Even Caregivers Need a Break

When I saw this sign in my neighborhood, it reminded me a little bit of the caregiver journey. Monarch butterflies travel up to 3,000 miles to reach their summer or winter homes – and they only do it once. A tiny butterfly cannot travel that far without stopping to rest and refuel during such a long trip. As a caregiver, you may have, or are already experiencing, a long journey ahead. To maintain your physical, mental, and emotional health, it helps to plan periodic rest breaks along the way. What that looks like can take on different forms.

Acceptance

If you aren’t already dashing off a text to someone to help or scheduling a quick getaway, then you may be struggling with the idea of letting another person take over for you. I know I did. I had lots of reasons for staying “in the game.” Here are some possible concerns you may have:

• Guilt and/or Fear. Maybe you feel like this is your responsibility, and, to delegate your caregiving responsibilities to someone else, even for an hour, would be wrong. Your visits may elevate your loved one’s mood or improve his or her vital signs. There could also be the fear that something could happen while someone else is there (a medication mistake, a fall or even death), and it would have occurred because you chose not to be, or were not, there.
• Fatigue. You would like to take a break, but you are too tired to find resources or to ask for help. It is true that our brains do not work as well when we are tired or exhausted. In this case, you seem to be fighting a vicious cycle of needing rest to find someone to help you get rest.
• Isolation. If this is a long-term illness, your friends’ and family’s eagerness to help may have lessened with time or you may have lost touch. A long absence may make it seem difficult to suddenly approach them for assistance.
• Needing to be in control. This was one of mine. There were so many things beyond my control, I just wanted to hold onto the things I could manage. Looking back now, I realize I overlooked some prime opportunities to allow others to help and to give myself a break.
• Lack of Boundaries. Some loved ones can be overly demanding – even in ill health. If you are not sure about what your limits are, a persistent loved one can take over a good part of your life for you.
• Lack of Resources. Resources could include financial, community or medical.

The Case for Scheduling Breaks

Caregiver burnout is a state of physical, emotional and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically or financially.

The Cleveland Clinic

Caregivers are amazing creatures, but we are not invincible. Caregiver burnout is real and manifests itself with mental, emotional and physical symptoms, such as depression, irritability or getting sick more often.

I recently read an article where a woman, who was caring for her mother, said she hated it when people told her to take care of herself so she could be there for her mother. Perhaps what she needed most was someone to offer to help.

A Simple Exercise

I believe most people genuinely want to help, but often don’t know what to do or don’t want to impose. Here is a simple exercise to get you started to connect sincere “helpers” with you as the caregiver.

Take a sheet of paper or a blank page on your computer or notes app on your phone. Title it, “Ways Friends/Family Can Help.” Begin listing tasks or treats that could help you. Here are some ideas to get you started:

• Bring a meal for the freezer
• Drive Mom to physical therapy on Tuesdays (or one Tuesday)
• Purchase a bag of sugar-free candy for Dad
• Invite child for an outing or sleepover
• Take/pick up dry cleaning
• Wrap birthday/holiday present(s)
• Bring snack or drink and sit with me for 30 minutes
• Call me every Wednesday for 10-15 minutes
• Check loved one’s house to ensure it is secure and looks lived-in
• Take pet(s) for annual exams

Keep this list with you (on your phone, in your purse, in your car). The next time someone offers to help, briefly scan the list and see if there is something you would be willing to let them do – or let them choose an item on the list.

Future posts will discuss apps for organizing friends and family helpers as well as developing a respite care plan and finding respite care resources. Until then, if you need additional ideas for your Helper List above, the Alzheimer’s Association has a really good list of ways to support caregivers that might help you along.

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How Much Should Caregivers Share on Social Media?

Social Media is a part of most peoples’ daily lives. It is how we interact in our relationships and obtain information. For you to not use Social Media as part of your caregiver updates might be challenging today, although not impossible. However, before you post on Facebook that riveting photo of your loved one’s 35, albeit dissolvable, sutures across his leg, you may want to discuss what is shared about his surgery and what is kept private.

Here are a few reasons for possibly showing some restraint:

• Do you and/or your loved one want unsolicited advice? It just seems like human nature that we automatically want to tell someone about what happened to our brother’s aunt’s sister’s neighbor’s dog’s cousin who had the same thing and died from it two months later. I’m embarrassed to admit that I’ve done this, too. It is obviously meant as a desire to help. However, if you and/or your loved one don’t want, or need, to hear these stories, you may choose to keep some of the details of his or her condition private – at least, for a little while.
• Serious illness is sometimes not pretty. Let’s be honest, serious illnesses are not easy on the person who is sick or on the one who has to watch them go through it. After awhile, a caregiver can become desensitized to even the toughest situations – because you have no choice. I have seen people write or talk about their loved one’s vomiting, diarrhea, fainting, nakedness, hallucinations, odors, adult diapers and all kinds of other things as if they were discussing the weather. If you have gotten to that point, you might want to consider having someone you trust be a sounding board for broader Social Media posts before you share something that might later embarrass you or your loved one. While I’m not about sugarcoating the truth or hiding the very real suffering involved in serious illnesses, you may want to reflect on where your line is between transparency and the dignity of your loved one.
• Do you have all the facts? If you receive bad news or difficult information, it may be better to take a little time to process what you’ve heard before sending a message out on Social Media. This might be a good time to also allow someone else to speak on your behalf who has some distance from the situation and can contact the right people at the right time.
• Is your loved one still working? If your loved one is on a leave of absence from work and/or on short-term disability, employees are generally expected to check in during their absence. Most employees want to keep those conversations professional and factual. However, if colleagues have access to Social Media posts about your loved one, you should consider what details are being shared with them. You would be amazed what people tell their manager about what they see on Social Media (see the second bullet-point above). If you include work colleagues on the Social Media account, you need to assume the information may (and likely will) get back to your loved one’s boss – no matter how well-intentioned their motives may be.

In my experience, my family released information about my mother based on a tiered system. A small group was part of the inner circle and had access to the most information. The next tier was slightly larger, had fewer details but knew about appointments, her location, etc. The final group was the largest and was made up of neighbors, friends, coworkers, church members and extended family. This group receive frequent updates on her condition, both good and bad, but not with excessive details.

Given some of the apps and tools available today, I think there are ways to differentiate the intensity of the message so that the right information reaches the right people in your loved one’s life without sacrificing the level of privacy you may wish to maintain. We’ll discuss some of those tools in upcoming articles.

How have you used Social Media in your caregiving duties? Do you think privacy is even important today?