Family Living Focus: Family caregiving: Sharing the work
The phenomenon of nuclear-family caregiving for our elderly, chronically ill or disabled loved ones is a pandemic crisis in modern cultures. Some 50 million Americans are family caregivers, defined as family or friends.
The suggestion that family caregivers might need outside help with caregiving evokes profound feelings of guilt and disloyalty, even if unconsciously. It seems uncomfortable to ask someone else to do our job for our family member. It isn’t your job alone.
It almost seems easier (or more economic) to do the caregiving ourselves but it isn’t. A checklist can help assess the need for outside help in caring for our loved ones. Here are some signs:
• Taking excessive time off work to do caregiving chores
• More forgetful even with your many “to do lists”
• Too tired for the usual social phone calls or emails at night
• Irritable, edgy, angry or anxious
• Low in spirits, feeling depressed
• Sleep or eating disruption
• Difficulty concentrating
• Fatigued more often and more easily
• Frequent colds or getting generally rundown
• Frequently sighing and/or crying
• Neglecting other areas and interests in your own life
These are signs that it’s high time to call for help because they are symptoms of excessive and harmful stress. Stress and depressed moods come and go, but there’s a distinction between caring for children and caring for the ailing family member because of the future outcome. Exhausted by nightfall, you stoop to pick up your healthy child’s socks, expecting a bright future of growth and independence for him/her. In contrast, we care for our elders with love and a sense of duty (sometimes with resentment) but knowing where the road will end. Feelings of pessimism and hopelessness overpopulate this territory.
Yet there’s a positive flipside: the caregiver’s journey can be rewarding and meaningful, enriching our spiritual and emotional growth. We can only experience the more positive side of caregiving if we do it with thought and planning. So, plan now: find a quiet time and space, turn off the phones and TV, turn on nice music, breathe deeply and start a list.
1. Prioritize Work. List all the tasks you do for them and all that remain to be done, from laundry to cooking to medical appointments to financial planning to calling nursing homes to sitting catatonic staring at the TV together. Imagine the positive: who can you visualize doing what? Prepare to delegate.
2. Human resources: Family. Look at each family member (including those you’d rather not). Some obstacles are fixable and some not such as geographic distance, emotional distance, downright loathing. The brother who breezes in once a year – the sister who’s always said “No” to everything. Some family members jump right in to help; some families actually grow closer from the crisis. Caregivers without siblings must cast their nets wider. Some caregivers are spouses who need help themselves but are too proud to ask. Turn the page on the past: new chapter. Write or call but find a way to state nicely and firmly that things have changed. Be ready to discuss #1 above and who can do what. Remember, this is interactive; discuss the issues fairly, considering their situation and asking them to consider yours.
3. Human Resources: Friends and neighbors. These visits and support can be a godsend. Don’t underestimate the importance of moral support. Friends and neighbors can be a lifeline.
4. Community Resources. Check out non-profit organizations and municipal agencies appropriate for the situation, such as the County Health and Human Services, Area Agency on Aging, the American Alzheimer’s Foundation, Alzheimer’s Association, Gay Men’s Health Crisis, American Heart Association, Cancer Care, etc. Among services offered are informational newsletters, educational forums, telephone hotlines, support groups and teleconferences.
5. Professional Support, if and when needed – that goes for both you and your loved one.
For the care receiver: When is it time for a home health aide or paid companion? Whether you need respite for yourself or a total replacement, there are many levels of need between the person who needs some companionship plus some cooking, and someone who cannot perform activities of daily living (ADL’s) without assistance, like dressing, bathing, eating, continence, or are at risk for falling. A professional home health aide may be necessary simply because the daughter, who has been doing it all, is not physically strong enough to lift her father. Sometimes the family caregiver is too personally close to the situation to be objective. Therefore, a doctor, nurse practitioner, social worker, or geriatric care manager can help assess the need for appropriate care by a certified home health aide or attendant, or for residential placement in assisted living or nursing home. It may be four hours a week respite for meal preparation, or it may be 24/7, but clarifying the level of need will greatly help to reduce stress.
For the caregiver: Many items on the assessment checklist above are symptoms of depression and anxiety. For some, all we need is a little emotional support and information. Plugging into resources and the many supportive Web links (discussion forum, newsletter, etc.) can prevent isolation. Other organizations offer caregiver support groups; it can be enormously helpful to share your experiences with others to alleviate the sense of isolation. If low moods persist, if sleep or eating disruption, anxiety or irritability continue, or you just want to talk about what you are going through, you might benefit from psychotherapy or counseling to enhance coping, better manage stress and set future goals.
6. Self-Care. Sleep! Eat! Exercise! Accessorize! As much as possible, maintain a normal routine. Stay in touch with friends. Make a date with yourself each week to indulge in things you like; something simple can seem like a luxury, like sipping latte in a bookstore and reading for pure pleasure (fiction, poetry, books on the world’s 100 most beautiful quilts, or local history not just books on caregiving), burying your watch deep inside your handbag and silencing the cell phone. Go to the spa, meditation class, movies, a candlelit dinner with champagne, or sit home listening to music or whatever gives you pleasure.
Remember the old cliché, you cannot help someone else if you are not in good shape. First, be your own good caregiver.
Information adapted from article by Rita L. Calderon in Today’s Caregiver Newsletter, February 11, 2014 – Issue #687.