Alzheimers - Meanderings

August 17, 2022 No Regrets

We wheeled him across the street. One helium balloon already declaring in bright, bobbing shiny proclamation: “It’s My Birthday”.

He was well dressed. I was told that when he was asked what he wanted to wear he had only said: “Blue”. He was dressed in a lovely blue shirt, gray dress pants and dark blue slipper shoes. He was well groomed having just had a haircut five days before. He smelled nice.

Destination was the Italian restaurant a short block away. All was ready including the 14 guests that would celebrate this special day.

“How old am I?” The voice was tentative, slightly raspy, low and slow. The once talkative man was showing the ravages of Alzheimer’s and the onset of aphasia which began just two weeks before. The rock had become shifting sand.

“Today you are 90 years old”. The still bright eyes opened widely and the ghost of that most beautiful mischievous smile broke through. “That… no, you 90 too?”

There was laughter.

There was laughter as a favourite niece got him speaking German, and Dutch then it doubled in volume when he answered in Swedish.

The food was great, the conversation lively and the 90 year old man was happy to be the VIP, the celebrant, the focus of all around him.

A conglomeration of cards, balloons, flowers, odd items surrounded his plate. There were pop-ups, noise makers, puzzles, musical renditions of the birthday song all coming from the cards, gifts and trinkets. More helium balloons decked his chair, tied to show off the witty sayings displayed on them.

He did not say much. Each question was passed on to his wife with: “You tell them”. When she answered with an encouraging word or mnemonic aid to have him join in answering he would nod or say one or two words. And he smiled.

It was a very happy occasion and for three hours his usual tiny sliver of view of the world became a whole pie. He ate. He drank. He smiled. He saw the entire street. The cars, the bus, the gardens, the small plaza were seen at earth level, not from the constricted view from his third floor window.

Those who had not seen him for a while marveled at how well he looked. He reached for my hand and held it even as I fed him.

There was a parade going back to the home. It was a celebration.

His place at the table was crowded with his birthday gifts so some had to go into his room. The noisiest, brightest, most comical pop-up cards were shown around to his companions in the room. Flowers were on the window sill. There was no guessing who the birthday guy was as his chair was festooned with the bright helium balloons. Many came by to look and those who could, chatted, touched, stroked and wished him a Happy Birthday. Then everyone had cake with tea.

“Okay sweetheart. See you soon”.

“Bye, my Paula, soon.” It was the clearest he had spoken all day. He was my Bert.

August 17, 2023

It could have been bleak. It was not. It was filled with happy memories and I was happy to recall the last birthday party. We had no idea then that in 39 days that world view would expand to encompass the entire universe. None of his guests knew then that the next time they saw him would be for another celebration, of a life well spent.

This year his birthday party is with the stars while I was treated with lunch at a friend’s home. There was love, and I marveled at how much the world, life, business, pleasure, sadness and joy, like glass in a kaleidoscope, shifts and reassembles as you adapt to a new reality.

We walked down to the lovely creek that meanders through the property. There has been so much rain it is the fullest I have seen the water. It had risen to be lapping at the footbridge and as it rushed with musical notes to the lake it seemed to say: “You done good, girl”.

The Meander: Yes, I have.

The Doldrums

I sit at the table. My Bert’s spot is empty. I have arrived early as today it is only screening and sign in to do before I go to my Bert. If it was a Covid rapid test day my journey from the entrance to my Bert would be 20 minutes instead of five.. He will come out very soon, I know.

In the meantime I look out and see the empty patio of the restaurant across the street. The OPEN sign blinks but it appears closed, desolate, and empty.

An ambulance drives by. No siren, no lights.

A truck rumbles by and cars come around the bend, some much too fast. My Bert loves to watch the movement on the street. Sometimes we play a game. I tell him I will count how many red or black or grey cars pass by. He will guess a number and I will guess another. He is delighted when he wins the game of course. He seems to win a lot.

