Married to Alzheimer’s: the first three years

In 2013 Steph Booth and her husband agreed she would write about his dementia. This selection from her writings charts the impact of the disease on their lives

 

November 23, 2013: ‘I was concerned enough to want to get him checked’ 

I asked Tony to give up smoking marijuana before we moved to Cavan. It was 2003, and he had indulged in the habit for decades. We were moving to quite an isolated area, and my nagging campaign included the wish that we not give questionable individuals an excuse to turn up on our doorstep.

But when crisis came calling it came not from outside the family but from within. Tony’s years of smoking dope were to have a far more worrying impact on our lives. Unfortunately, they helped to mask the early symptoms of his Alzheimer’s disease.

We had moved from England, where Tony was a well-known actor. Actors can be odd, egotistical creatures. I can say with some authority that they would appear, for a good deal of time, to inhabit a parallel universe. This behaviour can spill into their private lives, making it harder to understand what is mere eccentricity and what are the warning signals of something potentially more serious.

For quite a time I assumed that some of the increasing strangeness of Tony’s behaviour, such as leaving things in peculiar places or forgetting what I had just told him, was simply normal, if exaggerated, male behaviour. I researched the subject and learned that his dope habit would not have helped his memory.

Tony has always been, and continues to be, a voracious reader. When I realised he was sometimes having difficulty differentiating between fact and fiction I understood that things were more problematic than I first realised.

By the middle of 2004 I was concerned enough to want to get him checked out. The crucial problem was how I was going to get him to visit the doctor. I knew he would be offended and angry if I even mentioned it.

I opted for subterfuge. I had a chat with our GP, explaining my concerns, and asked if he would call Tony in for a routine health check. I requested that part of the health check should be a referral for memory testing. I persuaded Tony that the referral was part of a marvellous care package that the Irish health system offered to the over-70s. He was deeply impressed by this forward-thinking strategy and, believing the test was offered to everyone, agreed to go.

After several trips to the psychologist in Sligo we were told that Tony was displaying clear indications of the onset of Alzheimer’s. As I anticipated, Tony was angry and rejected the diagnosis – an entirely reasonable response. No one wants to hear that they have a life-changing illness.

Alzheimer’s is a cruel disease. As an actor he found the thought of losing his short-term memory unbearable. How would he be able to work?

While we were living in Ireland, and for some time after our return to England, in late 2005, Tony’s symptoms did not seem to get much worse. He was able to work. Although he found it harder to remember his lines he was getting through.

Then, unexpectedly, he told me that he could not do it any more. He was finding the physical and mental strain too much.

I know this admission came at a huge personal cost: his sense of himself is so bound up in his work as an actor. The Alzheimer’s was beginning to take this away from him.

I persuaded him once again to visit the doctor, this time on the basis that there might be a drug that would help his memory. He was told he would need a brain scan, and an appointment was made. On the day he refused to go, angry at the idea of there being something wrong with his brain.

Another appointment was made. This time both his daughter Cherie and I worked on him to attend. The scan revealed that the Alzheimer’s was progressing. He was prescribed Aricept, or donepezil hydrochloride, which helps treat the symptoms of the disease but cannot stop it.

Alzheimer’s does not follow a path of gradual decline. There are sudden steep drops, with partial loss of everyday skills.

Now, though, we are at the stage where he cannot look after himself. Tony’s forgetfulness is now the greatest threat to his safety. He has lost much of his appetite for food. His preference would be to eat biscuits or chocolate if he were hungry, and to smoke lots of cigarettes. Without me to prepare a meal there would be no balanced diet or regularity. Tony has lost weight. Some of it is possibly down to the diminished appetite of ageing – he is 82 now – but feeding him is a challenge.

There are dark times when I feel I can no longer cope. It is hard to repeat the same answer again and again, as if each time were the first response to the question.

Simple, almost nonsensical issues, but like the drip, drip of water on stone the constant repetition and tongue-biting become wearing. Explosions do occur.

Like so many people in our situation we rely on family and close friends for help. Cherie is a constant source of support. She looks after her dad regularly so I can have a break.

