Bob DeMarco Alzheimer's Reading Room

Saturday, July 6, 2013

WINDOW TO HIS SOUL


... I get so excited when I find out it is my turn to help him out for the day because I have noticed a regular window to his soul.

By Mary Gazetas
+Alzheimer's Reading Room

WINDOW TO HIS SOUL

Who is this man? Who was this man?

It’s so important to create an identity for your loved one for the staff who look after a person living with Alzheimer’s.

My experience in the last few years has been more of a collective approach to achieve this.

First, it was a written biography. Then over time I realized the importance of enlarged photos in his room, objects, favourite clothes, hats, and choices of music he loved from his past.

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Plus best of all – the benefits of story telling between families and staff.

Together we have conversations all the time. We share feelings (and fears) about my husband who they look after day and night, week after week ... month after month.

Compassionate staff can provide comfort on many levels. This is why I want to share an e-mail I received from a wonderful care-aide whose name Is Bettina.

When I showed up one afternoon this week she sat down and pulled out of her scrubs a page of hand written notes that described what the morning had been like with him.

What follows are her words when I urged her to please transcribe her notes for me.

“Oh Mary

... I get so excited when I find out it is my turn to help him out for the day because I have noticed a regular window to his soul. Our routine goes a little something like this... As I peek in on him during my first round I find him bathed in soft and soothing light from the waterfall and Christmas string.

Therefore I can clearly see his blanket is tucked up to his neck with his head cocked back deep into his pillow. I can't help but giggle when I see his serene face paired with his wide open mouth ...

This is how, in only seconds of watching him he tells me that he is in that deep restorative sleep that leads to an open window. Today he will wake on his own and decide what to do from there.

I told you about how I kept checking in on him and either found him either asleep or awake but in the most curious position. He had somehow managed to slide his upper body down the bed so that his pillows (complete with a lovely "head-print" right in the centre) remained perfectly at the top while his head followed just below. His legs were pulled up-knees to the ceiling style-while his feet were pointed up as well. If my description is difficult to imagine try to visualize a slightly un-finished "W". Seeing him asleep in this position I considered the following...

Was this an unsuccessful attempt at getting comfortable?

Is he trying to tell me he wants to get up?

Is he trying to get up himself?

Will he fall out of bed if I leave him this way?

Should I attempt to move him into a more natural sleeping position to avoid a possible crick in the neck or back when he wakes?

I finally decided he could not possibly be uncomfortable with the peaceful look on his face so I left him to sleep.

The next time I came in he remained in this position and was awake. (As I told you yesterday I discovered that this position was explained by the abdominal exercise crunches that he does each morning)

Today our conversation went like this...

Well Good Morning to you!
Good morning

Would you like to get up for the day now?
No

Are you comfortable in your bed?
Yes

OK I will come back a little later

This wake/sleep pattern went on with him being decidedly content in his bed. On my last pop-in before breakfast he was searching the room yet still not wanting to get up for the day.

I set up his xylophone on his table in front of him and he eagerly took both "hammers", one in each hand and began a symphony. In fact, as I was six rooms down the hall listening to his music I wondered if I should have closed his door on my way out.

At breakfast we had another conversation.

So what are your plans for the day?
mumble mumble mumble (inaudible)

OK then what's on your "to-do list today?"
mumble mumble mumble Ten

Oh, you're starting your list at Ten?
Yes

Sounds good
(While scanning his wall of fame) Mary's people are......here
(I turn to where he is looking) Yes they sure are

(He turns his eyes toward the white board) Mary's t-t-topic is here
Yes it is (I read him your topic on the board about witch hazel)

Turning my body back towards him I see the picture of Sophie and ask Do you have a message for Sophie?
Yeah.........My Dear......(inaudible but sounds like ah-why-khay-t)

How about for Calliope?
Yeah.........Are happy........(he turns away from me)...One more......(I smile knowing he means Michael)

(some time passes, he has closed his eyes and appears to have used lots of effort but also seems as if he is resting/concentrating/working up to something. He drinks some OJ and I offer another cue)

One more what? (time passes he swallows some oatmeal) One more message, To who, Michael?

Yes (When he says this so quickly after my question and turns to me immediately with wide open eyes after saying Michael's name I see relief in his face.) While turning to the wall of fame and in an inviting voice that sounds like he is standing in the open door of his home he says..... Come in....

(a tear wells up in his left eye just before he closes them both while sinking his head back into the pillow. I put my hand on his shoulder.)

OK, Don't worry, I'll be sure to tell him....I will tell them all. He sighs. After a moment I raise the spoon of puree to ask him if he wants to eat the rest of his bread. His eyes have remained closed yet he opens his mouth to take the food.”
_______________________________________________________________

Postscript
Bettina’s words define exactly what makes a great care-aide. She is an excellent model of a dedicated person who takes the time to observe, listen, honour and respect the ones she looks after.

Sophie, Calliope and Michael are our three grown children. Her reference to the “wall of fame” relates to the many photographs I have taped on his walls.

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