Category Archives: 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

Validation in Dementia Care: Thank You, Naomi!

Validation helps caregivers step into the world of a person with dementia, creating understanding and empathy.

The most powerful communication tool I’ve learned is Validation. Created by Naomi Feil, Validation is a method of communicating with people with dementia. Stepping into the world of the elder leads to understanding, therefore easing distress.

I’ve distilled the concepts of Validation into two questions.  They help me respond to someone with dementia who is confused and distressed.  First, I ask, “What is this person’s reality at this moment?”  The answer gives me a clue into her world at the moment, and then I can be with her in her world.

Then I ask, “What is she feeling right now?”  I can’t see a motion picture of what’s going on in her mind, but there are clues about how she is feeling. What is her facial expression, body language, or voice intensity telling me?

Now comes the action part.  First, I reflect her reality and then acknowledge the feeling.

Let me illustrate with a story about a woman in a skilled nursing facility where I provided Compassionate Touch® sessions. At around four o’clock, she fretted about getting home to make supper for her family.  Pacing the hall, she asked everyone how to get back home. As time passed, the more anxious and upset she became. The staff was expected to take her to dinner at five o’clock, not an easy task when she was so determined to leave.

What is her reality?  It’s time for her to get home to make supper for her family.  In her mind, her family would be back soon, and she needed to be there for them. Now that I understood where she was at the moment, I could be with her in her world.  What is she feeling? She seemed frustrated and increasingly angry and fearful.

I walked with her, asking simple questions about her family and what they liked to eat for dinner.  I acknowledged her feelings, saying, “it’s so frustrating to be late.” I used humor, “my son thinks he will just starve if I’m five minutes late with a meal!” She nodded and laughed with me.  At one point, I reassured her with touch by gently stroking her back and holding her hand. She became more present in the immediate moment, and she let go of her fixation on getting home.

What created the shift in her was not so much what I said, but rather that she felt seen and heard, therefore, validated. We walked again, but this time to the dining room where she joined her friends for dinner!

How do you feel when someone validates you?

Ann Catlin, OTR, LMT: For twenty years, Ann led in the field of skilled touch in eldercare and hospice. She has nearly forty years’ clinical experience as an occupational and massage therapist. She created Age-u-cate’s Compassionate Touch program and now serves as a Master Trainer and training consultant.

Coping with the Emotional Toll of Moving a Parent to Assisted Living

Family caregivers need support to handle the emotional toll.

My friend Lana is on the emotional roller coaster of moving her mom to assisted living. Coupled with holiday stress, it’s taking quite a toll. Like most seniors, Lana’s mom would rather live in her own home. However, her functioning declined to the point that she fell several times, leading to multiple trips to the emergency room. Lana fretted over the decision to look for another living arrangement for her mom. Fortunately, guidelines helped identify when it was time.

Assisted living may be called for if a senior has difficulty performing tasks of daily life, such as:

  1. Basic personal care tasks, such as bathing, dressing, toileting, eating.
  2. Paying the bill, handling the mail, preparing meals, cleaning, and transportation outside the house.

Furthermore, a worsening medical condition may lead to a lack of activity, falls, incontinence, and poor nutrition, as was the case with Lana’s mom. After yet another hospitalization, it was time; however, the emotional toll has been heavy with grief, doubt, regret, and guilt.

Author Liz O’Donnell offers these strategies to ease the transition.

  1. Give it time. It takes from three to six months to adjust.
  2. Ask friends or family to help.
  3. Expect setbacks. Ups and downs are typical. Allow yourself to feel discomfort with the fact you can’t fix it.
  4. Be a good listener of your parent’s concerns and feelings.
  5. Surround your loved one in familiar belongings from home. Limit new things. The situation is all new.
  6. Advocate for your parent to help build a team. Let them know who your parent is and what her preferences are.
  7. Set boundaries. Decide what you are willing and able to do and stick with it.

Finally, Kathy Dreyer’s recent blog post offers these words of wisdom from her own experience of managing the emotional toll of moving her mom to a facility.  “Let go of what you can. Acceptance can bring relief, whether it is in accepting help or accepting changes.”

What do you believe is essential to help ease the emotional toll of moving a loved one to long term care?

Ann Catlin, OTR, LMT: For twenty years, Ann led in the field of skilled touch in eldercare and hospice. She has nearly forty years’ clinical experience as an occupational and massage therapist. She created Age-u-cate’s Compassionate Touch program and now serves as a Master Trainer and training consultant.

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