#dementia - Meanderings

New Routine

After my Bert’s second bout of pneumonia a new greeting routine emerged. I had told a few people about how ill he was and all sympathized and asked me to greet my Bert with a hello, a hug and good wishes from them. I did.

As he recovered and I still got the greetings I would lean over and give him a kiss as I called the name of the person who sent the good wishes. He liked that though I am rather non-plussed at figuring out what he’s feeling as he gets those little pecks through a mask. I noticed too, that as soon as I entered he would lift his head, lips already pursed for the little kisses.

Thus was born the new routine. Now each day the first activity, whether he is my Bert or Alzheimer Bert, is to give him a little peck and call the name of the person who sent him the kiss, or hug, or greeting. Dear friends, you do not know this but if you should suddenly have ringing ears and you wonder who is calling your name, it could be me.

I usually begin with the usual suspects who send a daily greeting- family, close friends and neighbours, but I am the author of my own troubles as I decided he would get ten per day. I pluck names out of the air from among our many friends and although he will not remember the names from one day to the next, I will. For variety I call random names to go with each kiss.

My Bert loves this new routine. The last kiss is always from me after which he will ask: “Do I know them?”

“Of course you do. If they came in right now you would recognize them. They are our friends.” He gives a nod of satisfaction and smiles. Ah! the glory of therapeutic lying! It is one of the best tools in a caregiver’s tool box.

The new routine has also honed a hithertofore unknown talent of kissing through a mask. I notice that I am not the only caregiver that has now perfected this new talent. I can hardly suppress the giggles as these masked little kisses occur all around. What a talent.

Next is talking but only if my Bert wants to talk. If the day is a my Bert day then the conversation is happy, quite fast, certainly rambling and full of laughter. If it is an Alzheimer Bert day there may be silence, a nap, or awake with eyes closed but always holding hands.

It is then time to prepare for lunch or dinner depending on which meal I choose to lend a hand. First the garment protector aka the bib is put on. His drinks arrive first. There is milk, juice and water followed by soup at lunch, then the entrée consisting of protein, carbohydrate, vegetables and dessert.

It is no longer the new routine. My Bert has a good appetite and will rouse himself to have his meal. Although he can feed himself he will not do so when I am there. He drinks by himself but I must feed him the soup, entrée and dessert. We have that down to a fine art and it doesn’t matter if he’s animated or not.

There is one consistent action. After his meal whether it is my Bert or Alzheimer Bert he will usually doze off with a smile on his face, hands lightly clasped on his stomach. He’s content. I cannot ask for anything more.

I will not ask for anything more. I just want so much more. As I watch him doze I’ll recall that well know short version of the Serenity Prayer:

“God grant me the serenity

to accept the things I cannot change:

Courage to change the things I can;

And wisdom to know the difference.”

The Meander: I pray for wisdom but nefarious, insidious, devastating Alzheimer’s is wickedly wiser. The things I can change are becoming less and less each day so courage is on life support but acceptance is big and bold and serenely beautiful.

Two Berts

There is a recurring question from friends, family and anyone who knows that my Bert is in a home:

“How is Bert doing?”

My usual answer is: “As well as can be expected.” This seems to cover the basics. Depending on the relationship, the enquirer, the social interactions of the moment I might go into a bit more detail. My Bert is living in a Long Term Care facility so ‘fine’ or ‘very well’ seems inappropriate.

Any further expansion is also based on the Bert I am seeing at the moment. There are two Berts. There is my Bert and there is Alzheimer’s Bert. In the book My Bert Has Alzheimer’s I devote some time to talk about the necessity, stress and the confusion of living in two worlds. There is the real world and Alzheimer’s world. Now I have two Berts. I invented this new duality as a coping strategy.

When someone has dementia their moods, actions, words, reality can change in an instant. It means that each day I visit my Bert I do not know what I will find. Will he be in a good mood? Will he be morose? Will his eyes light up when he sees me or will they look through me? His mood dictates my inner feelings too. On those days when he lights up as I walk towards him; when he lifts his hand in greeting; when he holds up his head and purse his lips for a kiss; when he jokingly shoos away anyone nearby and pats the chair beside him for me to sit: That’s my Bert.

