18 November 2012

Day 18: Advice from a patient to a spouse-carer

Day 18 – Sunday, Nov. 18
“I want to change THIS about healthcare…”
Write about your advice for someone caring for a patient with your condition

To the spouse who cares for a patient with M.E. or Fibromyalgia:

Be gentle.

Touch can be healing. Massage is often the best thing for pain. Sometimes just laying your hands on can help.

Except when we're so over-sensitized that they can't bear to be touched. Try not to feel rejected when that happens. It isn't personal.

Be willing to turn off the tv and radio and everything else and just keep a quiet house on the bad days.

Let your spouse comfort and care for you when they can. We still want to feel like a genuine partner in marriage.

Sometimes it's just easier if you make the decisions, like going ahead and running the bath rather than asking 'Would a bath help?' Sometimes it's infuriating to be denied our own choices. Every patient will have a different threshold for this, so you'll have to learn where that point is for yours.

Don't be surprised when we suddenly goes from seemingly fine to crashing. You can try and learn the patterns and try to catch it in advance, but sometimes there's just nothing you can do.

Find out where the medication is and how to administer it. Know how to reach the doctors. Be prepared for the Really Bad Crash before it happens.

Don't blame yourself.

You'll have to be creative as a couple to keep the romance and sex alive. There are lots of ways to give one another pleasure besides traditional intercourse. Explore them to find what works for you.

When pushing a wheelchair, always make sure the brakes are on before your patient gets in or out, or before you let go of the handles. Doubly so if there's a slope.

Communication is vital. Marriage and caring is a difficult combination. Don't let the caring destroy the marriage.

Talk slowly. Wait for answers. It takes us longer to think than it used to. Don't try and discuss serious things on a bad day or when there's limited time.

Look for joy and appreciate it whenever it appears.

Care for yourself too. Remember the airline instruction about putting your own oxygen mask on before assisting others.

Be gentle. I can't stress this enough. Not just with us, but with yourself, and with the world.

1 comment:

  1. Such wise and compassionate advice.
    I can't imagine how hard our illnesses and limitations must be for our loved ones. As hard as it is, sometimes, to be me, I would much rather be in this body than in the one having to watch as I struggle day to day.
    I would add one other piece of advice, one I must say over and over to my own hubby: Go...do...and do not feel guilt at leaving me behind. Not all the time, or even every time activities are offered. But do not give up your interests in life simply because I no longer can participate.

    You, my DD are wise beyond your years. :)