Mary Ann barely talks, and I can’t seem to stop talking.  I have just written two posts titled “Who am I” chapters one and two.  When does Mary Ann get to say who she is?

There are different stages in the journey of a Caregiver and CareReceiver team.  Some are at a stage in which each can speak for him or herself.  Some are in the stage in which the CareReceiver can no longer speak at all.  We are somewhere in between those stages, a little closer to the latter than the former.

Mary Ann has never been very talkative.  She has been a very private person.  She was never one to spill her guts to others.  Mind you, when she spoke, it was always pretty direct. 

Now, it is very difficult for her to get thoughts into words.  It sometimes takes so long that she doesn’t get a chance to get those thoughts out before the conversation has moved to the next subject.  Sometimes she seems not to be able to follow the conversation.  Other times, her words when they do come reveal that she is tracking the conversation perfectly and just needs time to get a word in edgewise.  When she does speak it is often so softly that what she says is lost to the rest in the conversation. 

I want Mary Ann to be as fully present as she can be at all times.  I want her to have a chance to be heard, to be listened to.   I want people to discover who she is.  The challenge for me is determining when to speak for her and when to just shut up. 

More times than I can count, when people new to us have interacted with us they have looked at me and referred to Mary Ann in the third person.  “How is she doing?”  “Does she want this or that?”  When that happens, I usually move my body in a way that brings her into the conversation’s physical space, and I relay the question to her.  I don’t snap back with “Why don’t you ask her?”  Also, I don’t want to force the issue, since sometimes she is not able or does not want to respond.   What I do know is that if people refer to her in the third person when she is sitting right there, it feels as they have concluded that she is not actually there any more.  It is as if at that moment, were she to ask, “who am I,” the answer would be “Nobody!”  She is Somebody, somebody special.  I want people to know that. 

Another odd little quirk when folks do talk to her, is that some raise their voice as if she has a hearing problem.  On occasion someone will put his/her face right in front of hers and shout.  Some folks use a sort of baby talk, as if they were talking to a toddler.  The tone sometimes sounds as if it is an attempt to be sweet to her.  Without intending to do so, actually it seems to diminish her presence as a whole person worthy of adult respect — as if she is a poor handicapped little person in need of them descending to her level.  It is hard to watch and listen when she is approached in a way that seems to make her something less than she is.  I am not confrontational with people when they talk in a way that feels inappropriate, since they are doing their best to be kind.  I suspect that I need to be more assertive and find a way to help them understand that it would be better to talk with her the same way they would talk with any other adult. 

Again, one of my greatest challenges in the role of Caregiver/Husband is to determine when Mary Ann wants me to talk for her, and when she wants to talk for herself.   I try to deal with that challenge directly by asking her if she wants me to talk or not.   Sometimes she will answer me when I ask that question, but sometimes the words just won’t come. 

One of the times it is most difficult to be sure I am talking enough for her but not too much is at the doctor’s office.  The doctors generally handle this pretty well.  We have been going to most of them for a long time.  When they ask her a direct question, if she can, she tries to answer.  It is especially hard when her answer does not at all reflect what I think would be a more accurate response.  Sometimes I can jump into the conversation and address Mary Ann, reminding her of the specifics that would suggest her first answer not to reflect her actual experience. 

At the doctor’s office especially, when I do speak for her, I immediately ask her if what I just said reflects accurately what she understands to be so.  As a Caregiver, I have to be especially careful that I don’t project on to her my perceptions and feelings and conclusions. 

To be able to determine accurately when to speak for her and when not to, to be able when I do speak for her to reflect accurately what she is thinking and feeling, as a Caregiver, I need to listen very carefully to what she says about what is going on with her.  I need to to ask her questions such as, how does it feel to you when this or that happens, when I say or do one thing or another. 

All the listening skills I have tried to develop over the years of counseling are important skills to apply to communicating with Mary Ann.  I have to look for non-verbals, read lips, listen for code words that give a clue to what she is feeling.  Then I need to do everything in my power to elicit words from Mary Ann, especially those times she is most alert  and connected.  I need to be quiet long enough to give her a chance to form the thoughts and get them into words. 

When shall I talk for her?  When I have listened carefully to determine what she is thinking and feeling, when I have been quiet and patient long enough to allow her to speak if she is able and willing, then it is my job to bring her presence into whatever the conversation so that those with whom we are conversing recognize and affirm her identity as a whole person.  She is Somebody, somebody special!

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