On the days he looks sullen and shrugs off my greeting and remains silent, that’s Alzheimer’s Bert. On these days I try every trick in the book to bring him out of that negative mood. Sometimes I succeed and sometimes not. My expectations then become basic. He must eat, drink and be comfortable. That is all.

My Bert days are wonderful. He is talkative. He asks questions and pontificates on subjects that only he understands. As example a few days ago he told me in no uncertain terms that the ‘things are moving’. After some cogitative expressions and a nod, in a very serious voice I said: “Yes, they are.” That must have been an acceptable reply as he nodded in satisfaction at the answer. I am still unaware of what the things were and to where they were moving. So what? My Bert was animated.

The very next day Alzheimer’s Bert was up front and personal. There was no greeting but a rather baleful look that clearly was saying: “Don’t bother me.” I donned the cheerful hat and in a clear voice said:

“Hey, are you not speaking to me today? Come on; say something out loud to me.” There was no response. The big grin I had was wasted under my masked visage.

“Oh, well. I am still speaking to you and I love you.” The word ‘love’ brings a flicker of interest but no verbalization. He ate his lunch, had his milk and juice but refused the water. No sweat. He had already had soup. This was clearly an example of you can lead a horse to water but you cannot make him drink.

I did not hang around after lunch. During that entire visit I heard only one word: “No.”

A day later was a banner day. The topic of conversation was happiness. My Bert started the ball rolling with: “You are happy.”

“Yes, I am happy.”

“Am I happy?” he asked.

“You tell me.”

“Yes, I’m happy.”

“That’s very good.” He pondered for a while and then said: “I’m happy. You’re happy. We are happy.” English lesson aside the grin on his face as he said those words was priceless. I laughed out loudly and gave him a hug. He was delighted and for the next hour or so that conversation was repeated every five minutes. Groan.

Then I got a reprieve. It was barber day so down to the salon he went. I waited for his return. He came back and his first words were: “Is it good”?

“Oh yes. It’s a great haircut. You are my handsome Bert.” He beamed. He wanted to talk but I was not up to another hour discussing the tonsorial splendor of his freshly cut hair.

No dawdling now. I give him the usual see you soon farewell and escaped.

The Meander: I love My Bert and wish I did not have to contend with Alzheimer’s Bert. I’m grateful that my Bert is the one that appears more often…still.

Life Sentence

Six to twenty years plus. This sounds like a prison sentence for a very serious crime. It is, although no crime has been committed. Yet that is the sentence handed down to every prospective caregiver of a loved one diagnosed with Alzheimer disease.

I heard it. It is a terrible verdict but unlike others this one is indisputable. There is no avenue for appeal.

My Bert Has Alzheimer’s: Caregiving is Living for Two charts ten years into that sentence. I have not marked off the years. There is no lumberman’s tally of the hours, days, or months. That is futile, but on the publication of this memoir it suddenly dawned on me that I may be only at the half way mark of that cruel and unusual punishment.

There is another part to this sentence besides its length. It should also include ‘at hard labour.’ Being a caregiver to a loved one with dementia is the definition of hard labour. One chapter with the heading Caregiver Job Description is a testament to that fact. Yet with all its details and list of requirements it is still only a glimpse into the convoluted life of a caregiver.

It is a chapter that resonates with readers whether they are caregivers or not. Caregivers of all stripes will remark on how true it is and add their own similar stories and experiences, while others will say: “I don’t know how you do it.”

Another unique facet of this sentence is that the diagnosis is for at least two people. The disease is for one but the following life of dealing with the manifestations and trajectory of the disease is for both parties. In fact a diagnosis of Alzheimer’s may be more devastating to the caregiver than to the patient.

Gasp! How can you say that?

It is easy for me to arrive at that conclusion. I am living it. My Bert is content. He has no idea what stress is now. His blood pressure readings are fantastic. In fact I know that almost everyone with this disease at this stage, has a fantastic reading unless there is an underlying problem that raises blood pressure.

Whenever my Bert has a reading I will tell him that he has the blood pressure of a teenager, and he, being the character he is, will respond saying: “Of course, I’m a teenager” or: “I’m only 19!” At least that’s what he used to say. Now he smiles and nods.

