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Survival tips for current and future caregivers

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Caregiver’s Handbook: A guide to caring for the ill, elderly, disabled ... and yourself
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Close to 49 million informal or family caregivers offer assistance of all sorts to adults in America. Their efforts are vital to the lives of people struggling with illness, disability, or the changes that often accompany aging. This report will assist you in meeting the needs of the person you care for while attending to your own. It includes financial, legal, and medical information that’s vital to caregivers, as well as a special section devoted to caring for yourself as you navigate caregiving challenges.

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One day you may find that someone you care about — a spouse, parent, relative, or close friend — needs help negotiating the daily tasks of life. Perhaps that day has already come. Close to 49 million informal or family caregivers offer assistance of all sorts to adults in America, according to the National Alliance for Caregiving and AARP. Their efforts are vital to the lives of people struggling with illness, disability, or the changes that often accompany aging.

The spectrum of tasks that unpaid caregivers undertake is truly vast. Some, such as grocery shopping and cooking, are familiar to us all. Giving injections, changing bandages, calming an agitated parent suffering from Alzheimer's disease, or helping a disabled partner get from the bed to the bathroom can be far more daunting. But through countless unheralded contributions like these, caregivers allow millions of Americans to continue to live as independently as possible.

Talking with your loved one

Discussing needs can be a prickly business. It may be easy for you to imagine what sort of help is necessary, but much harder to discuss it openly or come to an agreement with the person who needs care.

Ask the person in need of care to spell out what he or she believes would help. One way to open a conversation is to say: "I've wondered if you're having any trouble with _______." Or, "I've noticed it is getting harder for you to _______." If offers of help are flatly declined, you might call in a second opinion about the need for assistance. Try talking to the person's doctor or trusted relatives or friends. Their opinions may carry more weight than your own. Some doctors, particularly geriatricians, may be willing to schedule and attend a family conference to talk about what is needed. Geriatric care managers or social workers can also help facilitate these kinds of discussions and present a range of options.

Encourage forethought

Whenever possible, it helps enormously to plan ahead for certain types of assistance, such as good nursing home care and insurance coverage. You might start a conversation by saying: "I read about Medicaid planning in the news today. Do you know about this?"

Be sensitive

In many families, parents never talk to their children — even after they become adults — about finances or health problems. And it is hard to ask sensitive questions of a relative, spouse, or partner who already feels pressured from illness. Raising concerns about your own financial future can make it easier for you to ask your parent about his or her finances. The same tactic may work well for discussing end-of-life decisions. You may find that the person wants to acknowledge these issues. It can be a relief to talk frankly about troubling topics and share concerns rather than hiding them.

Honest talk for tough decisions

Certain topics — for instance, that an individual shouldn't be driving or that it's getting too difficult to continue caring for a person at home — are painful to discuss for everyone concerned. Even so, telling white lies or making promises that are impossible to keep can come back to haunt you.

No one ever wants to go to a nursing home, for example, but instead of pledging that this will never happen, it may be best to promise only that you will try hard to work out other solutions for as long as possible. If you know a nursing home is the best long-term option, it doesn't help to suggest that such a move is just for a few weeks. When those weeks are over, the reckoning and sense of betrayal are impossible to sidestep. It's better to acknowledge that these are hard, sad decisions replete with many layers of loss.

You might put these sentiments into your own words: "I know it's very hard to even think about moving to a nursing home. But we can't supply all the care you need anymore. I worry about you constantly, especially when I'm not available. I've tried really hard, but I can't keep everything going. We need to think about finding a place where you'll be safe and well cared-for all the time."

If appropriate, you might mention concerns about your own health and well-being or worries about what might happen if you become ill or unable to offer enough care. A single conversation is rarely sufficient. Let the person you are caring for grieve the loss. Moving toward a solution is likely to take time and several discussions.

One thing to keep in mind in situations where judgments might differ is that people are often willing to assume a level of risk to their safety or well-being in exchange for autonomy and personal choice. If a loved one chooses to live in a situation that seems too risky to you, you might need the help of a doctor to determine decision-making capacity. If your loved one can fully understand the consequences of his or her decisions then you must abide by them, whether you agree with them or not.