My eyes drift downwards and see mounds of dirty snow. It is very cold and underneath the soiled snow is ice. It has been cold for a few days now. A few pieces of debris that escaped the plows are frozen in what was once soft powdery clean snow.

A woman walks her dog. Both are high stepping with an unaccustomed gait as they try to avoid the slippery icy clumps in the pathway. The recently cleared sidewalk is full of treacherous spots covered by blowing snow. I want to shout: “Watch out. There is ice underneath.”

My eyes move closer to our side of the street. Looking down I notice our patio is a jigsaw puzzle of ice, snow, browned grass where visible, skeletal trees and a still life of a Muskoka-like chair overturned and lying on its side. The storm had brought not only snow but also high winds.

The large gazebo looks forlorn. The roof is partially covered with snow. It is cold so the pattern is haphazard frozen in place by the final gust, and soon there will be no pattern if the weather forecast holds true. There will be a white shroud covering that roof.

The smaller gazebo still has two chairs inside. They are weather proof but I have learned to distrust the hype of weather proof furniture. Will they survive to support residents or visiting caregivers through spring and summer and fall?

I long for spring. I long to be outside with my Bert, talking with other caregivers, sharing experiences, greeting each other and bonding in new friendships made possible by a terrible disease that holds our loved ones in its thrall. I am in a dark mood. I want to see the naked trees begin to dress themselves in foliage that spans the green spectrum. A sigh escapes.

I hear before I see.

“Hey, Mr. Bert, look who’s here?”

I turn. The wheelchair is silent and makes a noise only when it bumps the table as he is put in his spot.

“Hi, sweetheart. How you doing?”

My Bert looks up. He smiles. He gives a thumbs up.

“OK. That is good.” We both smile.

My once garrulous Bert is not talking much now. Yet he does talk.

He looks out his window and a flock of birds rise into the air.

“Look,” he says, “the birds up in the sky.”

I look up and see the sky, the birds, and their winged flight soaring high above.

I look at my Bert and he is smiling, taking pleasure in the simple flight of the birds. He sees the movement that tells him there are birds. His sight has deteriorated because of macular degeneration. Yet, he still sees.

I notice the smile remains in place. He is content. I arrange my face to match his. I have to be positive. We begin the game.

The Meander: Moving from the Doldrums to contentment takes effort. I may find myself back in the Doldrums as soon as I depart. But for now I will enter into my Bert’s world.

Recap to Forward

How were the holidays for you? I was going to ask how 2020 was but I know the answer to that. Unless you were under a rock in some undiscovered region of our planet you will have definite opinions on the pandemic year and I would guess the recap is not ecstatic.

Yet, it was not all despair. There is no need to itemize neither the many disasters nor the outpouring of kindnesses. The yearend pundits have done that ad nauseum.

Let’s leap forward into 2021. It’s January 1, 2021 and leap is the wrong word. The transition from one year to the next was so uneventful. I made a tour of New Year’s Eve celebrations on television that were not. The hosts of the non events tried valiantly but New Year’s Eve celebrations need people, music, parties, gatherings, community, and friends.

If it were not for the various fireworks displays streamed every now and then as we followed the dawning of the day around our world this passing of 2020 into 2021 would be just another night into day.

Yet this is a special passing from darkness into light, and although we are stumbling around in the dark there is some light. There are signs that a new day dawns.

Who would imagine that a vaccine would be the most positive highlight of a year or that so many would be anxious to roll up a sleeve to get a jab from a needle?

2020 was such a disaster positive spins came out negatively. Comments ranged from: “Well, I am still on top of the grass.” To “It could have been worse, I suppose.” The latter said with such dubiousness that you heard the unspoken: “but I don’t know how it could have been”.

Christmas 2019 I was so stressed going all out on the celebrations, fearing that it would be the last Christmas we would be together as a family in our home. We knew that a person with Alzheimer disease went one way only. Every recurring occasion, event or celebration could be the last.

Though 2020 made the fear a reality it could have been worse. We were all well, on top of the grass and Christmas was not cancelled. We did have lunch together with Zoom as the connector, and a new tradition was born.