So as the caregiver I take delight in his contentment though I rail at the narrowness of his existence. But that is my worry, not his. There’s always a smile when he sees me whether he knows our relationship or not. Perhaps he has forgotten my name but he has not forgotten ME.

At times when I feel as if I am swimming in a sea of despair I also know I feel the despair because I am alive. I pause and breathe. I breathe and breathe in life.

The Meander: I hope I do not fall into the estimated 30% of caregivers who die before their loved one. The sentence continues but so does the adventure as our story continues and I have to live for two.

Lasts

It is Corbert and Amy’s wedding anniversary. I smile as I sign their card. I blithely write that it is from Dad and Mom. The smile fades. In its place is not a frown but a hesitancy, a new kind of indecision wrapped in doubt and some wistfulness. The question intrudes: “Will this be the last time I write Mom and Dad?”

I send a birthday card to a niece and write, with a flourish, from Uncle Bert and Aunt Paula. Another goes to a friend and again from Bert and Paula.

Birthdays, weddings, anniversaries, sympathy, condolences, get well and thank you cards were under my list of duties and all of them were signed by me for two. It was always from two.

It is the little incidents of thought, reverie, a shiny object, a souvenir and the simple signing of a card that can bring about an extreme sense of loss. All of a sudden I began to wonder about lasts. The last hello, the last and final goodbye, the last trip to the Home, the last hug, the last farewell to the staff, the last pondering of how to acknowledge the care given to my Bert.

We sit at my Bert’s table looking out his window. A slight gust of wind and the canvass awning on the nearby balcony rises and falls. My Bert looks out and says: “The wind is strong. Look.” The wind and the movement of the awning always bring some reaction. I wonder when it will be the last time for this.

What will be the last programme we share, the last pub night, the last musical presentation? Will I be holding his hands? When will I see that last smile or hear the last: “I love you too.”

Lasts are roiling in my mind. I contemplate the last hair cut, the last foot care, the last grapes I bring to him. That brings to mind the last food he will eat and I wonder if it will be regular, mince, puree, liquid or gel. Even food foretells the decline to the end. Should I ask that his favourite foods make up his last meal? Will the last meal be regular or potage or the drip, drip of a colourless liquid?

We sit on the patio and I make sure he is out of the sun. My Bert does not tan well. He goes from pale to lobster red and back to pale quickly. I put some sun screen on his hands and wonder: Is this the last time? I glance at the rose bush which is coming out strong and already I can envision the lovely yellow roses that will bloom soon. It is a beautiful bush and again I wonder if this will be the last time we admire it together.

I shake myself out of morbid thoughts and try to substitute happy lasts. For the life of me I can’t think of any. Last of anything is a precursor to an end. In the effort to move away from sadness I find I must move away from the lasts that involves anything to do with my Bert.

Forcing myself out of morbidity I immediately think of a last that I will welcome. Oh, how I will welcome the last day of Covid-19. What a celebration that would be when not just first world but the entire world is free of Covid-19? I am not sure that is possible but one can hope and dream.

What a conceit it is to think of the lasts with my Bert as being comparable to a world pandemic. Yet I think that the sheer enormity of both makes the comparison reasonable.

As I try to conjure up happy lasts I find myself reverting to endings. It seems that there are many more endings that are sad than happy. That should not be. Yet I see happy endings as fairy tales. It must be the mood I am in, the burden I carry, and the onus that sits constantly on my shoulder to be happy for my Bert. Now I appreciate how much I depended on him to enhance our natural joy. He carries so much joy in him. It is infectious. As I remember his wonder, his happiness in the smallest thing I know I have to try to maintain that childlike magic he has.

It can be wearying being happy for two.

It is Father’s Day. Along with a few gifts my Bert has received four cards. He has eyes for one card only. It is from Corbert and Amy and features his favourite pet, a dog. It is special. When you pull a tab the dog talks. It begs him to have a Happy Father’s Day, asks to be thrown a bone, pants and again the Happy Father’s Day wish.

The card is shown to every staff member; my Bert cannot get enough of it. I finally succeed in teaching him to pull the tab and he is delighted to hear the dog ‘speak’. He takes it with him to the patio. He has so much pleasure in this card that I find myself laughing along with him. He is so animated and pulls the tab so vigorously that I know the card won’t last long. That won’t matter. For now he is happy. When the card is pulled to pieces he might ask someone to fix it, but in a very short time he will have forgotten it. That does not matter either. We live in the moment. Take pleasure in the moment.

