'Working 365 days a year as a carer, I was on my knees with exhaustion'

BERNADETTE BRADYwatched as dementia destroyed her mother's memory, her personality, her ability to communicate, to recognise her loved ones and, eventually, to recognise her own face in the mirror. This is Bernadette's story

I KNEW THAT something was wrong. I had observed subtle changes in my mother’s behaviour and memory over many months. If I am honest, I knew exactly what was wrong, but I was too terrified to acknowledge it. I didn’t need any scans or memory tests to confirm the diagnosis. Common sense and a little knowledge told me that my mother had dementia.

I tried to persuade myself that maybe I was overreacting. Perhaps the changes I was noticing were all just part of normal ageing? My mother was 77 years old at the time, even though she looked at least 10 years younger. She was a nurse, a highly intelligent, vibrant, extrovert with a photographic memory. She loved life and she was full of enthusiasm.

After her retirement she made a point of keeping her mind and body as active as possible. She was exceptionally fit and she walked several miles each day with our dog. She was an avid speed-reader and she worked her way through several tomes each week. Surely dementia could not strike someone with a mind like my mother’s?

How wrong I was. Dementia does not discriminate between the active, educated mind and the less active mind. It has no respect for intellect. It cares not about one’s love for life or one’s plans for the future. It is a cruel, relentless, destroyer of the brain.

It struck my mother and it struck her hard. It slowly and silently began to usurp her wonderful mind. It destroyed her memory, her love of life, her personality, her ability to communicate, to recognise her loved ones and, eventually, to recognise her own face in the mirror. It transformed her from an incredibly gentle, caring, loving woman into an aggressive, agitated stranger who was frequently physically and verbally abusive.

In the early days, the manifestations of the disease were quite subtle. My mother would, for example, repeat the same story or ask the same questions twice or three times over the course of the day. When she went to do the grocery shopping, she regularly came home with items that she never intended to buy while forgetting to buy most of the essentials. She lost interest in her appearance and stopped visiting the hairdresser and colouring her hair as often as she used to. She also stopped having a daily shower and I had to remind her to have a shower once or twice a week.

She lost interest in television and in reading as her memory was affected to the point where she was no longer able to follow a storyline. She became less and less inclined to leave the house to go out, for example, for coffee or to go shopping. When she was cooking a meal she often forgot to add several ingredients and then did not appear to notice her error. She often wore the same clothes for several days in a row even if they were marked or stained. When her sisters phoned from New York there was a vagueness and hesitancy in the way she spoke to them. It was as if she was uncertain as to whom she was speaking.

A CT scan of her brain in 2001 showed atrophy or shrinkage in several areas, predominantly in the frontal lobes, and this together with the memory problems and changes in behaviour pointed strongly to a diagnosis of dementia. When other tests were completed to rule out any other possible causes for her problems, the diagnosis was finally confirmed. I wasn’t shocked. I had been expecting the news. But I was still numb, terrified and heartbroken. Nobody could say how fast the disease would progress or what new symptoms or behaviours would emerge. Everybody is different and the disease affects different people in different ways. It was a case of having to take one day at a time and waiting to see what the future held.

I became my mother’s full- time carer when I was 33, by choice. I had no siblings and my father was dead. I had a very close relationship with her. We were best friends as well as mother and daughter. I wanted to take care of her. I wanted her to remain in the comfort of her own home for as long as possible.

Part of me was still in denial about her diagnosis. I read a lot about ageing and I learned that as we age we lose brain cells which are never replaced. This is why our memories tend to become less sharp and reliable as we get older. Although the dreaded D-word had been officially confirmed, there was a part of me that hoped desperately that the diagnosis was wrong and that my mother’s memory problems were really just a part of the normal ageing process.

But as the months passed, things deteriorated. There were good days when it seemed like there was nothing wrong with her. But then there were not so good days when she was intermittently confused and disorientated. Gradually the good days became fewer, and they were replaced with bad and, eventually, very bad, days.

I was upstairs one bitterly cold Sunday afternoon when I saw my mother standing at the open gate, without a jacket, looking up and down the road. Then she began to walk towards the busy main road. I ran after her and when I caught up with her, she looked at me with a puzzled expression on her face as if she didn’t know who I was. She told me that she was going home to her mother and her father. She pulled away from me and continued to walk down the road. It took me almost an hour to persuade her to come back to the house. I promised her that I would get the car and give her a lift home to her parents if she came back with me. Reluctantly she did.

From that day on our home became our prison. My mother was by then convinced that the house in which she had lived for over 30 years was not her home and she became obsessed about getting out of the house to “go home”. All the exterior doors and windows had to be kept locked at all times and I had to keep all the keys with me.

She seemed to forget who I was quite quickly. Sometimes she recognised me as her daughter. Sometimes she called me by name correctly but thought that I was her sister. Frequently, she looked at me with a puzzled expression on her face and asked me what my name was. She pleaded with me several times every day to bring her home. When I reminded her that she was safely in her own home she got very upset and insisted that it was not her own home. Where were her mother and father? Where were her brothers and sisters? The fact that she could not go to them reduced her to tears every day.

