How to Take a Vacation When You're a Caregiver
You can get away, but it takes some smart planning
Taking care of an elderly parent can be draining. Whether you're the day-to-day caregiver or the child with primary responsibility for emotional and practical support, it's essential that you get some time off to refresh yourself and stave off burnout.
Yet going away can seem impossible. There are so many details and worries to deal with as a caregiver that it might seem simpler to just give up on the idea of a vacation. But there are options.
Anne Albert of Great Barrington, Mass., moved her mother, Rosemary Perry, in with her family after she was diagnosed with rapidly progressing dementia at 78. "It's a full-time job to get someone with dementia going every day," says Albert, 42, who had to stop work as a freelance fashion-shoot producer to take care of her mother, a former nurse. To complicate matters, her mother wouldn't accept help from anyone except Albert. "I was at my wits' end," she recalls.
Planning a vacation with her husband and two preteen daughters was a challenge. The answer proved to be an assisted-living residence that offered respite care, one Anne selected after checking out numerous facilities. "Being somewhere else, my mother had to accept care from someone other than me," Albert says. "She wasn't happy about it, but she found some staff people she liked there."
Late last summer, Albert, her family, and their two dogs spent a relaxing week on Block Island in Rhode Island, where, for the first time in eight months, she was free of caregiving duties.
"You come back with a fresh mind when you're not so immersed in it all the time," she says. "It's easier for me to deal with her and have empathy when I have time for myself."
Who Will Substitute for You?
If your parent can take care of himself, you might only need someone to check in during the day, bring over meals or provide transportation while you're away. A friend, neighbor, or a volunteer from church or synagogue might be willing to do this on a short-term basis. But you will definitely need someone trustworthy to take charge in case of emergency.
"A family member who will fill in for you, who is as invested as you are in your mom or dad, that's ideal," says Maureen Karsen, a social worker at Vanguard Medical Group/Care At Home NJ, a nonprofit that assists the homebound elderly and their caregivers in northern New Jersey.
Start with a family meeting, by phone or Skype if necessary. Get your siblings involved. Talk about your need for respite, what kind of care your parent might need and how to pay for it. Discuss in advance when you will be away and who will be the point person in an emergency. If your parent needs more constant or skilled care, you'll need other solutions.
In-Home Care Options
Here are three in-home care options to consider:
Ask a relative or sibling to stay over. Best case: your parent will be able to stay at home in familiar surroundings with someone she knows and trusts. Jody Schoenfeld's mother Ruth Abramson, 97, has lived with her and her family for more than seven years. Abramson, who is in "pretty good shape," according to her daughter, needs some daytime help but can't stay alone overnight. When Schoenfeld and her husband go away for a weekend, their 35-year-old son often stays with his grandmother. "We pay him the same as we would pay another caregiver," notes Schoenfeld, 62, an artist in Chatham, N.Y.
But it's not always possible to get a relative as a caregiver. A brother or sister might be able call or visit more often during your absence, but feel unequal to the task of full-time care.
Pay your parent's daytime caregiver to stay over. The advantage here is that your parent is already comfortable with that person. Schoenfeld's mother needs more of a companion than a caregiver. When Schoenfeld's son is not available, she hires the woman who drives her mother on shopping errands to stay the night. This past winter, Schoenfeld and her husband spent a week in Amsterdam and two daytime helpers took turns staying overnight with Abramson.
Hire a licensed home care aide. This is the best option if your parent needs a greater level of care. Ask friends or your local senior services center for a referral to several agencies that provide licensed home care aides. The National Association for Home Care & Hospice website maintains a comprehensive database of more than 33,000 home care and hospice agencies searchable by location.
The price for home care varies. In northern New Jersey, where I live, agencies charge $200 per day for a live-in aide, or an hourly rate of $20 to $25. Be sure to pay the aide to come over for a few hours in advance of your trip so your parent can get to know the caregiver — and so he or she will be familiar with your home and responsibilities. "As much as possible, you'd like your parent to participate in choosing the caregiver," says Karsen. "You want them to be comfortable and happy."
Out-of-Home Respite Care
Many nursing homes, assisted-living residences, senior communities and even post-hospital rehabilitation facilities offer out-of-home respite services on a short-term basis, from one day to several weeks. They provide a range of care depending on your parent's needs, from help with daily tasks like dressing and eating to skilled nursing — as well as socialization and planned activities. Some have special facilities for Alzheimer's patients.
Costs generally range from $100 to $250 a night, depending on location. Insurance might cover part of the cost if licensed medical professionals are involved. Ask at the facility what other coverage might be available. This could include veterans' benefits, Medicaid, foundation grants and funding by state agencies.
To find top out-of-home care, ask for referrals from your senior services center or Area Agency on Aging. The ARCH National Respite and Resource Center provides a wealth of information and has a national locator tool to help caregivers and professionals find respite services in their community.
If possible, help parents get adjusted to the environment in advance, says Karsen. "Start with having the person go there during the day and then try an overnight. Make it familiar surroundings for your loved one," she suggests.
Talk to an Aging Life Care Expert
An aging life care professional or ALCP (formerly called a geriatric care manager) can be a knowledgeable guide to figuring out the various choices — as well as someone to oversee the parent's care and be the point person in an emergency.
Dianne McGraw, president of the Aging Life Care Association, says: "An ALCP can tell you what the options are, talk about local facilities, make visits to the older person while you're away, monitor a parent who has a home care aide, and be on call in case of an emergency." The fee depends on the area of the country. In New Orleans, where McGraw is an aging life care professional with Home Care Solutions of New Orleans, the cost is $125 an hour.
McGraw, who has been in practice for 25 years, recalls, "I was with one of my clients in the emergency room on a New Year's Eve. The family was away but not out of reach. I wasn't permitted to make a medical decision, but I was the liaison and representative for the family. We got the family on the phone, and the patient was admitted to the hospital."
Important Information to Keep on Hand
No matter where your parent stays in your absence, says McGraw, it is essential to organize important information for whoever is providing or overseeing care. Make a notebook or folder that includes the following:
- the primary and secondary emergency contacts
- a list of other family contacts
- a list of physicians (with their phone numbers and addresses), the preferred hospital and the pharmacy
- a list of all medications and which doctor prescribed them
- documents, including power of attorney, living will, advance directives, and Do Not Resuscitate (DNR) orders
- insurance cards
"Keep everything together so the caregiver can grab it and go if they need to get to the hospital," McGraw advises.
Dealing with Guilt and Anxiety
"Caregivers feel guilty about taking that respite," says Karsen. Some guilt-producing thoughts include: "Nobody can do it the way I do it," "Mom is used to me," or "If something happened I could never forgive myself." Indeed, a parent can be so resistant to your going away that you don't pursue it.
When my mother was ill during the last five years of her life, she experienced tremendous anxiety when she knew I was away from home. I remember having a three-day work assignment just a few hours from where she lived and getting dozens of worried phone calls from her, even though she had a full-time live-in aide.
Afterward, the aide recommended that I simply not tell my mother when I went away and I ended up going on a couple of short trips without informing her. I called every day but made excuses for why I couldn't come over. I disliked the duplicity, but it saved my mother enormous psychological stress. It also saved my sanity.
Even when parents are agreeable, they can still get anxious as the time approaches, Schoenfeld says.
McGraw advises you don't announce your planned trip three months early. That could create more anxiety.
Taking a break from caregiving is a necessity, notes therapist Karen Levine, who practices in Great Barrington, Mass. "You carry the weight of the responsibility in your heart and mind. Leaving on vacation gives a different message to your brain and heart," she notes.