Yet still I wonder? Is this the last Father’s Day?

The Meander: Like floaters in the eye the worry about lasts hovers constantly but unobtrusively in the background. You almost forget they are there. Almost.

Kaleidoscopes

It was my birthday. There was a party. I got presents. The best and the most wonderful present was a kaleidoscope.

How magical. Every colour of the rainbow and every hue imaginable, jumbled, tumbled, scattered, reformed then rearranging themselves into fantastical patterns, symmetrical, ordered, pleasing. Awesome!

Disorder tamed and changed into order. A chaotic profusion of wild, disparate colours gathered and sequenced into beauty, a moving spectacle that you controlled simple by a turn, a little shake, the merest tremor and new patterns emerged.

Every different settling was new, surprising, and magical. There were enumerable moments of discovery filled with joy.

I have a new kaleidoscope. I am desperately twisting, turning, and shaking seeking its order. I want the chaos of my life in this kaleidoscope to fall seamlessly into place, into an order I can understand. My new kaleidoscope is faulty. No matter how I turn and shake and try to encourage it to form Tiffany glass creations of beauty and unity, I fail.

I can see bits and pieces scattering as they fall but they refuse to coalesce and, if a few do by chance, the result is disordered. It is a fusion of confusion. A hodgepodge of the past familiar intermingled with hiccups and blanks of the present. What is created is strange to me though the pieces are familiar. I have failed the course of making sense out of nonsense.

My Bert is my new kaleidoscope. The beautiful patterns we used to make together are now no more. He is a mirror that has lost its ability to reflect; a dancer without coordination.

As a child I wanted to go into the kaleidoscope to see how it worked. I wish I could go into my Bert’s brain to see how it is, see how it works and to see if there is anything I can do to fix it. Then again: “If wishes were horses, beggars would ride.”

The Meander: I kept my childhood kaleidoscope for a long time. It delighted and entertained. Then I lost it. My Bert and I have known each other for 52 years and have been married for 50 years and counting. I suppose that is a long time. He still tries to delight and entertain. It is an effort. I have not lost him. Not yet.

Chatterbox

I have been called many things over my lifetime but chatterbox is not one of them. Yet lately that is what I call myself, to myself. Why would I do that?

I am Canadian so I will blame the weather. This has been a particularly harsh winter. There has been much wailing and gnashing of teeth (mine) as my Bert, whose only contribution to our travel adventures was: “Where are we going next?” uttered before we had unpacked the bags from our last trip, is no longer allowed to travel. I had no idea that I would miss our travels, our winters away in some warm place or on a ship so very much. So here we were stuck in winter in our wonderful but COLD country.

My Bert would often say that Canada is the best country in the world except for the weather. I agreed, but would temper my enthusiasm with the thought that if Canada had perfect weather it would be perfect and there is no such thing.

Here is another observation that my Bert would voice often: “Paula is always telling me that I talk too much but she talks too.” “Yes, I talk but not anywhere as much as you and in any case you are such a talker, someone has to be the listener” I would answer. Then with a laugh he would say: ‘That is why we have the best marriage. I talk and you listen.” That was said with a tone to make it unbelievable. Yet, all that was true.

My Bert is really an open book and loves to talk. Many a time we have been to a restaurant and before dinner is completed the entire wait staff knew more than they should about us, from how we met right up to our present situation. I would be kicking him under the table to tell him to be quiet to no avail. I would be ignored. I would then have to become the interpreter, rephrasing or correcting or echoing my Bert’s pronouncements and also becoming a listener.

Oh, how we talked together. My Bert had such stories to tell! We are both curious about our world, our country, people, places and things. My Bert devoured news and current affairs. I read and we talked about everything. Our conversations encompassed silly things, weighty things, family things and couple things. We agreed, we disagreed and agreed to disagree and we laughed.

