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Becoming an Informed Caregiver

This article is based on a conversation by Kim Hegwood, managing attorney of Hegwood Law Group, and Eddie Orum, who is a family caregiver and volunteer for AARP. For the full conversation on this topic, view the Life Happens podcast episode with Kim and Eddie here.

For some caregivers, the role of caring for a loved one is not always a choice. For others, it is expected that family members will care for declining loved ones. Eddie Orum came to be a caregiver through both ways, as he grew up in a family caregiving culture beginning when his grandmother was moved into his family home. His great aunt was also moved in during her last years. In addition to this, his other grandmother often brought in troubled teenagers as Eddie was growing up. Eddie says, “I didn’t really think about those kinds of cultural events, but once I became a caregiver and began to reflect, I saw how it all made sense.”

Through his caregiving journey, Eddie had a lot to learn to ensure he was helping his loved ones the right way. He had to learn about the legal issues that often occur during our golden years, what documents to have in place, and how to be prepared. Once his aunt moved in, Eddie also learned a lot about cognitive issues – he says, “I had to learn that my reality is not the priority, but her reality was to become my priority.” Eddie learned a lot by joining AARP and having the opportunity to meet other caregivers, especially as he attends conferences that are offered in the elder community.

 

The Importance of Being an Educated Caregiver

Eddie explains the importance of caregivers getting educated:

“I think it’s extremely important. I came to the table thinking that I have been an educator, I worked with at-risk students, I worked in the community. I would have assumed that I had lots of information that would be helpful. But as I began working with AARP and going through the prepare-to-care information, I learned that I was doing several things not as efficiently as I could have. But you must take care of yourself, and part of taking care of yourself to be a good caregiver is to make sure you understand what’s happening. Because again, it’s not my reality. I am a very reality-oriented kind of person – I am very factual and I want things to be in order. And I have learned through caregiving that things are not always in order and I must be okay with that. And in order to be okay with that, I must understand why these things are happening and what the next step is.”

It is very important for caregivers to understand what caregiving is truly like – and what to expect. Caregivers need reminders to take care of themselves, get enough rest, and have fun occasionally. Eddie tells of a time he was leading a presentation and discussing the five steps of self-care and realizing that he was not taking care of himself. As a part of his self-care, he reached out to a therapist that he can have ongoing conversations with.

Kim explains that, for many caregivers, it is like a snowball effect. Once things begin, they keep progressing, and caregivers do not realize that they have reached a critical point. It typically comes to a head when caregivers realize their exhaustion and stress, and at that point, it is hard to know what to do.

 

How to Have the Difficult Conversation

Eddie explains that the first step that AARP shares for caregiving is actually preparing to have the conversation. It is important to figure out when the right time to have the conversation may be. In Eddie’s situation, his mother had a car wreck. Months later, she was thanking him for not asking her to stop driving, and he realized that specific time may not be right for discussing her need for care. When Eddie determined the right time to have the conversation with his mother, it became a difficult conversation. Eddie says, “The women in my family are very strong, very independent, very proactive, and have always done it well.” Eddie began driving his mother and offering to be there for her, which she liked. Then, his mother had another accident, and that allowed the two to have a conversation about her driving.

The conversation can come in many forms, and it is important to consider the type of relationship you have, where you could have the conversation, and who could be the best person to lead the conversation. Sometimes, it may be best to get a faith leader or a good friend to conduct the conversation with you.

Eddie also had to have the conversation with his aunt, who began experiencing issues and was not happy where she was. Eddie realized, “She was actually being assisted and her issues were being covered up, until I was asked to come visit her by her best friend, Joan.” Many of Eddie’s father’s friends also notified him of what they were seeing in his aunt. Eddie planned on scheduling an assessment for his aunt in Houston, as his aunt wanted to prove that there were no issues of concern. She volunteered to take an assessment in her hometown and that assessment showed enough issues for Eddie to begin the conversation with her. Initially, Eddie had met with her general practitioner who referred them to a neurologist, who conducted the three main tests they needed. Luckily, his aunt had been tested years prior, so Eddie was able to keep notes on her cognitive abilities. When the time came to ask his aunt to move into his home, Eddie had the notes, telephone numbers, documentation, and he had worked with attorneys, which allowed him to have all the information he needed.

 

How AARP Can Help

Kim asks Eddie, “Do you think that the work you are doing with AARP has made you a better caregiver?”

Eddie answers, “It has made me an extremely better caregiver in that we actually have resources that you can take a look at and actually learn from. There are other elder care resources in the community that I attend, and all of this has come from being a volunteer with AARP and looking at their resources. Most people perceive AARP as being an insurance company or in my case, maybe a travel company. But there are so many resources within AARP that you can take advantage of from travel to caregiving to legal information. I would not be here today if not for AARP, especially regarding the legal information they have given me about powers of attorney and how to make sure that the trust and wills are in order.”

Kim asks, “Do you find that you are having more difficult conversations? Has AARP or your education helped you with these difficult conversations?”

Eddie replies, “I learned to be extremely courageous because of my current experiences, to the extent that I have my children on my care team. Of course, my hidden agenda is to prepare them with what is going on now, so in the event that they need to have those conversations with me, they are prepared. And I now have those AARP resources that I can not only take advantage of, but I can use to prepare others. The conversations become easier once you have the information, knowledge, and skills to do it.”

 

Eddie’s Experience as a Caregiver

Kim asks, “Do you find that caregiving has been a rewarding experience for you? Or is it something that you feel you were compelled to do?”

Eddie says, “Kim, it’s certainly something that is rewarding to me because I am caring for people that I truly care about. I am caring for people who were immensely important in my growth. As an example, I spent my summers with my aunt and uncle, and it’s kind of interesting now that I remember that when I was in junior high, they asked me to be the trustee of their trust in the event that something happened to their children. And I kind of see now that I was always prepared for that.”

“I didn’t think about any of those things when I became a caregiver, but now I find it very rewarding because I was simply raised to do these things. In fact, my father was a very strong, compassionate male who had several conversations with me about the role of men and also helping to take care of their parents. When my grandmother was sick, it was assumed that my aunt should be the one to care for her. And my father said no, it is both of our responsibilities. When you look at my personal case, I have a sister, yet I am the caregiver for my aunt. So, I was fortunate to be raised in a home that had flexible roles – very strong and progressive.”

Kim adds, “Well, that is amazing. With your experience and training, how do you address the situation when there is one child doing the caregiving and the others won’t help?”

Eddie explains, “The first thing I would say is that it is not always the family who should be the ones giving the care. If you are leading a team, you have friends and neighbors who have always been important. You have different roles of people you know – in my case, the faith leaders in the church and my mother’s best friends that I grew up with. It’s important to look at the relationships that the care receiver has with different people. You should not make the assumption that it should be just my family’s responsibility.”

 

To contact Eddie Orum and AARP, visit AARP.org/caregiving or call their English phone at (877) 333-5885 or Spanish phone at (888) 971-2013.

At Hegwood Law Group, we meet with many caregivers to discuss long-term care planning for their loved ones. For assistance getting your loved one’s legal documents in place, call our office at (281) 218-0880 or contact us here.

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