After becoming a pensioner himself Tony began to channel some of his political energy into the pensioners’ movement in the UK, speaking at rallies and conferences. His activities were sometimes an intense irritation to his son-in-law Tony Blair, who was then the prime minister. My Tony wasted no opportunity to tell the other Tony just how poor the provision for pensioners was in the UK and how much better it was in Ireland, urging the prime minister to do better.

When my Tony and I discussed if I should write this piece he was initially uncertain. “It would leave me standing naked,” he said. Then, after some reflection, he told me I should do it. This article is the first time Tony has articulated his acceptance of his illness.

December 16, 2013: ‘How much would I give to still be a wife and not a carer?’

Tony and I have always had a pretty tempestuous relationship. We are both strong characters, and perhaps it is a peril of being married to an actor. If I had a pound for every time he announced – always in a grand, theatrical manner – that he was going to leave me

I would be a wealthy woman.

He never has, though. The drama of the moment is the thing he relishes, and I point out he would be mad to leave me. But now, with the Alzheimer’s, Tony really is leaving me, and I will not get him back.

We share a home but, increasingly, not a life. Everyday companionship, like routines last thing at night: cleaning teeth, finding pyjamas kind of conversation. “Where’s the cat?” “Have the dogs had a wee?” “You did lock the back door, didn’t you?” The usual humdrum stuff of all marriages. Followed by the more intimate, personal exchanges of togetherness, snuggled up in bed and sharing pillow talk.

How we take these moments for granted. Tired, we just want to turn over and go to sleep; we can always talk tomorrow.

It is only when those moments are slipping away that we realise how precious they are. How much they are the glue that binds any partnership together. How much would I give to keep them and still be a wife and not, increasingly, a carer?

The shared laughter, interests, gossip, bitching, planning, hopes and dreams – all disappearing. So much depends on our being able to remember things that happen during the day. Events, chance encounters we would once have shared.

With luck we are still some way off Tony completely retreating into the hinterland of his mind. Sometimes I wonder if reaching that final stage might not be a blessing for him. He is aware of what is happening and can become very frustrated. These are the hardest times for me. Trying though it can be to answer the same question repeatedly, it is nothing compared with the fury and misery that swamp him as he vents his frustration. I cannot do right for doing wrong.

I feel hemmed in by Tony’s increasingly skewed vision of the world, as his ability to make sense of everything gradually erodes. During these periods it is hard not to feel that he hates me. I hang on to the knowledge that this is the disease and not my husband speaking, but it can be almost too tough.

My lack of sleep during these episodes is the real killer. His unhappiness makes him tired, so he spends a lot of time asleep in the armchair in front of the fire. This means he does not sleep well at night and wakes me in the early hours to talk or, worse, rage.

A few months ago I went to see my GP. I wanted him to give me sleeping tablets, not because I was having difficulty sleeping but because I thought they might help me sleep through Tony’s attempts to wake me.

That was a complete nonstarter. Instead I was offered antidepressants to help me cope. I failed completely to get across that I was not depressed but exhausted.

I feel I am gradually becoming invisible, another symptom of a disintegrating marital role. Where once we were seen as a couple the focus now, inevitably, is on Tony and the progress of the Alzheimer’s.

Family, friends and acquaintances ask after him. As the one in the caring role I am assumed to be all right. I must be if I am coping. It seems that only those who have gone through a similar experience, or know my situation well, will ask how I am.

I know that this is a common problem and that there are carer support groups. I have been strongly encouraged to get involved with them. I don’t know if I’m being contrary when I do not want to join. I do not want to be defined simply as a carer.

For me living with Alzheimer’s is enough of a challenge. I really do not want to spend precious respite time talking about it. I am still me.

I am increasingly anxious that I am losing a sense of who I am. I need my friends and my own life beyond Alzheimer’s.

But then there are still occasionally the wonderful highs Tony has always brought to our relationship. Hard though life can be I still want him here with me. I always said he would be a fool without me and I without him.

May 20, 2014: ‘The drug that once helped no longer works’

I was recently asked to speak to a large group of second-year nursing undergraduates. They were from diverse areas of nursing, including mental health, paediatrics and general medical. They had gathered for events to raise awareness of dementia. I had been asked to speak to them in my role as a full-time carer.

