Maximize rewards and minimize stress when caring for aging parents
The past century has seen near-miraculous advances in health, longevity and our ability to cure or manage disease. These advances–as well as our culture’s increasing awareness of healthy lifestyles–have resulted in much longer lives, often lived well for a much longer time.
However, the mortality rate is holding steady at 100 percent. We will all eventually die and the very advances that have prolonged our lives can prolong–and worsen–our dying. Seven of the 10 top causes of death are chronic, gradually debilitating diseases. These days, death is preceded by an average of four years of decreasing function and independence, as well as increasing needs for care and assistance.
Even with the proliferation of options for care, such as assisted living, nonmedical companions, home health and community-based services, much of the burden of caregiving falls to family members, especially adult children. A recent study indicated that as many as four in 10 U.S. adults are providing care for ill or older family members.
Women bear the brunt of this responsibility, but men are catching up. About a third of family caregivers are men, usually spouses, but increasingly sons and sons-in-law. The majority of caregivers are between the ages of 30 and 64, working full or part-time, and many are raising children of their own.
Caregiving can impose significant financial, emotional and practical burdens, especially if the need for care arises suddenly from an unexpected crisis. Medical bills and job loss–sometimes due to caregiving demands–are the leading causes of bankruptcy. About a quarter of caregivers report moderate to severe distress including anger, depression, feeling overwhelmed and even declines in their own health. However, caregiving also can provide profoundly enriching opportunities for repairing and strengthening relationships, personal growth, finding purpose and meaning, gratitude and satisfaction.
Preparation and self-awareness are key to successful caregiving for aging parents. Here are some do’s and don’ts that can minimize stress and maximize reward.
Do
- keep in touch with your folks
- encourage open conversation about needs and preferences
- document decisions and decision makers
- research options for support before you need them
- consider palliative or hospice care when illness becomes advanced
Don't
- make assumptions about what your parents can and can’t do, or do or don’t want
- intervene too much
- assume that it is all a downward slide or that nothing will change
- be afraid to ask for help
- forget to take care of yourself
Do keep in touch with your folks
As your parents age, keep tabs on their well-being. Stay alert to signs of declining function or increasing illness, especially visits to the ER or hospitalizations. If your folks are dealing with a chronic disease, stay as informed as you can about the progress of the illness, how they are managing it and how it might progress. Ideally, you can learn this from them or by going with them to doctor’s appointments. If this is not possible, gather general information from authoritative sites on the internet or your own health care providers.
Do encourage open conversation about needs and preferences
A big mistake many adult children make is waiting too long to ask their parents about their preferences for care and lifestyle. The sooner the conversation starts, the less threatening it will be. A recent poll indicated that 90 percent of Americans agree that having conversations with loved ones about care, especially end-of-life care, is important.
A great tool to break the ice is The Conversation Project Starter kit, www.theconversationproject.org. Having a clear idea of what is important to your folks, what kind of care they want and don’t want, and who they want to speak for them when they can’t will be enormously helpful as time goes on.
Do document decisions and decision makers
Once you have started the conversation, documenting any decisions and appointing an authorized decision maker will help ensure that your parents’ wishes are known and followed.
By completing a Medical Durable Power of Attorney, your parents can officially authorize the person they wish to be their “healthcare proxy” or “healthcare agent.” The proxy or agent will be able to make healthcare decisions for your parents when they can’t speak for themselves, in accordance with their wishes. Specific instructions to the proxy/agent can be included on the MPDOA form or in a separate document, both of which should be kept handy (not in a safe deposit box) in case of an emergency.
The conversation is crucial, but the documents will help confer authority and settle any disputes. Each state has its own versions of these advance directive documents, which you can download from www.caringinfo.org. You should appoint your own healthcare agent and document your own wishes as well.
Do research options for support before you need them
The options available today to support older people or those with serious illness are abundant. However, they also can be overwhelming, especially if you are trying to make choices in a crisis. Armed with information about where your folks are headed medically and what they want, you can gather information about what services are available well ahead of the crunch. Your local Area Agency on Aging is a great start. Many communities host health and resource fairs specifically for caregivers, and Medicare makes comparative information on certain criteria available for hospitals and nursing facilities at www.Medicare.gov.
Your top concerns in evaluating any service should be quality, reliability, value for the price and good fit with your folks’ needs and desires. Get referrals from friends or other trusted sources, and never go against your gut.
Do consider palliative or hospice care when illness becomes advanced
Despite the miracles of modern medicine, chronic illnesses tend to be progressive and many will advance beyond the ability of current treatments to control or cure. Sometimes, treatments can impose more burdens than benefits, even increasing suffering beyond the effects of the disease itself. If your parents are dealing with any serious or progressive illness, ask about whether palliative care is available.
Palliative care focuses on relieving suffering of all kinds and maximizing quality of life even while cure-oriented treatment continues. (For more information, visit Life Quality Institute, www.lifequalityinstitute.org.) If cure-oriented treatment is no longer effective and the person has a life expectancy of six months or less, hospice care focuses entirely on comfort, pain relief, symptom management and emotional, spiritual and practical support for both the patient and the family.
