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Caregiving

What I’ve Learned From the ‘Savvy Caregiver’ Course

Lessons on caring for a loved one with dementia


(Lourdes Ballesteros uses a pen name to protect the confidentiality of her husband’s health information.)

As the oldest daughter in a Cuban family with an extended-family tradition, I was raised with “unofficial” training as a caregiver. In other words, I was expected to take care of other family members, and, for the most part, I am comfortable in the role.

However, also inherent in this lesson is a lack of self-care — it’s a problem common among people caring for others. But I reject that. As I hear regularly from my Latino doctor: “You have to take care of yourself,” and I agree.

Now in my early 60s, I need specialized caregiving training to reach two goals: to become a great caregiver to my husband and to become a similar one to myself. Without the attitude propelling me to look after myself, I will flounder.

My skills will improve and I will gain confidence in them — that is, if I apply what I’ve learned.

I married an older American man. Three years ago, concerned about memory loss, he sought a neurologist. The diagnosis is mild cognitive impairment, which has been stable for three years.

Preparing for the Future

My husband enjoys attending a Council on Aging (COA) memory enhancement class in the Florida city where we live. A fellow caregiver whose father attends the same class alerted me to a new course offered by the COA called “Savvy Caregiver.”

The six-week course — developed in 2008 by five specialists at the University of Minnesota — is for those whose loved ones are affected by dementia. Each weekly class is two hours long.

I’m taking the course, and from the initial session, I’ve already learned where I need to make changes to ensure my well-being in my new job. Here are some of the most important lessons I’ve learned so far:

Ask for Help

As a caregiver, I am used to solo problem-solving or helping others. Receiving help is alien. The mainstream cultural tendency is DYI. More and more, we are reluctant to ask our neighbors to borrow a tool or give us a ride. As a result, it’s harder to put aside pride in self-sufficiency to ask for help.

A fellow church member offered to pick up my husband and take him to lunch so I could have a few hours alone at home, and I accepted. I told the friend that my husband may be confused by the menu, and suggested that the man focus on conversations involving long-term memory. I was hoping this advice would lead to a more pleasant experience for both men, and it did. They will meet again and include another friend.

Another church friend volunteers weekly at a family retail business. I asked if she would mind having my husband volunteer alongside her twice a month. “That would be good,” she said, “and we can go to lunch, too.” I cried in the sanctuary with relief — my husband’s boredom alleviated; his social connections improved. He’d have a good time with his friend. And I would have a few hours alone in our home.

I also learned to look for good matches with friends and activities. In each case, a relationship between my husband and his friends, as well as the proposed activities, were in place, and they are key to a fruitful experience.

Savvy Caregivers Remain Flexible

Fortunately, I returned to the practice of yoga a year ago. Not only is my body more flexible, I trust that my mind is, too. Letting go of what once was and getting to know what is new in my husband and myself is a familiar practice now.

Life would be easier if I applied this formula to other relationships. Caregivers with controlling dispositions are bound to have a more difficult time adapting and re-adapting to changes inherent to a progressive disease. Conditions change; new strategies will emerge.

Get Ready to Learn More About Yourself

The workshop creators wrote, “Caregivers learn more about themselves as they work with their family members.” This statement is attractive. During the course of a 20-year marriage, I have found the institution provides a framework for learning about myself. No matter how reflective I was when I lived alone, I could not have learned certain truths without living with another person. Conversations are held and areas of improvement pointed out. New commitments emerge.

During my role as primary caregiver, I will learn which ways are effective and which are not. I will identify situations I am not comfortable with. My skills will improve and I will gain confidence in them — that is, if I apply what I have learned.

Look to People Who Share Your Values

“The Savvy Caregiver’s Manual” says, “persons from disadvantaged groups with dementia who are admitted to nursing homes are admitted at later stages of the disease … Some research indicates that it is strong family structure and values in these groups that leads families to keep their loved ones home longer.”

Social wealth forms part of the value system of people who come from cultures where the collective is valued more than the individual. Hispanics are included in this, but so are many rural families, particularly in the American South.

In my case, my doctor is Hispanic. He is aware of the cultural tendency of people to almost defiantly want to keep loved ones at home. He will be vocal when he sees that caregiving is affecting my health. The fact that my doctor and I share a cultural heritage is important because he knows how difficult it will be for me to seek care for my husband outside the realm of family and trusted friends.

I have already employed some of the Savvy Caregiver recommendations. My husband’s boredom is eased as new opportunities arise for volunteer work and activities with friends. I have gained a few more hours of time alone. I am slowly improving my diet and exercise regime. And, apart from asking others for help, I am continuing the practice of daily meditation — my best form of prayer.

By Lourdes Ballesteros
Lourdes Ballesteros uses a pen name in order to write confidentially about her husband's medical condition and their journey together. She is a freelance writer who lives in Florida.

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