Category Archives: The Family Caregiver

A Special Grandparent’s Day

Lessons from an old tree.

You might be wondering why a picture of an old tree? This tree caught my attention while on a walk through a nearby forest preserve. I studied its shape, holes, splinters, and ragged edges. I didn’t know then why it captivated me so, but it did.

This tree, such as it is, a shell of itself from long ago still stands. How miraculous is this? Despite the trauma over the years, damaging winds, hail, heavy snow and ice, it still stands. Indeed, time is stamped on this tree, and its roots are weaker and deteriorated.  But it stands proudly, majestically demonstrating its resilience and strength.

I’ll call her Matilda (my grandmother’s name). Imagine the experiences she lived through and the stories she could tell. If only we had the opportunity to learn from this wise old oak. I would love to know what this forest preserve was like 50 or maybe even 100 years ago.

I speculate that sometimes Matilda had to dig deep for water and call on strength to brace against the hard times. But, she also got to bask in the glory of the nourishing sun and gentle rains and was probably thankful for the good times.  Her wisdom is unmatched in the forest, I am sure.

Matilda likely housed many critters over the years and created a safe space for them to call home. How many different species did she encounter over time? Insects, rodents, mammals, birds, canines felines, all in various sizes, shapes, and colors. Some may have taken advantage of her, but hopefully, most treated her with kindness and respect.

A Little Extra for Grandparents Day

This tree personifies grandparents for me, and that’s why I admire it so much.  I think it is true that you don’t know what you had until it is gone.  Three of my grandparents didn’t see me graduate from high school, and the last, my grandfather, died when my daughter was six years old.  She has only a faint memory of him.

It’s not too late to extend Grandparent’s day.   I know I would if I could.

I attribute my love for working with and advocating for the welfare of older adults to the loving relationship I had with both sets of grandparents. The memories I have of them all fill my heart with that longing to have just one more conversation.

Grandparents deserve to be celebrated! Congress had this right in 1978 when Jimmy Carter signed the proclamation.

If you have the good fortune to have a living grandparent, learn all you can from your beautiful, wise tree.

 

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.

Sandwich Generation Realities

The sandwich generation reality is in full force as more men and women are caught in the middle of work, raising a family, and caring for their parents.

My friends and I often contemplate how we got to this point in life so fast. It wasn’t that long ago that we talked about babies, toddlers, and teenagers. Now, we find ourselves in that sandwich generation place. Our kids are older, and so are our parents. Caught in the middle of work, young adult children’s life events, and aging parents.

The aging-brain is complex, and my friends scramble to keep ahead of the curve-ball.  There are good days, and then the bad days for no apparent reason. A solution that works one day doesn’t work the next. They work hard to anticipate and prevent the next crisis.

I am often baffled to find the right words to help my friends. It is not easy to explain-away their parent’s irrational behaviors and illogical thoughts. The guilt that my friends experience as they try and make things OK for their parents is so hard to see.  My heart aches for them because they feel like they should be doing more despite the fact that they are extraordinary caregivers.

Always Parent and Child

I know from my own experience that parents don’t wish this for their children.   Parents who once provided the caregiving are now the care-receiver, however, the roles are not reversed.  My friends know that they will always be their parent’s child, and their parent isn’t a child.

Anger can also be a factor in this turbulent time. My friend shared today that her mother yelled at her for not understanding what she is going through.  That doesn’t feel good, for sure.

The remarkable thing is the resilience that my friends demonstrate. They are grateful to still have a parent in their life.  Frustration and exacerbation are factors, but bitterness and anger are not.

So what can we do for the friends among us who are in this role of elder-caregiver?  The Alzheimer’s Association has a long list of suggestions, and here are mine.

    • Listen. Let them tell you their stories- sometimes venting is just what they need
    • Avoid issuing unsolicited advice
    • Support with words of affirmation that they are doing a good job
    • Be a friend, not an expert (my lesson)
    • A brownie delivery every once in a while doesn’t hurt!

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 to private 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.

A Reflection: The Comfort of Touch for Family at End of Life

 

Touch is is a comforting gesture for both the dying and their loved ones.

