Home Instead Senior Care regularly hosts webinars for its caregiver employees. Family caregivers and anyone in the community may participate. In January 2017, they hosted a webinar titled “Understanding the Emotional Aspects of Caregiving.”
Here’s a short description: “Caregiving can be an emotionally intense experience. Many caregivers experience negative feelings, which they may bury or deny. Doing this can lead to unhealthy emotional and physical states.”
Here’s a link to the recorded webinar:
www.youtube.com/watch?v=0WhKbXMsp24
Understanding the Emotional Aspects of Caregiving
Webinar sponsored by Home Instead Senior Care
January 2017
Speaker: Lakelyn Hogan
Brain Support Network volunteer Denise Dagan listened to the webinar and reported the following:
“The first half of this one hour talk identifies normal emotions of caregiving. The second half shares strategies to manage those emotions, and there is some good advice for both caregivers and professionals, particularly the first couple steps: acknowledge your feelings and release them. It is normal to feel anxious, frustrated, or guilty for any number of reasons, but keeping those emotions bottled up just damages your health and makes you miserable. If you can get past the feelings and take action to make your caregiving situation more manageable, both you and the person you’re looking after will be in better shape for the caregiving journey. She has good advice for building your caregiving team by reaching out to family, friends, your church, support groups, even your employer. Ask for help with meals, specific tasks, a flexible work schedule, or just a friendly ear or dinner companion. Anything your caregiving team can take off your plate lessens your stress, resentment, anxiety, and frustration.”
I liked this list of the five phases of caregiving (using the example of a spouse):
– Phase 1, a wife still feels like a wife, doing her own household chores, plus some that once were her husband’s.
– Phase 2, a wife still feels like a wife, but doing almost all the household chores alone.
– Phase 3, a wife is now doing all the household chores and helping with husband’s bathing/grooming, beginning to have trouble juggling everything.
– Phase 4, husband is almost completely dependent on wife, who feels more like a caregiver and not much like a wife. Most caregiver spouses do not seek emotional help. She may place husband in a caregiving facility, but without assistance they remain in a caregiving role.
– Phase 5, a wife brings in outside assistance from siblings, adult children, home care, home health, or may place husband in a facility. With this support, she may be able to revert back to the role of wife.
Denise’s extensive notes from the webinar and the question-and-answer session are copied below.
Robin
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Denise’s Notes on
Understanding the Emotional Aspects of Caregiving
Webinar sponsored by Home Instead Senior Care
January 2017
Speaker: Lakelyn Hogan
Theory of emotional aspects of caregiving studied for over 20 years:
* The Caregiver Identity Change Theory developed by Dr. Rhonda Montgomery and Dr. Karl Kosloski
* There are systemic gradual changes along the caregiving journey in:
– change in activities (newly required tasks)
– change in the relationship w/care receiver (especially increased dependency)
– change in identity of caregiver (from spouse or daughter to caregiver)
5 Phases of Caregiving: Example is that of a spouse
– Phase 1, a wife still feels like a wife, doing her own household chores, plus some that once were her husband’s
– Phase 2, a wife still feels like a wife, but doing almost all the household chores alone
– Phase 3, a wife is now doing all the household chores and helping with husband’s bathing/grooming, beginning to have trouble juggling everything
– Phase 4, husband is almost completely dependent on wife, who feels more like a caregiver and not much like a wife. Most do not seek emotional help. She may place husband in a caregiving facility, but without assistance they remain in a caregiving role.
– Phase 5, a wife brings in outside assistance from siblings, adult children, home care, home health, or may place husband in a facility. With this support, she may be able to revert back to the role of wife.
Stopping at phase 4 or continuing to phase 5, even combining phase 4 & 5 are common.
Professional caregivers, geriatric care managers, social workers, etc. can help at any phase. Example is helping a couple deal with phase 1 or 2, when a husband may be having to step in and make all meals when his wife always did the cooking. This brings up emotions they may not have the skills to deal with, not to mention the learning curve for the husband in the actual cooking skill set.
Some years ago Home Instead interviewed clients to discover what emotions they were experiencing and whether they viewed them as ‘good,’ or ‘bad.’ Most viewed the emotions related to caregiving as positive, but especially those caring for someone with dementia viewed them as negative. No emotions are really ‘good,’ or ‘bad,’ but our perception of them influence how prepared we feel for the experience or how burdened we feel about it. Professionals can help caregivers embrace their new roles and get the support they need to deal with new, especially unexpected emotions.
AARP & National Alliance for Caregiving did a study in 2015 called, “Caregiving in the US.”
* 40% of respondents felt highly burdened
* 2 in 5 felt their caregiving situation was emotionally stressful
* Respondents in these groups end up repressing their feelings, but they may still feel anxiety, frustration, or guilt.
They may they feel anxiety because:
– They have difficulty watching their loved one decline
– They feel they aren’t doing enough
– They feel they have to be present
– They feel alone
– They feel stress on their marriage & nuclear family
They may feel frustration because of:
– increasing demands on their time
– physical demands of caregiving
– lack of control over their emotions
– self educating and finding resources they need
– lack of support system
They may feel guilt from:
– Wishing they could do more for their loved ones
– losing their patience with their loved ones
– missing time with their own families
– feeling guilty about moving their loved one into a care facility (even thinking about or researching this option)
– complaining about the demands of caregiving
64% of Caregivers caregiving 20hrs/wk, or more, are feeling overwhelmed.
So, not all feel highly burdened or in an emotionally stressful situation, but especially those spending many hours providing care, caring for dementia, and those that had no choice in taking on a caregiving roll will have more emotional stressors.
