The Drop Sheet

Bert had me smiling at breakfast.  He has kept his sense of humour and makes me laugh. That is a saving grace as we make our journey through Alzheimer’s World.

My Bert can be a messy eater. You can tell where he sits at the dining table because of the many crumbs around the chair. The usual napkins are not doing a good job, so I take out some extra large dinner napkins and tell him that from now on we would use those.  I place one on his legs tucking the ends into his belt.  It completely covered his lap.  Bert, giggling, looked down and said: “ I have a drop sheet.”  We just roared with laughter.

Was Bert remembering the painting business he owned long before I met him? That reference, plucked from the recesses of his mind was so apt, we laughed together and started the day and the week off on a happy note.

At lunch Bert seemed to be waiting for something although everything was on the table.  I said: “Is everything alright?”  He answered:  “Where is my drop sheet?”  Another big laugh. I guess from now on a napkin will be a drop sheet.

In Alzheimer’s World the past is more real than the present. I know by dinnertime he may just spread the napkin on his lap and remember nothing about his paint business, drop sheets or our conversation. For now, I savour the moment.

There is a knock and I answer the door. The delivery I expected has arrived.  I take the package and sign for it.

“Where is the ticket?” Bert asks.

“Er…umm which ticket?”

“You have to get the ticket.  I have to bill the customer.” The penny drops.  He is back to being CEO of  his courier service.

“No, love, the man delivered to us.  He takes the ticket back to his company.”

“Why did another company do the delivery?”

“Because that company does deliveries for the one sending me the package.”  There is still a puzzled look but no more questions.

Two days later.  “It is forty-five dollars.”

“ Um, forty-five dollars.”

“Yes, that is the charge for the delivery.  You have to collect it”

“Oh, alright, I will collect it tomorrow.  No problem.  Would you like a cup of tea?”

“Oh, Yes. That would be good.”

“I want one too.  Put on the kettle please.”  He goes to the kitchen and I say: “You can deliver it to me too.”

“Ok, but you will have to pay me.”  He glances back with a look that says clearly: “Gotcha.”

Bert sold his company in 1995.

….

Dinner is finished, dishes done and Bert is doing his last chore of the day – closing the shutters.  The guest room is last as usual and he  spends more time there than it takes to close those shutters.  I know what he is doing.  Soon, I hear a chuckle and out he comes.

“I just finished talking with Moeder (Mother).  I told her I did the dishes and put them away.  She said she hoped I washed them better than the mussels.”  We laugh.

Bert ‘talks’ to his mother’s photograph every night.  The mussels is a reference to the war years.  He has told me he and his mother would wait two or three hours at dawn to get a pail of mussels.

Sometimes she tells him not to ‘fall off the sacks’ which is another war memory. He and his mother would go to farmers  and ask to pick up any stalks of grain left on the field.  After receiving permission it might take them the entire day to pick up a full sack of grain.  On one particularly good day of garnering,  Moeder tied two full sacks to the back of her bicycle and told Bert he would have to walk beside her as she could not take him as well.  According to Bert, as she started to pedal slowly so he could keep up he took one flying leap and was atop the sacks of grain.  Moeder was amazed, terrified and worried about him falling off all the way home.   He would end with: “It was hot, I was tired. I was not going to walk home.”

The Meander:  Bert demonstrates his love for me each morning he sits across from me and watches me eat my oatmeal.  Bert does not eat anything that resembles ‘pap’ (porridge) or even cereal.  Ask why and he will tell you: “That’s all I had during the war.”  Not quite true but it is mussels, yes, porridge no.

There is a poignant exigency to hold on to Bert’s memories.  How long will he remember?  I have heard them hundreds of times.  When he forgets, I will remember for him.

How do you do it? Alzheimer’s Society Help.

 

Once the diagnosis of Alzheimer’s disease was confirmed my first reaction was:  Oh my God, what do I do now?   I think this is the usual reaction.  Bashing your head against the nearest wall (bad headache), tearing out your hair (pre-mature baldness), screaming to the high heavens (how uncouth)or jumping off the nearest cliff (splat) may come to mind but none of that will work

So, what do you do?  Find help.  In some cases that may be easier said than done but fortunately in my case, living in Canada and in a City with a high  senior population and services gave me an edge.

