What Happens When a Caregiver Needs a Caregiver?

By Faith Unger
CaregiverU Program Director
AGE of Central Texas

The short answer to this question is “The caregiver doesn’t get a caregiver, and the care receiver may not receive as much care.”  The longer and more appropriate answer is to the question, “How does a caregiver cope with giving care to an individual when the caregiver is also needing care?”

First, here are some tips to keep the caregiver healthy – so the caregiver does not end up needing a caregiver. These tips are under the broad theme of being proactive, of caring well for oneself, the caregiver. One good first step in being proactive is to listen to the body and to be aware of symptoms. Stop and recognize the pain! It’s wise to pause long enough to analyze the unwell feelings. This means considering the answers to two key questions: “Do I need to take corrective action? Do I need to consult with a doctor or nurse?”

It’s important to not fear needlessly seeing the medical staff. I have often put off going to the doctor because of this fear. Going to the doctor means missed work hours, paying a co-pay, and scheduling care for my spouse.  Thus, I overanalyze whether it’s really necessary, more often erring on the side of not seeking medical help. The result is more cost in terms of time and money. Be okay with seeing the medical staff – and there be nothing wrong! That’s all right.  It would be nice to hear that there is not a problem.

Another great proactive step is to make the decision to stay home from work based on what’s best for the body, not what’s on the schedule.  I’ve commonly awakened to feeling lousy, dragging myself through the morning care routine to get my spouse on his bus to adult day care, and then consulting the calendar to see if I declare myself sick enough to stay home.  Wrong move!  Make the judgement call first, and then see what needs to be changed in the work schedule. To do the work expected of me, I need to be as healthy as possible for as long as possible. To make that happen, I need to be proactive.

Beyond the proactive steps are the ways we deal with health issues as they occur. It’s important to take the long view at what will be the best in the long run.  Last year, I became ill and in the quest for good health, did food allergy testing.  Two allergens were identified, and eliminating them from my diet gave me back my health.  Changing my food options was not easy, and it was expensive.  However, looking at my whole health picture, it was necessary.  It felt self-centered to spend more on groceries and rework my food habits, but I do it and am the better for it.  My care receiver has the benefit of a very healthy diet and a healthier care receiver.

This year’s health challenge is a major flare up of a chronic pain issue.  The question has become, “Do we fix the underlying problem or do we try new pain relief ideas?” So far, I’m still trying new pain relief ideas.  Along the way, I’ve sometimes been a cranky caregiver, struggling to manage the household, earn a paycheck, and give good care.

One of the big caregiving lessons that I have recently learned is in how much information to share with the care receiver.  Lesson learned is to share only to inform, not to expect emotional support.  Thus wait to share until the tough emotions have passed.

Another lesson learned is to share only the information that the care recipient can handle, both cognitively and emotionally. That person’s concern will always swing toward your ability to care for him/her.  The caregiver is a security blanket, and that emotional presence is vital to the care recipient.  Thus reassure that care will be maintained – and don’t share the scary stuff.

When having a medical procedure, schedule it for the early morning (if possible), and plan a place for the care receiver to go for the day.  This is when adult day care comes in handy.  At the end of the day, it may also be wise to schedule an in-home caregiver for a couple of hours for the good of both you and the care recipient.  He/she will behave better afterwards, because he/she has been well cared-for.  I’ve arranged this for the last two hours before bed, and it worked well. I stayed in my bedroom, listening to music while reading a good book.  What a soul feeder!

And be sure to gather your own support team to form a circle of support.  Seek out the faithful few who really do care and are willing and able to provide support. There will be others who care in their own way but can’t be supportive right now – respect that and honor their boundaries. With your circle of support, share perhaps in a group email, but do not share excessively, and only when there’s a change or something noteworthy. No daily bulletins; instead perhaps every few weeks if there’s new information. Be interested in their well-being as well and, if you’re the kind who prays, include them in your daily petitions and celebrations.  If questions are raised, answer honestly with as much information as you feel comfortable sharing.  Share the blessings as well as the concerns as you seek to maintain a balance.

There will be times you will need to turn to the circle of support to ask for help.  When asking for help, do it in a way that garners support, not bad feelings.  Start with clearly and succinctly stating the need by using ‘I’ messages. Then describe concretely what needs to be done, giving an amount of time it would take.  If possible, allow the person being asked to set the date and time to assist.

My most common ask is to change lightbulbs – no one at my house can physically do this task.  The last time I asked for that help, the response touched my soul.  I texted out the request before going to church on a Sunday morning. Upon nearing my house after church, I saw the friend waiting in my driveway. He read the help message and came directly, stating that a dark house is a fall risk and he didn’t want a fall to compound the current issues. It felt good to both thank him and send him on his way with homemade cookies.

If the worst happens, and your care receiver needs to be placed in a residential setting while you work to get better, seek help from your small circle of support.  Is there someone there who can transport the care receiver to the residence if you cannot do it? Is there someone who can visit occasionally to give reassurance to the care receiver?

Lastly, there are a plethora of services that can be helpful to the caregiver at this time in his/her life. Groceries and prescriptions can now be delivered to the home.  Drive-a-Senior, a community nonprofit, can provide transportation to doctors and medical facilities.  Some libraries even deliver books!

Eventually good health returns and normal caregiving resumes. Savor the goodness and seek to celebrate with your care receiver.  The two of you have survived a rough patch!  Take pride in your resilience and be grateful to all who supported you. Find ways, however small, to give back.  This is all part of the healing process.