It became more difficult to convince my mother to eat. She usually insisted that she would eat when she went home to her parents. Our routine of breakfast, lunch and dinner vanished. It was a case of offering her food frequently throughout the day, hoping that she would eat enough to sustain her. Some days she ate very well. Other days she ate little or nothing.

The evening times were the worst. Her confusion and disorientation worsened dramatically then. This effect is called sundowning and is common among dementia sufferers. As the evening progressed and the sundowning effect took hold, Mum would put on her jacket, take her handbag and walking stick, and sit at the dining room window waiting for her father to collect her.

She suffered from a degree of paranoia which was part of her condition. She would not allow me to put the light on in the dining room while she sat in there as she did not want people to be able to see her from the street. She often sat there in total darkness until the early hours of the morning.

Sometimes she allowed me to sit in the darkness with her. Sometimes she ordered me out of the room. Eventually, tiredness overcame her and she fell asleep. The following evening we would go through the entire ritual once again.

She regularly refused to go to bed at night. She claimed that her bedroom was not her room and that her bed was not her bed. Sometimes she paced the house, going up and down the stairs and from room to room, all night long while I could only supervise her from a distance.

We could not turn the television or radio on in the house at all as she was convinced that the people she heard or saw on the screen were in the house and that terrified her.

In the early stages of her illness, I used to bring her with me in the car while I went to do the grocery shopping and she sat contentedly in the car and waited for me. Afterwards, we always went to a local coffee shop or for ice cream in the summer. As her illness progressed, however, she began to get out of the car after I went into the shop and I often came out to find her wandering in the car park. So I had to resort to rushing into the shop, grabbing one or two items, paying for them at the express check-out and then dashing back to the car to make sure that she was still safely in it. Then I would repeat the process several times, buying a few items at a time, until I had finally finished the week’s grocery shopping.

Mum’s general behaviour became very erratic. She set fire to the kitchen one summer’s evening while I was out in the back garden cutting the grass. She turned on a ring on the cooker and walked away and left it. A corner of a tea towel which lay nearby caught fire. My dog alerted me to the danger by standing at the back door and barking frantically. When I went to see what the matter was, I saw the fire which luckily I was able to extinguish myself. Mum stood at the sink nearby peeling potatoes completely oblivious to the flames in one corner of the kitchen.

She could no longer distinguish day from night, so I often came downstairs in the morning to find the oven turned on fully, or all the rings on the cooker turned on to the maximum settings. Mum had obviously come downstairs in the middle of the night and done this and had then returned to bed oblivious to her actions. It was then time to start locking the kitchen door at night and also if I was out of the room for even a few minutes during the day.

The only time that I could unwind was when Mum was in bed at night and asleep, that is, if she agreed to go to bed at all. That was the only time that I could turn on the television and sit and have a cup of tea to try to relax before I went to bed myself. Likewise, the only time that I could have a shower was when Mum was in bed and asleep as I could not leave her downstairs unsupervised.

One evening when I thought Mum was asleep I came downstairs. I was about 20 minutes in the kitchen. When I opened the door into the living room water was flooding through the ceiling, running down the walls and dripping off the light fitting. I ran upstairs to find Mum in bed asleep. She had obviously woken up, went into the bathroom, put the plugs in the sink and bath, turned on all four taps and went back to bed. The bathroom, living room, landing and stairs were flooded, and the ceiling and walls downstairs were destroyed. I sat on the telephone stool in the hall and I cried like I have never cried before with sheer despair.

Our situation was getting more and more out of control and I knew that I could not handle it on my own for much longer. I moved into Mum’s room and slept in the same bed with her every night.

Day centres were not an option for my mother. Crowds frightened her, as did strangers. Similarly with respite care. She reacted very badly to any change in her surroundings. This is very common among dementia sufferers. They do best in a consistent, calm, familiar environment. I was afraid that the experience would worsen her dementia to the extent that I would not be able to manage her at home on my own when her two-week period of respite was complete and I had to bring her home. So we battled on alone at home. We were living in complete isolation. We had no contact with the outside world. The days, weeks, months and years passed by, and the only thing that changed was that my mother’s condition got worse. I often stood at a window and watched people pass up and down the street.

I saw people laughing and chatting. I saw people jogging and out walking their dogs. But we weren’t part of that world. It often occurred to me that prisoners incarcerated in our jails had more freedom than I, as a sole carer, had. They had company, medical and psychological support, recreation, exercise, contact with the outside world via television and visitors, the freedom to have a shower whenever they wanted for as long as they wanted. I had none of those things. I know that they did not have the liberty to walk down the street and go to the shops whenever they wanted, but neither did I. Yet I had committed no crime. My mother had committed no crime. She was ill with dementia and I was her carer.

