Topic of the Month
Dilemmas of Caregivers
By Kay Paggi MEd, LPC
Caregivers come from many different caregiving situations: some have parents far away, some live with them; some have physically frail parents, others have parents who no longer remember them; some have only one parent, some have several for whom they are providing care. What can they possibly have in common?First, caregivers are concerned about their parents’ safety. When you assume responsibility for someone, you want to make sure that nothing happens to them while you are in charge. Unfortunately, there is often a conflict between the children’s desire for safety and the parents’ need for independence. Parents want to continue to make their own decisions and lead independent lives, even if this involves hardship or risk. In order to be able to secure their safety, adult children frequently move their parents across country in order to have them closer. This forces the parents to give up familiar homes, neighbors, and old friends. Whose right is it to decide?This brings up the problem of distance. It is challenging to try to provide care for a parent who lives in another state or time zone. It’s not easy to have to fly back and forth or make frequent long distance phone calls to make arrangements. It’s also not easy to have a parent who lives across town yet needs frequent care. And it’s almost impossible to live in the same house with a parent, at any age!I do not endorse the concept of ‘parenting your parents’. When my teenager makes poor decisions, I can take the car keys. I took my mother’s car keys and she called the police! While you may have the responsibility of caring for your parents, you usually do not have the authority to enforce your decisions. You can tell your father that he doesn’t see well, can’t turn his head to see the rear of the car, and drives in the middle of the road, and therefore he should stop driving. Your father can ignore this advice and continue driving. Guardianships cost around $10,000, are emotionally draining, and usually do not succeed. As a caregiver, you must find another, more diplomatic, way of ensuring that wise decisions are made.Caregiving for elderly parents is far different from caring for children. Childcare is predictable. They don’t sleep when they come home from the hospital, they have tantrums at the terrible two’s, and you don’t like them very well when they are 13. Eldercare is totally unpredictable. You do not know whether to prepare for a stroke, a heart attack, cancer, or Alzheimer’s, or perhaps your parent will live to 94 and die peacefully in her sleep. Life events that are unpredictable cause stress.Caregivers are concerned about their parents’ physical health. As you provide assistance for your parents, you must learn to negotiate the Medicare maze. The forms are endless and redundant. Furthermore, many doctors do not accept patients who are on Medicare. There has been a recent growth of senior health clinics sponsored by the major hospitals. These are great for routine treatment. However, the physicians usually do not follow their patients into the hospital. This means that when your parent is hospitalized, you deal with a strange doctor. Geriatrics has been taught in American medical schools only since 1990. Physicians who graduated before that year may have no formal training in how an older body is different from a younger one, and may not know that they don’t know. Medical schools now offer lectures in geriatrics, not courses. The courses are elective, and most students elect not to take them. You are so grateful to find a doctor that will treat your parent that you don’t dare ask if this doctor knows anything about older bodies.Most caregivers have little information on which to base important decisions, and don’t know where to go to get this information. Not only is this the first generation in history to age en masse into later life, this is also the first generation of caregivers! Yes, your parents provided care for their parents, maybe for as long as a year or two. Caregivers now provide assistance for an average of 18 years.
You can’t ask your mother, or your neighbor or your best friend for advice. This generation is setting the standards of eldercare for those to come; there are no cultural models for you to follow.Caregiving can jeopardize your job. The Administration on Aging estimates that 36% of employee absenteeism currently is due to eldercare. That number is going to skyrocket in the very near future. The average number of hours spent caregiving is 10 per week. 9% of caregivers quit their full time jobs so they can spend more time caregiving. It is often cheaper to quit your job than to pay for care. 21% reduce the number of hours they work. 19% take time off without pay. Many caregivers refuse promotions because they mean more time on the job, or more travel. Most refuse overtime. All this puts your own future at risk. Less work time now means fewer quarters in Social Security, less money in an IRA, fewer retirement benefits.Caregiving endangers your health. 87% report chronic fatigue, anger and depression. Caregivers are vulnerable to isolation, and drug and alcohol abuse. Caregivers are less likely to seek medical attention for their own problems; they are too tired from taking others to the doctor to go again. There was an interesting study done with healing. A group of caregivers and a control group were both given small ‘nicks’, skin wounds, then watched to track how long the wounds took to heal. The caregiving group required significantly longer. The implications are enormous: if a skin tear takes longer to heal, what happens if you get sick?
