Tag Archives: family caregivers

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.

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.

The Family Caregiving Tsunami is Here. How are We Supporting Them?

We have a family caregiving tsunami whose tidal waves are affecting every corner of our society.  I venture to say that most communities are not prepared for the domino effects of a fast-aging population let along to provide support to their families that are scrambling to stay above water – emotionally, physically and financially.

November is National Family Caregivers Month.  Spearheaded by the Caregiver Action Network, the theme is Caregiving Around the Clock.  

As I travel abroad, I certainly see first hand that the challenges in the US are felt around the globe as this age-wave takes hold.  Public institutions are already stretched to serve current needs and despite the growth of

Let’s look at a few staggering US statistics compiled by the Family Caregiver Alliance:

  • Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans. [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]
  • About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

What is the Economic Impact?  

  • The value of services provided by informal caregivers has steadily increased over the last decade, with an estimated economic value of $470 billion in 2013, up from $450 billion in 2009 and $375 billion in 2007. [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
  • At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year and nearly matched the value of the sales of the world’s largest company, Wal-Mart ($477 billion). [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
  • The economic value of the care provided by unpaid caregivers of those with Alzheimer’s disease or other dementias was $217.7 billion in 2014. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

The clock never stops for family caregivers, and globally the clock is ticking for public and private institutions, community organizations, faith communities and each one of us in this space to make a committment-  that in 2019 we do more to reach family caregivers, provide support services and needed resources.  They are and will remain the largest group support our aging population in the years ahead.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.

Grief, Guilt, and Anxiety – How We can Help Caregivers

As a long time family caregiver and professional in this field, I can tell you that the myriad of emotions that caregivers face on a daily basis is complex and ever-changing.  That said, grief, guilt, and anxiety are certainly at the top of the list.   How can we, as professionals in this field, better understand family needs and partner alongside them on this difficult journey?

Let’s talk first about the emotions that family members experience in deciding to move their loved one into assisted living or another level of care.  First, families are often focusing a tremendous amount of attention on helping their loved one cope.  This can be overwhelming in itself, and certainly where the grief, guilt, and anxiety begin to kick in.  Grief may be the sadness of realizing that their loved ones are aging.  If there is chronic or serious illness, anticipatory grief might be the realization that death is in the foreseeable future.  If a loved one is living with dementia, grief is felt over the loss of who that person once was.

Families, especially primary caregivers live with guilt.  I often tell caregivers this is an added benefit of the job.  Often second-guessing decisions,  caregivers tend to be overly sensitive to their loved one’s own emotions.  At the same time, juggling family, job responsibilities, and caregiving duties can leave a person feeling like they are not doing a good job in any of those areas.  When guilt piles up, it often spills to feelings of unfounded fear and doubt.

Anxiety, like grief and guilt, can be caused by and can cause a snowball of other emotions.  When a family member is the one “in charge” of taking care of the many tasks associated with moving their loved one to a care facility, anxiety kicks in quite easily.  What often happens is that when one is under stress, rational decision making sometimes goes out the window.

It’s important that as professionals we assure families that, as hard as this process is, it is normal to feel these emotions.  Helping them with resources (movers, real estate professionals, support groups, etc. can ease some of the burdens and also provide a network of people who are experienced and trusted).

While family members, especially primary caregivers are learning, most have not walked this path before.

If there is one piece of advice that professionals need to remember it is that families know far less about the complex world of caregiving, levels of care, chronic illness, Alzheimer’s and other dementia, legal and financial planning and dealing with stress and burnout – than we expect them to!  This is not to diminish the admirable responsibilities that caregivers take on.  There is just so much to learn.  I was years into caregiving myself before I even realized what I needed to know – and then under stress, I’d forget the things I did learn!

Professionals can be a much-needed gentle guide through this process.  Here are a few tips that may benefit the family:

  1.  Give them a checklist of things to do before their loved one moves.  This list may include what to bring in the way of furniture, clothing and personal items.
  2. Invite them for lunch and go over the list and any concerns.  This is a good time to get to know a bit more about their future resident, but also the relationships of the family.
  3. Assure the family that as difficult as this time is, it will get easier and that staff is there to ease the transition for everyone.
  4. Make sure the family feels comfortable with the staff that will be most involved in the initial move and transitioning their loved one.  Knowing and discussing any questions upfront will save day-of moving confusion.
  5. Encourage the family to give their loved one a few days to settle in.  They will benefit by the break, and many times it helps the new resident get acclimated to their new home.

A smile goes a long way, a hug calms fears, and humor eases tension.  

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.