I am not sure Corbert and Amy are aware of this new tradition as yet but I have already embraced it wholeheartedly. Until this pandemic year the family came to us. We had a great time but lord, was I tired afterwards. This year I went to them.

What a difference. I was pampered, well fed by the wonderful Amy, while Corbert got me whatever I cared for, set me up with a movie we could all enjoy, and I was able to watch the minuet as they both worked at the various tasks that resulted in a delicious meal. It was a special time of togetherness, family, love, sharing and caring.

That is my new tradition. I better tell them about it.

As for being together, that had special meaning because at 12:01 a.m. December 26^th we would be in lockdown. That meant being confined to our homes, only leaving for essential services like going to the pharmacy, grocery store or to medical appointments. Since I was sleeping over I decided going home qualified as essential especially as it included a stop with my Bert for lunch.

So now 2021 is here. How will it unfold? Who knows? I think it is good we cannot see the future. We can look forward with anticipation and hope. Hope is positive but there is a tad of negativity in the oft repeated phrase: “Well, it can’t get worse can it?”

When you are a caregiver to a loved with Alzheimer’s disease it can get worse. There is no denying that, yet my Bert is able to bring joy. He has two fixations these days. He looks at me and calls me his wife but is unsure that I am Paula. It seems there are two Paulas. One he met years ago and remembers and this old, masked, face shielded and sometimes gowned apparition who is somewhat familiar but is another Paula.

The next fixation is that he is often at sea when he is hallucinating. Most times he is on a cruise but at other times he is sailing with the Swedish Merchant Marines. He cruises a lot and usually tells me to show other guests (he sees them) to the dining room. There is logic to that as I always visit him to help out at mealtimes.

I want to be in his brain. First the Paula he is seeing is one I would like to see when I look in the mirror each morning. She was hot!

Oh, to be on a favourite cruise line, enjoying the sea, the people, the ports, the tours, the food.

My Bert and I are still living in true partnership. He is living in recap mode and I must look forward to meet what’s next. That is perfect symmetry.

The Meander: May we more than endure in 2021. May the new normal be an improved normal in a healthy world.

Happy New Year!

Honest Mistakes

Oh, the stigma of having a mental illness! Once we got the diagnosis of dementia – Alzheimer Disease my heart sank and I thought: “How do I cope with a mental illness?” It was an honest mistake. Dementia of which Alzheimer Disease is the most prevalent form is NOT a mental illness. Yet, I too immediately classified this brain disease as mental illness. It was easy for me to grasp the outcome of a stroke, or brain aneurysm, but deterioration of the brain without such a direct cause was suspect and to be shunned. Yes, we have come a long way in recognizing what mental illness is but there is still a stigma about it and since dementia concerns the workings of the brain it all gets lumped into that basket of things not understood. It comes down to being ignorant, not knowing, a state we dislike, so we stigmatize.

Persons with a mental illness are no longer shut away in an asylum, or ‘madhouse’. Both understanding and treatment have advanced where we now recognize mental illness as just that, a mental illness. On the other hand dementia is a physical illness. Although this disease is being studied and research abounds there is still not a definitive cause for the more than 120 types of dementia that have been identified so far. Technical and medical terms like beta-amyloid protein fragments usually referred to as plaques and tau or tangles are batted around. I now can bat around such terms with understanding but they are the mechanics of a disease that attacks the brain and leads to death. You can begin to understand the complexity of the disease when examples include Lewy Body, vascular, frontotemporal, Parkinson’s disease and even Cruzeveldt-Jacobs Disease which is the human form of what is commonly called Mad Cow disease. Naturally the latter is an example not trotted out too often as the word ‘mad’ is a red flag to any raging bull or misunderstood brain disease which can lead to even more stigmatization.

