Caregiving 101

I have more experience doing this wrong than most people will ever have, fortunately. So, I have some thoughts to share, especially while my wife is beginning post-op week number two following her second knee-replacement. These thoughts are written from the perspective of being a spousal caregiver of someone that has multiple health issue. I think many of these things are universal, as they correspond with my experience recovering from brain surgery.

  1. Accept that no matter you do, it is mostly going to be wrong at the time it is done because your patient is in pain and/or out of sorts.  Learn to let most criticisms go. Those that matter are those that cause or increase pain.
  2. Your patient knows more about what hurts than you do. Let them guide you.
  3. Sometimes you will cause pain and you don’t have any choice. Save your own tears for later and do what you have to.
  4. Keep your cell phone close, at all times.
  5. Bath time is scary. Have a plan. Bathrooms may well be the most dangerous rooms in the home, even those that are accessible like ours, with plenty of grab bars. Figure out what you are going to do and be prepared for any possible slip.
  6. Don’t help until you have been asked. When my wife brought me home from the hospital after two weeks in neuroscience ICU, I had to find it within me to to get up the three steps to the porch. This was a major challenge and accomplishment at that point. Too much help delays healing and interferes further with your patient’s sense of independence and agency. If your goal is to return your patient to independence, the more you do only what is needed, the quicker this will happen.
  7. Learn how to fall properly. If you have a patient with mobility and balance problems, your first responsibility will to keep them from falling. If they fall, you may well go with them. There are ways to fall and not to fall.
  8. Have a plan if a fall occurs. I can’t lift my wife and I am pretty big guy and am reasonably strong. But I can help her into a sitting position and help her move up into a chair or wheelchair with a series of small platforms or step-stools. I can also call 911.
  9. Know your own limits. Plenty of caregivers injure themselves, back injuries are not uncommon, from attempting to do much. This also applies to your medical knowledge, primary lack thereof.
  10. Make routine those things that can be. A schedule is helpful.
  11. There is a reason hospitals use little cups for pills. It makes it easier for the patient to take and for the caregiver to organize.
  12. If there are multiple prescriptions make sure you speak with your pharmacist about interactions – including if there are timing issues about when to take what.
  13. Be prepared for a whole new level of intimacy.
  14. Take care of yourself. Self-maintenance is a necessity to be an effective caregiver.
  15. Be safe. If you are sole caregiver, and sole support, you have a tremendous responsibility for your loved one. Don’t. Be. Stupid.
  16. Communicate clearly and often. Make sure your patient knows if you need to work, do self-care, or shop.
  17. Use respite care, friends, and family to help as they can, but realize that your 110 pound grandma or Aunt Grizelda can’t keep your 200 pound patient from falling…or help her up.
  18. Recognize that caregiving for an adult is a lot like being a single-parent to an unhappy toddler. You will have to use sleep time for self-care, including bathing or just a cup of coffee without disturbance.
  19. Sleep when you can.
  20. It’s not easy, it is just love.