This chart shows the Health Impacts of Caregiving, specifically the number of respondents who say they have experienced difficult or health related changes since becoming a caregiver. Note that those who express their emotions or allow for them, somehow, have lower incidences of these health related changes.
Additional research found caregivers repressing their emotions have higher rates of diabetes, high cholesterol, hypertension, COPD, and heart disease. They are more likely to have a higher behavioral risk factors like, smoking, alcohol use, and in other ways not taking care of their health (failure to take advantage of screening tests, vaccinations, etc.). To fulfill their caregiving duties, looking after their own health is crucial.
Strategies to Manage Emotions:
* Acknowledge feelings
* Release difficult emotions
* Find solutions
* Engage in enjoyable activities
* Acknowledgement of Emotions Strategies
Caregivers – acknowledge all emotions – both positive and negative, and avoid judging feelings. They are common and normal.
Professionals – be aware of what caregivers may be feeling, and normalize feelings and provide reassurance their feelings are normal
Some aspects of caregiving you can control, and others you can’t. You can provide nutritious, appealing meals, but you can’t make somebody eat. If a caregiver can accept what they can and can’t control, it can relieve that emotional burden.
* Releasing Emotions Techniques
Caregivers – journaling, support group, therapist or friend, exercise/meditation/yoga, prayer. Once they feel the benefit, they will continue.
Professionals – encourage caregivers to take time to release stress, educate about negative consequences that can come from too much stress, make referrals, listen
* Finding Solutions (Getting help)
Caregivers – siblings, extended family, friends, faith community, professional caregiving support
Professionals – understand caregivers’ feelings/where do they need specific help, notice their readiness to ask for help, coach caregivers around how to ask for help, make referrals to sources of help (Family Caregiver Alliance, lotsahelpinghands, etc.)
* Engage in Enjoyable Activities
Caregivers – list things they enjoy (read, TV, church, exercise, friends), plan mini-breaks and getaways
Professionals – reinforce need to take breaks and recharge, help caregivers understand they are not being selfish, provide ideas for recharging, give positive reinforcement
Reasons why caregivers don’t get help:
Professionals should encourage caregivers to increase the size of their care team.
Professionals get burned out, too, from time-to-time. Their work is emotionally exhausting, too. Its called, Compassion Fatigue:
Symptoms:
* bottled up emotions
* isolation from others
* apathy, sad, no longer finds activities enjoyable
* difficulty concentrating
* mentally & physically tired
* preoccupied
* poor self-care (i.e., hygiene, appearance)
* chronic physical ailments (i.e. gastrointestinal problems and recurrent colds)
Overcoming Compassion Fatigue: [The same advice you give caregivers!!!]
* find someone to talk to
* understand the feeling is normal
* spend quiet time alone
* recharge your batteries daily
* identify what’s important to you
* hold one focused, connected & meaningful conversation each day
* start exercising & eating properly
* get enough sleep
* take some time off
* develop interests outside of your work
Resources
* CaregiverStress.com
* Caregiver Action Network: caregiveraction.org
* National Alliance for Caregiving: caregiving.org
* Alzheimer’s Association for Northern California: alz.org/norcal
[Specific to dementia caregivers]
* AARP: aarp.org
* American Society on Aging: asaging.org
– 25 Organizations that Take Care of Caregivers
* Compassion Fatigue
– compassionfatigue.org
– aafp.org/fpm/2000/0400/p39.html
Q&A
What about caregivers with no family, but earn too much to get public assistance?
Try the faith community volunteers to give them a short break. If caring for dementia, try helpforalzheimersfamilies.com. Try your local Area Agency on Aging, and caregiverstress.com. Call 211 to connect to your local Area Agency on Aging.
What do you recommend for a daughter caregiver at odds with siblings. How to bring siblings into the situation?
On caregiverstress.com type. “50 50 rule” in the search box. There is a brochure and a webinar for Helping Siblings Overcome Family Conflict While Caring for Aging Parents.
Make a list of all caregiving duties and list sibling strengths and physical distance. Try to make a match between what needs to be done and who can do what from where they are. A family meeting may help coordinate this or create a calendar of care to rotate coverage.
What about when a caregiver needs help or a break, but continues to refuse?
Take the approach that he/she needs to be in the best shape he/she can be for the person they’re caring for so you don’t end up in the hospital and someone else, entirely has to care for them. Help them prioritize caregiving tasks or things they aren’t willing to relinquish hands-on help with, so they can see some things they are willing to let someone help with, even if it is just housekeeping, it’s a good place to start. caregiveraction.org has a lot of tools to get started.
End of life/grief caregiver resources?
Don’t be afraid of hospice. They are the best at end of life care and have grief resources.
On caregiverstress.com type in, “end of life care” for some articles. caregiveraction.org also has some end of life resources.
Professionals who are also caregivers and need to take care of themselves?
The “working family caregiver” should talk with your employer to find flexibility in their schedule. Ask HR. Some companies have “working family caregiver” programs, EAP program, etc. Enlist help from those around you – both coworkers and family/friends, perhaps a home care agency so your loved one is not left alone so many hours.
caregiver.com
What about when all responsibility falls on one family member, who becomes resentful because nobody else is helping?
Sometimes other family members don’t know how to help. Tell them! Bring a meal every Tuesday, or take Mom to a specific doctor appointment, etc. Especially men aren’t intuitive about what needs doing. Have them mow, shovel snow, make home repairs, etc. if you don’t want to have them do hands-on caregiving.
