A Patient’s Perspective: Things I wish my Eldercare Provider Knew

by | May 5, 2016

The feedback I received from my blog post on caregiver fatigue reminded me of an important set of facts I have learned in therapy with both patients and caregivers.
  • First, people with serious and chronic illness are incredibly grateful that they have consistent, supportive caregivers, but that gratitude is part of a complex emotional mix.
  • Second, there are times when an illness significantly complicates communication in a relationship.
  • And finally, it can be tough for a person dealing with illness to convey to their caregivers how they most want and need to be helped.
This post includes a “cliff notes” summary of feedback I have heard from many people facing illness. I hope it opens the door for an eldercare provider to ask questions (and give answers) that might deepen their relationship with the person they care for.

Complex Feelings

Older Adults with serious and chronic illness are incredibly grateful for their caregivers. This may seem obvious. An eldercare provider often makes significant sacrifices in order to provide care and support. It seems like it just makes sense that the person who is receiving care would be grateful. This gratitude is complex, however. Many people facing illness are frustrated that they need care. Many people living with illness are grieving their own health. Many people who need caregiving struggle with a resentment of the healthy—nothing personal, just a painful combination of jealousy, grief, feeling like a burden, and a wish for their own health. Because human beings are complex, and capable of complex emotions, many people with illness feel all of these things at the same time. So the gratitude that patients truly feel may not show at all times. Or it may be mixed up with all of their other complicated feelings. If you feel like you have been getting mixed signals from the person you care for, you may be spot on. You may be getting a front-row seat to the roller coaster emotional ride that they are on.

Complicated Communication

When you combine the complex emotional experience that people with illness are having with the complex emotional experience that caregivers are having, you have the chemistry for some very complicated communication. Communication is a challenge that all of us have to navigate in our relationships. We have to help our partners and loved ones understand what words like “help, support, encourage, and love” mean to us and how they look in action. When you add serious or chronic illness into the mix, that adds layers of medical appointments, medication management, changes in household functioning and more to an already challenging process.  Don’t despair. Communication can get better and stronger in the face of health struggles. It just takes awareness and effort from both parties.

I Wish You Knew…

So now what? Well, now we get to the final fact. It can be difficult for a person living with illness to effectively communicate to caregivers how they most want and need to be helped. I have been working in this population for over ten years; and here are a few things that come up again and again in the list of, “things I wish my eldercare provider knew:”
  • Illness steals independence. This might seem obvious, but the loss of independence can be even more hurtful than physical pain. Loss of independence can be increased when those around a person with illness rush in to help before checking with patients about what they need.
  • Sometimes needs change from day to day. Many of the folks I talk to have conditions that don’t impact them in a consistent or predictable way. One day they may be able to run a 5K. The next, they may be in too much pain to get out of bed.
  • Physical difficulty does not always equal mental difficulty. All too often, if someone has been ill for a long time, people around them are at risk of treating them as less adult or mentally independent than they are.
  • The general public can be a gauntlet of invisibility or over concern. This is particularly true for people who have a visible marker of illness (wheelchair, brace, etc) or who are in a community that is aware of the illness. Going out in public can be a trial.
  • Being sick is not a vacation. This also may seem obvious. But, if you have run the household and held down a job and been the medical coordinator for months or years, it can start to feel as though the person you care for is getting the easy end of the deal. Every person with a serious illness that I have worked with wants to be healthy; they would love to go to work. They might even love to scrub the toilet. They want to be helpful and engaged.
  • Patients want their eldercare provider to do self-care. It’s hard enough to need the help. They don’t want you to kill yourself providing it.

What an Eldercare Provider Can Do

With all of that in mind, here are a few tips for caregivers on navigating the labyrinth of emotions and communication challenges that serious illness delivers:
  1. Start with communication.
  2. Check in about today’s pain and mobility levels.
  3. Ask if there are things that the person you support needs from you or wants to try on their own today.
  4. Challenge yourself to continue including the person you support in decision-making, planning, and other activities they would have done without you when they were healthy.
  5. Share your own plans and ask if those match up with your patient’s needs.
  6. Ask the person you support about their concerns for public events. Don’t strand them.
  7. Check in with yourself to see if your fatigue has led you to be short with your patient or to feel as though they are “taking advantage.”
  8. Do good self care. If you aren’t okay, you can’t provide for them.
Finally, remember that you aren’t in this alone. If the communication is bumpy, let someone help with that. Get support from groups, friends, and/or a psychologist. Get it for you and for your patient.  If you would like to learn more about offering proferssional eldercare, please check out CareAcademy’s newest, online eldercare classes

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