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The closest I’ve come to hysteria

24 June 2016

Margaret Duggan recounts the experience of caring for her husband as dementia took hold of him — and handing over to experts

John and Margaret at a family wedding

John and Margaret at a family wedding

“I AM glad you’ve come,” my hus­band, John, said as I went into his room. “I want to talk to you pri­vately.” The carer sitting with him smiled, and tactfully left.

“Would you like to go to South Africa?” John demanded.

“Not particularly,” I said, “Why?”

“J— G—”, he said, referring to his boss of 25 years ago, “wants me to go to South Africa with him to open up the electronics market there. I’m not sure about it. J— has these bright ideas that don’t always work. I’m not sure that South Africa is ready for semi-conductors; and, anyway, I would be leaving you.”

For the next two hours of my weekly visit, among all the talk about the education of our grand­children and the welfare of our extended family, he kept returning to his worry about going to South Africa, and the state of the electron­ics industry in Africa, generally. When I eventually left, I encouraged him to go on thinking about it, and to let me know his decision next time.

It was unusual for him to have returned to the part of his life when he was an electronics engineer. More often, he thinks he is back in the Royal Navy, planning a cruise in the Mediterranean. Just occasion­ally, he remembers being at uni­versity, doing the degree in philo­sophy, politics, and history which he took when he retired.

JOHN has been in a nursing home for the past six months. It had taken more than two years of scans, tests, and consultations to diagnose his particular form of dementia. In the early stages, it was thought to be Alzheimer’s, then Lewy bodies (DLB), and, finally, corticobasal degeneration (CBD).

It is hard to remember when the symptoms started. After his retire­ment in 1991, he not only took a degree, but was also chairman of the management committee that was refurbishing our large block of mansion flats. For a while, he was a churchwarden; he played golf twice a week; and was a doting grand­father.

But, after a few years, some of these activities died away, and he would spend more and more time dozing in front of the television. It also mildly irritated me that he would do silly things such as putting wine glasses in the dishwasher the wrong way up, or not noticing that he was wearing a V-necked jersey back to front. He also, after a lifetime in electronics, became a techno­phobe, getting more exasperated with his computer, and going to his bank almost weekly to complain that they were making his online banking increasingly complicated.

His driving became aggressive and erratic, with a number of near-misses that had me clutching the edge of my seat. He would not let me drive, getting silently furious when I tried to persuade him. In fact, his bad temper with me grew, generally. He regularly visited his GP about his blood pressure and arthritic prob­lems, but the doctor did not see any of his changed behaviour. After I had privately told the doctor of my concern, John was called back under the pretext of checking his medica­tion, and given a “routine” dementia test. The questions included naming the Prime Minister, and some very basic arithmetic, with which he had no problem. Further tests proved inconclusive.

I knew that something was seri­ous­ly wrong, though, when we went on our last holiday, four years ago. As usual, he had enjoyed making all the arrangements. But at Heathrow, instead of confidently leading the way, he was suddenly bewildered, frightened, and very dependent on me. During our holiday in Italy, he frequently lost himself in the hotel.

Then the falls started. Waiting for a bus, at a shop counter, or during a walk in the park, his knees would suddenly buckle, and he would be on the ground. And the act of getting dressed became more fraught. It was quite a shock the first time I saw him with his trousers inside out, pocket linings flapping at the sides while he complained that he could not fasten the waistband. It was certainly around that time that, after a par­ticu­larly frightening near-miss, I stopped him driving.

IT IS hard, now, to remember in what order the stages occurred. We had three months of dreadful rows, as all his anger surfaced. I endured an array of resentments and accusa­tions, and was unable to keep my own temper at the injustice of it. His GP comforted me by saying that it was a recognised period of grief and frustration, as John began to realise how he was losing his competence.

The anger gradually faded, and John agreed to be part of an Alz­heimer’s research project. For three months, we did tests in eight differ­ent hospitals, until I felt qualified to write a “Good Hospital Guide to London”.

The tests established that his spatial sense had gone: he was trying to put shirts on upside down because he could not recognise the right way. His sense of time and place had also gone, and he had become so un­­steady on his feet that he was in a wheelchair. I was becoming increas­ingly tired.