Once you have confirmation, if you just go on your computer and start a search for dementia or Alzheimer’s disease you will be able to build that cliff from maybe just one percent of the information you see and it would still take you a while to hit ‘splat’.  Once your eyes uncross and your mind un-boggles find the home page of your national Alzheimer’s society, www.alzheimer.ca in Canada. Help is immediate as you will get direction to your Provincial and Regional and Local offices.  You may be tempted to linger and start reading right away when you see the Quick Links.  Don’t.  Go directly to your local office.  You will thank me when a quick call results in an invitation to visit accompanied by a brief conversation on the kind of services provided.

Why stress ‘local’?  On my very first visit I received information about current programmes, workshops, seminars, activities for both loved one and caregiver, jointly and separately.   First Steps and Next Steps are just two seminar series that help you get a grip on the disease, the impact on both partners and future considerations.   They are exactly as stated.  What to do and expect first, what comes next including making a will, financial issues, medications control, real  estate, funereal funeral considerations,  all done by the appropriate professionals. Your local office is connected to resources and services.  No need to wonder why all this is important.  Let’s be practical, some things had better be done before your loved one has lost too many brain cells to know what is happening.  The legal ramifications alone can be beyond horrendous. Also, as long as your partner can function well,  I know that two heads are better than one.

But, best of all I was connected to a counsellor.  I could call the office ask for a particular person, tell her/him my issue and be guided, helped, and given information so that I could make informed decisions about my Bert. Local also meant that the places I needed to go, the services I needed to access were all within easy reach.  My local office had not just a description of the service and address, they also had a name.  I could ask for a person.  They also made some calls on our behalf.

The people in my local office are extraordinary.  They will help you to curb your attempt to take every brochure available, explaining what should come first.  They are professional, caring, experienced and excellent listeners. They are the biggest boosters of caregivers and remind you to take care of you first, so you are able to take care of your loved one.  This is one of the PhD courses at my Alzheimer’s University.  It is so difficult to do this. Caregivers need to be reminded and your counsellor will do the reminding..

This was my first stop and it is still a most important link.  If I have not connected with my counsellor for a while I will get a call just asking how things are or to give me some relevant information.  She is aware of my Lifeline, the wonderful support group, as all we Lifers are connected to our local Alzheimer’s office. She applauds that.  She knows that the Lifers connection is very important.

The Meander:  Sometimes we find it hard to ask for help.  Being a caregiver will soon cure you of that.  You cannot do it alone.  You cannot do it alone. Ask for and take any help you can get.  We all need it. My Lifeline family and my Alzheimer’s Society local office are two of my companions on this journey.  I am well served and blessed.

 

For Caregivers: All Mothers!

Happy Mother’s Day to all mothers!

To those who never gave birth but are mothers of the heart

To those who are mothers on the second shift

To caregiver mothers who are mothers to husbands, mothers, fathers, aunts, uncles, siblings, friends grandparents, partners

To men who are caregiver mothers to wives, mothers, fathers, siblings, grandparents, friends, partners.

 

 

Today, I want to be mother to all caregiver mothers, to embrace you, to give you hugs, to let you know that as a caregiver mother I do know the sorrow, the joy and love of being a caregiver mother.

Here’s to another perfect day of doing and an infinitesimal token of appreciation for all we do.

 

 

Happy Mother’s Day!

The Meander:  Every week I look forward to receiving the Alzheimer’s Weekly & Dementia Weekly Newsletter.  It is filled with information on the many forms of dementia, new research, caregiver support and ideas to ease our special journey.  It links to other publications and organizations. Each issue begins with a Thought for the Week similar to the one reprinted above.   I must confess that in addition to the articles I do look forward to these gems with  anticipation.

Thank you John Wooden.

