One of the issues in the matter of keeping friends is, how much we should whine to people about what we are going through.  People don’t understand unless they have done it.  They just don’t understand.  People get tired of hearing about what we and our Loved Ones are going through.  It is hard to understand what it is like for every need of someone else, from the  tiniest need to the most serious need to have total priority every moment, waking or sleeping.  Their tiniest need trumps our biggest need.  After all, she has Parkinson’s.  She didn’t choose to have it.  It just happened.  She can’t pull the covers over her or turn over in bed or get the last of the Cheerios to her mouth without them sliding out of the bowl on to the table.  It is not her fault.  It is just so.  Her needs trump my needs, the needs of the very one on whom she depends for her daily survival.  The truth is, no amount of explaining or whining can give someone the full weight of something they have not experienced. 

You know the story.  Some of the people you have counted as friends come with words of sympathy when the diagnosis is made.  Some hang in there for weeks and months and even years.  Some surprise you with their willingness to help.  There are those who will offer to do things you would not have thought to ask for until they offered.  And then sometimes, after a while, they just seem to tire of it — take for granted that the two of you will manage.

As I write this, I have to admit that we are spoiled — really spoiled.  In the past seven or so years, when we have struggled the most, as many as sixty-five Volunteers have helped us.  Very many of them came in shifts, two or three hours at a time to be with Mary Ann at our house, to talk with her, help her get around, get food for her, assist her with her personal needs, read to her, take her out for a stroll in her transfer chair. 

Yes, Volunteers have dwindled over the years as they have gotten older, their own families have come to need them, and/or Mary Ann’s needs have exceeded their ability to care for her.  When I retired last July, a few decided to continue to spend time with Mary Ann, even though I no longer need to be gone from the house sixty some hours a week to serve them and their families. 

Those Volunteers have come to be friends, especially Mary Ann’s friends.  There is no need to whine to them.  They are in our home and very much aware of the demands on a full time Caregiver.  We have been and continue to be spoiled. 

The question is, how much should I say to others when they ask how we are doing?  What do you say, those of you who are doing Caregiving?  People care, but when they ask, often they don’t really want to know.  They don’t want to hear it again.  What do you say to them?

The trouble is, those of us who are full time Caregivers have pretty much one thing to talk about.  To sit down and actually read a book, or even an article more than a few paragraphs long is virtually impossible when the needs come every few minutes, when taking eyes off that Loved One can result in some sort of crisis happening before it can be averted.  There is little chance to pay attention to anything else.  A Rodgers and Hart song, “Johnny One Note” describes us whining Caregivers.  It is no wonder friends sometimes begin to drift away. 

What can we do about it?  It seems to me that there is a simple truth that offers the key to keeping others in our lives.  Care about them.  We need to ask them how they are doing and mean it.  We need not to trivialize their problems, even though ours may seem to make theirs seem to be of no importance.  Their problems are important to them, as important as our problems are to us.  We can become so immersed in our seemingly impossible situation, that we can see nothing else. 

It seems to me that we actually have a unique set of skills taught us by the most difficult situations we have faced.  We actually can understand what many others don’t.  We can be exactly the friend others need.  Yes, sometimes we are shocked at how petty some of the problems others see as so important are in comparison to ours, which far exceed theirs in that great metric in the sky — at least in our eyes. 

One of the great gifts available to us are groups, support groups, on-line groups.  (Find them by Googling the name of the disease in  your household, adding the words “support groups.”)  There we can whine to our hearts’ content.  There we can find people who understand exactly what we are going through.  Whine there, not to every acquaintance who dares to say, “how are you?”  It is no wonder we sometimes lose friends.  We want them to prove that they are friend to us by listening, understanding, sympathizing, offering to help, but we are unwilling to be friend to them. 

What sort of friends do  you have?  How do they help you?  What do  you say to them when they ask you how you are, how your Loved One is doing?  In what ways are you friend to them? 

Is it okay to whine or not?  What do you think?

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We just returned from an evening with friends of some thirty-five years.  As always it was a wonderful evening of good  food (Irish, of course), great conversation, and reminiscing. The eight of us, four couples have lived in the same town only fifteen of those years. We now live about an hour away from them.  the distance does not seem to separate us in any other way than geographically. 

We have stayed friends throughout Mary Ann’s progression from the Parkinson’s Disease diagnosis to the Parkinson’s Disease Dementia that is now emerging. Many who have shared experiences have revealed that friends have sometimes simply left, as the disease has progressed. 

Tonight, bathroom needs, disruptive hot flashes, challenges in eating were all part of the evening’s events.  Those challenges were simply taken in stride as part of what it means to be together as friends.  One of the group, Marlene, has been dealing with a slowly progressing version of ALS (Lou Gehrig’s Disease) for around seven years now.  She is completely wheelchair bound.  Her husband Charlie and I have much in common to talk about — he, however, is a much better cook that I.  Chronic illness with no reasonable expectation at the moment of anything other than decline, has not diminished the strength of the friendship that binds the eight of us.  It has seemed to draw us even closer together.

Our experience with this group is not necesarrily the norm.  Some, maybe some of you, have had other experiences with the impact your Loved One’s Disease has had on friendships.  I have lots of thoughts about keeping and losing friends, doing things that can build lasting friendships — even when unpleasant symptoms seem to keep friends away.  Let’s start with your thoughts! 

What have been your experiences, good or bad, with friends sticking with you or slowly disappearing from your lives as your Loved One’s disease has progressed?