Feelings and Words

I was my Alzheimer's mom's primary caregiver for over 12 years, and during that stretch of time I also experienced several unpleasant episodes during which I became the patient.  I've always thought the Lord allowed me those relatively brief seasons of infirmity to teach me what life looks like from the other side of the caregiving coin.

From my own experiences and those shared with me by others, I've become aware of how difficult it can be for patients and caregivers to communicate with one another. Because of vastly different perspectives and motivations, we don't hear one another accurately, and to make matters more complicated, we often do not say what we really mean.


Patient:

Says:  I'm angry that you don't visit more often.
Means: I'm lonely and afraid.

Says: I don't need you to do anything for me.
Means: I don't want you to resent me (and I may actually welcome loving acts of service).

Says: You just make me want to scream.
Means: I don't realize I'm forgetting things and it seems to me as though you are the one who has changed.

Says: Our relationship isn't what I wish it was.
Means: I miss my little boy/girl and the love we used to share.  (Dementia patients remember the past most clearly).

Caregiver:

Says:  Mom (or Dad) has just given up.  She needs to try harder.
Means:  I am grieving the parent who was vitally interested in me and who supported me.

Says:   If Mom doesn't keep doing things she'll hasten her own demise.
Means:  I resent my parent for no longer providing for my needs.

Says: We don't want to spoil Mom by doing too much for her.
Means: I am avoiding the transition into the caregiving role.

To further complicate matters, we are most often unaware of the divide between what we are feeling and what is actually true.  We suppress our emotions of grief and fear but they influence us nonetheless, and we end up trying to find logical words to explain how we feel.  We need to accept that the conclusions we draw during the upheaval of changing relationship roles may be inaccurate. An awareness of the way our hearts and minds try to cope with fear and grief can help us to be more forgiving toward one another.