Alzheimers - Meanderings

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’.

Resolutions

No doubt resolutions are being made left right and centre. Resolutions are being broken even as I write. Resolutions made at the stroke of midnight as 2019 dawned are already in the trashcan of what might have been. I rarely make resolutions even though I see the New Year as an opportunity to begin anew, to look forward, even to dream and to plan. However, to continue my ruminations on 2018 I have decided to take a leaf from Melinda Gates’ book and choose one word to guide me throughout this year. It has been reported she does that and since I am not that enamoured by resolutions this seems a good alternative. I have chosen ‘Light’ to be the word that will guide me throughout 2019. I have decided to walk in the light to see the light and whenever possible to be the light. It sounds laudable but I have to acknowledge that this may be the hardest objective I have ever set. Yet at the same time I have some confidence that it is the one I may be able to attain.

So far keeping resolutions has not been my forte. I am going to lose weight is a recurring theme which starts with gusto and swiftly ends with gusto – usually with the Valentine chocolates. I am going to start and stick to an exercise regimen. Yes! Except that I have not decided which year this is to begin. Since I make the resolution at midnight I should begin on New Year’s Day. If I have stayed up until midnight I am too tired to start that day, and by January 2^nd the enthusiasm has curbed to the point of lethargy and there is a book somewhere that is calling me. How much more civilized to exercise in such a peaceful, restful, and for me the necessary occupation of reading a good book while swaddled in a soft throw and curled in my favourite chair. The mind needs exercise too!

This year I am transitioning from the ridiculous to the sublime of resolution making. No resolutions, just a word and determination. Walking in light, seeing the light, being the light is incredible conceit, a pipe dream, or maybe setting me up for failure. Yet I think, even though it is only day five, that I will succeed better than I have ever done before.

Living with a loved one with Alzheimer disease is living in darkness. Caregivers know that because until this we have lived in light. This is my first purposeful plan that is not me focused. This is for my Bert. My Bert needs light. He needs to see the light outside, inside and see me as light. His happiness is my light, my happiness is his light. Caregivers live for two. I want to shine a light for my Bert, for other caregivers and everyone I meet. Still I am being selfish as I believe I will benefit the most if I succeed.

This is also the first plan that will perforce depend on outside help. It is family, Lifeliners, friends, counsellors, my support system who will walk in the light with me, seek to see the light with me and encourage me in my efforts to be the light. They know and they care.

The Meander: “Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.” — Helen Keller

This is from someone who knew the dark intimately. I wonder how invincible I can be against Alzheimer disease. Then again it is not a ‘difficulty’ it’s a disease. I do not have to be invincible. Come walk in the light with me.

Ruminations on a Year-2018

We look at the world; the world looks back at us. Some call me brave. Brave? Far from it but I do accept responsibility. They call us a loving couple and that we are.

“Oh, Bert looks so well, you would hardly know he has Alzheimer disease”. If only they knew. I choose to accept the compliment on behalf of both of us, after all carers get so little thanks, if any.

“How can you write so positively about your situation?” I choose to do so. No, I do not have a Pollyanna complex. Rose coloured glasses obscure too much. I have to see clearly not just for me but also for my Bert. I hurt. Of course I do. However, I am grateful that I do see the glass half full and have been blessed by an offbeat sense of humour and with a partner who makes me laugh.

“You are a Saint.” Hah! Leave that sobriquet to Mother Teresa. There are times when I must be more akin to the devil incarnate. Have I experienced bitterness? Yes, but as Norman Vincent Peale said: ”Change your thoughts and you change your world.” Sure I will have negative thoughts; they come with the territory, but I hope they are not bitter.

In 2018, the learning curve reached a peak. We sit on a plateau not knowing when the change will come. Will it be again upward or will it be a downward helter-skelter tumbling into the abyss? More than likely it will be a combination of upward learning as we tumble ever downward. I choose to let the future be, holding on to the present and refusing to be weighed down by the past. 2018 taught us we can live, differently yes, but live nonetheless. This is neither bravery nor sainthood, just accepting the things we cannot change.

In 2018 I learnt banging my head against the wall only results in a headache. Therefore I count to ten or maybe twenty or maybe… I must be long past a million by now.

In 2018 I learnt that I am actually quite pragmatic as I know I have to acknowledge the darkness. I have to grant how awful, how evil, how depressing this disease is. Yet I must also look for the infinitesimal spark of light within that darkness.

2018 taught us to live by smalls, like small mercies, small moments, small comforts, and small miracles. We learnt to wonder at the beauty of one song within the symphony, one iridescent droplet after the rain, one star within the constellation. In a shrinking world our universe expanded.

In 2018 I would sometimes awaken with tears streaming and fall into a chicken and egg reverie. Are these tears of joy for a rare good night’s sleep or is the sadness deep in my soul finding release? I try to unravel the conundrum while in my suspended animation shifting between waking and sleeping I endeavour to decipher the meaning of the tears.

The yin and yang are played out in every way thinkable every day. It seems that happiness and sadness are always holding hands, walking in tandem and interlaced with uncertainty. What’s next is an ever present question and the answer is always we do not know.

The Meander: As a new year dawns I promise myself that when I see myself sliding into the slough of despair I will ponder the imponderables: How can there be darkness if we do not know light; how can we know good if there is no evil. I can be joyful because I am intimate with sadness.

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?”

Blips and Dying Cells

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.

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.

I Am Thankful

Gratitude n. being thankful, appreciation of and inclination to return kindness.

I believe that every day there is something for which we can all be grateful. It can be small or large, internal or external. It can encompass all nature, thought, the physical as well as the meditative. No doubt you have heard the variation of the theme of being alive. The simple, polite inquiry of: “How are you?” will bring an answer like: “Well, I’m still alive” or: “I woke up this morning so everything is good.” My favourite answer is: “Well, I am still on the right side of the grass.” That always brings a smile to my face. I am grateful for that smile.

However, these last few days I have been filled with a special kind of gratitude. It is one that came after my unwanted but necessary visit to the ER. I am feeling poorly, in pain and my number one priority is the care for my Bert. How will I cope? There are so many little chores to see to, too many to count. I was worried but I should not have been. We are blessed by having the sort of neighbours and friends that come to your aid swiftly, competently, caringly, without question.

I am grateful to the Lifeliner who was at the door to pick up the prescriptions and get them filled. I am grateful for the neighbour who instantly took away the worry of getting my Bert to his Day Programme. “Just tell me what time to pick him up and I will take him.” How precious an offer that was. Here is someone my Bert will find familiar enough to accompany without a fuss. I can go back to sleep and with the Valium still coursing through my body, I have no choice, really.

Then there is the neighbour who brought dinner in a beautiful wicker basket which had everything including two lovely serviettes, such a cheerful and most welcomed gift.

I am grateful to the Lifeliners who could give practical, hands-on help and those who could not who sent words of cheer, good wishes and prayers. I even got instructions to turn off the phone.

Once friends heard, the offers kept on coming with a couple wondering why I had not called immediately. When I explained that I was calling the ambulance at 2 A.M. the reply was: “You can call me at anytime. You know that.” Yes, I do and I am grateful.

Our family of friends and neighbours came through like a ray of sunshine to scatter the dust motes of my anxiety. Yes, we do appreciate the kindness and have more than an inclination to return it. That is how kindness works. There is a continuous lightness of being, a positive feeling that things will work out well. I am grateful to all the people who turned my darkness to light.

Thank you!

The Meander: In this troubled world where everything seems so dark, selfish, and full of hate it is good to be reminded that there are so many more people who are kind, thoughtful, caring and filled with the milk of human kindness.

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.

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.

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.