Tag: #Caregivers and Dementia

“Hi love, how are you?”  I entered into the home with my happy face on.

“Good.”

My Bert looked up at me but he was not smiling, he was not giving me a salute, his new greeting.  He seemed a bit morose.

“Is everything okay?  Are you feeling well?”

“I am fine.” Hmm, he is not his usual cheerful self.  Maybe he is hungry.  It is soon lunchtime.  I wheel him into his room and set up the cart ready to be shown the choices for the day.  In the meantime I put on his music, but he did not sing along as he usually does..

Soon our cheerful dancing PSW comes in to display the choices for lunch.  First displayed was the tuna fish sandwich with garden salad.  My Bert looked at it and said: “No.”  

She moved in time with the music as usual then showed him the hot lunch.  It was hamburger with macaroni somewhat akin to hamburger helper, mixed cooked vegetables, mashed potatoes with gravy.  The dessert was not displayed but he loves sweets and I know he would get two desserts.  He looked at the plate and said “No.”

“Sweetheart, you will have to choose something to eat.  Look again.”

My Bert looks at the plates and with a shrug chooses the hot lunch.

The tray is brought in with his chosen lunch, milk, cranberry juice, water, fruit salad and a piece of pie and the soup of the day which today is vegetable.   My Bert loves soup so all should be well.

“No.”  That came as I offered the soup.  No problem I will start with the entrée.  “No.”  That’s okay I think as I select the mashed potatoes. “No.”

“What do you want to eat first?”  My Bert points to the fruit salad.  Eating dessert first is no sweat at all. My Bert eats it all up then points to the entrée.  He eats a half and says, “No.”  I offer the mashed potatoes, and he eats most of it.

My Bert now points at each item in turn and eats until there is not much left of anything.  He eats all the vegetables.  It is smooth sailing or rather, eating.  I think the soup will be a breeze.

He looks at the soup as I raise a spoon to his lips and he says “No.”   I begin to cajole, entice, and stir it to show him how much vegetables are in it.   I talk about how he makes very good soup and how we both love soup.  At each juncture he says “No.”

“Hey, I bet if you taste it you will like it.  Have some soup and then you will have some pie.”

“N… O… NO!”  He shouted.  I was speechless. The force with which my Bert said this as he looked at me, the resolute, unyielding, indomitable will evident in every fibre of his body made it impossible to misconstrue the fact that he was not going to eat his soup.  Not today and perhaps not ever!

I slowly put the spoon on the tray.  I covered the soup.  I knew without a shadow of a doubt that soup was not going to go anywhere near my Bert today.  While I did this my mind was a turbulence of thoughts.

What depth did my Bert have to plumb to retrieve that sequence?  It was appropriate, to the point, communicated exactly what he wanted to say in a concise and forceful manner.  But not something I thought he was capable of doing.

From where did that so logical utterance come?  Was he recalling the old memory of us together telling our sons: “Capital N, capital O means capital NO.?”   This was usually the response when they ganged up one or the other or both together asking for something trivial.  When this answer came they knew that was the final answer.

Did My Bert have a sudden but compelling need to exhibit some control over his circumstances?  There is so little over which he has any control now.  Was my Bert who was decisive; who was in control of his own business; who had strong opinions and made choices unafraid; was that man now reduced to refusing a meal just to prove he was still a man? The thought saddened me.

Was I being fanciful and reading too much into the incident?  Maybe he just did not want soup today.  I smiled inside.  This was the take charge brook no nonsense Bert I knew.

I cut into the blueberry pie.  He accepted it, chewed and said: “Good.”

The Meander:  I believe we underestimate the abilities of our loved ones.  We are so caught up in the caring we sometimes forget the characteristics and those inherent elements of their nature that makes them the persons we know and love.

Alzheimer disease may take away their faculties but it cannot take away their character, their essence, their personhood.

If you are a caregiver to someone with dementia you are a keen observer.   Or you become one.   Before diagnosis you may have been that person who would not notice the nose on your own face or anyone else’s for that matter.   Dementia brings out the sleuth in you though as you become the keenest observer of your loved one. You have to be.

My Bert has Alzheimer’s disease and the best way to monitor changes and give care is to observe.   It is the caregiver who must see the changes, decipher the small ticks, make sense of the seemingly minor blips that occur when least expected.  You can only discover them by constant observation and comparing over time and remembering what was as opposed to what is.

Here is a tip.  Keep a journal of observances and take it with you whenever you go to see your medical professionals – family physician, geriatric psychologist, mental health counsellor, memory clinic, case managers.  Record every change and new behaviour. The importance in recording is that it will act as a sign post to what comes next.   Alert Day Programme staff for your need to know how your loved one spent his day and any new behaviour noticed.   The more you record and document the decline and note the specific changes of your loved one, the better able you will be to work with your health team to enable them to provide the best care to both of you.

I give my Bert some towels and ask him to take them to the laundry room.  He takes them, looks at them, turns to go then appears puzzled.  He holds the towels, walks to every door and around the dining table, comes back to the kitchen, sees the door across from it,  opens it and puts the towels in the laundry room.  This was a first.  I record it.  Is this a blip or did a few more cells die?  Two days later this is repeated.   Then he tells me he is going to the bathroom and he wanders around before finding it.  Now I know a few more cells have died.  My Bert is getting lost in our apartment.

Blips are easy to deal with as they are usually a onetime occurrence.  Usually you can decipher what caused it.  As example, my Bert saw a snake in his shoe just once.  Thank goodness.  A snake appeared in a show he watched before going to bed.   You can ignore those oddities for what they are, blips.  Cause and effect are clear.  On the other hand, dying cells manifests themselves in inexplicable behaviours that indicate deterioration and clear progression of the disease.  You can tell when brain cells die as the new behaviour becomes his norm, or when previous everyday knowledge is lost.

As is always the case nothing is as simple as it appears.  Can blips recur and still be a blip?  Yes.  For the last six months my Bert has been going on a trip.  First, on our way home from his ‘club’ he asked me if the suitcases were packed.  Then two weeks later he woke me up as he was  looking for the passports.  A month later, in the middle of the night he saw some friends outside the bedroom who were travelling with us.  Next there were two people sleeping with us in bed which he called ‘the deck’.   Just last month he wanted to know if I had gone to the bank for the travel money.  These are not blips to me.

Travel has always been important to Bert and me.   Now, as soon as we meet anyone, old friend or new the first thing he tells them is that we have travelled all over the world.   Ask him a question of which he is not sure and he will tell you: ”My wife and I have travelled all over the world.”  The question might be: “What time is it, or, where do you live?”  Answer: “My wife and I have travelled all over the world.”  Blips and dying cells are my most non-professional designation for changes and oddities of living with a person with dementia.  This obsession with travel is neither of those.  I call this hard wired memory recall.  I know my Bert well enough to realize travel is such an integral part of his life that this will be one memory that endures.  In this case there is no blip nor have any cells died.  Rather the cells are being kept vital by the hard wired, happy memories of travelling the world.

The Meander:  The only thing predictable about dementia is its unpredictability.  I hope any recurring hard wired memory is one that brings happiness, encourages communication, and enhances social interaction.   I will pack suitcases, get passports, buy foreign exchange, and travel with invisible friends every day if my Bert wants me to do so.  After all by next day, or next week I may have to start all over again.   Not a problem as long as my Bert is happy.