Author Archives: delores663

People ask.

So hard to tell. It seems names are no longer meaningful – which makes sense since names are basically conceptual (which is why keeping a culture’s language matters so much – the words/names express the way those people conceive reality, a priceless piece of human existence.)

Anyway,  if your grasp on words in general is pretty well non-existent, why would names mean anything? I think concepts are part of the frontal cortex job, and that is, in my love’s sad case, pretty  well… hooped.

Nonetheless there is a happy smile in his eyes as we meet and walk or dance. Sometimes it takes awhile. I walk up to him and he looks, asks “Who are you?” I tell my name but it sparks no recognition except perhaps a fleeting puzzlement.

But as i hold his hand and we walk and “talk,” slowly he relaxes and that happiness shows up. Touch tells him we belong together. That probing kiss follows, and reassures him. He nods and usually says how happy he is.

Today being a good day, we went to the weekly party up in the elevator to the second floor. “Whoa!” he said, “Where are we?”but relaxed when it seemed i knew and it was okay. (If you have lost almost all comprehension, everything, from a loud laugh to a strange colour, is potentially danger.)

He even kissed my hand as we danced, he was so happy, although he had no idea the singer was joking about it. Way too much to even bring into comprehension. The music, the beat, the dance, that’s more than enough to deal with, although he also clearly sang many words to those old pop songs.

Yes he usually knows me, not my name, and wrenchingly, he even usually stammers out eternal love to me. His proud male gift to his female. And he is proud.

He loves to feel my hand and arm, although always fairly concerned about what those things are below at – and being! – my feet. Their connection to me is another lost concept, i guess. Perhaps body and person are disconnected?

Then seated for awhile, he asks, clear as day, “Where’s mum?” and accepts my answer that she is in Denbigh, near where he grew up.

Does he know me?

Yes, as a ghost walker knows his people and binds them to his story, he knows me. Bound by the power of his being, I also know him. We are still together, and it is what it is.

Feeling happy, excited, and apprehensive tonight because tomorrow after 9 days of self-quarantine due to sickness, i’m going to see Don tomorrow. I am looking forward to it with anticipated joy, but a tad of concern.

I’ve been away twice before for as long – for my own holidays. This was unplanned, involuntary, and at a point where his memory of me is so faint one never knows… and almost every time we met he asks who i am.

Nonetheless. He may not know who i am and certainly doesn’t remember anything about our 35 years together, but i’m still hoping for that beautiful smile and his arms around my shoulders. Worst case, my arms around his, because he is too polite to caste off a huggy female! And if i’m lucky he will sniff me politely, and delicately bend down to touch my lips with his, and nod.

But most of all, i need to be near his smell. His scent, no fragrance, just him — smelling solid, safe, sexy, relaxing, fulfilling.

Such a strange intimate thing, primative i guess, but the smell of that man has always signalled home. And it still does.

I think one of the missing pieces in dementia care and love of our people with dementia is awareness of how much of the personality remains intact. I see it all the time in the care ward.

The man now confined to a wheelchair who sings rousingly and determinedly from time to time but greets us females with “darling.” And we all want to kiss him. Seems that’s a basic part of that sweet man.

My man, being felled by a cold and helped to bed by myself and the nurse, one on each arm, raises his head and chortles, “I’ve got all the women.”

His daily vocabulary is pretty much down to 10 or 20 words, and a bunch of catch phrases, but…. there he was, my guy, focussing on one of the main values in his life- the female.

But to tell the truth, focus is not just an alien word but an impossible action.

“I wish we could be together for a thousand years,” he says, a few days later, after he kind of remembers me but not my impossible name, stroking my face when i finally get him into a quiet space. The ward is extremely upset today because a frail lady is in a brody chair strapped in, and doesn’t like it one bit, hollaring Help louder than i would have expected she could. And for a long time.

This kind of thing upsets everyone, staff and patients. I cannot comment on why the restraints, although she did yell, i can’t see. I just don’t know.

I know the facility was cited a few years ago for lack of a fall prevention programme, but i am not easy in my mind about whether strapping people into chairs is the way to go. But my own mother had to be restrained because, totally paralysed on the left, she never could remember that she couldn’t walk. The horror of it all almost overcomes me.