My friend Andrew shared with me his reflections on the care his family received while his mother was in the hospital dying. He poured out his heart on paper to discuss how frequent expressive touch was a comfort to his mother, and himself.

He writes, “We would kiss her forehead, touch her shoulder or hold her hand with varied responses. Holding her hand was the clearest communication and the best way to tell if she was with us or not. Most days she would squeeze our hands or lift them to her face for a kiss. At times, these actions were silent, and other times accompanied by grunts or whispers or even an attempt to speak.”

“The staff were lovely and compassionate people who understood her needs, but also our needs as family members. I saw many nurses and aides greet Mom on a good day with a hug or try to wake her gently with a hand on her shoulder, but there were also hugs for us.”

“We craved something to do, some way to comfort her and let her know she wasn’t alone. These small gestures of touch were all we had in her final days and the only way we could communicate with her.”

Touch:  A Final Connection

“In the end, she no longer responded to touch because hospice was doing their job correctly. We will never know what she understood and felt in those precious moments, so we continued to touch her. That small amount of physical contact was as much a comfort to us as we hoped for her.”

“Holding her hand, the hand that comforted me as a child, was again comforting me as an adult.”

Andrew’s words flew off the page at me because it gets to the heart of the work we do at the AGE-u-cate Training Institute with Compassionate Touch training. Touch is the first sense that develops in the womb and is a fundamental human need throughout our life course.  Through touch, care-giving professionals who work with families of dying persons can positively impact end-of-life care for both patient and family.

Thank you, Andrew, for reminding us of the impact that touch can have on the living, and the dying.

 

Shared by permission from Andrew Azzarello, a person with a personal and professional passion for eldercare.  Andrew continues caregiving responsibilities for his father and is the former Director of Human Resources for two aging services organizations.

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 to private 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.

What is Huntington’s Disease and Understanding it’s link to Alzheimer’s

May is Huntington’s Disease (HD) Awareness Month, sponsored by the Huntington’s Disease Society of America.   This often unknown and misunderstood disease and it’s link to Alzheimer’s  symptoms is worthy of discussion.   Let’s delve into understanding Huntington’s Disease.

According to the Huntington’s Disease Society of America,  HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.  It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.  HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.  Today, there are approximately 30,000 symptomatic American and more than 200,000 at-risk of inheriting the disease.

Symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s-simultaneously.  Symptoms usually appear between the ages of 30 to 50 and worsen over a 10 to 25-year period.  Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications.  Everyone has the gene that causes HD, but only those that inherit the expansion of the gene will develop HD and perhaps pass it on to each of their children.  Every person who inherits the expanded HD gene will eventually develop the disease.  Over time, HD affects the individual’s ability to reason, walk and speak.

HD Symptom’s include:

  • Personality changes, mood swings and depression
  • Forgetfulness and impaired judgment
  • Unsteady gait and involuntary movements
  • Slurred speech, difficulty in swallowing and weight loss

The symptomatic links to Alzheimer’s disease or other forms of dementia include personality changes, mood swings, depression, forgetfulness, and impaired judgment.  The complex symptoms of HD are manifested in the changes of motor, cognitive and psychiatric symptoms.   These symptoms begin insidiously and progress over many years, until the death of the individual.  The average length of survival after clinical diagnosis is typically 10 -20 years, but some people have lived thirty or forty years with the disease.  Late stage HD can last up to a decade or more.

Caregivers of persons with Huntington’s Disease need education, support, and resources.  State organizations of the Huntington’s Disease of America provide a means for caregivers and persons living with HD to come together.  I’ve been honored to speak at several of the Texas conferences and I will tell you that learning about this disease and the challenges they face has enlightened me to the fact that awareness of this disease is greatly needed by society.  I encourage our readers to join the HDSA social media campaign #LetsTalkAboutHD.

Like Alzheimer’s, families of persons with HD need tools to cope, a great understanding of their challenges, and a greater sense of empathy.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the Dementia Live® sensitivity awareness program to help caregivers and the community understand what it’s like to live with cognitive challenges.