#living with Alzheimer's disease

90 Going On 2

I asked Alzheimer’s: “Is this the last birthday?” It did not answer. There are some things even more mysterious than Alzheimer’s and beyond its reach.

Going on two is a misnomer. The reversal of life that is a hallmark of dementia means that the operative words are ‘going on’. A two year old child is more animated, more rambunctious, more vital, more mischievous and more aware than my Bert. Yet all those adjectives are applicable to him too. Add strong, resilient, great teaser, fun and you get an idea of my Bert the old man/child – when.

August is the busiest birthday month. There are more birthdays to remember than days in the month. There is one particular day which has four birthdays.

August is special too, as the two most important men in my life are both August men, both Leos and both precious. They are my husband and our son.

August 2022 is noteworthy for my husband as he celebrates his 90th birthday. To mark the occasion 15 family and close friends gathered for lunch. The food was good, the company great, the conversation flowing and the focus all on my Bert.

It was a far cry from the blockbuster parties of years gone by because my Bert is 90 going on two. Alzheimer’s is to be blamed for that cruel reversal. The voluble, smart, life of the party, consummate host, charming Bert is almost mute. That’s aphasia. Just three weeks before he was talking up a storm but as that darn Mr. Murphy and his law would have it, he had lost the art of speaking by the time his birthday came around. He still says the odd word, with coercion, but you now notice the difficulty of pronunciation and how at times what he wants to say comes out garbled and sounding strange.

He nodded, he smiled, he understood. He did not go to sleep, nor show disinterest. He played with his niece, our son and daughter-in-law and held on to all hands. He still has a firm grip. He remained alert yet it was a day that he was more Alzheimer’s Bert than my Bert. I hope I was able to hide the sadness.

The man/child was happy as the birthday cards came out. There were cards that sang, talked, cards with dogs in a conga line, cards which lit up, 3-D cards, cards that popped, unfolded and were filled with pictures and photographs and other conversation starters. There were helium balloons that now decorate the sliver which is his world. They will remain as long as they are afloat, withering away slowly, fading, losing their substance and drifting to the ground, mirroring the slow decline and loss of heft of my Bert.

At 90 every day is worth a birthday celebration.

At two you are allowed to be happy every day looking forward in anticipation for what comes next. The future is before you. The sky is the limit.

At 90 my Bert lives just for this day. The present is always the only now and it is fleeting.

The Meander: Happy Birthday, darling. What a wonderful life. Your past is filled with amazing memories that you no longer can recall. No matter, I’ll remember for you.

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.

Living In Reverse

Today this is the exact report for my journal under the heading: My Bert.

The Care Conference went very well today. My Bert got a great report. If he was in grade school he would receive an A+.

What is even more important is that I gave the Home a very good mark also. My questions (I had notes) were all answered. My concerns were addressed and we arrived at solutions that were agreeable to all parties.

My Bert is eating well at 70 -100% of his meals. He eats 100% when I am with him and he is well hydrated as he drinks his liquids. We found a simple solution to my concerns about week four of the four week eating rotation.

The doctor was as usual professional, delivering advice, answering queries and giving explanations of medications and a history of Bert’s condition since the last Care Conference. This is all done with empathy and a degree of care not only for my Bert but for me too. I appreciate that.

The physiotherapist is focusing on both upper and lower body strength exercises and I do see the results whenever my Bert does programmes like Zumba, chair yoga and other group exercise sessions. Though wheelchair bound atrophy of the muscles is being slowed by physiotherapy.

Recreation reports are all positive. Bert participates well. He is ready for pet therapy, every kind of music programme, stretching classes, one on one activity and pampering, of course. Macular degeneration does not stop him from playing with the oversized jigsaw puzzles, blocks or cubes.

He loves picture books, especially if they are about cars, trains, airplanes and flowers and there is a good supply of them.

The nurse had only good things to say about his manner, his friendly behavior towards staff, his amiability and the ease with which he accepts the few medications he gets. She credits some of that to my daily visits. I wonder if she knows how vital those visits are to me also.

It all sounds great and it is, but I cannot help feeling sad as I realize we are both living in reverse. My Bert is childlike but not a child. I am both mother and father to my husband when all I want to be is a wife.