 

Something Worse 05/22/2017

The T.V. is on

An intrusive susurration

Barely audible

I hear, I do not listen

My thoughts are inward, personal,

Dark

Created from fear

Not knowing what lies ahead

Afraid to speculate

So tired, breathing is onerous

Brain at rest is wishful thinking

Sleep deprived too often a descriptive companion

Sleep is a roiling, swirling maelstrom,

Too vigilant to be peaceful

Thinking, doing, planning remembering for two

Forgetting self

Learning new unwanted skills

A logistical nightmare

Endless.

Tears make tracks down my face.

This disease that robs our humanity, our dignity is the worst.

“…Breaking news…22 persons, including children were killed by a suicide bomber at Arianna Grande concert in Manchester City, England… Hundreds are injured…”

Breath caught…Breathe, just breathe.

No, dementia is not the worst.

This is.

 

The Meander: May 22, 2017 was one day that the burden of being a caregiver was heavy.  The senseless bombing and loss of innocent lives at what should have been a happy occasion gave me a new, if somber, perspective.  I had to record it somehow.

 

 

Gratitude art

Gratitude Art.

I cannot draw to save my life.  Even my stick figures look rather strange.   It is so bad that in high school when it was discovered that Latin was a particular challenge I was encouraged to take art as an alternative.  I was happy.  How difficult could that be? Also I liked art from a spectator’s point of view.  Three weeks into the artistic experiment I was back to Latin with a note which indicated that I cannot be as bad at Latin as I am at art.

I am glad I conquered Latin.  However, I still loved art enough to do some art appreciation courses later on.  Also, I know without a doubt that I am vital to art and artists.  My reasoning is as follows:  If everyone was an artist who would appreciate the art?  I am definitely in the art appreciation camp. I revere those who can and am first in line to show appreciation.

Fast forward many years and as a result of Alzheimer’s my art has been hung in an art gallery. I can claim to be a curated and hung artist. Will wonders never cease?

I do know my limitations but when it comes to my Bert there are no limits so off I went gallantly with him to art therapy.  It was interesting to attend as it was held in a historical home and museum.  After the usual tour and tea the project was to create a work that illustrated gratitude, or something for which we were  grateful. I decided I would help Bert with his idea and interpretation rather than show my ineptitude.  That was not to be.  I was told everyone had to produce something.

Bert did not need my help.  In no time he had drawn something that looked like a house with a figure in it.  He told our wonderful art therapist that it was me at home. He told her that meeting me was the best thing that ever happened to him.  Awhh.  That’s my Bert.

However, remember I cannot draw period, so I could not return the compliment. I went the modernist route to create a ‘thought’.  Yes!

We had paints, canvas, dowels, string, shiny buttons, sequins.  My creation was a wall hanging using mixed media.  I used a pretty crystal studded button and if you look carefully the squiggly thingie in the middle is embellished with sequins.  Yes, even I have trouble with an adequate description of this masterpiece.

So here it is followed by the ‘artist’s note’.

My Gratitude Hanger.

This represents a positive attitude and sunny disposition.  The colours are bright, happy, and sunny with sparkly embellishments to represent certain intense moments of happiness.

Friends and family have spoken of my happy outlook.  Many have told me that when they are feeling down they call me and know that they will have a brighter outlook afterwards.

Look and you will and see the tears, but they are dominated even overwhelmed by HAPPY and reach upwards to become the streamer of a kite? A bird? Wings?

It was in middle age that I finally realized that this quality so obvious to the people I meet was a wonderful gift.  Now I recognize that as a fact and I am immensely GRATEFUL!

Come on stop laughing!  It’s not that awful.  Maybe it is. When I proudly presented it together with the catalogue, which also featured my work and photographs of the exhibit to our son, he looked at it made a noise that sounded like “Huh!” and said: “Mom, you are a better writer than artist”.

OK, I’ll take that! “Huh!” Everybody is a critic. “Huh!”

The Meander: Look at my big grin and the proud stance of my Bert. Priceless!

WWWW means Wonderful, Wild and Wacky Wednesdays

WWWW means Wonderful, Wild and Wacky Wednesdays

Wednesday mornings are wonderful. We laugh. It is one big inside joke for ten people.