At this point, our daughter in the United States flew over for five weeks, to take charge. It was clear that we needed to involve the health authorities, which entailed many visits and much form-filling. For four weeks, a carer from our local authority came in each morning — something we were entitled to. This gave us a chance to find a private care agency to take over.

IN THE next phase, the agency carers would arrive each morning at 9.30, after I had prepared everything for them. They would give John his simple breakfast in bed (the promise of grapefruit always roused him), and embark on the long process of getting him to take his medications: 13 pills and capsules in all. In the beginning, he was always glad to see “their cheerful faces”, and they enjoyed his stories, the history he taught them, and the games he would play with them to delay his pills and his shower. It was a brief time in the day when I could do my own thing.

When John woke in the after­noon, I would get him to an arm­chair in the sitting-room, and he would be at his best for the evening, watching well-worn sitcoms, for he could no longer follow a serious plot. Meals were anything he fancied, but very little, and he (and I) steadily lost weight.

He would usually let me get him to bed after the ten-o’clock news, but often — especially if I was unwise enough to mention my own tiredness — he would insist that he could put himself to bed.

He couldn’t, of course. His resist­ance to help sometimes drove me so close to losing my own temper that I would have to leave the room with clenched fists and swear at the furnit­ure, until I could calm down and recover my patience. By which time he had given up, and would grudgingly accept my help.

In his good times, he had become very loving, and I could feel my heart breaking at the sadness of an intelli­gent and proud man still desperately trying to hold on to the shreds of his independence and understanding. But his aggression grew. I found it really hard when he was rude to the kindly carers — still worse, when he threatened violence.

The nights got worse, too. For a long time, I had been getting not much more than four hours’ sleep a night; I was always on the alert, with a baby alarm, in case he fell. As much as possible, family members came to stay and lend support. It was remark­able how readily our 17-year-old grandson could cope with a half-undressed but much loved grand­father, lying on the floor. But I still had occasionally to call an ambu­lance crew, who were always kind and understanding.

THE crisis came last summer, when our son and his family went on holiday to Finland. John became convinced that someone had made off with the grandchildren. Waking me up at 1 a.m. several nights in a row, he demanded to know that they were safe. “Prove it,” he kept saying, on and on, never stopping, through­out the night, and for half the next day as well.

By God’s good grace, I had arranged for a resident carer to come for that week. If ever I was rewarded by all those friends that I knew were praying for us, Julie was that reward. She took over the baby alarm, but even she was defeated by his demands on the first night, and had to wake me. At that point I lost it, and became as near hysterical as I have ever been in my life.

I called an ambulance to take John into hospital, but this time the paramedic was inexperienced, and had never dealt with dementia. He finally offered to take me to hospital instead, leaving John at home. In desperation, I rang my son-in-law in the US. A consultant neuro­psychologist, he explained the facts to the paramedic. Julie went to the hospital with John, and stayed with him until breakfast time. She told me that he never once stopped talking, and was still at it when she left.

John was in hospital for the next ten weeks. For a while, I could not bring myself to go to see him, but gradually I was able to, and man­aged to cope with his pleas to be brought home. After a while, he started escaping into a fantasy world: he was often back in the Navy, complaining about conditions on board ship. I once found him hammering on the desk at the nurses’ station, demanding that all the crew should be sacked. Violence could be real. It was impossible for me to cope with him at home again.

The family and I had been worried that, if and when he was transferred to a care home, the fees of all such places in the London area started at £1000 a week; so we were relieved to learn that the lengthy assessment by many consultants had concluded that his nursing requirements were so complicated that his care would be covered by the NHS.

John has now been in the care home for six months, and I cannot speak highly enough of the care that he receives. He eats very little, and is now almost a skeleton, but he still knows everyone who visits him, and asks about the family — although not necessarily remembering that our own children have long left school, and one is retired.

I am glad when I find him living in a positive fantasy: at least he is relatively happy, then, although it can be exhausting keeping up a conversation about an imaginary crew, or docking difficulties.

Recently, he has returned closer to reality, saying that he is bored, and wishes he had a job to earn money for his family. “I know I’m being silly,” he says in a moment of self-awareness. “But I still feel responsible for you all.” The man that he was is still there.

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