November, 2018 - Meanderings

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.