And now again.

Ten minutes later as i think i am getting him settled to supper, which he is eagerly in favour of, he grabs my wrist and starts trying to talk authoritatively about me never leaving. He doesn’t really have enough words to say what he means, and soon shrinks down into muttering, “You are so stupid.” Even as i laugh defensively and bitterly to myself, “well that’s the bottom of the barrel,” the words sting, because this has always been his greatest insult.

And so it goes, day after day, week after week, month after month. And despite changing circumstances, it has been year after year, moving into the second decade.

And i am thinking, this is enormous trauma. It is not just daily confrontation with the hideous loss of mind and the gruelling grinding care, but the continual endless assault on sense, on values, on reason, trashed by those who have no idea how destructive they are….  this so-called life in a Wonderland world, but not so pretty.

We are the survivors – endurers of this endless assault and this, like so many dreadful human experiences, is trauma. Our trauma though, could be helped with massive humanitarian intervention to help us cope, with constant understanding, monitoring, social work or therapists.

Instead we the survivors, like so many in this bitterly inhumane society, are left by the roadside, crippled and grieving and fatally wounded. By a disease not even our own.

This afternoon I could not go visit my man, my cared-for-one. I knew that when he looked at me with that happiness in his eyes, I would just cry, which is upsetting for him and me.

To see how he struggles to understand simple words, and really doesn’t, to see how abilities are being stripped from his grasp, one by one, to realise that he now sees the ward as his safe place (which is a blessing), and that he operates almost entirely on intuition and body language. To know all that, I could not go in and cry. When I do, he touches me gently, wondering.

The other day he held my face in his hands and said with great conviction, “You are SO beautiful.”

I left shortly after and cried in the car. To have a lover, a life  partner,who is on your side forever, who sees you as a beautiful woman (no matter how delusional that is) and to lose that man, is a loss beyond description.

So today I hung around the house in tears, thinking about my loss and the horrific strength he still shows, the bravery in living through an experience he does not understand. I know him all the way to my soul and i know he is facing this unknown, un-understood, with great bravery using that core strength which few people may have seen but which i have come to respect over the decades.

So i hung around the house snivelling and weeping, and after a few hours the pain cleared like ugly clouds and I suddenly felt better, able to smile and laugh, able to write this blog. As if the storm had passed over, for now.

I post this as a memory from my dear who remembers none of it now. In his honour, in honour of his love for Susie, and for truth.

In Japan on a tour to Korea in 1952 or 1953, in the navy base at Sasibo, at 18 or 19, Don had his first deep sexual love. Susie, she said to call her, who worked in a house, but insisted the other girls leave him alone for her.

Susie fed him noodles and scolded him and made him take his shoes off on the paper floor, and enticed him take those deep Japanese baths, (scrubbed him clean she did!) and they giggled and loved all night. The image i get is of two kids in love in terrible circumstances. For him it was unimaginably wonderful.

I do not believe don at that time, or maybe ever, had the experience to imagine what this was like for Susie. She was sent to work in the house by her father, to save the rest of the family in the immediate economic aftermath of a disastrous war. I don’t know if she loved him as he did her, innocently, and deeply. I do imagine Susie thought Don-san would get her out of there , as she deserved and i expect he intended to, but he was really only a boy, and an unsophisticated boy – part Metis – from the backwoods of Ontario.

One night 3 or 4 young Japanese men showed up, and Susie told Don to get in the car with them. She waved goodbye.

They drove for a long while and went to Nagasaki. The young men had Don get out and just….look. No words, no anger, no emotion, nothing but the terrible devastation.

Then they drove him back to Susie. No words were ever spoken about this between them.

Weeks later, Don’s ship departed with no warning, no time to tell Susie what was happening. Go, or desert into a war-ravished foreign land. I don’t think disobedience crossed his mind, ever. But anguish was unmistakable. I expect that was why the orders came so quickly – no time to disobey.

Don never saw Susie again, had no way to communicate with her, no language, no name, no address. But in his old age he yearned for her, his lost love, that sweet first love of youth. I expect, I hope, we all have some secret sweet memories tucked away, that we visit in the private parts of our minds.

