Category Archives: Dementia Live

The Art of Caregiving: Going at the Right Pace

Caregiving has been defined as the willingness to go at another person’s pace. Just like a pace car in auto racing, there is the person who sets the pace in caring, and the person who follows along. The pace car in racing sets the tempo of the other cars before the race officially begins. The person setting the pace in caregiving can be the care receiver or the caregiver. Ideally, a care receiver with dementia should set the pace, with the caregiver following.

Tell-tale Signs of Moving Too Fast

A care receiver with dementia may not want to do what is needed, such as eat breakfast or go to the doctor. The care receiver will show signals and cues to relay their feelings. For example, the care receiver may become still, unwilling to move. The care receiver may become agitated. There may be repeated questions and reluctance. This is especially true if the caregiver is in a hurry.  Attempting to get a care receiver to move at a quicker pace is not helpful or beneficial. Also, a raised voice or attempting to physically move the care receiver along at your pace will not work.

A person with dementia will respond to your cues and match your feelings. If you start to get stressed out, so will your care receiver. When things are not progressing, it is time to slow down the pace. That can mean acknowledging the care receiver’s feelings and providing support. It can also mean listening and playing detective to determine the feelings behind the behavior.

What’s Your Caregiving Pace?

It also helps if you are pacing yourself as a caregiver. Are you taking on too much in your care receiver’s care? Who else can provide help? Sometimes a person with dementia responds better to one person than another. Finding another person who is better suited to take the care receiver to a doctor appointment can be helpful.  If having someone come to the house to be with your care receiver to look at photos for reminiscence, to share a meal, or just be there, you can take a break.

Just like a pace car needs to have oil changes, full tires, and an engine that works, it takes maintenance and care to provide care for your care receiver and yourself. Both need care and support. When you are attempting to work with your care receiver, do some diagnostics to check where your care receiver is. Are they tired? Could they be hungry or thirsty? Are they in pain? What are their triggers? What are yours? By considering these, you can help your care receiver and yourself in the caregiving race.

It may feel like you are constantly racing. Despite the need to get everything done, take time to slow down, even if it’s for a few minutes during the day at different times. Take care of yourself to take care of others at a pace that works for you and your care receiver.

Kathy Dreyer, Ph.D., is a Grant Manager 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 Trauma of Relocation for People with Dementia

 

 

A sudden relocation from home for a person with dementia can be traumatic.

My husband and I have made the decision to right-size our lives and sell our house of 23 years. For many years now, I have anticipated this moment wondering how I would feel.   Surprisingly, it wasn’t a hard decision to make.  However, I recognize that moving day could be a different story.

The decision to relocate is one we made being of sound mind and body.  As overwhelmed as I sometimes feel about our move, it must pale in comparison to what people with dementia feel when they are moved to a different environment.

Easing the Trauma of Relocation

My husband and I will adapt to our new surroundings.  I will find a place for all of our things and make our new house into our home.  The people I love most will be with me,  including my fur-babies.  I’ll drive to visit my friends and attend the same church.  All will be right in our world.

This mile-marker in my life makes me think long and hard about what moving day must be like for someone with dementia.  I can’t even imagine.  The sudden loss of leaving the familiar and the people you love must be horrifying.

Stop and think for a moment how you would feel if someone walked into your home and said that you had to leave for a new place that you had not chosen for yourself.

Imagine your behavior.  Would you be crying, screaming, punching, kicking?

The AGE-u-cate Training Institute program Compassionate Touch begins with looking at life through the lens of someone with dementia.   We discuss the grief and loss that often accompanies a person with dementia when they move into a long term care facility.

Realizing that people with dementia communicate with us through their behaviors is a pivotal moment in Compassionate Touch and Dementia Live Training.

So how can we ease a transition into a long term care facility for someone with dementia?  Here are a few tips:

    • If possible, set up their new space with familiar items prior to move-in day.
    • Remain positive and keep your personal emotions in check.
    • Minimize chaos on move-in day by limiting the number of family members present to no more than two.
    • Allow the staff to immediately begin bonding with your loved one.
    • Refrain from prolonged day-long visits until your loved one is settled in and comfortable.
    • When your loved one says, “Take me home” don’t say, “this is your new home.”  Rather, “I understand how hard this is, and I love you.”

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.  In addition, 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.

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.