Another honest mistake is to think that all these numerous forms are just a different kind of Alzheimer Disease. Like Alzheimer Disease these are types of dementia. In fact Lewy Body has its own abnormal protein called alpha-synuclein buggering up the works in the brain. Each one identified has its own pathology and just to make life more difficult there is also mixed dementia which is now recognized as being more prevalent than previously thought. That is usually a diagnosis which is a combination of vascular dementia and Alzheimer Disease. It signifies too that the two main engines of our body, the heart and the brain are both compromised. I think since research is ongoing we could wake up one day and hear that ‘mixed’ is not only two, but three or four or more ganging up on one brain.

My Bert is a classic case of Alzheimer Disease. The last doctor told him his blood pressure was better than many younger people, to which Bert replied: “I am only 19.” I was not going to correct him to say he was a toddler in the brain department! Yet, it is true that my Bert is healthy. He eats well, has not put on or lost weight. Whatever negative symptoms he exhibits, and there are many, all stem from those darn plaques and tangles that are filling up his brain, interfering with the memory and communication processes. Messages are confused, delayed, misunderstood or not understood at all. We are both frustrated.

It is uncharitable to stigmatize anyone for any reason. We have had the honour to meet and become friends with a most accomplished, outstanding citizen, and the epitome of a gentleman who had actually been institutionalized in a mental health facility twice. He was completely cured and felt enormous gratitude for the professional help he received. He acknowledged the fact of having a mental illness. He knows the difference between that and dementia. Many of us do not. However we can learn.

The Meander: A doctor making rounds in a Mental Health facility sees a patient writing furiously. “What are you writing?” He asks.

“A letter.”

“Oh, who are you writing to?”

“Myself.”

“What does it say?”

“How the heck would I Know? The postman hasn’t come as yet!”

A doctor making the rounds in a Memory Care facility sees a patient painstakingly forming letters on paper.

“You seem to be writing a letter.” He says.

“Yes.”

“Are you writing to a friend?”

“Yes.”

“What does the letter say?”

“What letter?”

If I can Help…

“Hi. Love reading your blog. Thank you for all the great tips. You are sharing your experiences as a caregiver and in doing so you are helping us too. So much of what you write is just what I am going through. I learn a lot from you and it makes me realize I am not alone at this very difficult time.”

“Thank you. Yes, the road is long and difficult. It can be hard to find anything that brings joy especially on those trying days when nothing seems to go as you would wish.”

A group of caregivers were sharing experiences and tips about what worked for them in a variety of situations as they cared for a loved one. I was eager to hear of the solutions which were very creative. Topics ranged from encouraging your loved one to bathe with everyone wondering why most dementia patients seemed to be afraid of water, to that often discussed ‘shadowing’. We also discussed the missteps that tripped us up every now and then.

My story was in regard to my Bert talking to the photograph of his mother every night. One night he came from the room and said: “I love you, Mama.” I laughed and said: “I am not your Mama. I am your wife.” It took me an hour or more to calm him and to convince him that I was not rejecting him. My Bert looked at me with tears and said: “I know you are my wife, but you are my Mama too. You look after me.”

Apparently, that confusion in relationships was not specific to me. There were fathers who were jealous of sons who hugged their mothers; A father who decided his daughter was his sister and/ or wife; A husband who thought his wife was his personal support helper and the helper his wife. Come to think of it that is not too far off the mark. They were both caring for him.

One spoke about the mistake she made when she decided to have her mother go to the Adult Day Programme for a second day in the week. Oh, that got a very animated response. We all had had experiences of introducing a programme to our loved one. Nothing was wrong with the programme just that you are not there. Her mistake was to prepare her mother for the new routine by telling her she would be going to her special club now for two days not one. That she would have an extra day to be with friends, do some fun stuff and have a great time with the other club members.

Sounds good, except her mother only caught on to ‘extra day’. Mother was livid. Why was she being ‘sent away’ for an extra day? Did her daughter not want her around? Was she such a bother? The group got a most graphic recounting of the battle which was made worse when on arriving at the programme, mother asked her if this was the ‘extra day’ and was told that it was.