I looked around the lecture theatre at my audience, who comprised mostly young people. After a brief moment wondering whether I would be able to hold their attention I started talking.

After I had finished I could see that some of the students were in tears. Many people have a dementia story. The disease touches so many lives. With luck my presentation helped the students understand how their own experiences can positively inform their behaviour towards, and treatment of, people with dementia.

Among the questions I was asked was, “How do you cope with the constant pressure of being a carer?” I told the students that one of my strategies is to take antidepressants. I could see some shocked faces.

I can understand that people may be shocked by my decision to take the drugs. Like dementia, admitting a need for antidepressants is shrouded in shame and embarrassment. I explained that it was a rational response to an irrational and sometimes stressful situation. I have spent some time discussing my situation with my GP, in whom I have confidence and with whom I can talk freely and honestly.

I find coping with the demands of Tony’s downward spiral more and more difficult. In the past month or so the dementia has really taken a grip, and he is clearly deteriorating. Aricept, the drug that helped in the early stages, is no longer having an effect.

He now takes Memantine. When it was prescribed the consultant psychiatrist told me that there was no guarantee it would be helpful, as it does not work for all dementia sufferers.

Fortunately – and I touch wood as I write this – it appears to be having a positive effect. At the moment Tony is much less verbally aggressive and agitated.

But the reality of living with someone with dementia has a wearying impact on a sole, full-time carer.

So the antidepressants also help me cope with the panic that sometimes sets in if I think too much about all of that. They help me retain a level of personal equilibrium in the face of a life and a marriage increasingly bounded by the needs and demands of dementia.

From as far back as I can remember I have occasionally suffered from a dose of the miseries. They last about three days, during which the best thing I can do is to keep my head down, not make any important decisions, and try not to be the world’s most irritable person. The miseries go as suddenly as they descend.

Tony is no longer capable of understanding or supporting me, so the low days are that much harder to get through. That’s another reason why the chemical crutch of antidepressants is useful.

Tony and I are now in a much better place than we have been for some time. Tony is more able to enjoy company and cope with social expectations.

No 2 son and his partner, who live in Paris and are getting married in August, came to visit us recently. They wanted to discuss wedding plans. I am charged with organising and arranging the wedding flowers. Tony’s contribution is that he will wear a suit and not make too much fuss.

Of course he will forget all about the promise, but at least he was willing when asked.

June 17, 2014: ‘You do not acquire sainthood when you become a carer’

For me my garden is a calm, reflective place. Digging, planting, weeding, I find it easier to think things through. I have recently been pondering what I would say to people who find themselves caring for someone with dementia. Things I wish I had known or had been told at the beginning. Of course it’s a personal list, but I hope it will help at least some people going through the same experience.

Dementia is a difficult disease to diagnose. We can all be a bit dopey and forgetful. How many times have you got to the top of the stairs and forgotten why you are there? This is not dementia.

Signs of confusion are the clearest indicators that perhaps something more serious is going on. Tony began to mix up fictional characters in the book he was reading with reality. That’s when I decided that his symptoms needed to be checked.

Do not allow yourself to be shunted out of the doctor’s office with their blithe assumption that you will be able to cope. That would not be the case with any other long-term disease. It should not happen with dementia. It does, though, for too many of us.

Along with the emotional impact of Tony’s diagnosis, trying to find out where to go, who to ask and what information and support were available was unbelievably wearing. Make sure you at least get a starting point before you leave the doctor’s surgery. The Alzheimer’s’s Society is an invaluable and ongoing source of help.

The person with dementia can find it difficult to accept their illness, but the reactions of other people, particularly family members, might be surprising and unhelpful. Even when the evidence is clear some refuse to accept it.

I have certainly found this to be true.

At first I tried to explain to them why their acceptance was important, in being able to respond appropriately. Now, though, I realise that it would have been better for everyone if I had not allowed myself to become distressed by their lack of understanding and support. Not everyone reacts well in a crisis.

