"Mom, you can move in with me," the daughter exclaimed, "You know this."
"You're already so busy," her mother replied, "and I don't want to be a burden."
Hearing a loved one requiring increasing amounts of caregiving assistance say that they don't want to be "a burden" can generate conflicting emotions. The first impulse may be denying the statement out loud, an automatic "No, Mom, you're not a burden."
What follows may be any number and type of emotions, such as exasperation over your loved one not agreeing to what may appear to be the most logical caregiving solution to you; frustration over not being able to argue against your loved one's feeling; sadness that your previously physically capable, strong, and active loved one is acknowledging in their own way that their ability to care for themself may be changing; fear that "not winning the argument" about altering your loved one's caregiving situation may result in a future fall or other medical emergency; worry about your loved one's overall health and decline; and/or pensiveness as you wonder if you will be having this same conversation with your own children one day with roles reversed.
Caregiving family members and close friends may feel guilty because at times, they may secretly agree that some aspects of caregiving are burdensome. Waking up three or four times every night to assist your loved one to the toilet, taking time off from work to drive a loved one to appointments, receiving yet another phone call about your loved one's visit to the emergency room, having to stay in every night to supervise a loved one or keep them company - these caregiving activities all require time, attention, physical presence, and/or money, possibly even forcing a family member to divert time and attention away from other loved ones.
Sometimes when our time or patience is short, we can unintentionally make our loved one feel less than as we try to impose our own agendas on them. If you find yourself frustrated with your loved one, automatically responding, "No, you're not a burden" at that moment may not come across as genuine sentiment. Consider, instead, telling your loved one that you would like to talk to them about their specific concerns in the near future (when you are neither in a rush nor feeling impatient or irritated).
When you are ready to talk, either at that moment or at a later time, the following are suggestions for how you could respond to a loved one when they say, "I don't want to be a burden."
(Note, if you are at the beginning stages of attempting to discuss setting up help for your loved one at home or changing your loved one's living situation to increase caregiving help and supervision for your loved one, you might want to have ready several caregiving options to propose to your loved one.)
1. Validate how your loved one is feeling. Though you may not agree with or understand what your loved one is feeling, their emotion is real to them. Validating their emotion is one way of demonstrating respect for their input. "I know you've always said you don't want to feel like a burden."
2. Explore what your loved one means by being "a burden." Different people may define being "a burden" differently. The following are examples:
- their adult child using their own money to buy medications, supplies, equipment, and groceries for them
- their adult child spending increasingly more time checking on them, which they may equate with less time their child has for their own family
- their adult child taking time off work to stay home with them or to drive them to doctors' appointments
- their spouse getting less rest and time for themselves and their social life
- their spouse developing physical strain such as back or shoulder pain from the physical aspects of caregiving, such as pulling someone up from a chair
- their adult child or spouse constantly worrying about them
Ask your loved one "What exactly would make you feel like you were a burden?" and paraphrase what your loved one says to demonstrate that you are listening.
3. If you genuinely feel that the caregiving is not a burden, consider openly communicating this. You may admit that though some aspects of caregiving can be a lot of work, that the caregiving does not seem like a burden to you.
"This is just us being a family. This is what family do for each other, whether we're 8, 38, or 78."
"None of this is a burden to me. This is just making adjustments to our lifestyle. "
"You did so much for me way back when, and you never made me feel like a burden to you. I feel the same way. I want to be a part of your life, which might mean checking on you/catching up as we drive to appointments together/helping you shower so you feel secure in the bathroom. This is not at all a burden to me."
"Honestly, I feel good that I get to do this. I'm glad I can help."
4. If you genuinely feel that some aspects of the caregiving are burdensome, consider openly communicating what is working for you and what is not. Sometimes stressful caregiving over time can result in a sense of caregiver burden (read Post 42: Thirteen Suggestions for Coping with Caregiving and Decreasing Risk of Burnout). Even if one starts with the best of intentions, prolonged unrelieved caregiver burden - and especially caregiver burnout (read Post 41: Is This Caregiver Burnout? - 20 Signs of Potential Burnout) - can result in a family member or close friend primarily expressing impatience, irritability, anger, resentment, frustration, or apathy with their tone of voice, words, or gestures. It could cause long term negative effects on a once close relationship and indeed make a loved one feel like "a burden."
Open communication may be key in a maintaining a close relationship with a loved one who is requiring more and more caregiving (in Post 39: Seven Steps to Talking with Your Family if You Feel Like a Burden," I also suggest open communication for the person who feels like a burden).
Proposing other realistic caregiving options and actively considering your loved one's input could go a long way in demonstrating respect for their opinions. "It's very important to me that you feel safe at home, that you don't feel anxious that you'll fall and no one will be around to help you. I thought coming over every night would help...Honestly, it's not enough AND the kids are acting up without me with them at night. I think we'll need to come up with something else, like hiring someone to stay with you at night alternating with me staying with you or you coming over to my place at night. What do you think?"
5. Treat your loved one with dignity. Sometimes well meaning family members and close friends may
- talk over a loved one ("Hold on, Mom, we're trying to figure out who can come over to fill the pillbox when I'm out of town next month.")
- exclude a loved one from participating in family activities and events ("You rest over there, and don't worry. We'll take care of the decorations and cooking.")
- use a patronizing tone ("You don't need to take up any more of the doctor's time. I'll explain everything to you when we get home.")
- talk only about what a loved one has difficulty doing instead of focusing on what their loved one can do ("How are you, Dad? Are you remembering to use the walker every time you get up? You don't want to fall!").
Our tone, word choice, and actions may not align with the message we are trying to convey to a loved one who feels that they are being "a burden." Speak with your loved one as you would any independent/hard working/proud/resilient person as this is likely how your loved one views themself. Preserve as much as possible your relationship of trust and respect with your loved one.
Suggesting potential changes to the day to day living situation for a loved one who is declining in strength, balance, stamina, or mental ability can be difficult, and family members may not be sure how to respond when their loved one comments, "I don't want to be a burden." I hope some of the above suggestions are helpful if/when you find yourself having this conversation.
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