Paula - Meanderings

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.

Penguin Affair

Our love affair or maybe I should say my love affair with penguins did not have an auspicious beginning.

Imagine this. It is February 13^th. I am not subject to triskaidekaphobia. The number 13 is just that. It was Ash Wednesday, the middle of summer. Yes, we are almost at the southernmost end of the world though that would come the very next day in Ushuaia, and it is bitterly COLD. We are in Punta Arenas,Chile. Everyone is shivering and bundling up in all kinds of layers.

I want to see penguins. The ship’s penguin tours to Magdalena Island were all cancelled because of the inclement weather. We had not signed on for any, rather preferring to go on an overland tour to the Penguin Sanctuary of Otway Sound with a private taxi/guide. It is a smaller colony of some 60,000 Magellanic penguins spread over quite a large breeding ground and park for public viewing.

We bundled up and went ashore even as the weak sunshine turned to rain. So what, we thought, we are only a hop, skip and jump from Antarctica so summer can be wintery. We were very lucky. There was this taxi driver who seemed to be just waiting for us. I told him where we wanted to go. He looked at me with a slight air of bewilderment and said: “It is wide open space and windy today. Here in Punta Arenas, even in summer we can get rain, sleet, snow, ice and even a bit of sunshine in a matter of hours. Today is not a good day to go to Otway”. I said with the confidence of the ignorant.“Well, we can stand a bit of rain and we are Canadians, we know cold weather.”“OK.” He said and it sounded as if he swallowed “but it is your funeral.”

We negotiated a price and felt very simpatico towards eachother. Bert suggested we go to his favourite bar on our return for a drink. If I was clairvoyant I think I would be able to read a bubble over Carlos’ head saying: “You’re going to need it!” However, we were becoming fast friends. Carlos told us his wife taught English and would love to speak with us to get some practice and would we mind if she came along on the trip. Sure, no problem. Carlos called then drove home and there was the beautiful Ximena waiting. She had two very heavy overcoats, both belonging to Carlos and said: “These are for you and your husband. There is a cold wind out at the colony and you are going to need these.” How thoughtful.

Off we went. The rain turned to sleet. We arrived at the Sanctuary with driving sleet and a biting wind. The attendant asked:“Are you sure you want to walk out to see penguins in this weather?” I answered: “Oh, yes.” She shook her head, told Carlos to go on,that we could pay her when we were leaving and waved us in.

I did not think about this being somewhat foolhardy until Carlos opened the door and Ximena gave me a coat. We were the only visitors. A blast of wind rocked us as bits of ice hit our faces head on. What a walk!

Penguins! They approached us all ready for the formal ball! A group of about seven came toward us. I crouched down, and mindful about not touching them, spoke softly to them. They spoke penguin and I spoke English and some Spanish and we communicated. They came right up to me and followed wherever I went. One came close enough to peck at my hand. Carlos was quite surprised how comfortable they seemed with my presence and joked with Bert that I must speak penguin. However, even with the extra coats, both Bert and I were shaking with the cold. I looked at Carlos and he was not too happy either. With regret I said goodbye to my penguin companions. They followed me as we walked away. I had the biggest closed mouth smile as I thought my teeth would freeze if I opened my mouth.

I approached the attendant with the fee ready. She looked at me and said: “Senora, if you were so determined to see our penguins in this weather, you don’t owe anything. Was it worth it?” ”Oh, yes it was a short but sweet encounter, and they came to me. It was a love affair.” She smiled, shook her head and handed me some pamphlets.

Ximena, who had wisely stayed in the car, invited us back to their home saying we needed to have a hot drink. At the mention of something hot Bert forgot the bar date. We accepted and were soon chatting animatedly with Carlos and Ximena , their children Carlos Jr, Gabriel,Stefan and Paulina. The tea was ambrosia and a panacea. They offered a meal but that we politely refused citing the plenitude on the cruise ship. I could not stop talking about my penguin affair. A Good English lesson, I thought.

