WATERMARK

Several months ago I posted a piece on Illness Etiquette, based on a post by Karen, whose husband had been recently hospitalized. She said I didn’t think that this would be necessary – but it is. . .

A commenter asked:

"Thanks for this information – it’s very helpful. I was wondering,
though, if you have any "Do" suggestions. Most of the suggestions on
the list are "Do Not" or "don’t go in" or "leave when they’re tired".
I’m glad to know that. But when it is appropriate to visit, what should
I do then?"

I
started a draft, and then was stuck for some time. I was stuck in
resentment, I’m sorry to say; holding tight to small wounds and
thoughtlessness, all of which led to more "Don’ts".

The Probloggers How To group writing project is a good opportunity for me to push through — how to let go of old hurts and write a How To article in one push. So:

How to visit friends who are ill; especially those struggling with chronic illness:

• Schedule ahead.
  This gives your friend a chance to activate his/her energy management
  plan, which often means doing nothing a day or two ahead, and planning
  nothing a day or two afterward.

• Be on time. Someone who is ill learns to manage their energy, and they will manage
  it around your plan. If you are an hour late, they’ve lost an hour of
  energy — and that may be all they have that day.

• Be flexible.
  Make arrangements with your friend knowing that plans may have to be
  canceled or altered at the last minute. When the time comes, s/he may
  be able to manage only part of your plan, or none of it. S/he’s the
  best judge of this, so be as accepting as possible through your
  disappointment. If you might be too
  disappointed, make that plan with someone else, and save less
  significant activities to share with your ill — and now unreliable —
  friend.

• Be spontaneous. In the neighborhood? An unexpected hour free? Call. Your friend may be sitting there, grumbling: Phooey. A good day, and nothing to do… Or not.

[Yes, I do realize this contradicts the above advice to Schedule Ahead. What can I say? Life is contradictory.]

• Accept No gracefully; assume it’s not personal. Has your friend declined your last half-dozen invitations? Ask —
  should you keep asking? Maybe your friend doesn’t want to be reminded
  how ill s/he is, and would rather not be invited. I generally would
  prefer the opportunity to decline. Maybe we will get more opinions on this in comments?

• Realize that your friend has suffered a major loss of power.
  Each day you make hundreds of small — and large — decisions about
  your life. What time to go to sleep, when to get up, what to eat for
  breakfast, what you will wear today, where you will go for lunch — and
  so on. Due to illness, medications, budget, and combinations thereof,
  your friend has lost much of the decision-making authority s/he was
  used to exercising in life. S/he may have even lost some of her
  cognitive ability — I certainly did. This, alone, is debilitating and
  discouraging.

• Respect preferences.
  Especially if you are offering assistance, do so in a way that helps to
  empower, rather than disempower, your friend. Does he prefer Cheerios?
  Don’t buy him Wheaties. Does she want a specific brand of tissues? Does
  being ill mean, for some reason, she shouldn’t have them? Beggars can’t
  be choosers?

• Facilitate, as much as possible, his/her ability to make their own choices while they can. If your friend has an illness with an uncertain course, s/he knows s/he
  may not be able to choose even where, or how, s/he lives at some time
  in the future. Be sure your friend doesn’t feel like a beggar when you are ‘helping.’

• Offer specific assistance when you are able and willing to provide it. Are you going to be nearby? Do you have some spare time? Call and ask
  if you can pick something up — I’m going to be in the neighborhood,
  driving right past the grocery — florist — your favorite restaurant
  — can I stop and get something for you?

• Be clear — I always assume
  that I will pay ($) for such surprises and accept or decline
  accordingly — but some folks might assume otherwise. So, as with
  everything else, specificity and clarity will help prevent
  misunderstandings.

• When you have time, and don’t have your own agenda it would grieve you
  to change, offer a short trip to an antiques shop, or an art museum, or
  a zoo, or whatever would please her/him. You drive, and leave promptly
  when s/he is tired. No extra errands that ‘will just take a minute‘.

• 
  Offer a meal at — or from, if s/he is not up to it — her favorite restaurant. Or cook one.

• 
  Offer a drive in the country, if s/he is in town; or to the city, if s/he is in the country.

• 
  Is his/her house a mess? Decide — are you willing to clean it? Would
  s/he be more humiliated that you’ve seen it, or that you’ve cleaned it?
  Will the pleasure and ease of it being cleaned outweigh the
  humiliation? If you come down on the side of cleaning, leave keep-or-toss decisions
  to them. Make piles by "category" — mail, magazines, etc — and
  explain what you’re doing where. Then celebrate with a meal on a clean table. Do the dishes and put things away before you go.