A critical lesson to learn as a carer is to focus on the positive, prioritise what is helpful and move on from what is not.

Don’t panic. Don’t assume it’s all immediately downhill from the diagnosis. There may well be a good few years before things begin to get really difficult. Tony was diagnosed about eight years ago, but it is only in the past nine months or so that I am having to deal with the full-time, serious impact of his having a degenerative disease.

Face up to the fact that palliative, or end-of-life, care has to be discussed sooner rather than later. With everything else going on this can be a really tough one. Finding the right moment is the first hurdle.

We had friends over for supper some time ago, and the subject of hymns as a source of social history came up. An opportune moment to talk about favourite hymns. It was easy enough then to move on to discuss how we would like to die, given that we had probably left it too late for a rock-star ending. I am now pretty clear about Tony’s preferences. If you want to talk to someone the Irish Hospice Foundation has a lot of experience in this area.

There will be good days and not-so-good days. And then there will be awful days. On the bad days, when you feel your head may just explode, you are allowed to shout or grumble at your partner, just as you would in any marriage. I do.

You are human. You do not acquire instant sainthood when you become a full-time carer for someone with dementia. With the best will in the world it’s hard to answer a repeated question as if for the first time or listen with rapt attention when you have been told the same story again and again.

Have fun. Make a joint bucket list and then do as much as you can. You will need these memories to hold on to when the person you love starts to retreat from life and from you.

July 29, 2014: ‘Dementia scares people. They worry about saying the wrong thing’

A friend whose husband died recently in a car crash told me that people she had known for a long time would cross the road, pretending they had not seen her, to avoid conversation. Her grief made her different. My experience, caring for my husband, has been similar.

Not only is Tony losing his sense of self as his dementia progresses, but there are people who are afraid of his illness or worried that they no longer know how to approach him. They have drifted out of our lives. As a consequence, Tony, a very sociable being, is also being lost.

Dementia frightens people. Too often they do not understand that it is a disease and not a mental-health issue. They worry about saying or doing the wrong thing.

What will they do if he does not recognise them – and, if they get through that, what about dealing with any odd or unexpected behaviour?

These are the people who, if they bump into me around town, will ask brightly how he is but are careful to go no farther than polite concern. Then there are people whose unfortunate response is to patronise, speaking to me rather than to Tony.

Removing the fear factor about how to respond to sufferers is crucial, both for sufferers and for their carers. We must normalise this disease, just as cancer and other degenerative diseases have been normalised through an increased public understanding, and the subsequent willingness to talk openly and behave with kindness.

So please don’t cross the road or pretend you have not seen us. Do treat us as the people you have always known.

February 17, 2015: ‘Part of me misses Tony’s gloriously theatrical temper’

The garden in winter can be a sorry place of desolation and death. At this time of year it’s hard to believe that just under the frost-covered soil, waiting patiently for their moment in the sun, the plants are preparing to push to the surface in a burst of spring glory.

It is the season of waiting, of hibernating. Tony and the dogs snooze in front of the fire; the dogs occasionally twitch in their dreams while Tony snores and coughs, as his lungs and heart gradually wind down. He has reached a point of peace, a space previously known to him only as a theoretical concept. This makes him much easier to live with.

Actors, on the whole, are not renowned for their serenity. Self-absorption is their stock in trade, and, certainly in Tony’s case, so is a gloriously theatrical temper. It can be fascinating to watch but not entirely pleasant to be on the receiving end of.

I have, on occasion, moaned to close friends about the difficulties of living with him. It is therefore something of a surprise to realise that a part of me quite misses all of that. I am nothing if not contrary.

The rage and frustration have subsided, but there will be no quietly giving up just yet. I feel that, like the garden and the dogs, he is merely hibernating, still waiting for the opportunity to spring into life, demonstrating flashes of the old Tony.

It was my 60th birthday at the beginning of January, and to celebrate I organised a joint party with an Irish friend. We had a céilí, with an excellent band. It was such a good night with people who never usually dance, up and do-si-doing with the best of them. The circle dance at the end was a particularly wild affair.