When Mum was agitated she never felt tired. She paced the house all night long. At that stage, my health was beginning to suffer badly. I had acute depression, anxiety and panic attacks. My mind was consumed and overwhelmed with the daily misery that I was experiencing.

As Mum’s illness progressed, she began to experience periods of aggression which frequently escalated into violent behaviour. If, for example, I wanted her to do something that she didn’t want to do, like get dressed in the mornings or put on her nightdress at bedtime, she would shout and scream at me. If I went too close to her when she was agitated she would lash out and hit or pinch me. One evening as I was kneeling beside her taking off her socks at bedtime she picked up the clock beside her bed and hit me over the head with it, cutting my scalp badly. She threw mugs of hot tea at me if she didn’t want to drink them. She gave me black eyes on a number of occasions.

But she was totally unaware of what she was doing or who she was doing it to. My mother was by nature a gentle loving woman. Dementia had taken such control of her that she was no longer aware of, or could control, her own behaviour.

I contacted the Alzheimers Society of Ireland for advice and they told me that I was eligible for home respite where one of their trained carers would come to the house for four hours on one day per week to give me a break.

I went on a waiting list immediately, but thankfully I only had to wait a short time. A lovely lady came to my house every Wednesday afternoon for four hours. She sat with Mum, made her a cup of tea and talked to her. If, as was common, Mum didn’t want to be around her because she was a stranger, the carer let her move around the house as she wished while she kept an eye on her from a distance. Meanwhile, I was able to go out and do the grocery shopping and pay the bills and do other day-to-day things. I always returned home with my batteries recharged and ready to face another week. That four-hour break was indescribably wonderful.

Unfortunately our carer was then sent on a course to further her skills, which meant that she could only come to us on alternate Wednesdays. On the weeks that she was not with us I did my grocery shopping online and had it delivered to the house.

Our carer was my only contact with the outside world and there were many weeks when I did not leave the house at all while she was there. I just sat and chatted with her and relished her company.

I then applied for the Home Care Package in the hope that I would be able to obtain more help at home. Means testing and assessment for the package took months to complete. Eventually, I received a letter saying that I had been approved for the grant. However, the sum of money that had been approved would pay for only a few hours of help a week. Our combined incomes consisted solely of my carer’s allowance and my mother’s old age pension, yet this is all that the HSE felt that I was entitled to. I was working 365 days of the year, 24 hours a day in total isolation as a sole carer. I was on my knees with exhaustion.

My health continued to deteriorate until I finally came to accept that the only sensible solution to our crisis was to put my mother into long-term care. I was offered a bed in a public facility in Dublin which I went to see. I was shocked and horrified at what I saw there. The patients did not even have the luxury of a sitting room to sit in. They sat with their chairs jammed one against the other in a corridor-like setting.

I could not commit my mother to end her days in a facility such as that. No matter how bad things were at home, that was not an option.

Private nursing home care was not an option either. The proposed Fair Deal scheme had been shelved at that time and there was no way that I could even attempt to afford the fees to pay for private care.

Eventually, I was offered a bed for my mother in a public specialist dementia unit which catered specifically for mobile dementia patients. I can honestly say that the day I brought her there was the saddest day of my life. I was consumed with guilt.

I felt that I had failed as a carer. I had to finally surrender my mother to institutional care. And that broke my heart. That specialist dementia unit closed in March of this year for a number of reasons. My mother is now in a long-stay ward in the same hospital.

My mother’s disease is progressing as expected. She has lost the ability to communicate or to use words properly. There are so many things that I would love to say to her. I want to tell her how precious she is and how much she is loved. When she is frightened and tormented, I want to take away that fear and torment and reassure her that there is no need to be afraid, that I am there with her and that I will protect her. But I cannot reach her. It is the most horrible and relentlessly cruel disease in the world.

As a result of the current and dramatic economic downturn, our already beleaguered HSE is falling apart. Cutbacks are hitting healthcare like never before. What, if any, help is available now for carers who are in crisis trying to care for a loved one with dementia at home?

When I became a full-time carer, I had youth, energy, stamina and good health in my favour. The vast majority of carers in Ireland are older people caring for a spouse or a sibling. They do not have youth on their side or energy or stamina, but they struggle, often in complete isolation, to continue to care. And, just as my health broke down as a result of the incredible stress of caring for a loved one with dementia, their health will break down, too. Then our already crippled public hospital system will be left to pick up the pieces and care not only for the dementia sufferers but also for the carers.

It is now time that Ireland faced up to the nightmare of dementia as a matter of extreme urgency. It is time that carers were properly supported and helped to carry out their caring role. It is time that dedicated residential facilities were provided for dementia sufferers who need institutional care. It is time that these tormented, voiceless, vulnerable souls had their needs properly acknowledged and be provided with the specialist care that they so richly deserve.

The Alzheimer Society of Ireland’s helpline is 1800-341341 or visit www.alzheimer.ie