Holidays can be a time we look forward to or dread. Emotions and expectations run high as we wrap up one year, and begin the next. If your holiday responsibilities are coupled with giving care to a sick loved one, this may add yet another layer of considerations.
We all have our beloved holiday traditions. Recalling these can be a source of fond memories. The desire to recreate these familiar customs could create a set of expectations that might need to be adjusted for someone who is ill in order to include them with whatever limitations they have. For example, food is a common part of shared family activities at this time of year. A seriously ill patient may have factors that make it difficult for them to even eat or drink. They may have difficulty swallowing, nausea, have mouth sores, or simply no appetite. Making
adjustments such as leaving out certain spices, pureeing/thickening food, or just including them in a toast allows for recognizing them along with their struggles and includes them.
You don’t need to reinvent the wheel in figuring out some of these creative solutions. Ask those members of the caring team to help you, whether it be a visiting nurse, a hospice volunteer, or the patient’s clinician.
Keep things light and simple!
Here are some basic ABC’s to get you through the holidays:
A) Adjust your expectations, and accept what is possible
First know what you want, and then tell those you are sharing the holiday with, what those things are. Prioritize as other family members might have their own wish list, and compromise is key! Try to find a way to get what will make you happy in a way that works for those with limitations due to illness.
Don’t set yourself (or others) up for disappointment. If what we seek is unrealistic or too ambitious, it is a sure bet for failure. Yet, if we are pragmatic, chances are our cherished festivities will be fun rather than follies. For example, your perfect day may include a hike and then watching a holiday show on television. If your loved one is minimally mobile, a hike is not realistic for them. Out of guilt, you might skip the hike. Out of feelings of being a burden, the sick loved one could encourage you to go. No win-win’s there! Could you take the family dog, and Skype or make a video call from your mobile phone using FaceTime or another video chat application to your loved one at home? Including them in your experience, even if only virtually, could be very enjoyable for them, and they get to be a part of your outing in a way that’s inclusive, and meaningful. Once back home again, playing back the video call for everyone is another meaningful, interaction that all of you could enjoy.
B) Be open to giving, receiving, and being grateful
Ask and tell. It may sound over simplified, but I assure you it is not! Others cannot
meet our expectations if they do not know what they are. Likewise, we cannot meet someone else’s expectations if we do not know what they are. Get rid of the idea that if someone loves us, they will know how to take care of us.
This is even more important when someone is ill. Their usual needs may be different moment to moment given their symptoms physically, mentally, and emotionally.
Pain management is one aspect of patient care that can seem like a roll of the dice. Sometimes shooting too high, and sometimes coming up short. We are all aware that what one person can tolerate as discomfort, another could not. Our recommendation? Ask them straight out: what are your goals for your pain control management? One patient we spoke with during a consultation told us that she was an avid reader. Even though it appeared to her caregiver as if she generally was lying in bed barely conscious, she explained that she simply wanted to be able to arouse long enough to occasionally wake up, read a few pleasurable pages, have minimal pain, and fall back to sleep again. What clarity!
Being in the moment, like this patient taught us, helps us to not dwell on what could have been or what will be. Taking time out to see the joy in what is often creates the effervescence we all need.
C) Care for the caregiver
Demands of carrying out our own daily activities, especially during the holidays, may become overwhelming when we add assisting someone else through their day as well. Again – keep it simple and remember the basics. Adequate hydration, nutrition, and sleep can go a long way in nourishing our inner resources and strength. It is like when we are instructed on airplanes as adults to strap on our oxygen first, and then help those around us. If we do not take care of ourselves, we are truly not in a position to care for others. Sometimes our loved ones that are ill have chronic illnesses. This truly calls for a marathon approach and a clear strategy for maintaining good health for ourselves over time. This is different when we have to rally unexpectedly for an emergency situation.
Know the signs of caregiver burnout or depression, which may include:
- Unable to sleep or sleeping too much
- Overindulgence of food or alcohol
- Loss of appetite
- Loss of pleasure in things we normally enjoy
- Having more moments of feeling down than feeling at peace or happy
- Having excessive worries
If you recognize these signs of stress in yourself or your sick loved one, get help. Friends, other family members, and community, as well as health care professionals, can be a resource for you as well as for your sick loved one.