• Bring things you know they’d like;
  what would be cheering? — favorite foods, flowers, movies, music,
  friends, books…  Even more than in ordinary friendships, little
  surprises are welcomed
  by those who rarely get out (at least by me.) My friend Niki tends to
  bring little toys. Some grownups might be offended by this. I am
  delighted.

• Pay
  attention
  to what your friend likes. If you bring things that must be returned —
  books or videos from the library — be sure to come back and fetch
  them. Otherwise, the gift may become a problem for the recipient.

• Follow through. Did you say I’ll put your garden to bed this fall? Your friend may well have managed her/his budget, as well as her energy, around that expectation. If you forget,
  something — possibly something important to the health or comfort of
  your friend — may not get done this year, as s/he thought there would
  be money to do something else.

• Respect limitations and boundaries, yours and theirs.
  Remember that your friend’s budgets — for money, energy, and even
  emotional/ mental/ intellectual reserves — may have been severely
  limited by the illness and its consequences (or treatment.) But there are limits on
  your time and energy, too; and other claims. Don’t over-promise.

• Ask your friend to help you.
  I don’t mean make-work; I mean real assistance. With attention to the
  above-mentioned limitations, realize that one of the major losses your
  friend has experienced is the ability to be helpful and effective in
  the world. Your friendship used to be give-and-take; allow it to be
  that again. Does he offer good advice? Is she a great editor or
  designer? Are you working on a project where these skills might be
  helpful? Once your friend has found her balance with the illness, and
  you are confident of her ability and willingness to say no — ask.

• Talk with your friend about what is working, and what isn’t. Not just
  once, but frequently; illness changes, and so its demands change.
  There may be periods when ‘dropping by’ is fine, and periods when it
  isn’t. There may be times when your friend needs solitude and rest, and
  other times when s/he needs company and distraction. The only way to know, is to ask.

• Read. Find
  some resources about the illness your friend is living with, and
  broaden your understanding of what it means in his/her life. Many of us
  are reluctant to talk much about how our illness effects our lives;
  it’s too much like whining. Ask your friend if they might recommend
  something, or check resources on sites like this one.

• Use care in offering suggestions.
  The world is full of miracle cures. If we didn’t know at the beginning,
  we soon learn that the chronically ill are favorite targets of schemers
  and well-intentioned but ill-informed helpers — often available at
  some steep price. Assume that your friend has done some reading and
  research on their own, and is the best qualified to determine what
  works, and doesn’t, in their own life. If you’ve discovered something
  new, offer it with some humility: I‘ve no idea if this would be helpful, but it seems interesting and I thought you might like to take a look at it. This might help you decide what’s appropriate:

  
  Click to see the larger version at Sick Humor

Finally:

• Ask yourself: is this a friendship I want to continue, as it is, now?
  Both my experience and my reading tell me that this is, perhaps, the
  most difficult challenge when a friend becomes chronically ill. An
  acute illness is, by definition, short-lived; the person will survive,
  and return to themselves, or they won’t. But chronic illness changes
  everything, long-term. Uncertain term.

Many or most of the activities you once shared with this person may no
longer be possible. Do you share more than what you did together? Will
you be able to find other things, less demanding things, to do, or to
talk about? Is s/he still able to provide the support you are
accustomed to receiving from him/her? Are you able to provide the
support s/he now needs?

This friendship may be one that cannot survive a chronic illness.
Habits that are easily accomodated by a well person can be too much for
an ill person to manage around, and the foundation of a friendship formed in
health may not be strong enough to support both parties in illness.

Your friend may be — at least in the short-run, as they struggle to
adjust to (or deny) the changes and losses in their life — emotionally
erratic; or just downright cranky. Or virulently angry.

Some
few may be angelically peaceful and accepting. The ones who win
against incredible odds. The ones who walk without legs. Determined,
kind, hopeful. These are the ones we’re all supposed to be.

I wasn’t one of those. I’m not.

Nor
were most of my friends the infinitely kind, patient, and understanding
folk one sees in Hallmark Specials. A few are, though.

Thank whatever, for them. Niki. Cindy. Bob. Abigail. Kris.

And those who find and comfort me here, in this virtual world, where we can pretend to be what we wish we were.

Or where we can be what we wish to be. Kind. Patient. Understanding.

Even, somehow, well.