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.

Advertisement

There’s an App for That – Caring Village

In 1996, Hillary Clinton published a book called, It Takes a Village: And Other Lessons Children Teach Us. If you were alive then, you know that the book was about how it takes an entire community to raise children, not just the parents or grandparents, guardians, teachers, caregivers, etc. I would also argue that it takes a village to manage a chronic or serious illness. While the primary responsibilities always seem to fall on one person, the journey wasn’t meant to be traveled alone. It includes doctors, nurses, aides, therapists of all kinds, family members, friends, clergy and many others you may never meet.

I think that many people are so willing to help but (a) either don’t know what to do; or (b) are too busy to do it. Caregivers are also sometimes reluctant to ask for help or cannot give much notice about a request. I know I had the sweetest friend offer to bring food to my house – but not for three weeks! I had no idea what would happen a month from that moment. Things were just so unpredictable at that time. I politely declined.

Things have changed in the past few years, and technological advances give caregivers options to communicate and coordinate with family and friends about care needs. Although there really doesn’t appear to be a one-size-fits-all app out there, we’ll profile several that you can use in tandem or alone to fit your needs.

The first app I wanted to mention is Caring Village. It is free and available for both Apple and Android phones. It also has an online dashboard if you prefer working from a computer.

The application allows you to set up a community, or “village,” for your loved one that includes calendars, to-do lists, a journal, a medication list, a secure messaging feature and a place for documents. As the administrator, you can assign different roles for people you allow to join, which determines their level of access to the information.

Here are some things I thought that were interesting about the app:

• Members – You can ask members to add a photo to their profile so you know who they are. You may not know what your father’s colleague at work looks like. The first time he offers to drive him to the doctor, you can take a quick pic or ask him to upload his photo.
• Wellness Journal – This allows you or others to add a few notes each day (or whenever) about how your loved one is doing. It also allows photographs. When your loved one’s health changes constantly, this could be a helpful tool to keep things accurate.
• Medication List – This would be especially useful when medications are changing or your loved one moves between care facilities. You need to keep track of inventory and expiration dates. Photos are allowed here as well.
• Calendar and To Do Lists. The calendar is nice for the “village” to know of upcoming doctor appointments or procedures or if volunteer items are needed. The To Do Lists have reminder alerts for you and can be delegated to others (ask for a volunteer) for assistance.

It would be a good idea to consider overall how you intend to use the dashboard/app. Even with the most restricted level of membership (“Friends”), there is a great deal of access to the app’s information. For example, if you plan to load sensitive documents to the site (e.g., doctor’s notes from a recent appointment, Durable Power of Attorney, etc.), you may not want a neighbor who offered to drive your husband to the pharmacy to see that information. You either have to choose not to use the document feature or restrict who becomes a member. There is helpful chart in the Help Center about Role Access.

Have you used the Caring Village app? If so, what was your experience?

---

Caring Village, LLC does not sponsor You Don’t Have to Join the Circus (to my knowledge) and was not aware of this post prior to today.

(Photo by Cristina Gottardi on Unsplash)

Caregiver Checklist for Holiday Hospital Stays

Independence Day is next week. While not one of the major holidays like Christmas, New Year’s or Easter, it can still be…quiet…around the hallways of a hospital or extended care facility.

Where I live in the South, this is prime vacation season. The airports are busy, the commute is light, and the weather is hot! If you have the ability to do a little pre-planning before next week, here are some things to consider for your caregiving routine before the long weekend:

• Doctor’s schedule. Will your doctor or specialist be working during the holiday or long weekend? If not, who will be covering in his or her absence? Make note of those changes.
• Your schedule. If you are going to be out-of-town for the holiday or long weekend, do you have someone to visit and check on your loved one a few times while you are gone? When will you go over the routine, condition, doctors, special care concerns, etc. with your substitute caregiver?
• Your contact information. Whether you are in-town or out-of-town, you may want to check in with the nursing staff at the hospital or the extended care executive director or medical director on duty during a holiday weekend. Even if you are a “regular” among the nursing staff, there may be different personnel covering a holiday weekend. It never hurts to introduce yourself or ensure that everyone has your contact information readily available if you are needed. Yes, I know it’s in the admissions records, but a gentle reminder may ease your concerns.
• Hotel arrangements. If you live out-of-town and stay in a hotel, motel, Airbnb, etc. while your loved one is in the hospital, confirm your reservation – or make a reservation – for the holiday weekend.
• Extra activities. Depending on your loved one’s interests, concentration and energy levels, this might be the perfect time time to bring a new book, magazine, movie or activity they can do in the hospital room. The same goes for you. You may not be able to go to the shore this weekend, but you can download the latest summer beach read that doesn’t require a lot of attention on your part or scroll through Instagram to see what people are wearing to the beach.
• Visits/Calls/Video Chats. If your loved one is up for visits or phone calls, ask a good friend or family member to call or stop by. If you or your loved one has a phone or tablet with video-chatting capabilities, this could be a nice alternative, too. While you may be concerned about your loved one seeing others out enjoying their lives when your loved one cannot, you might be surprised at the mood booster such a “visit” can be.
• Healthy Snacks. The hospital shops, cafeteria, etc. may be open as usual, or they may also have reduced hours. If that is the case (or if you just want to do something different or special), you can pack a lunch bag with special treats: a sandwich, string cheese, yogurt, fruit, nuts, chocolates or anything else that is easy to pack for the day.
• Fireworks or Holiday Events at the Hospital. One year, my mother’s room was on the side of the hospital where we could actually watch the downtown Dallas fireworks. Ask around to see if there are fireworks displays close to the hospital that patients can watch. There might also be a parade on a nearby street or something going on in the hospital you and your loved one can attend (e.g., a patriotic concert by a high school choir or a community band).

For those of you who are not able to plan as far in advance, this can simply be an opportunity to be aware of the upcoming holiday and to be thinking of backup plans – especially if you, or people you rely on to relieve you for your loved one’s care, will be out of town for the long weekend.

---

I saw this quote for Independence Day and thought it perfectly depicted the spirit of a caregiver as well. Happy Birthday, America!

“America was not built on fear. America was built on courage, on imagination, and an unbeatable determination to do the job at hand.”

–Harry S. Truman