The timing of caregiving is sometimes awkward. Just as you reach middle age and notice that you can’t read the newspaper without your glasses and your figure has headed south, here comes mom with her aged body. Your thought is, ‘How old was mom when I was born? How many years do I have left?’ Also, at midlife women’s bodies undergo certain predictable changes, which can cause emotional outbursts, depression and mood swings. Often after a caregiver complains about her mother and her problems, I suggest she have her own hormone levels checked. Sometimes the problem is with the caregiver.A great deal has been written about the ‘sandwich generation’ This generally refers to a caregiver who still has children in the home while providing assistance to aging parents. With this group, there isn’t enough. Whatever it is, there isn’t enough. There’s not enough money, time, or energy. Whatever decisions are made leaves something important undone. Caregivers make agonizing choices: put mom in a private nursing home, or a bright child in a private college? Buy orthodontia or an electric wheelchair? Attend a soccer game or visit mother in the hospital?Most caregivers manage to at least get their children into college before they begin caregiving. This group has a different problem. At last the kids are gone, you can return to work, take a trip, and do the things you have been putting off. And now dad has a stroke, and all those plans get put off again. And the thought is, ‘Will it ever be my turn? Will I be too old to enjoy it?’This brings up the topic of guilt, the caregiver’s themesong. Most caregivers feel guilty. They feel they haven’t done enough. In fact, it is often true that it is impossible to do everything that needs doing. It is important to ask what needs doing, and who best can do it? Caregivers may be dismayed to learn that someone else can do some tasks more effectively, or more efficiently. They must learn that it is ok for some things to not be done perfectly. Above all, they must learn that most parents prefer quality above quantity. They would prefer some time spent talking, reminiscing, visiting, more than that same time spent running errands or cleaning house. You can pay someone to do these caregiving chores. You can’t pay someone to love your parents.Finally, caregivers realize that ultimately they will fail. Even the parents of the best, most attentive, caregiver will die. The focus must change from preventing death to maximizing quality as your parent interprets it.
SOME SOLUTIONS Caregivers, as well as most aging professionals, are focused on losses. These are obvious and are causing many of the caregiving difficulties. But we forget to look for the pluses, the gains. These people have achieved old age: what have they gotten? Look for things like memories – grandchildren - achievements – wisdom – appreciation for various things in life – involvement with meaningful projects – patience – humor – and hundreds more. When you focus on the positive, you can use these assets to assist you and your parents make this an easier transition.Get to know your parent as a person. They actually did have a life other than being your parent! Ask about their interests, hobbies, and friends; how did they meet each other? Find out about memories of their grandparents, favorite childhood toys, and schoolteachers. Make a scrapbook or a memory album or a collection of memorabilia. There are blank books at bookstores such as ‘Grandma’s Memories’ or "Story of a Lifetime"; use these as a template to create an heirloom.
Find a geriatric care manager. These folks are invaluable resources. There are less than 1200 in the world, but the profession is growing. A care manager can help you find resources, hire a companion, arrange for transportation, take care of the work of caregiving so you can focus on the quality. Most care managers begin with a thorough physical, emotional and environmental assessment. They use this information to develop a Care Plan, which becomes a blueprint for planning future care. Most care managers remain connected to the family or elder through the elder’s lifetime, offering encouragement, support, suggestions, or whatever is necessary as it becomes needed.Caregiving can be the best time with your parents. Most of the problems can be solved with help, and this is the time for becoming acquainted with your parent peer-to-peer. It can be very special.
