Caregiving Is Overwhelming: Take Small Bites
By: Karin Pauly
Nobel prize laureate and anti-apartheid campaigner, Desmond Tutu, said, “There is only one way to eat an elephant, a bite at a time”.
Of course, I would never really eat an elephant, but what Tutu meant is that when we are faced with overwhelming tasks in life or when there is so much to accomplish, we can do so by breaking down the ultimate goal into smaller steps.
Caregiving for a loved one should be viewed the same way. Caregiving may include overwhelming responsibilities such as: emotional support, aiding in activities of daily living (bathing, eating, transportation), dealing with housing decisions and oversight, medical care and medication management, legal and financial oversight, end-of-life decision making, and more.
When I work individually with caregivers or am teaching a group, I often assess the situation of the caregiver and the loved one, identifying the key needs, options, and wants. Then, we discuss the many things that need to be done and explored. We break down the steps into the following three categories:
- What is necessary
- What is possible
- What is optimal
How to approach the “elephant” of caregiving
Here is an outline of what might work for you as you approach the “elephant” of caregiving.
Write down a simple outline of the caregiving situation. Include: your loved one’s physical and mental challenges, the housing situation, challenges with daily living, wishes of the loved one, caregiving and support resources, financial resources, and end-of-life plans.
1. What is Necessary
Determine what is necessary to be completed first. This category should be the things that keep you up at night. This should include the issues that deal with safety and health, your loved one’s health AND your health. Examples… your loved one is living in a home that is not safe where there is risk of falling or wandering. Your loved one is not receiving proper medical care or is extremely uncomfortable or unhappy. Your loved one insists on driving when he or she shouldn’t be. Or, your health is at risk and you need to see a doctor or mental health professional or support group. Do you simply need a break to go on as an effective caregiver?
Financial and legal management are areas where there may be urgency. Is it necessary to complete a Power of Attorney (POA) or a Health Care Directive? Does a will or trust need to be completed? Not having these important documents may result in extreme frustration because you won’t be able to manage your loved one’s assets or guarantee their end-of-life wishes are granted.
Relationships and memories – make sure that the tasks of caregiving do not steal from making memories with your loved ones. You may not be able to do everything but know that our time on Earth is limited, and none of us get out of here alive. Know that what you are going through will pass, so say “I love you” and hug if you are in a relationship where this is comfortable. If not, and you don’t have a good relationship with your loved one, know you are doing the best you can, and simply engaging in kind interaction and behavior may be enough. These do not feel like “necessary tasks” yet are the most important for our hearts.
The necessary tasks are the urgent ones related closely to life, staying alive and having quality of life, while having the ability to manage through the myriad of decision making related to legal and financial issues. These are the top priority. These are the things that keep you up at night. Conquering these first will give you more peace as a caregiver.
2. What is Possible
Determine What is Possible – Determine the larger list of what needs to be completed. For example, do you need a plan for housing now and into the future? What are the wishes of your loved one? Do you need to place your loved one’s name on a waiting list for assisted living or a nursing facility, even if it is not yet time for the transition? Perhaps you need to find a new or supplementary physician for a more thorough diagnosis? Perhaps you need to work on your own eating and exercise plan.
Write down what you are able to do as a primary caregiver while managing your own life. Be realistic and know your limitations in how caregiving impacts your work life and your immediate family. If possible, identify “care team” members, those who are committed to taking ownership in the care of your loved one. And even make a list of tasks for those who may ask, “what can I do”, so that when they do ask, you can give them something to do.
The tasks that are “possible” are the ones that will likely take the most time. These are the day-to-day management of living and supporting your loved one – and taking care of you.
3. What is Optimal
Determine what is optimal for living life – for your loved one and for you.
This is the category where you focus on the quality of life for your loved one and for you. It is also where you spend significant time on memories, connecting, and legacy planning. This is a tough one because I feel this could be the #1 priority, but unfortunately it cannot be if there is a safety or health risk, or if financial, housing and medical needs are not met.
There may be guilt for you as a caregiver that you are giving so much to the basics that it is almost stealing time away from the relationship with your loved one. Try to sprinkle in meaningful time when you can. You don’t need to have everything done that is necessary or possible to do this, just make the time when you have the energy to do so.
As a caregiver you have an important role in the health, safety, fiscal responsibility of your loved one, in fact you are likely obligated. This will steal your energy to the point that you are not able to focus on the enjoyable things in life with your loved one. Accept this and know that you are doing what you can. And then be a bit selfish and capture some snippets in time when you can, take some joy, and forgive yourself if it isn’t perfect.
Optimal caregiving experiences are different for everyone! Based on family experience, cultural and religious beliefs, interest, history, etc.
My mom, Nancy, became a vegetarian later in life, yet she did eat eggs, seafood and loved fresh vegetables. The nursing home she lived in did not offer these things to her liking, so when I visited I brought them to her. I could not visit everyday as I traveled for work, but when I did, I brought them to her. This brought her joy.
This was a successful story, so I feel good about this. But, I also feel like I failed in another way. When she went blind, sound was important to her. She loved music and so I would bring her CDs to listen to, which she had difficulty playing due to the blindness, and they were my CD’s, which she didn’t really love. She told me about her music library with her favorite music, and I just didn’t know what she meant. After she passed, and I had the energy to go through her things, I found her immense music collection hidden in a closet, with music she would have loved to hear while dying – and I did not give her that music to listen to. Wow, what a miss, I should have listened and searched but I did not. I have carried this experience, and am working on forgiving myself for not finding it.
My message to you is, take the joy when you can, forgive yourself for not being perfect.
Thank you for doing the most important work in the world.
- Psychologytoday.com, Denise Fournier, “The Only Way to Eat an Elephant”
- “The Caregiver Handbook, Powerful Tools for Caregivers”
- The many professional and informal caregivers who have taught me and supported me