As summer approaches and travel resumes, it is not uncommon for family members with loved ones in long-term care to ask this question as they try to decide whether or not to take a vacation…whether that is going on a long-planned family holiday for a few weeks, spending a couple of nights away in a bed and breakfast or anything in between.
Let’s start with what can keep people from even considering a getaway and then look at four important things to consider once you have decided you want to plan for a break.
The role of survivor guilt in deciding whether to go or stay.
Survivor guilt is a complicated, but very normal response to the illness of a loved one that often manifests as a reluctance or inability to enjoy oneself while others are perceived to be suffering. It may stem from a sense of obligation to ‘suffer with them’ by making one’s life smaller, by limiting joyous occasions, or perhaps by choosing not to take breaks or holidays that involve being away from the person who is ill.
Survivor guilt cannot be simply dismissed by someone saying ‘Oh, you shouldn’t feel that way, just get over it.’ If you find yourself struggling to reconcile a wish to get away with feelings of self-recrimination for wanting what your loved one cannot have, consider the possibility that survivor guilt is affecting your decision-making process. A process of self-reflection may allow you to explore these feelings, consider their origin and decide whether or not they serve you well. It can also be helpful to talk to counseling staff at the facility, to ask for reading material on the subject, or to bring up your concerns in a family support group. Ultimately, however, there is no right or wrong answer, and ‘Should I go or should I stay?’ is a personal decision that you must make for yourself.
Once you have decided to seriously consider a holiday, there are four things you can do to help ensure that your time away is actually the restorative, relaxing break you envision.
1. Understanding the nature of change in a long-term chronic illness
Perhaps the most common question family members ask if they are planning a break is, ‘Will my loved one be ok until I get back?’ In other words, they are asking for reassurance that everything will stay the same while they are gone. Often there is an underlying assumption that because the person’s condition has remained the same for a long time, or the decline has been slow, or there has always been a rally after every ‘bad spell’, then the rate of decline will remain the same indefinitely.
However, the reality is that even after years of slow decline, the condition of a person with a long-term chronic illness can change dramatically. Therefore, the expectation that staff can make a 100% accurate prognosis or absolutely guarantee that ‘everything will be fine while you are away’ is not realistic and can give you a false sense of comfort that prevents you from preparing for an important ‘what if’. Once you accept the possibility that change in a person’s condition can occur unexpectedly, then you can be realistic about what that means for you in the context of planning a vacation. Obviously, if you felt like you could never forgive yourself if you weren’t there when the person died, this information would affect you differently than if you felt that you could be comfortable with that possibility. The key here is about making an informed decision based on a realistic ‘what if’ rather than trying to get a guarantee from staff that they can’t actually give you.
2. Saying goodbye…or not
Like every part of the decision-making process related to temporarily leaving a person in long-term care while you take a vacation, deciding if and how you say goodbye to the person who is ill is deeply personal and dependent on many factors including your history and relationship with that person, their level of cognition and understanding, your own comfort level with saying the words or how you think it will affect the person who is being left. You might choose to leave something in writing that the staff could read to the person, a calendar with the dates marked for when you leave and when you will return, or a picture that allows the person to feel close to you. You might want to become informed about the ability of people to hear even when they are unresponsive and even get suggestions from staff about their ideas given their knowledge of the person and their reaction to change and loss.
3. Making a plan for the ‘what if’
Another important decision is whether or not you want to or can be reached if there is a change in the condition of the person in care. You may choose to leave things in the hands of staff if something happens, or perhaps you will simply not be in a location where you can be reached. Either way, it is important that you leave staff with clear instructions and guidance as to your expectations and if appropriate, the name and contact information for the person(s) who will be able to make decisions on your behalf.
Of course, the key here is to understand that while you are away, you cannot control every eventuality, so there needs to be a willingness to trust that staff will do their best given the options available to them.
4. Making the most of the vacation
Once you have considered all of the above and decided to take the holiday you want and need, don’t sabotage yourself by second-guessing your decision or by letting survival guilt manifest itself as constant worrying or a refusal to actually allow yourself to experience the benefits of being relaxed and refreshed. When a person is ill and living in long-term care, family members often find it difficult to do self-care, to embrace life, to continue to have fun and to acknowledge their ongoing need for joy and pleasure, and yet these are basic human needs that foster the emotional and physical well-being that actually make it possible for them to continue provide support and care sometimes for months and even years.
The key is to make the best, most well-informed decision you can at the time, to be clear about what you can and cannot control, and finally, to choose not to revisit the decision in hindsight.
Then relax and have fun.