I interrupted the narrative to ask: “Why did you tell her it was an extra day in the first place?” She laughed and answered: “I had not yet read your ‘Therapeutic Lying’ post nor become adept at it. It was early in the game for me.”

I understood, totally. I too, knew nothing about Alzheimer’s disease but I learned with experience. It took me a while but I found out that sometimes the best way to protect and care for my Bert was by the sin of omission. When I added a second ‘club’ day, I said nothing about it. We just went on our usual day and two days later we went to his ‘club’ again. It helped that Bert was at the stage where days, dates, time were inconsequential. I did need to reassure him that I would be there to pick him up and we would go home together. After nearly two years in a Day Programme, I must promise him that I will come for him at 4 p.m. and then we seal that bargain with four little kisses. When I pick him up his smile could light a small town.

If my experience can help any other caregiver in some small way, I will consider that a special reward.

The Meander: Our loved ones trust us implicitly. We are their everything, literally. We agonize and experience stress when we know our behaviour is not quite what it should be. That is the real world. The answer for the caregiver is to remember that we have to live for two, act for two, do what is best for two. All our loved ones want is to feel safe, protected, and loved.

Lifeliners Friendship Songs

Recently, it seems every Lifeliner was experiencing something a little beyond the ordinary. (See Post: My Lifeline) I opened my inbox and there it was in very large and bold print: LIFELINERS THEME SONG. Jay had sent it with a beginning note that just said: “Have to share”. The message contained the entire lyrics of “Thank you for being a friend.” Immediately The Golden Girls television show came to mind but what resonated was that as I read, the words took on a very special meaning. They seemed created for us, this little group of Lifeliners. It was the perfect theme song. Through the marvels of the internet we adopted it in minutes and were emailing each other saying we were singing as we wrote and signing off with thank you for being a (or my) friend.

In replying to Jay I wrote “…that’s what friends are for and, thank YOU for being a friend…” Seeing the juxtaposition of the two songs I smiled to myself. I could picture all of us holding hands and dancing as we sang our newly minted Theme Song. We do like to dance. Then I wrote suggesting that we should put together a list of songs of friendship that was illustrative of the special friendship we share. I am not sure my finger was off the ‘send’ button when Jay responded with a list she found at the following URL: https://www.thoughtco.com/top-friendship-songs-3248289

It was an interesting list as it did contain almost all of the suggestions made by us for our Lifeliners song of songs. Here is a NOT a playlist but a compilation of Lifeliners friendship songs. The collection ranges from a 1927 song to Bob Marley, Frank Sinatra, Rihanna, Bill Withers and more. Perhaps, if you are interested you can find out for yourself who sang what if it is not already included in the above URL. Here goes:

I am “Tongue tied” as my Lifeliners “Stand by Me” through thick and thin. We know “Everybody hurts.” I know that “Anytime you need a friend” a Lifeliner will say “You’ve got a friend in me”. I am never lonely as “I’ll be there for you” yes, “I’ll be there” is the assurance from each Lifeliner. “With a little help from my friends”, “I believe I can fly”. Sure, “The road is long” and hard but, “That’s life” though none of us have any intention to lie down and die. Rather, on dark days when it is raining tears we will gather together under the “Umbrella”. When we say: “You’re my best friend”, we say it to each one and also to the group who singly and together are the “Wind beneath my wings.”

We travel this road “Side by side”. We support each other, we share, we care because “That’s what friends are for.”

Lifeliners theme song is “Thank you for being a friend”. What a precious gift we give to one another. We are grateful that we can share this giant, amazing “One Love” that lightens the darkness of our unique night and makes us feel alright.

The Meander: In writing this I realized how closely aligned friendship and love are. I realized that friendship is the amalgamation of Agape, Filial and Eros those major columns of love. Friends have been very special all my life. The best friends just are, no subterfuge no wearing a face. That is the power of friendship. Friends choose to be friends. You love them, you like them; you are in communion with them. To all my wonderful friends: Thank you for being a friend.

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?