The Meander: I fell in love with penguins on that miserable day. I have seen them in South Africa, In Ushuaia, The Falkland Islands, all over. I have penguin memorabilia. February 18th in Puerto Madryn, Argentina we went on tour. It was a marvellous summer’s day. I was surrounded by penguins. If only I had waited! No, Otway Sanctuary remains my penguin first love. Why? As the only visitors the experience was personal. It also had Carlos and Ximena and their kindness. Gosh, I love to travel.

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.

Small gift, Big Lesson (PNG)

“Lady, lady, for you.”

I looked down to see the little boy tugging at my pants and holding a small, colourful, Bird of Paradise woven basket. It was the same little boy I had just met at his mother’s stall. He had such beautiful eyes. I taught him ‘Inky Dinky Spider’. We bonded.

We were in Papua New Guinea at the port of Lae. The cultural tour was over and my head was a maelstrom of weird and wonderful bits of information.

Mourning rituals: When a husband dies the wife is locked away for a minimum of six months. She lives in a semi-starvation state and is looked after by other women in the tribe;
Some women make beads for each day of mourning. Count the beads and you will know how long she mourned. 250 beads means she mourned for 250 days.
The MUD people are one of over 700 tribes and language groups in Papua New Guinea. Pidgin English is the only shared language. When a mud person die they must be buried near their home. If one should die far away a collection is taken to bring the body home.
Mud people have various death rituals all of which end in the body being mummified in mud in some way except for the method where the body is left out to be picked clean by vultures and insects. The bones are then put in caves or kept near the home. The head is revered and is kept inside the home. “Would you like to meet my father?” is not such a simple question as if you answer “yes” it may result in your actually meeting his skull. We were told that one man kept the skull of his first wife in a zippered carry-on bag, introduced her to all and sundry and spoke to her frequently. Needless to say such luggage now holds a somewhat macabre fascination and I often wonder what marvellous mementos are ensconced therein.

Then there are the Bird people. Birds with plumage that defies description, flaunting colours that cannot be duplicated abound, and are indigenous to Papua New Guinea There is an almost supernatural connection between the people and the birds. They infiltrate all areas of life – the religious, social, political and the magical. Ceremonies always include people dressing up with feathers, aping the stance, movement and nature of the birds they try to replicate and emulate. Then there are the Mesmerizers, but that is another story.

Now here we were in the market, much bigger than usual as a cruise ship was in port and this little man, maybe five years old is giving me a gift. I laughed as he tugged and held the miniature basket/purse aloft smiling shyly. “Thank you. Thank you.” I handed it to Bert and got out US$5.00 from my own purse. Before I could hand it to my little friend the mother appeared as if from nowhere and said: “No. No. Basket gift. No money”. Her words did not match the look in her eyes which was one of reproach. She said: “No pay. Gift.” I got the message.

Dropping to my haunches (I could do that then) I enveloped the boy, hugged him and said “Thank you” again. He giggled. His Mother smiled. I looked over at the grandmother still at the stall and she gave a slight nod and a gapped- toothed smile. I felt a shiver of shame. If I was at home and got a gift I would not go to my purse to offer money. Here I was, someone who prided herself as a traveller not a tourist doing a gauche touristy thing. Unintentional, well meaning but a blunder.

Our little friend said something to his mother, she nodded, and he held my hand and said: “Come.” The six of us in our party all followed him as he led us to many stalls. Everyone seemed to know him. Del made a remark that he was a born leader; a Mesmerizer who would be able to get anyone to follow him. When we got back to his mother’s stall Bert did the right thing. He looked at all the offerings and bought a wooden ashtray, a woven tray with two place mats, a tiny bowl rimmed with shells. He was able to do what I wanted to do. He gave them much needed currency in the best way possible by purchasing the goods without barter.