When the ship arrived at Hiroshima on their Japanese trip, Don refused to join the sight-seeing tour. He had had his eyes opened already, by those mysterious friends of his lost friend.

I am aware all the time that our trouble is as a mosquito bite, compared to the tragedies around the world. From the middle east wars to starvation of millions in Africa to the victimization of the unfortunate here at home, never mind the coming climate change miseries.

Small stuff indeed, my pain. And just one more drop in an ocean of grief. But multiplied by tens of millions all over the world, over decades and centuries, and it is not so small. This is an epidemic of a new kind.

Today was a day to look the nightmare in the eye.

When i got to the care home all was well. There was a full shift of experienced care staff and a good LPN and RN. The ward was humming with good energy.

Himself was marching off down the hall to somewhere – SO tempted to say Kansas!!!- and invited me to join him.

We walked up and down a while, each turn of the hall apparently new and potentially dangerous. Then I noticed his shoes were wonky,  and eventually the care aid and I figured out he had on two left shoes, one from an old set and one from a new pair.

Ok, no prob. The 3 of us set off to get the shoes fixed but then the scene devolved as the patient used the toilet (with coaching – no not on the floor, sit there) and subsequently got very very angry when the staff tried to remove a shoe.

I wondered later if he thought it was his foot she was trying to take off? Certainly his identification of my hands and feet is non-existent, including trying to eat my hand the other day.

The scene threatened to become a full 4 scale red alert melt down, but the staff skillfully diffused it all, let him go without a wash or clean pull ups, just making sure he had clean hands. They reassured  me that they would “catch him later” in a better space, and I know they will. (Note to govt bureaucrats: this is why staffing levels need to be higher for dementia patients, and this is why expecting a lone care giver to handle at home is… well …. insane.)

10 minutes later we were eating lunch happily, the entire episode forgotten. No lingering bad mood even, which is most unusual. Just the usual confusion about food and eating, and the usual offer to me to share his cookies: “what about you, babe?”

Me? Faced once more with the total horror of that destroyed mind, my beloved behaving in ways he would be completely appalled at, ways he would never mean to do, Me, I go home and weep the afternoon away.

Some days are nightmares.

People ask, Does he recognize you? Lately sometimes, as occasionally over the years, the answer has been, Not always.

He certainly doesn’t seem to know my name anymore but knows I am a friend.

Today my welcome was spectacular. When he saw me he broke into the most amazing delighted grin and pulled me into a hug. He leaned down and, as has become a ritual, delicately kissed my lips, giving a funny little nod of satisfaction and happiness.

All through lunch, he would reach out and give my arm a happy stroke.

His delight brought tears to my eyes.

More and more lately i have been feeling our time together is precious and have been making extra visits. After all, what woman wouldn’t be thrilled to have her love welcome her so extravagantly?

We were talking at work yesterday about lying, that being pretty topical in BC politics right now. I said glibly that I didn’t lie, but then admitted that i had gotten darn good at therapeutic fibbing while i looked after my anxious husband at home.

In fact after a few years of practice  i could spin a fib without batting an eye, anything to calm his lost and frightened nerves.

Now i have discovered another useful fib. Or maybe more a way of living alternative reality.

Instead of his old forceful and awful refrain of “Let’s go Babe,” he now says calmly, “Well I’m going to leave soon but I sure don’t want to leave without you.”

“I’ll go with you,” i say happily. His face clears and relaxes. “Well that will be wonderful.”

I elaborate and embroider: “I’ll always go with you….We will always be together.”

“Oh boy! Really?… I’d be surprised.” He searches my face and I cast my thoughts to how close we are, and how he is always in my heart, talking, warning me to look after myself, cracking jokes. I hope that reality shows in my face.

“Yes,” I take a chance and push it. “We will be together forever. You know it. You in my heart and me in yours.”

He relaxes even more and kisses my hand. He shows no anxiety as i walk away.

What were we really talking about? A trip to Ontario was part of the context, something we have done by plane, by train, and probably two dozen times by car.

But more than that, it was about passing. So many times he has said, “I’m not afraid to die but I don’t want to leave you.” I have always responded with unconvincing assurances that I would be ok. Sad,(devastated actually) but ok.

