Archive for August, 2011

The Destructive Force of Dementia… continued

August 23, 2011

The Destructive Force of Dementia…

The lovely nursing home by the shore at Aldingham.

I visited Geoffrey again last week. The assistant told me that he was not well. Certainly he looked quite poorly and spent my time with him sleeping. At one point, he became acutely restless, balling his hands and moving them towards his mouth in jerky movements. “I can’t eat it, I can’t eat it,” he kept muttering. I put my hand on his arm and told him not to worry, there was nothing there for him to eat. He relaxed and continued sleeping.
I was told that he had been sent cards, flowers and chocolates. I wondered it is was his birthday and thought how sad that it all meant nothing to him. How could it, when he was spending the day in some kind of dreamland? He was not looking his best: his shirt had twisted and his belly showed, he’d been using his cardigan sleeves to wipe his nose and a fly constantly hovered over him, settling on parts of his body. My efforts to flick the fly away were fruitless. Had I the means I would have sent that fly to heaven. I hated it. It somehow completed a picture of decay.
Elsewhere in the large room, someone had arrived to get the residents involved in some kind of action therapy. Her cheery smile and actions brightened the place up a bit. The chairs of those willing to participate were wheeled into a circle (all the armchairs are on wheels). A few relatives there were sharing in, I thought it would have been hard work without them. Gradually some of the residents got the hang of stamping and arm waving as a tape played music, and the girl told the story while showing the residents the actions.
A kindly lady asked me if I would like to join in. I thanked her and said I preferred to sit with Geoffrey even if he was not aware of my presence. She spoke of what she knew about him according to what he had told her, but much of it was wrong, at least in the context of the present. For some odd reason, as I spoke of what I knew about Geoffrey and my past association with him, tears rose to my eyes and there was no way I could control my emotions. It was all so sad, so very sad. This man of letters who once was in Wartime Intelligence, head of a department within prestigious national institution, theologian, tutor, missionary, priest and family man, crumpled in a chair like a bag of old bones complete with a fly for company — “Where now your God?” might well have been asked by scoffers.
But why was I sitting there with tears running down my cheeks? I guess it was simply the pathos. I have clear memories of him sitting on a small sofa, holding hands with his wife (she died last year); preaching and administering Communion; working with me as my tutor. Or is it more than that? Am I still locked into the dementia my mother suffered before her release through death? There is a melancholy of viewing a world full of suffering. At that time, Geoffrey in his state of utter confusion and sickness symbolised my inability to come to terms with my own helplessness. I have no answers, I have no solutions.

Aldingham beach, just yards from the nursing home. As featureless as my friend's mind has become, and yet full of buried events with a glorious panorama.