Oh, how I miss that talking together. Now, trying to have a conversation is a Herculean task. I give up any thought of having a sustained conversation. In the absence of that verbal communion I have become the chatterbox. The sentences are made up of the basic noun and verb. Heck, it could be just one word. I get back one word in return and sometimes the word returned is completely out of context. When my Bert attempts to express a thought it ends abruptly halfway and I try to finish it. Sometimes I succeed but that is becoming more difficult as time passes. It is difficult to enter Alzheimer world when a thought is unfinished.

The inanity is mind numbing. When does speaking become just noise? When does it lose its main function of communicating? It tests my patience and it saddens me to see him struggle to find the words. I think he knows what he would like to say but it takes a valiant effort to get it out. Sometimes he just gives up. The frustration is apparent. He begins to pick at his fingernails and mumbles.

How can I relieve the anxiety? I say: “Don’t worry. Tell me tomorrow.” Then I will rub noses or give a hug. These now are the best communication tools. There is no need for words then.

The Meander: Should anyone be looking for ‘tomorrow’, ‘soon’, ‘later’ please check with a caregiver for a loved one with dementia. We have usurped them. We are wearing them out completely. “When do we go to Breda?” That is Bert’s birth city in The Netherlands. “Tomorrow.” “When are the kids coming?” They left maybe ten minutes prior. “Soon.” “Are we going to bed now?” We have just finished lunch. “Later.” A loving touch, a smile, a hug and holding hands are enough to relieve his anxiety. We still ‘talk’.

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.

Conversations

Consider these conversations. We are driving home from a double day date with Lifeliner Jackie and her Bob when my Bert says: “Are we going to Canada”? No use trying to explain, just enter his world and answer: “Yes, we are.” I have not finished saying those three words when Jackie’s Bob pipes up with: “No, we are not going to Canada we are going across the bridge to Winnipeg.” His wife and I share shrugs and looks as I distract with: “Lunch was very good today.” The conversation turns to lunch. Good.

“Bert, come and watch this. Our Dutch son has sent us a video. It is funny.” We watch together and laugh.

“Where is he?” Bert asks.

“He is in Amsterdam, in Holland.”

“No, it’s The Netherlands.” That’s my Bert. He makes this correction as always. “Tell him to come for a visit, or maybe we can go to see him tomorrow.” This is an easy one to deflect as by tomorrow, actually within the next five minutes or less he would have forgotten the whole conversation and video, so I say: “That’s a good idea. Maybe we can do that.”

“Sweet P, are we going to Europe tomorrow?” Without thinking I answer: “No.”

“Why not?’

Fast thinking: “Because we have two doctors’ appointments and we cannot travel until we get those done.” The appointments are real.

“Oh, OK. We can go to England tomorrow then.”

“Yes, we will do that.” My Bert smiles. All is right in his world again. Gosh, you lie so easily, I tell myself.

Yes, caregivers lie. It is a skill we develop over time and it is a critical one for both your loved one and for you. You get more adept at doing it but every care giver will tell you it is not an easy one to perfect.

Imagine a child lying to a parent. The same parent who taught that lying was not to be tolerated. My Bert and I made a pact that we would not lie to each other. Now I lie almost every day. There is still a frisson of guilt each time but the alternative is so much worse. If I were to begin explaining that going to England tomorrow is not feasible it would only result in frustration and anxiety leading to anger and distress.

Caregivers live in two worlds and become adept in Alzheimer’s communication. At first it is hit or miss as you are being logical and Alzheimer’s world is illogical. Why argue? Why be angry? It does not matter to your loved one. You only make yourself frustrated and in a minute or two that anger is festering only in you as your loved one has forgotten all. I find the ‘tear out your hair’ and ‘banging your head against the wall’ moments are beginning to lessen as I advance in Alzheimer’s University.

Of course those moments will continue to occur. You are trying to communicate with someone who cannot reason. You can no longer begin a sentence with “remember”. You cannot say:”I just asked you to” or, “I just told you!” You can say that till the cows come home, means absolutely nothing.

Preparing dinner is wonderful. Bert loves to help and seeing I am somewhat lacking in the culinary arts he was the cook for most of our marriage. Now that my Bert is my toddler his kitchen duties are limited.

“What are you doing? Can I help?”

“No, darling this will not take long.”

“You never let me help anymore.”

