Monday, April 12, 2021

Caregivers Take Care of Yourselves


Caregivers who are interested in applying for the new dementia respite program on Marco Island, expected to begin soon on Mondays, should call the Naples Senior Center at 239-325-4444 and ask for Rhonda Eisenberg, social worker.

Caregivers who are interested in applying for the new dementia respite program on Marco Island, expected to begin soon on Mondays, should call the Naples Senior Center at 239-325-4444 and ask for Rhonda Eisenberg, social worker.

Have you made your new year’s resolutions yet? If not and you are a dementia caregiver, consider making this one: I will take better care of myself this year. I know from experience with my mother and my husband, that most of my focus was on caring for them. I learned that initially, it makes sense for the focus to be on the care receiver when a diagnosis is made, medications given, and the family comes to terms with the caregiving role and who will fulfill it.



As the patient declines, however, experts I sought out agreed that the focus needs to shift to the caregiver and his or her wellbeing. Their reasoning was that if the caregiver is not well, no or inferior care will be given to the one with dementia. Also, those with dementia may decline very slowly over a number of years. So, the caregiver needs to stay fit. My caregiving duties covered an 18-year period with both my mother and husband. I eventually learned that caring for myself increased my chances of being there for both of them through their decline.

The Family Caregiver Alliance website on general caregiver health notes, “A substantial body of research shows that family members who provide care for individuals with chronic, disabling conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives. … Higher levels of stress, anxiety, depression, and other mental health effects are common among family members who care for an older relative or friend. … Studies consistently report higher levels of depressive symptoms and mental health problems among caregivers than among their noncaregiving peers.”



The website continues on general caregiver health: “Estimates show that 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one quarter to one half of these caregivers meeting the diagnostic criteria for major depression. … Both caregiver depression and perceived burden increase as the care receiver’s functional status declines. Thus, studies show that 30 to 40 percent of dementia caregivers suffer from depression and emotional stress.”

A scientific study, Caregiver Health: Health of Caregivers of Alzheimer’s and Other Dementia Patients found online at Springer Link states, “that health providers must recognize that family caregivers often present as secondary patients. Given the importance of these caregivers to patients with Alzheimer’s disease and other dementias, it is vital to understand the risk factors that impact caregiver health and well-being.”

More on risk factors from the Family Caregiver Alliance: “Caregiving in general can result in feeling a loss of self-identity, lower levels of self-esteem, constant worry, or feelings of uncertainty. Caregivers have less self-acceptance and feel less effective and less in control of their lives than noncaregivers. More than 22 percent of caregivers are exhausted when they go to bed at night, and many feel they cannot handle all their caregiving responsibilities.” In addition, “Caregivers who experience chronic stress may be at greater risk for cognitive decline including loss of short-term memory, attention, and verbal IQ.”

As if this picture of caregiving isn’t bad enough, “Research shows that female caregivers (who comprise about two-thirds of all unpaid caregivers), fare worse than their male counterparts, reporting higher levels of depressive and anxiety symptoms and lower levels of subjective well-being, life satisfaction, and physical health than male caregivers,” according to the Family Caregiver Alliance site. One study showed a “dramatic increase in risk of mental health consequences among women who provide 36 or more hours per week of care to a spouse.”

Family and friends may need to help the caregiver realize the burden he or she is under. That happened in my case when close friends pointed out signs of strain and stress. The Alzheimer’s Association’s Caregiver Center lists ten symptoms of caregiver stress to help in identifying problems in yourself and others.

Number one is denial about the disease and its effect on the person who has been diagnosed. I was guilty of this at various stages of my loved ones’ decline and also experienced a number of the symptoms of stress that follow.

Two: anger at the person with Alzheim- er’s or frustration that he or she can’t do the things they used to be able to do. Three: social withdrawal from friends and activities that used to make you feel good. Four: anxiety about the future and facing another day. (What happens when he needs more care than I can provide?) Five: depression that breaks your spirit and affects your ability to cope. Six: exhaustion that makes it nearly impossible to complete necessary daily tasks. Seven: sleeplessness caused by a never-ending list of concerns. Eight: irritability that leads to moodiness and triggers negative responses and actions. Nine: lack of concentration that makes it difficult to perform familiar tasks. (I was so busy I forgot my appointment.) Ten: health problems that begin to take a mental and physical toll. (I can’t remember the last time I felt good.)

If you recognize some of these issues in yourself, consider the Alzheimer’s Association Caregiver Center’s recommendations. The first, know what community resources are available. They can include “adult day programs, in-home assistance, visiting nurses, and meal delivery.” On Marco Island, we’re fortunate now to have a dementia respite care program staffed and operated by the Naples Senior Center of Jewish Family Community Services. The Wednesday program started mid-November and a new Monday program is expected to begin this month. (See details for how to apply at the end of this column.)

Get help and find support is the second recommendation. The online Care Calendar “helps you organize friends and family who want to help provide care and support.” Also check the Alzheimer Association’s 24/7 helpline at 800-272-3900 and their site for local support groups.

Use of relaxation techniques is suggested, such as visualizing a place or situation that is peaceful and calm, meditating by letting go of all stressful thoughts, breathing with the focus on deep breaths, and relaxing one’s muscles through tightening and then relaxing each muscle group.

Get moving is also recommended since physical activity in any form can reduce stress and improve well being such as taking a walk, gardening, and dancing. Other recommendations include finding time for yourself to do the things you enjoy, becoming an educated caregiver, and making legal and financial plans after an Alzheimer’s diagnosis while the person with dementia can participate.

Some of these recommendations helped me during the often difficult, caregiving years. Consider adding: getting enough sleep, eating healthfully, and reading something inspirational and/or funny every day like the comics. From Peanuts to Mary Worth or For Better or Worse, somehow it all helped.

Caregivers who are interested in applying for the new dementia respite program on Marco Island, expected to begin soon on Mondays, should call the Naples Senior Center at 239-325-4444 and ask for Rhonda Eisenberg, social worker. Also, there may be a few openings left for the Monday program that began recently.

Shirley Woolaway has an M. Ed. in counseling and worked in journalism, in business, and as a therapist in Pennsylvania. She has 25 years personal experience with dementia as a caregiver for family members with Alzheimer’s disease, and nine years as the coordinator of an Alzheimer’s Association memory loss/caregiver support group, earlier in Pennsylvania and now on Marco Island. We believe that Shirley’s insights will prove helpful to many of our readers.

For help on all aspects of Alzheimer’s disease and other dementias call the national Alzheimer’s Association confidential, 24/7 helpline at 800-272-3900 or the local Bonita Springs office at 239- 405-7008 for care consults and support group information. Also helpful with local educational programs, workshops, and support groups, is the Naples Alzheimer’s Support Network, 239-262-8388.

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