Some years ago I visited a couple as part of my pastoral care duties: Betty, an appreciative dear old lady and Jack, her somewhat strident hubby. Betty was always delighted to receive visitors while her hubby appeared less so, though I strongly suspect he enjoyed any opportunity to have a good grouse.
As time went by it became clear that Betty had memory problems. Her grumpy spouse never allowed for her growing problem and tended to use unflattering language when reminding her of what she was supposed to be doing. The poor woman looked tearful and cowered under the lash of his tongue. Wherever I visited, tea-drinking was an accepted ritual. The last time I visited their house, I offered to get the tea for her. The kitchen was a mess and the fridge was so full of ice that it was impossible to close the door. Clearly, the situation was getting dire. Jack was no support to his wife, and she had problems helping him with his age-related physical problems. No doubt they would be receiving Social Service support but clearly they needed more than that.
Jack had a spell in the local hospital and I visited him there. He was his usual aggressive self. Trying to lighten his mood, I jokingly greeted him with, “Hello, Jack, your young, good-looking visitor has come to see you!”
“Huh!” he exclaimed, a lady waits to be given compliments.”
“Just joking” I said and asked him how he was getting on.
He said he was being kept awake at night by the old b—–r in the opposite bed. Evidently he tended to shout and swear, keeping them all awake. I looked across and saw the poor old guy was no other than an elderly gentleman I knew quite well. I could have wept, this man had once run a successful non-conformist chapel. I had known him as a scholar and a man of faith and prayer. I began wondering about the soul of man — deep theological thoughts — when I turned back to look at the man I had come to visit. Uncaring about my presence, without ceremony he reached for his urine bottle, pulled out his willy and began urinating.
Not long afterwards I left the church as I had been licensed to work elsewhere. But I heard that the elderly couple were both living in a nursing home. He died and she spent her time wandering around looking for him.
I have found that it is often men who find dementia in their spouse harder to cope with. Perhaps a generation thing, my generation that is — wives having been the main carers and home-builders. Of course, both suffer badly when a spouse becomes a victim of dementia. The dementia sufferer dreadfully confused and frustrated as chunks of memory fade away, the carer experiencing the dying of a close relationship, the person they have known and loved for many years unable to meaningfully respond to the love they have for them.
Years ago I visited a couple I had known for years. The man had been a well-known local personality, who had spent years documenting local history and caring for his local chapel. Unfortunately, he had become quite deaf and his hearing aid made a noise that drove his visitors barmy! He also liked a huge fire to keep the home warm, too hot for me to cope with for long. I must admit my visits were in danger of becoming further apart. But I liked to meet his wife too. We had things in common as she loved sewing and embroidery. She would greet me with a smile and say, “Oh, I am pleased you’ve come, you make my day. I’ll put the kettle on.”
But I heard from her husband that she was getting very forgetful. Food would be left under the grill until smoke filled the house. Pans boiled dry. Her forgetfulness was getting highly dangerous and exhausting for all concerned. So easy to get impatient and shout. Hardly surprising she was getting more tearful. Eventually, she went into respite care. Even so, when I visited her at the local hospital, she would always say the same thing, “Oh, I am glad you’ve come,” and tears would fill her eyes. I had to fight back my own tears for I knew she would never get better. Did she really know me? Certainly not my name and possibly she said the same thing to everyone. But holding her hand meant something to her.
I saw lovely devoted spouses visiting the local hospital’s dementia ward. They would sit with unresponsive spouses for hours. Friendships developed, which helped to ease their burdens. The ward, which was also a day ward offering respite care a few days a week, was staffed by caring nurses and assistants. Until my mother had her accident, she was able to go there a few days a week, so I got to know the other carers and they formed the nucleus of the group I formed. One of the resident patients was a tall good-looking man, possibly in his sixties. His wife visited him every day. He wandered around most of the time, occasionally getting into bed, sometimes not his own. Once, as I was leaving, he stopped in front of me, I gave him my usual cheery smile. He bent his head and kissed me. Did he have a vague notion that I was his wife? I gave him a smile and said goodbye.
I heard tales such as shoes being put in the oven, and my own mother did daft things too. If we did not laugh about these things, the sorrow would be too much to bear.

Dementia… Visiting Geoffrey.

August 11, 2011

Geoffrey, sound of mind, caring and capable.

I am not new to Dementia. The first occasion of becoming involved was some years ago now. A Reader I often ministered with, someone I admired, a retired seaman and a man to be trusted, started acting a little odd. He also became aggressive with friends, although he was always all right with me. Then the word Alzheimers was mentioned. I had little idea then what the disease was all about, but I soon found out when I visited him and his wife in their home. It did not take long to realize the stress his wife was under. I found out about others suffering the same fate. It was then I set up a carers’ group. At one of our earlier meetings two doctors came to answer our questions. Later, the local Dementia consultant gave us a talk with a questions session. Sometimes the group just chatted over a cuppa, and sometimes one of our number would give an interesting illustrated talk.
As part of my pastoral duties I would also visit care homes for dementia sufferers. Then my mother became ill with a form of dementia with paranoia. The illness has nothing to do with keeping one’s mind active. Present day research gives hope for an eventual cure.

