Category Archives: The Family Caregiver

Becoming a Caregiver: Knowing the Tipping Points and Accepting Your Role as a Caregiver

Rosalyn Carter once noted that there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. Her quote is an accurate assessment of how being a caregiver is a part of our lives, in one way or another. There is a tipping point for becoming a caregiver, and each person can have a different experience with caregiving. Caregiving can be long-term or short-term, depending on the care recipient.

So how do you know you have become a caregiver? Next Avenue published an article on what turns us into caregivers. The article focuses on physical, safety, and behavioral challenges that cause us to take on the caregiving role. Is it important to acknowledge your role as a caregiver? The article also notes that knowing your role as a caregiver can help you understand when more help is needed, such as full-time, professional care.

Knowing and accepting your caregiving role can help you give yourself permission to seek additional help for your care receiver, and more support for you. Accepting that other people can do things for your care receiver that you cannot do, and finding that help, can be liberating. The process for realizing more help is needed can take a while, or it can be something that happens in a moment. A few years ago, one of my relatives needed assistance with bathing. He had no other family or potential caregivers available to provide this care. Even though I was his primary caregiver, I knew that bathing was something I just could not do, and I do not think he would have wanted me to take on that role. Fortunately, he was able to obtain home health and got the care he needed. I was relieved that he accepted that care, and that it was someone else providing it.

While caregiving support can vary, such as taking someone to run errands, assisting with financial tasks, or managing behavioral challenges, all caregivers provide a needed service, and sometimes need more than one caregiver to give all the help needed. Whether you accept your role or not, it is valuable and necessary.
If you still don’t know for sure that you are a caregiver, Jeff Foxworthy has something to add in this video.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

Caregiving during the holidays: Acceptance and support

As Julie Boggess remarked in her recent blog, informal caregivers and the care they provide for care recipients represents a substantial part of the long-term care support system. Caring for a loved one with dementia is challenging and can be difficult. Both stress and burnout in caregiving are all too common, as Pam Brandon’s blog notes. This is especially true during the holiday season. The extra demands that accompany this time of year make getting the regular things done more challenging, and the expectations for getting everything done can be overwhelming.

With the holiday season upon us, how can caregivers reduce stress and the potential for burnout? There are several good resources that provide strategies. AARP offers 10 Tips for Caregivers During the Holidays. These tips provide suggestions for managing holiday activities while being a caregiver. Also, the National Institute on Aging provides hints for making the holidays more enjoyable.

One of the best ways to prepare for the additional stress the holidays bring is to manage expectations. Be prepared to discuss changes with people who may not have seen the family member in several months. It is good to prepare for the potential questions about the care being offered and medical management. Questions and offers of advice may not be helpful, but remember you are doing the best you can with the information you have now.

When my mom was moved into the nursing home, sharing her care was difficult. After working with the certified nursing assistants to help them understand who my mom had been, and what her preferences were, sharing her care was a relief. It was also beneficial to see people caring for my mom who only knew her as she was at that time. Seeing how they worked with her helped me come to terms with who she had become. Sometimes it may take seeing a person through someone else’s eyes to accept where you and the person are. And acceptance can bring relief and peace, which is always beneficial.

Overall, remember to be patient with yourself and the person you are caring for. Do your best to accept what others can offer. Some people have the capacity to give in certain ways, but it may not be in the way that you would prefer. Let go of what you can. Acceptance can bring relief, whether it is in accepting help or accepting changes.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

The Importance of Education for Informal Caregivers

Members of the First United Methodist Church in Arlington Heights, IL attend an Eldercare Educational Program about Understanding the Continuum of Eldercare.

Today, family members and other private individuals provide the bulk of care for frail older adults. According to The National Alliance for Caregiving, approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months.  The assigned dollar value of unpaid caregiving is a staggering $470 billion.

Informal caregivers are a critical link in the system of eldercare. The care and support that is provided delays, and may even prevent the need for institutional care. Equally, we must acknowledge the financial impact that the informal caregiving system has on our nation. Consider the increased stress on the Medicaid system without these caregivers.

The American Association of Retired Persons offers a terrific directory of resources available to family caregivers. There are many agencies, both public and private, that exist to provide resources for family caregivers. To that end, caregivers can access website links, pamphlets, resource guides, and a plethora of other informational sources.

Importance of Education for Caregivers

Yet, with all of these resources, so many family caregivers still feel lost and overwhelmed. I have observed many caregivers who don’t know what they don’t know.  In addition, it is paralyzing for them to know where to start.

Caregiver education should be a more robust component of our eldercare system.  Education that leads to increased knowledge is necessary so that people can feel empowered and access the correct resources.

Caregivers need to understand the process of aging.  As astutely stated by The Age-u-cate Training Institute, it is hard to care for someone that you don’t understand.  Consequently, when caregivers feel like they are in the dark, stress, and frustration ensues.  Therefore, helping caregivers to understand what is going on will better equip them to find the right resources and ask the right questions.  Knowledge is empowering.

To list, a sample of educational topics for caregivers:

Creating opportunities to provide knowledge will increase understanding and compassion, reduce stress, and strengthen the process of caregiving.  In addition, it will improve the relationships between caregiver and receiver.

 

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  She is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

Wisdom from a Friend with Dementia

 

Seek the wisdom that can be lost under the weight of memory loss in persons living with dementia.

Dementia hit close to home for me recently. It had probably been six or so years since I had last seen a friend and former co-worker. He had fallen out of sight, and now I know why. I learned of his whereabouts and paid him a visit. It started with mild cognitive impairment that has advanced to late-mid stage dementia.

I was so glad that he recognized me. We had a wonderful conversation and reminisced about people we knew and past work projects. But, as time went on, he became lost in the conversation. He was evaluating proposals, preparing to consult, and critiquing management.

Always contemplating, analyzing, envisioning, planning. That is what this man did. The beautiful thing, he still is.  The wisdom is there when entering his reality.

Wisdom

My friend said some pretty amazing things. The first was when we were talking about purpose in life. “We all need to germinate something wonderful and wise,” he said. My friend is eager to share his wisdom, and being surrounded by people who will listen provides him purpose and quality of life.

Referring to the people who work where he lives, he said that it is just as important for him to know them as it is for them to know him. It pleases him when people call him by name. It is important to him that they know who he is, and he delights when introducing his caregivers by name.

The importance of relationships between care partners is something my friend taught others back in the day. In fact, he introduced me to David Troxel’s philosophy, “Best Friends Approach to Dementia Care.” I saw before my eyes how incredibly important that is for my friend.

It is comforting to know that my friend’s personhood, the things that make him special, are still there.  Dementia does not define him. He has long-term memories with attached feelings. He continues to teach others about dementia- both how to live with it and what it takes to provide good care with quality of life.

I asked if I could share his wisdom in a blog. He said he had to think about it and then asked what the distribution and market reach would be. Yep- always thinking.

May we always seek to know the person living with dementia, and let them know us too.  Seek their wisdom, you will learn much.

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  She is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.