What is a moment in time?  We tend to think in minutes, hours, days, months, years.  But a moment… a flash of time.  It depends if you are on the receiving or giving end.  “Just give me a moment,” as a giver is intended to delay a conversation.  As a receiver that moment can seem like an eternity.  When you have all the time in the world, moments are too small to measure.  When you are losing time or waiting, moments vanish too fast.

It is common for a caregiver to want to hold on.  To keep their loved one’s memory intact. Then they are not slipping away.  But without realizing it, that memory is slipping away.  And it is hard to let go.  Keeping the mind intact becomes a routine of quizzes of who is who.  “Don’t you remember her…say her name again.”  As the progressing of the disease take over, measuring the memory becomes measuring emotions.   He had a good day today, he was happy.  She was upset, so we left the party not doing well.   As good days become smaller and bad days increase, the caregiver becomes depress and overwhelmed.  Determination to change it or control it takes over, fighting by increasing past likes.  To recreate or find new “good” times.  To measure success by the smile on their face to prove the caregiver made the right decision.  It becomes a game, that challenges the caregiver beyond reality.

One such caregiver excitedly told be that she got tickets to the theater for a production of her husband’s favorite play.  She was so looking forward to taking him there because he would be so happy!  The tickets were costly but that was no concern to her.  Arranging transportation, dinner and everything was an ordeal, but she was excited because it was for him.  The day came and went.  The next time I saw her she did not mention the play at all.  Matter of fact she avoided all conversations for a week.  Finally, she came into my office regarding another matter and soon tears started to fall down her cheeks.  Handing her a tissue, I touched her hand and ask if she wanted to talk.  Her eyes welded up with tears and her mouth quivering, she said yes.  She then told me about that evening.

She arranged everything just for him.  She made sure he had a nap that afternoon to be sure he was not too tired.  She chose comfortable clothes but worthy of his need to look appropriate.  The transportation came on time and drop them off at the right door.  Everything was going right.  Finally, they sat in their seats and the play began.  After about 15 minutes he started to get antsy.  It started to increase, and he would turn around looking for someone he knew, or thought he knew.  At first people around them were nice and understanding but soon it became distracting.  She said she took in a deep breath and at intermission she escorted him out.  The lobby being crowded, and the noise increased his anxiety and soon she realizes he was not going to make it.  So, she called for the transporter who could not come any earlier.  Her nerves being rattled and trying to think what to do was met by a very nice usher who offer to call her a taxi.   She was defeated.  Her husband started to calm down once in the taxi but was still looking around trying to find people he knew.  She asked him if he liked the play.  He did not answer.  She tried to nudge any recognition of the play, no answer.  Once home, she got him settled and ready for bed.  As she laid him down, she told him she loved him, and he reach for her hand and fell asleep.   She went into the living room collapses into tears.

She talked about how important this became to her because she wanted to give him something he liked doing.  They often talked about how much they miss the theater, and this would have been so special.  A gift she could give him.  But instead, it was a disaster.  She was losing him.  She talked about years before when the doctor told them his diagnosis, she and her husband talked about what was most important to him.  Life was full for him.  He was always doing things, keeping busy, enjoying life.  They went on trips and did things that they always talked about but had no time.  They did well to fulfill those goals in those few years.  Going through pictures and things that were important to him.  Seeing places, he always wanted to see.  Keeping family near and enjoying events together.  They adapted with his disease as it progressed and did well.  But now, it was becoming too much.

In the beginning he would tell her how great those journeys were.  How wonderful to be with family was.  He thanked her.  She knew his approval and that was so important to her.  She was honoring him.  As time went on instead of saying how great it was, his approval became a nod, a smile, a twinkle in his eyes.  She was still honoring him, and he was grateful.  She knew she was doing right.  And as long as he showed his approval, she was making the right decisions.  But now, it was gone.

The next morning, she tried again to “measure.”  She asked him if he had a good time the night before.  She talked about a certain scene or costume.  He just ate his breakfast without any response. She was losing him.  How could this happen, he was still healthy.  He is still with her.  When she slept at night, he was still next to her.   For over 50 years, he is still there.  Reality was too much.

I sat there listening to her story.  As she sobbed I could here this story but in different voices through the years.  Caregivers looking for approval and not knowing.  “If she is happy at the end of the day…I made the right decision.”    “When he wants to go, I know it is the right thing to do.”    They are centering approval on a cognitive rational that is no longer there for some.    I explained to her that sometimes we are measuring success in our terms not in theirs.  Our terms are center around logical steps that is a means to the end.  For them, it is the moment.

A moment is just that.  What is hard for us to understand is that it is fleeting.  Before we know it, it is gone.  And that is the reality of the disease to us.  Once they get to that point, they can no longer argue the value of a moment, a minute, an hour etc., because they no longer understand the concept of time.   To tell them that so and so will be here in 15 minutes or at 3:00 means nothing.  It is a cognitive function that no long computes in the brain.  Even if they agree, more than likely a few minutes later they will come back and ask the same question again.  It is just words to them.  Not constructive knowledge.  And that is the killer for caregivers.  They can get lost in the emotions, cycle of arguing, trying to explain to no avail.

I asked her when he reached for her hand, and as they held hands, did he look content.  She sat there and thought about it.  “Yes, now that you say that.  He used to always grab my hand, ever since we dated.  Holding my hand was very comfortable to him.  He would tell me that through the years.  In bed just as we were falling asleep, he would reach for my hand.   She went on to tell me that his hold family always did that.  She then talked about him holding his father’s hand as they were walking together down the hall in the nursing home.   And then later as his father laid dying”.

She looked up on that verge of an ahh moment she asked, “but we always do that.”  I smiled and affirmed to her that it his sign of approval.  He has lost the words, the cognitive reasoning.  But he is still able to show her his approval…. not of the theater, the dinner or anything else of that night.  But at that “moment” he could still hold her hand.   She gasps!  “My word, he still passes by me grabbing my hand, I just thought it was mindless motion.”  It may be, but it is comforting and that is him reaching out.

We need to look for those moments and embrace them.  When those days of anger, arguments, frustrations overtake our love one or even ourselves – that is just a reaction to coping with this confusing scary world.   Instead, the moments; whether in laughter, joy, hug, smile or just holding a hand – those are the moments to cherish.  It is like a photograph.  That is a snapshot of a moment in time.

She smiled and wiped the tears away.  A few weeks later she walked by smiling.  “Moments, I get it now.  I started a diary of “moments.” I read them now at the end of the day and realize our days are full of moments!  Little things like the clouds in the sky to laughing together to the smell of baked bread from the oven.  These moments are shared with my children now.  What was hard for them to see us going through has now shown there are good times still.  And now when he reaches for my hand at night, I smile… he is still with me!”