It is common – or was in the older generations – for widows to have their name engraved on the husband’s gravestone, with the date of death left to be filled in later. The practice gives me the creeps, but he has always considered the custom both beautiful and natural.

After his loved cousin Bert’s funeral, wife Frances came home, insisted on showing her girls the dress for her funeral, laid down on the bed for a rest before dinner, and died. This story always brought my love to tears at the beauty of their love. I was very impressed but not so enamoured.

But now I have ditched the bs, the personal insecurities, and gone straight to the heart, telling the truth by fibbing, and we are both better for it.

I am pretty sure many people – friends and family – have given up on my beautiful man, and some of them think i should just move on too. Get a life, hey.  (Some of the family are probably bloody glad i don’t because they don’t have to cope, but that will be a discussion on another day, sometime soon.)

He speaks almost no english although the meaning is sometimes clear from context and inflection. I don’t think he knows any longer how stricken he is… he is just trying to survive, and often with that joyous boyish spirit which he used to adventure through the rest of his life, and with which he revered The Female.

I didn’t really want to go visit today – thought it would be good for my mental health to stay away in my own space. But at the end of the day I went.

“I think he’s in the bath,” a staffer said.

“Oh. It’s Saturday.” (Don’s bath is scheduled for Tuesdays)

“I know but he resisted all week.”

So i hang around, chat with patients and hug a crying one, because I felt it was right and on the principle that love can’t do any harm at this stage, or any other.

Then i see him coming down the hall, semi-holding hands with the care aide, semi-leaning. Alarmingly frail, although one has to remember a bath is an enormous overwhelming experience, every time new.

“Hey!” He sees me and opens his arms joyeously. The aide says, “See i told you a pretty woman was here to see you.” Her words are lost in our loving reunion (he doesn’t know my name but he knows me still most of the time ) and she is able to move on, gliding smoothly away, to her next care.

We find two chairs and sit, holding hands.

“This is a wonderful place to live,” he burbles amid the word salad. “I am so happy,” he sighs. He nods at the aide who gave him the bath and says, “Haven’t we seen her before?”

Later she tells me she decided to try for a bath (must have been a ward priority because it was a new shift) and, after he had been given some extra calming drugs, he waved happily at her. She asked if he would come with her and he said, “oh yes, I’ll follow you!” The bath without incident, no fear and anger, an event ending happily all around. Need to know: staff are a bit cautious of my mostly gentle man, because his fear of the bath can lead to big-time unpleasant melt downs.

The point? Not only the extreme diligence the staff show in caring for their wards, but how skill- and labour-intensive it is to provide good care.

When it is well done, the patient and we the relatives, as well as the new temporary staff-family, all benefit. We have a guy who is lacking a lot of old skills but still exhibits his basic joy in living and his humanity.

As do we when we provide that care to these lost travellers. 

And I rest easier tonight.

So much to think about, to contemplate, as summer comes to its height.

The other day he began his usual “Let’s go Babe!” The phrase still sends shivers down my spine from all the times I endured these restless fits of discomfort, sometimes backed by anger, over the years. But now the sentiment gives me a sense of pity too, as I look at him and he explains (the words slowly assembled in between generous garbled helpings of word salad), “There’s nothing happening here, just the people dying. Let’s go.”

This shortly after my doctor haltingly suggested that perhaps i didn’t need to visit so often, or perhaps I should consider looking for new companionship. That was part of the response when I blurted out, “Don’s gone!” and was somewhat appalled at my words spoken aloud, although I know I must accept this bizarre fate and get my head around it.

A few days later it was a good day, and he was happy to see me, cupping my face in his hands, asking, “Who is this?” Not recognising, or being able to pronounce, my name anymore. I remember how a dear caregiver friend at Seniors Peer Counselling shocked us when she reported that it gets easier in some ways when the loved one doesn’t know you anymore. And  I accept the wisdom of her words. It does get easier, because you have truly done all you can, you have lost the battle against this disease stealing away your person, and there is nothing left to do but wait. And bear witness.

He did really seem to like the fidget toy I got him, asking for it at lunch — “where’s the thing with holes?” and making a circular motion. As for lunch, it was carefully mashed and mashed and mashed into one big mess, which, when finally tasted, didn’t please at all.