“OK. You can help. Please put that in the garbage for me.” I point to the vegetable peelings. He does it.

“What are you doing? Can I help?”

This goes on enumerable times as I get him to set the table, one utensil at a time, one knife, fork, spoon glass, and one plate while I get on with any preparation I have to do. Every time my Bert asks to help, I give him one more item. It is only the two of us but by the time the garbage is in the bin and the table set, whatever is in the oven is ready. If I need more time I will tell him to go wash his hands. If I am lucky he will wander around looking for the bathroom, becomes distracted when he sees his chair and sits because he has forgotten what he was going to do.

Alzheimer’s communication is a lot of distraction, deflection and accommodation. You develop the skill for therapeutic lying. Here is what makes it bearable and easier as time goes by. You lie to protect, to preserve dignity, to console, to reassure, to show respect. You lie because you care.

The Meander: To my fellow caregivers. We learn to live in two worlds. We learn so many coping skills as we travel this journey. Learning to lie is just another of those skills. Always remember we lie because we love.

Alzheimer’s World

The first time I heard the phrase Alzheimer’s World I was sitting around a large table at the Alzheimer’s Society office. It was a mixed group of persons with Alzheimer’s disease and other dementia and their caregivers. We were learning about the disease, its progression and available resources. What they could not teach us was how to live in that alternate world.

Caregivers have no choice. They do live in two worlds, the everyday one we know as the real world and the one that is Alzheimer’s world that our loved ones live in. If we are to be successful caregivers we must learn to also live in that other world.

It is difficult. Alzheimer’s world is a backwards world because your loved one is on a backwards journey. Right now my Bert is 85 going on four. A different puzzle is presented each and every day which only you, the care giver, can solve. Today he puts on his shoes one brown, one black. There is an easy solution to that. You make a joke, point it out and he changes them. He picks up a slice of bread and calls it cheese. No problem, you correct it or you say: “that is strange looking cheese.” That brings on a laugh and: “Did I call it cheese?”

Alzheimer’s world is one of anxiety. You can empathize. What if you wake up one morning look at your toothbrush and had no clue what it is, what it does but know you use this thing every morning? Today you look at a banana and call it steak, even though somehow you know that is the wrong word? How about getting up to go to the bathroom and being lost in a condo? Would you like to look at a washcloth, while sitting in the bathtub yet completely at a loss of what to do with it?

It gets a little more complicated, of course. These little slips are unimportant in themselves when they happen once but when they become habit it is a signal that the disease has gained a tiny bit more ground. Then the caregiver steps in. You take the washcloth and prepare it and explain or show by gestures how it is to be used. Every day I say to my Bert: “Here, start at your face and work your way down.” He gets to work. He now knows what to do and knows why he had that piece of cloth in his hands. More important he is doing it himself. Dignity is maintained.

Alzheimer’s world is suspicion, anger, feeling lost as well as a loss of control. It is confusion, dependency, a vast expanse of bewilderment. It is a loss of time, place, space, skills. It is disorienting as your entire world becomes narrower and your trust is placed in that one who is always there that you ‘shadow’, that you trust.

The caregiver cannot stand outside in the real world and look in awe or dismay at Alzheimer’s world. You must enter it, you must live in it. Empathy is your power, patience is your tool. The brain is still a mystery. We know in part only. As a caregiver no matter how bizarre that alternate world seems you must suspend your disbelief and go with your loved one into that world. You ask yourself: “What is it like to be so confused you have to give up your autonomy to someone else?” Then and only then can you serve with understanding and love.

I look at my Bert and when he cannot find the words or gets lost between the kitchen and the laundry I wonder what is happening in his brain. Does he feel as if he is trying to swim in tar? Does he feel he is in a vacuum? No wonder dementia patients get angry and lash out at the ones nearest and dearest, the ones they trust implicitly. We are there, easy targets and maybe this is the way they have a bit of control. They are engaged in a battle of heroic proportions to stay ahead of an incomprehensible disease. They wage a daily battle just to BE.

The Meander: No one can have a desire to live completely in Alzheimer’s world. It is too awful to contemplate. Yet, as bizarre as this sounds, there are times when you look at what is happening in the ‘real’ world and it is a relief to step into Alzheimer’s world and just focus on your loved one.