In 2014 my husband was diagnosed with Dementia. I was given a host of print resources, contact information for various support agencies and groups.  I contacted the local chapter of the Alzheimer’s Society. I got more information and schedules for upcoming seminars that could prove useful. It all seemed overwhelming but I knew this disease was not to be taken lightly, so I just decided to take things slowly as I learned and raged against the unfairness of it all.

We were told of a new programme called Minds in Motion.  Funding had been secured for an eight week session every Wednesday morning from 10 a.m. to 12 noon.  The first hour would consist of gentle exercise, mostly while seated and the second hour was for socializing.  There would be games, puzzles, talking, telling our own stories.  Minds in Motion is a direct response to the proven scientific fact that social interaction and exercise is vital for dementia patients to help them to keep their brains and bodies functioning for as long as possible. In fact that is a requirement for everyone. Minds in Motion is a programme for both caregivers and patients. Perfect.

I signed on, and so did 12 other couples. Minds in Motion was such a success, the only negative feedback was that we needed more sessions.

Minds in Motion created a community.  As another series drew to a close we wanted some continuity.  We had found a common ground and wanted to stay in touch. One suggested we all go to lunch after the last session.  We did and at lunch we spoke about how valuable the sessions were and hoped they would continue.  Another wondered if we could meet for coffee on Wednesday mornings since we already had that time reserved for Alzheimer’s activities. There was general agreement.  It would be purely voluntary. Anyone who wanted to would meet at a nearby coffee shop on Wednesday mornings.

Five couples showed up.  Thus was born WWWW Wonderful, Wild and Wacky Wednesdays.  This day is sacrosanct. Wednesday is reserved for our couples activity, either Minds in Motion or coffee time and only missed for priorities such as illness, medical appointments and laboratory tests.  It is a lifeline in a world turned upside down, a bridge between our two worlds,  the real and the one known as Alzheimer’s world. It is my lifeline. Wednesday mornings make the insane, sane.

The Meander: Five couples showed up. Five couples, nearly strangers now best friends. Five couples connected by a dread disease. Five couples who together try to outwrestle dementia. Five couples who support each other and have magically found solace and laughter. Every caregiver needs a lifeline like this.

Suspicions confirmed

Suspicions confirmed.

“Yes, Mrs. De Ronde, your husband has early to mid stage dementia/Alzheimer’s disease.”

I heard the words. They did not register or perhaps they did at a depth not yet plumbed.  My stomach moved and there was fuzziness in my brain. I saw a long, dark, dense, never ending tunnel.  There was a total absence of light. My heart lost a beat or two then started again.

It was perhaps two years previous that I had begun to suspect that something was not quite right.  Sure, my Bert was older than me.  It was a subject for teasing throughout our marriage.  Comments like ‘robbing the cradle’ would come up now and then always with a laugh.  We often observed that though  younger I would perhaps die first as Bert had the better genes.  Then at his 80th birthday party I noticed that he did not remember our friends’ names and he was asking me to remind him who some of them were. If they were people we did not see from one year to another it would not have made an impact, but these were close friends.

I passed it off as that old age thing creeping up on us and the usual forgetfulness that comes with it, that there was no reason to worry.  He was entitled to be a little forgetful.  Heck, I also suffered from that forgetfulness syndrome too. I had walked into the bedroom from the kitchen and forgotten why I went there in the first place.

Then nine months prior to downsizing, as we were preparing our home for sale, I asked Bert to take some table linens downstairs to the laundry room.  He was gone for about five minutes then he came back to me and asked me where he should put the tablecloths.  I said: “In the laundry room”.  I watched as he walked out of the kitchen, through the dining room and to the living room.  He stopped, looked around, then went along the passage to the main bathroom, looked in then went to our bedroom.  He came back out, went   into one guest room and as he turned to retrace his steps, he saw the stairs, nodded and went down them to the laundry.

I knew I had to get him to the doctor. I had to get him assessed.  Now here we were and I was being told the result of the various assessments.  The words I just heard were not the words anyone wants to hear yet they were not unexpected.

I looked down that tunnel and realized that if there was to be any light, I would have to create it myself. I also knew I needed help.

The Meander: Here was a new journey.  Had all that had gone before in my life in preparation for this?