“But You Look So Good!: Caregivers’ Invisible Trauma and Grief”

As we approach the year 2020, fear of death persists as efforts continue to prolong or hasten death. The focus is typically on the person who is acutely or terminally ill, however, there are family bystanders, many in the role of caretaking, whose chronic sorrow is often overlooked. Yet it is this very group who are constantly dealing with the emotional rollercoaster of anticipatory grief, and behavioral demands at home and in the hospital. Additionally, they are experiencing the physical wear and tear to keep ‘all of the balls in the air’ and the negative impact on the immune system stress and septic environments are having, and the cognitive conflicts of being with the patient versus taking a little time away to handle things, and, if at all lucky, to take care of themselves. Amid all these reactions, these caretakers are wrought with grief, often not knowing if the loved one will come home or survive the next day. Their grief is often invisible, like that of those who deal with hidden disabilities.

 

Statistics established by the National Health Council regarding chronic illness support this need for attention to caregivers (https://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf). According to the Center for Disease Control and Prevention (2009), it is estimated that approximately 133 million Americans are dealing with incurable and ongoing, chronic diseases, which represents more than 40% of the total population of this country. It is anticipated that that number is projected to grow to an estimated 157 million by 2020, with 81 million having multiple conditions. Furthermore, according to Devol & Boudroussian (2007), 75% of health care costs are associated with chronic illnesses, with approximately 1.3 trillion dollars being spent annually. If at least one significant other is involved in the shouldering the care of those with chronic, possible terminal illnesses, the pool of caretakers in this country is astronomical!  In addition, one needs to consider that caretakers are taking on this task often with minimal financial reimbursement, offsetting the expansion of the cost of home health care aides, which was estimated to be $97 million dollars in 2017 (https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/Downloads/highlights.pdf). At the very least, it essential that we offer more than trite sayings and recognize the painful journey and grief of caretakers. 

Trite Sayings

            There are a plethora of trite sayings that exist regarding the bereaved and an equal number exists with respect to caregivers. All one had to do is search the net and lists upon lists of what to say and not to say are found. It is common knowledge that many times these trite words, at best, come out of good intentions, while at other times, are based in ‘political correctness; desensitization to trauma; a lack of knowing what to say; or fear. But let us consider the impact of an example of just one of these sayings, the one we have chosen to address, “But you look so good”. On some levels, this comment shuts down the ability to talk and share grief responses which can result in increased internalization of the volatile emotions. There may be a felt pressure to maintain this mask of being in control and ‘having it together’, or guilt for looking good in this time of crisis. In addition, assumptions should not be made as to why the caretake may indeed ‘look good’. Perhaps, this is an effort to protect the patient from worrying about the loved one, to maintain a sense of normalcy, or to ward off derogatory comments.  It should be noted that guidelines regarding more appropriate things to say to caregivers also exist.  While these suggestions are helpful, the issue is much more than political correctness, it about caregivers needing concrete assistance. The negative comment upon which this article is based is a symbolic representation of the denial of caregiver needs, and as a springboard to looking at how counselors can truly help this group. So, what is the caretaker going through, and how can counselors be of help?

Caretaker Experience

            It is essential to remember the fundamental principle that each person’s experience is unique, and it is important to understand this journey from the eyes of the caretaker. In addition, like stage theories of grief, caretakers are also going and recycling through various stages of grief. When a good medical report is received, the caretaker may be cautiously relieved but at the same time on ‘red alert’ for the next crisis. When such reports are bad, and caretakers are told to ‘prepare for the worse’, how many times and in what manner can ‘goodbyes’ be said? Caretakers may also experience vicarious traumatization and compassion fatigue as they are frequently surrounded by others in hospital ICU settings who are sharing fates akin to their own. And what is the toll on the ‘flight or fright’ response every time a code is announced on the loudspeakers? Clearly, there is burnout from excessive physical demands, cognitive dissonance, emotional rollercoasters, and perhaps even, spiritual crises. There may be irrational thoughts of acts of commission or omission that sickened the loved one, guilt over the ambivalence of what they hope the outcome will be, and lack of physical self-care, from basic showering to proper nutrition. As Glenn Frost, Medical Social Worker indicated, “During home visits, it was sometimes hard to distinguish the patient from the caretaker”. The following section addresses various tasks counselors can undertake to assist these caretakers. This is important but only for their well-being but in recognition of the extensive care they give with healthcare physical and financial shortages.

Counselor Tasks                                             

            In addition to the commonly thought of tasks such as getting help for the caretaker with everyday needs such as grocery shopping, meal preparation, picking up children, and getting the mail, there are a number of activities and interventions counselor may assume in a hospital setting, in collaboration with social workers and recreational therapists, which can comfort and ease the burden of caretakers. These include but are not limited to:

1. 1. Create daily ‘respite breaks’ for the caretakers. As Michael Demoratz, Hospice Social Worker, and nationally known speaker and author on the topic of end-of-life care, stated “Respite is medicine for caregivers. They need to take it regularly to be effective”. Why is it that the all too common known idiom that one cannot take care of others if self-care is ignored?
   2. Develop regular recreational opportunities for caregivers. Mindfulness/Meditation activities and exercise can contribute to the positive mental and physical well-being of the caregivers, as well as be a means of dealing with the trauma experienced. Other activities such as cards, puzzles, and bingo games with self-care prizes can provide a temporary distraction, a brief time of fun, and support group for the caregivers.
   3. Create caretaker ‘survival bags’. These bags may be filled with items caretakers may need such as pens and pads, tissues, candy, and water; but may not have the time to collect or remember to obtain.
   4. Offer a weekly ‘day of leisure’. In the spirit of self-care, haircuts, massages, and manicures might be offered, and laundry services made available.
   5. Organize an ‘update list’. With consent from the caretakers, a unified text may be sent to other loved ones and friends. One of the authors recalls dreading the buzz that another well-meaning text arrived requesting an update on the loved one.
   6. Deliver some homemade meals, favorite ‘take out’ specialties to the caretakers in the hospital. When in the hospital, one of the authors’ husbands had to drive to get an iced tea from a local chain as that same chain in the hospital only sold coffee. While perhaps seeming trivial, a ‘taste of home’ can bring great comfort as well as needed nutrition.
   7. Provide a bed/working ‘bed-chairs’ for overnight stays. One of the authors can recall sleeping on the visitors' lounge floor next to a garbage can when her husband was in ICU; and another time, having a ‘bed chair ’collapse from both ends, trapping her inside.
   8. Establish a safe place for caretakers to ‘just be’; make phone calls with available phone reception. Caregivers need a private space to grieve and ‘regroup’, and make needed contacts. One of the authors went days at a time without telephone reception when her husband was in the hospital and had to walk outside to make calls or text.
   9. Designate a place whereby caretakers may shower. Allowing caregivers to shower in the hospital allows for less travel home and can give them a few minutes of relaxation and refreshment. This should be scheduled at a time when the medical staff is not competing for the showers.
   10. Have a supply of books, puzzles, etc. available as well as daily refreshments with nutritional snacks. This, like the activities and meals, can positively contribute to the caregivers’ stamina and mental well-being.
   11. Provide free, accessible parking or shuttles. Caretakers are already worn down, exhausted, and financially drained; walking to the hospital from packed garages or fighting for a street parking can add to the stress. In addition, caregivers, due to the immense stress being experienced, may forget where they park.
   12. Assist caretakers with financial assistance. Costs of medical care are astronomical and maneuvering through the multi-faceted aspects of the spiderweb of resources.
   13. Create an open-ended group whereby other caretakers may meet. The positive aspects of support groups have long been documented. Validation, normalization, and support are key components of such groups. Having them be open-ended allows for caregivers to attend as needed or desired.
   14. Conduct regular medical professionals and hospital staff regarding caretaker needs. As stated earlier, caregiving for a loved one who is chronically or terminally ill is comparable to a roller coaster ride. On one day, caregivers may feel a sense of hope and stability, on another, be preparing to say good-bye to the loved one.

In closing, as Michael Leming, Professor Emeritus of St. Olaf University and author of numerous books on grief, has shared “Perhaps most importantly, remember to keep questions open-ended such as “how are you doing?’, ‘How can I help?”, or “What do you need?”  give permission for caretakers to feel whatever they are experiencing, ascertain available supports the caretakers have available; assess for depression and lethality; and re-affirm that the caretakers are doing the best they can, no matter how good they look!

 

Resources

5 Things Caregivers Wish You Would Say

https://www.brainline.org/blog/learning-accident/five-things-caregivers-wish-you-would-say

10 Things You Shouldn’t Say to Caregivers

https://www.verywellhealth.com/things-not-to-say-to-caregivers-97979

12 Things You Should Say to a Caregiver.

 https://www.crisisprevention.com/Blog/May-2013/12-Things-You-Should-Say-to-a-Family-Caregiver

Best Books for Caregivers: 20 Books for Senior Caregivers

https://www.inhomecare.com/20-books-for-senior-caregivers/

Caregiver Survivor Tips

https://www.beliefnet.com/love-family/caregiving/caregiver-survival-tips.aspx

Caring for a Parent with a Chronic Disease

https://www.beliefnet.com/love-family/caregiving/caring-for-a-parent-with-a-chronic-disease.aspx

Caring for Patients with Dementia

https://www.nursinginpractice.com/mental-health/caring-patients-dementia

Centers for Disease Control and Prevention (nd). Health and economic costs of chronic diseases. Retrieved from:

https://www.cdc.gov/chronicdisease/about/costs/index.htm

Centers for Disease Control and Prevention (2009). The power of prevention. Retrieved from:

http://www.cdc.gov/chronicdisease/pdf/2009-Power-of-Prevention.pdf

DeVol, R. & Bedroussian, D. (2007). An unhealthy America: The economic burden of chronic disease. Retrieved from:

 http://www.milkeninstitute.org/pdf/ES_ResearchFindings.pdf

Family Caregiving

https://www.aarp.org/caregiving/?cmp=KNC-BRD-MC-REALPOSS-TODAY-BING-SEARCH-CAREGIVING&gclid=CMv29sPg7OUCFU3YswodzDUJLw

Guide to Caring for a Parent with Alzheimer’s

https://www.beliefnet.com/wellness/health/2008/09/guide-to-caring-for-a-parent-with-alzheimers.aspx

Taboo to Caregivers

https://www.aarp.org/caregiving/life-balance/info-2017/things-never-say-to-a-caregiver-ag.html

Things Never to Say to a Caregiver

https://www.aarp.org/caregiving/life-balance/info-2017/things-never-say-to-a-caregiver-ag.html

Things NOT to Say to a Caregiver

https://thecaregiverspace.org/things-not-to-say-to-a-caregiver/

Things Not to Say to Caregiver

https://www.verywellhealth.com/things-not-to-say-to-caregivers-97979

Words of Support for Caregivers

https://www.beliefnet.com/love-family/caregiving/words-of-support-for-caregivers.aspx