Hospice is a fully covered Medicare benefit and has been proven to improve quality of life, but it often extends length of life. Upwards of 93 percent of families who received hospice care for a loved one have said they would recommend hospice to others. The most frequent complaint about hospice care is that families did not seek it sooner. It is always too early until it is too late. To locate hospices near you, visit the National Hospice Locator at www.hospiceanalytics.com.
Do not make assumptions about what your parents can and can’t do, or do or don’t want
Well-meaning and loving children can be too quick to step in or start providing help that is not needed or not wanted. One approach is to make a list of all the items you think they might need help with and ask your parents to rate their confidence (low, medium, high) in their ability to cope. This will allow you–and your parents–to be more specific about what might be needed. It will be easier to express some desire for help in some areas if they can assert their competence in others. Working through a checklist helps keep emotions in check. Accept their answers and expect to be surprised. You might think they need help with sorting through their medications when in fact it is getting the trash out to the curb that is the biggest challenge.
Do not intervene too much
Unless it is a true safety issue, get permission to help before you jump in. If they say that getting the trash out to the curb is a problem, ask, “Would it help if Joe came by on Thursday afternoons on his way home from school to help with that?” Remember that your folks have lived long lives and dealt with many challenges–and they should be allowed as much self-determination as possible. They have a right to make bad decisions or refuse help unless their actions are harming or could harm others.
Do not assume that it is all a downward slide or that nothing will change
The process of aging and the progress of serious illness are not steady slopes of decline. Some chronic diseases–especially lung and heart disease–are more like roller coasters: Sudden crises followed by remarkable recovery or long periods of stability. Even persons with dementia can go for a long time with no apparent change and then suddenly lose a lot of ground. Changes in treatment can bring about real improvement.
Even at the end of life, there is something called hospice bounce: When patients first enter hospice care, it is not uncommon for them to suddenly get a lot better for a time. Living and dying are never static, so you need to be flexible, willing to give back or take on responsibility as the circumstances unfold.
Do not be afraid to ask for help
Be realistic about what you can really do and take on for your folks, without putting yourself at risk. An occasional “need, nice, nuts” exercise can keep you focused: List everything you are doing to help your folks and ask yourself, “Is this something they really need? Is it something that’s nice but not necessary? Or is it just completely nuts to even try it?” Let’s say your folks need help with meals. It might be nice if you could make a casserole and take it to them a couple of times a week, but it might be really nuts to make them dinner every night and leave breakfast and lunch prepared and in the fridge while your own family eats take-out pizza.
Reach out for support from friends, other family members, your parents’ friends, neighbors and communities. Many people might like to help out, but don’t know how or can only do a little. A very helpful resource for marshalling extra support is a book and website called Share the Care (www.sharethecare.org). The tools will help you identify needs, learn to ask for support and organize the efforts of anyone willing to help. Other web-based tools, such as LotsaHelpingHands.org and Caringbridge.org, can help to spread and ease the burdens of caregiving. There is also professional help available from geriatric care managers or clinical social workers.
Do not forget to take care of yourself
It’s a cliche, but a true one: If you don’t take care of yourself, you can’t care for anybody else. Especially when it starts in a crisis, caregiving can become all-consuming with potentially very serious detrimental effects.
Find ways to rest and get relief as often as you can. Be sure to meditate, blog, journal, take a hot bath or just sit quietly for 15 minutes. Make every effort to eat well, stay hydrated and exercise. Don’t use drugs or alcohol to cope. Do what you can to maintain your life outside of caregiving. Organize backups and schedule a regular time to get out with friends or do fun, rewarding or relaxing activities.
For a more extended break, respite care may be an option. The Medicare Hospice Benefit offers up to five days of respite care to give families a break, and some long-term care insurance policies cover respite care. Other independent agencies offer it by the hour or for full days in Adult Day Care.
Find a caregiver support group or connect with an online community where you can share the tough stuff and the rewards with others who really understand. Find out if there is a caregiver crisis hotline you can call and post the number prominently. Just as you would in caregiving a baby, if you find yourself losing control, leave the room. If you are pushed beyond your ability to maintain self-care, get help from any source you can, such as other family members, friends, neighbors, clergy or adult protective services. In an emergency, call 911. To avoid this, keep tabs on yourself, your physical and mental energy, and any time you feel yourself flagging, take care.
Summary
Having parents age and fail is unsettling emotionally and disruptive in many other ways. Caregiving can be extremely taxing and very tricky to navigate, but it can be deeply rewarding. A major key to success is preparation–keeping in touch with your folks’ needs, talking to them, honoring their preferences, doing your homework, and knowing where and how to get help. Once you are in it, surviving and thriving in caregiving requires vigilant self-awareness and self-care. Caring for those who cared for you completes the circle of life, but it should not break you in two.