Tony is not fit enough to dance, but he enjoyed himself chatting to family and friends we have not seen for a while. He was well looked after and spoilt. He was happy entertaining people with his stories, thoroughly woken from his state of hibernation.

For me the best point of the evening was when the band played a gentle waltz. Tony took me in his arms and held me tightly as we waltzed slowly around the floor. It was the best birthday present I could have had. I love him so.

It is important to remember that we all need affection. It is so easy, with the never-ending cycle of tiredness that comes with caring for someone with dementia, to forget about those simple gestures. I know I am guilty of it. The hug, the loving touch on the arm, the meeting of eyes in recognition and understanding. It takes but a moment.

Tony can no longer remember the names of the dogs and the cat. He now just calls them Dog and Cat or makes encouraging noises when he wants them to come to him. This they have accepted with a good grace.

August 26, 2016: ‘Tony now has to know where I am at all times’

I am sitting on the cellar steps. In the dark. Hiding. I can hear Tony moving around the house, calling for me. I do not respond. I do not want him to know where I am.

I lean my head against the wall, absorbing the comfort of darkness and the welcome coolness of the wall. The freezer rumbles occasionally. The only sound I want to hear. It has been a horrible day.

We are into a new phase of Tony’s dementia. He has to know where I am at all times. Logically, I understand his insecurity. The world is an increasingly frightening place for him. But I cannot always be his human comfort blanket. I cannot always make the world a less scary place.

I hear him now appealing to the dogs to help find me. I will stay where I am until he gets close. Then I will go into the garden and pretend I have been there all the time. He will be distressed if he thinks I have been hiding from him. I will say I have been looking at the stars.

He will stand next to me, and together we can remember the beautiful night skies in Cavan. How we used to sit on the doorstep of our home, counting the shooting stars. I miss the wonder and the infinite space of it all.

Tony’s first wife, Gale, died recently. He was taken to visit her before she became bedridden and too ill. They sat together oblivious to anyone else and chatted. Tony had his arm around Gale and stroked her hair. They were finally and completely reconciled. No more bitterness, no more resentment, no more what-ifs, just a final, peaceful understanding.

As Gale’s funeral ended Tony grabbed my hand and said, “Please, let me stay with you.” Who knows what was going on in his head, but his fear was real. He has always seemed, and believed himself to be, invincible. No matter what, Tony is a survivor. The reality of impending mortality is a scary notion, one that is too difficult for him to articulate.

His lexicon has diminished, and his speech is increasingly slurred and difficult to understand. Sometimes a roar of frustration is the clearest expression of his feelings. That and, more often now, tears.

And we have had a difficult few weeks. Things became much, much worse before they began to get better. I wanted to run away. I wanted to be in a place where no one would find me. I did not want to talk or think. I did not want to smile or be sociable. I did not want to care for anyone, not even myself.

Contemplating death seemed rational. Not because I wanted to be dead – most certainly not – but a period of oblivion seemed like a good option. I am sure, for many reasons, that people have felt the same way. It is the struggle to get to the other side of the black and fast-flowing river that can become almost impossibly hard.

I still have moments of all-consuming anger and despair, but I have made it to the other bank. I am here, and I can write about it. I can acknowledge to myself that I do not like Tony very much any more.

He is not my Tony, and there is no reason why I would like this replacement. He shows no kindness or thoughtfulness.

He no longer has the skills to be conversational, let alone sociable. And I can now say all this without the worry and guilt of feeling that I’m a terrible person. I am not superhuman. I am not a saint. I am me, with all my frailties – including the stubbornness that keeps me hanging on.

I always want to finish my articles on a note of optimism. I do not want people to think my life is one of unrelenting difficulty. That is far from true.

What is true is that the clear-sky moments when Tony is lucid and agreeable are less and less frequent. His confusion and insecurity are now the dominant factors in our lives.

Steph Booth’s Married to Alzheimer’s is an occasional column published in the Irish Times Health & Family supplement. The next instalment will appear on irishtimes.com on Monday, September 19th, and in print on Tuesday, September 20th, when Steph Booth will also appear on The Ray D’Arcy Show, on RTÉ Radio 1 at 3pm

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