Our little friend accompanied by his grandmother came to the shuttle bus to see us off and waved enthusiastically as we left. “Bye, lady.” We waved back until they were out of sight.

The Meander: All the things Bert bought went into the ship’s auction. I kept my little basket/purse. I will not use it but it reminds me of my little friend. It reminds me that life lessons may be learned anywhere and when you least expect it. I have not made such a mistake again. Every gift needs only a simple “Thank you.”

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.

Day at Sea

I was going to write about a visit to Papua New Guinea but as I flipped the pages of my travel journal I came upon this ‘Day at Sea’ entry. I read it and realized just why we enjoyed our cruise trips so very much. At sea you can do as much or as little as you want and you never have to do the dishes. This sea day is a good example.

‘Breakfast in the Lido was great as usual. I do appreciate the service. Bert and I just choose what we want and there is staff to take it all to our seats. The ship was not rolling. The sea was calm, glass smooth which made me wonder if we looked as if we needed the extra help. No, it was a service.

Next came a trip to the library. There is a new librarian on board. The last one was Canadian, this one is British, a bit prissy until Bert told her I was a librarian and being Bert and my number one fan, she got a bit more information than expected. She thawed, visibly. Bert borrowed Hitler’s Willing Executioners by Daniel Goldhagen which I did not think was cruise reading but then WWII is of special interest to Bert. I took out Alice Walker’s short fiction collection The Way Forward is with a Broken Heart. I do like her work, this was somewhat autobiographical which drew me to it and I had not yet read it.

We went to lunch in the restaurant and met some people from the USA and a couple from Germany. Good conversationalists all and found out that the German couple would be on board for the entire cruise too. The ones from the USA would be leaving earlier. I selected lunch from the ‘Spa Menu’ – light, calorie controlled, low salt and delicious. It is so much better when someone else cooks it and all you have to do is eat it.

Bert read while I decided to go to the ‘Stretch and Relaxation’ class. (Note: You can tell it is early in the cruise if I am on ’spa menu’, doing exercises and living a somewhat virtuous existence.)

We went for tea. Really this is not needed as we are on early seating for dinner. Where did the good intentions go? To hell, I must presume.

Dinner companions will be with us for a short time as they are only on board another 15 days. There is Ruth, who had a birthday yesterday, Barbara and Eleanor, travel companions who live in Los Angeles and Willem, who is a dance host on board from The Netherlands. Willem will be around for the entire cruise but not necessarily at our table. The dance hosts are usually seated around the dining room at tables where there is a high proportion of single ladies. It did not take long for Bert and Willem to start the usual joshing and teasing that occurs when Dutchmen meet. That was fine by me as I found the women to be very interesting.

The evening’s entertainment was a lot of laughs. There was comedian, Mel Mellers and a multi-instrumentalist Simeon or Simon Woods who kept us in stitches.

It is time to work off dinner so off we went to the Yacht Club and got lucky. The OPUS Caribbean Band was playing and the party was in progress. They are the house band and play a variety of dance music. Just about everyone was having a great time. At one time I was worried about Bert’s knee but he was in the swing of things and having a ball. It does not matter if you were the world’s best or worst dancer at all. The object was to have fun and it seemed the crowd was hell bent on doing just that.

We made plans to meet two other couples for breakfast and agreed to share transportation next day to go touring. It should be a good day as we had all looked at the tour brochures and were interested in seeing the same sites and attractions. We also promised others to be in the club to be back for more dancing.

We closed out the club that night. I might have danced off dinner but certainly not the drinks. Not to worry, we are on vacation. Maybe just maybe I would walk it off tomorrow depending on how much walking there would be on our sightseeing tour.’

The Meander: What a pleasant and relaxing day. What a day of doing just what you want to do. How wonderful it is to meet people, to find common ground, to laugh, make connections. We have some dear friends whom we have met on our travels. They are a very important part of our travel memories. Travel unifies.

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.