprit, detoxification treatment may be called for. Even then, a true addict may relapse, continuing to crave the drug and its effects. In extreme cases, an addict will find a way to acquire the drug, going to extraordinary lengths to do so.

The role of palliative care is to address the discomfort, symptoms and stress of serious illness and curative care. Up until now, addiction treatment and counseling has not been included in the category of palliative care, but perhaps it should be.

A caregiver recently told me that she was going to take small steps every day, and hope she’s doing the right thing. She had a long list of things that had to be accomplished, and she felt overwhelmed.

This reminded me of the movie, What About Bob. Bill Murray stars as Bob – a man with obsessive compulsive disorder who can’t even leave his apartment because he’s afraid he’ll spontaneously explode.

We know that feeling.

Richard Dreyfuss stars as a therapist who inherits Bob from the previous therapist, one who has obviously run as far away from Bob as possible. The new therapist has just written a book called Baby Steps. The movie then shows Bob as he doggedly uses “baby steps” to get to his new therapist. Once he gets out, he realizes that the baby steps are working, and they ultimately change his life. He goes from a man who can’t function to a confident man who seems to be taking over his psychologist’s successful life. The more Bob improves, the more the therapist devolves and becomes dysfunctional. Bob doesn’t need him anymore. Baby steps become Bob’s mantra.

So picture a baby who is just walking for the first time. He takes baby steps around the coffee table. Eventually, he stops cruising the furniture, lets go and starts taking baby steps across the room. This opens up an entirely new world. He’s no longer crawling, looking at what’s stuck under tables and chairs where the lamp never shines with his face skimming the lint, crumbs and goodies in the carpet. His eyes are lifted to the sparkly and breakable objects on the table, the bright colors of the couch cushions, and the sunbeams inviting him to step out of the sliding glass door. All it took was baby steps – even a baby can do it.

Sometimes, we as caregivers are trapped in our own thinking just like Bob. Our perceptions of ourselves and our loved ones are pessimistic and perhaps even a little over the edge. If we allow someone else to care for our loved one, one of us will surely explode. If we leave our house, we might step on a crack that breaks our mother’s back. We don’t know how to function outside of our caregiving role. Let’s face it – there might not be a lot of difference between Bob the agoraphobic who never leaves his home, doesn’t have any friends, and is obsessed with one person – and some of us.

But what if we take baby steps too? Baby steps means that we stop crawling around and start walking upright, standing on our own two feet. We’ll have a different perspective. Baby steps aren’t a big commitment. They are small changes that take us in a different direction. We’re just doing a few little steps at time, so we don’t tire our little legs out or run out of steam. And we can sit back down at any time.

We can accomplish great things using small, baby steps. In the movie, Bob changes his entire life, one baby step at a time.

Baby steps could be exactly what we need in our lives. If we’re overwhelmed, let’s break down what we have to do into smaller pieces – and get through one thing at a time. If we’re feeling stuck or can’t really feel ourselves at all, let’s take baby steps towards self-recovery. And baby steps can work for our loved one who we’re caring for as well. There must be something shiny out there that we’d all like to see close up. And even if this new direction isn’t right for us or our loved one, no worries; our baby steps haven’t taken us too far down the road.

Carol Zernial is Vice President of Community Relations for WellMed Medical Management and Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.