Last week I visited my old one-time friend and theology tutor. He has dementia and lives in a nursing home. So very sad to see a priest and man of letters reduced to what he has become: terribly anxious, afraid of doing the wrong thing. In his mind he was expecting to be part of a service. Not knowing where he actually was, he kept asking questions about the people around him and if he would be getting a co-worker. He didn’t want to be late or found wanting. “Well,” he said, “when I’m asked, I’ll be ready.” My words meant nothing to him, that which he had fixed in his mind refused to budge.
His meal arrived; a dried-out fried egg and chunky chips. I had to reassure him that it was his meal. He looked at it, unsure how to eat what was in front of him and whether he should be eating it anyway. He asked my permission to eat each mouthful, —stuffing the chips and the egg into his mouth mostly with his fingers. “Hell” he said at one point when a piece of chip got away.
He continually asked about his wife, each time experiencing the grief of loss when told that she died last year.
Once he said, “No, you are not being honest with me are you?” The pain written on his face, before moving on to other matters. “I’m ready to do my part when asked. Are my co-workers here?”
I told him the day was Tuesday, not Sunday, hoping that might make a difference to his thinking. All I got was a look of bewilderment. “Not Sunday?” I rather think a resident playing the piano had sparked something off in his brain. He was not able to grasp where he actually was. I thought the workers there to be angels even if the place appeared to be far removed from heaven.
Hoping to prompt a tiny spark of memory as to who I am, I showed him a photograph of us robed for a Christmas service at a local church.
He looked at it as I talked. It was taken over ten years ago. He didn’t catch the name of the church and kept guessing at what I said, louder and louder until we were both shouting. I had forgotten he was a bit deaf but at least he was interested enough to want to know what I had told him. The name of the church meant nothing to him.
He still kept asking about his wife. He wanted her there beside him. Would he recognise her even if she miraculously entered the room? I doubt it. Before she died, my mother frequently mentioned my adored brother, but when he flew over from California especially to see her, she completely rejected him. In her mind she could see him on the television being arrested by police.
The loveliest thing about visiting my friend Geoffrey happened when I was about to leave.
“Thank you for coming to seem me,” he said with a little smile. This indeed was the Geoffrey I knew and loved. I usually manage to get a little laugh or smile out of him sometime during one my visits, this time he had saved that pleasure until the last moment.
Of course my own mother always comes to mind when visiting anyone with dementia, and the terrible suffering she went through is never far away.
(See last post)

The Way Out … A study of dementia

August 4, 2011

The Way Out

The stormy beach which is her fuddled brain locked within a crumbling shell, whips up fragments of memory tossed and scattered by crested waves of nostalgia, pain, sorrow, tangled with glimpses of delight — fragments lit by sudden rays of sunnier days. Salty tang with rotting debris, musty fungi, colliding with sweet rose petals, the joy of love, lavender, baby talc. Sounds rush and collide: screaming winds battle against joyful laughter and peaceful sighs.

She sees, smells , hears and touches these things. Or, rather they grip her. There is no escape, there is no way out.

I curl my arm around her shoulders.

She looks at me, her brow wrinkling.

“I’m Jenny,” I say, smiling reassurance.

“No you’re not, I want Jenny. She never comes to see me.”

I force back my tears. “I’m here, Mum. I’m your Jenny.”

“No you’re not.” She points to the television — a mere background noise and moving parts within the dementia ward. “That’s Jenny, getting on that plane. She won’t get far. She stole the Crown Jewels.”

I kiss her cheek and rise from my chair. “Goodbye, Mum. I’ll come again tomorrow.”

She clutches at my arm. “They’re coming for me tonight,” she mumbles, terror burning from unblinking eyes.
I sit down again. “Who are coming for you?”
“They are. They’re going to hold me ransom.”
“Don’t worry, we’ll pay it.”
“You won’t have enough money.”
“Then we’ll sell the house.”
“No good, they want my leg.”
Part of me wants to laugh but most of me demands to weep. It is always the same, my mother ‘s brain traps her in impossible situations from which there is no exit. Her money is counterfeit, she has stolen things and the police are after her. The police are coming to take her away. They are coming in the night to torture her and no one will be able to stop them. She never complains of physical pain. Not even a fractured leg, nor her weeping feet and ankles can break into her true consciousness,

She trembles with dread as she tells me that she is going to burn in hell. But my poor mother IS in hell and there is no way out…

Each visit is the same, until…

She lies wearily in her bed, a virus having weakened her body. Amazingly the storm has abated. After some time I kiss her cheek. “Goodnight, Mother, I’ll see you in the morning.”
.She whispers, “Goodnight, Luvvy.” Her wonderful last words full of recognition — I am again her Luvvy!
Death is a kind of healing.