My mother moved into my home several years ago due to the progression of her dementia. I have siblings in the area but I was the only one willing to take care of my mom. Since she moved in with me, my siblings have not helped me or my mom in any way. Meanwhile, my caregiving is taking a tremendous toll on me and my marriage. I’m worried about losing my job because I miss so much time. I’m worried about covering future medical expenses for my mom. And I’m worried about the future of my marriage if my mom continues to live with us. We can’t afford assisted living or a nursing home and I don’t want to abandon my mom, but I need help and I don’t know where to turn. What can I do?
What you’re describing is the basic story of caregiving gone awry: One family member steps up to do the bulk of the work. The others applaud from afar or sit on their hands. The illness progresses, the care recipient declines, and the caregiver feels increasingly burdened. No help from others is forthcoming. What once seemed like the right thing to do — caring for an aging parent — now seems like an inescapable trap and a misery. Resentment builds while burnout ensues.
Once caregivers have reached this point, it is very difficult for them to replenish themselves in order to carry on in a sustainable way. You seem to be facing the same challenge. Your best chances are to solicit family support, cobble together professional services, and make some hard decisions.
You have already run headlong into strong family resistance. Every family has its own story for why members pitch in or bail out when an aging parent needs help. You haven’t mentioned your siblings’ explanations for their unwillingness to aid your mother. Perhaps they feel she neglected or mistreated them in the long-ago past. While their grievances may be vitally important to them, they do you no good now. I suggest that you directly ask your siblings to agree to help for two reasons: They may be able to forge new and more mutually satisfying relationships with your mother at the end of her life when she may be less offensive (or perhaps less defensive) than she was in previous decades. They may also be able to forge a closer bond with you than they ever have before by concretely demonstrating their good will during these caregiving years. That bond will then retain its strength long after the caregiving for your mother ends.
If you’ve made this direct appeal and been roundly rejected, then there’s no point in dwelling on the injustice of your family; you need instead to seek caregiving help from the available professionals. Your questions about paying for future medical expenses and the affordability of institutional care for your mother suggest that you need more basic knowledge about existing social service supports in your community. If you go to www.eldercare.gov and put in your zip code, you will be directed to contact information for your Area Agency on Aging (AAA), a local branch of the U. S. Administration on Aging that will have information on home health agencies, adult day care programs, caregiver support groups, and residential facilities. I recommend asking the AAA to schedule a home-based evaluation of your mother and her living situation in order to learn more about services to which you and she are entitled. The AAA intake worker will be able to provide you with expert advice on the financial questions that you have.
But even additional information and services may not make the caregiving less onerous. You may reach a point when hard choices are inevitable. Do you lose your job and your marriage as a result of your continuing commitment to provide care for your mother in your home? Or do you make arrangements for her to receive good care in an institution so that you can maintain your career and other important family relationships? No one can make such difficult choices for you. In my own opinion, your responsibility to your mother is to ensure that she has good care, not necessarily in your home or by your hands.
I am a longtime caregiver for my disabled husband. As hard as it has been to care for him all these years, his problems are only physical. We are both petrified that he might develop some type of dementia on top of his deteriorating physical condition. Is this a natural concern of those who are already providing care to a loved one or are we just being paranoid as we get older? If this should come to pass, how do we cope?
For previous generations, cancer was the great, often unspoken fear. Today, dementia is the monster under the bed, especially for graying baby boomers. When we forget a name or lose our keys, we immediately worry that our brains are rapidly deteriorating. While it is true that the older we get, the more likely we are to develop the severe brain deterioration that we call dementia, most of us will never suffer from it. Even among people over 85, only about one in three will become demented. The rest of us will have normal age-related changes — that is, some forgetfulness and decreased thinking speed — but we’ll still maintain our basic cognitive integrity and self-sufficiency.
Whether or not there’s a connection between physical and cognitive disability depends on the etiology of the physical decline. Does your husband have a progressive neurological disease, such as Parkinson’s or multiple sclerosis? If so, then he may be prone to some cognitive changes as his disease progresses. But if his physical disability is related to a non-progressive condition — for example, chronic pain or spinal cord injury — then he may be no more susceptible to dementia than an able-bodied individual. It would be important to discuss any concerns about how your husband’s condition will ultimately affect his mind with his medical specialist or primary care physician.
It would also be important to try to control those medical risk factors — such as diabetes, high blood pressure, smoking and high cholesterol — that predispose all of us to developing dementia. A good rule of thumb is that what’s good for the heart is good for the brain. If you take good care of your body by eating right, exercising regularly, and avoiding excess alcohol and tobacco, then you may be able to lower your chances of becoming demented. Again, ask your doctor for advice specifically tailored for you.
What Can I Do? is a question and answer column aimed at helping to meet the needs of individual readers. Answers to questions in this issue were provided by Barry Jacobs, PsyD, Director of Behavioral Sciences for the Crozer-Keystone Family Practice Residency Program of Springfield, PA. Dr. Jacobs is a clinical psychologist who specializes in family caregiving issues. His first book, The Emotional Survival Guide for Caregivers — Looking After Yourself and Your Family While Helping an Aging Parent, was published in June 2006 by Guilford Publications. Go to www.emotionalsurvivalguide.com to learn more.
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