Creeping unheralded in the back of my mind is: Will there be another Care Conference? Will I be writing about a great report, a bad report or no report at all? Will I be wishing I still had a grandchild or perhaps a great grandchild in the form of a husband as I miss his presence?

The Meander: We are lucky to have Care Partners who care. They are the hardworking PSW’s and dedicated front line workers for whom the work is more than just a job. Yet I wish we did not need them. What a terrible disease.

Good and Perhaps Last

We would celebrate come what may.

My Bert was celebrating a birthday. Born under the sign of the Lion the pussycat relationship was at the forefront most of the time. Despite living under the thrall of Alzheimer’s it was time to celebrate another year. My Bert’s inner child is most apparent on his birthday.

The restaurant was alerted.

The amazing staff at his home assured me he would be ‘spiffy’ for his outing. He was.

The mobility transportation was booked. The guests were all lined up. Covid-19 curtailed the numbers, only eight in total and even so, physical distancing was the order of the day.

Yet, I worried. What if the transportation was late or my Bert not in the mood or gets an anxiety attack. There were so many ifs to consider.

The worry was a wasted emotion as everything went exceedingly well. As per the norm, my Bert rose to the occasion. He chatted, ate, drank, and kept smiling at everyone. He knew Corbert and Amy and me. The others were ‘friends’ and that was all he needed to know.

He surprised one by exhibiting his usual alpha male tendency by squeezing the hand offered to him. It was so much the norm for both of them they had a good laugh.

Before leaving the home the young ones had decorated his room with a large peel and stick mural. Given the macular degeneration that has left him legally blind things have to be large and brightly coloured and well defined. The mural was aligned for maximum viewing space as depending on where things were placed there could be a best place for viewing for him. The wheelchair needed to be at an angle for him to see it. He touches the mural and says: “Pretty birds. Woo lots of butterflies too.”

He is happy. So am I. Here is some new scenery for him to look at. Each morning he sees the mural it is new and he is delighted.

I read the cards. He laughs at the funny ones and he wants to know who gave it to him. The only answer he needs is that it is from a friend. I name them and add: “If you saw them you would know them.” He laughs at one of the cards from the kids which is actually from their dog. They know he loves to get cards so that is an extra and he loves it.

Is this the last birthday celebration? That is my anxious nature asking. It could be. I do not know and I have no control over that. As I observe his pleasure, his delight at the funny cards and his slow but happy smile when he finally comprehends the sentiments expressed, the question becomes moot. Instead I begin to wonder what the next birthday celebration will be like. I have every intention to celebrate it, given the chance.

What is surprising and most welcome is that on returning to the home, my Bert looked around and said: “Home again, at last.”

What a difference. When we had entered into this home just over two years ago I never thought my Bert would ever utter these words. But I know he is sincere. This is his home and it is familiar territory. I am spending the rest of the day with him. That’s even more reinforcement that he really is at home. My relief at his acceptance is more than that. It also alleviates the discomfort I still feel when I see his shrunken world. Each day as I leave after visiting, he may ask me where I am going. I tell him the truth. It could be to an appointment, grocery shopping, or to get gas for the car but often it is “back to the apartment” which is my physical home. To my Bert it is the other place that I look after. It is not ‘home’ because he is not there.

He is correct. Home is where we are together. We went out and had a great time with family and friends. We celebrated his birthday, his day.

My Bert- Happy 89th Birthday August 17, 2021

The Meander: Sometimes home is not where you were born, or where you chose to live, or where circumstances dictate. Sometimes it is simply where the heart is.

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?”

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.

The Drop Sheet

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

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

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

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

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

…

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

“Where is the ticket?” Bert asks.

“Er…umm which ticket?”

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

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

“Why did another company do the delivery?”

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

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

“ Um, forty-five dollars.”

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

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

“Oh, Yes. That would be good.”

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

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

Bert sold his company in 1995.

….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For Caregivers: All Mothers!

Happy Mother’s Day to all mothers!

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

To those who are mothers on the second shift

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

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

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

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

Happy Mother’s Day!

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

Thank you John Wooden.