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Wednesday 31 May 2023 Dublin: 14°C
Column This disease has robbed him of his smile and his laugh. I miss those most of all.
Those of us touched by Alzheimer’s disease know it to be a neurological condition like no other – it is unrelenting, writes Dorothy Mooney.

BEFORE LEAVING WORK in 2009 I was involved for 10 years in the organisation of our departmental Alzheimer’s Tea Day or our ‘annual get together’, as it was known. It went far beyond tea. On the day we had a wonderful array of cakes and goodies all donated by staff and students. It gave us an excuse to indulge in all that is bad for you. We included a raffle for people’s unwanted gifts which they were more than happy to contribute. I used to jokingly say what good value they were getting for their “silent donation” – not very subtle of me but it worked!

The success of our tea party was due to the generosity of my work friends, colleagues and outside visitors. We had established an excellent reputation as Alzheimer’s Tea Day hosts. I think it was the sugar surge they experienced once they stepped inside the door. I have so many happy memories of our tea parties. My involvement in the Tea Day was in gratitude to the Alzheimer Society of Ireland, in particular to the Cairdeas Day Centre, Raheny. At the time my mother who had age-related chronic short-term memory loss was attending the centre. In fact she did so for seven years until her death in 2005 aged ninety nine and a half. My mother was cared for with gentleness and respect, thus enabling my husband Eric and I to continue with our full time work.

Little did I think that was just the beginning

So began in 1997 my love affair with the Alzheimer Society. Little did I think then that my affair would extend to the present day.

My husband Eric was diagnosed with moderate stage Alzheimer’s disease on the 25 March 2012. This date will be etched on my brain forever. In 2006 I had begun to notice mistakes in Eric’s driving and slight changes in personality. In 2007 I sought expert medical advice and after two years of monitoring one consultant in 2009 told me that Eric would go on to develop Alzheimer’s disease. I could not accept his diagnosis and sought a second and a third opinion. Later in 2009 Eric was diagnosed as having Mild Cognitive Impairment. I hoped he would be in 50 per cent whose memory would remain stable or even improve. But this was not to be.

On the day of Eric diagnosis I was advised to contact the Alzheimer’s Society as soon as possible. I did so the next day. When I initially made contact to the helpline I could not utter the word Alzheimer’s. Not because of the stigma some people attach to the disease but because I had some awareness of its course and I had a fear of what could possibly await us. After diagnosis I experienced every emotion it was possible to undergo. I cried until I could cry no more. I was in total despair. Then I had a little chat with myself. I decided ‘this is the hand I have been dealt and it’s now time to take on another of life’s challenges’.

Alzheimer’s disease is like no other neurological condition

To view this horrendous disease as a challenge is the only way that I can psychologically cope with it. I want to learn as much as I can about it and the medications involved in its management. I do my best to acquire information through the Alzheimer Society, health care professionals, the Alzheimer Café etc. Many of us who care for family members touched by Alzheimer’s disease know it to be like no other neurological condition. It is unrelenting. There is no remission. Sometimes it is hard to sooth and reassure our loved ones as their intellectual capacity fades. There is no happy ending. In a few it can extend over a period of 20 years. It is not a disease where one size fits all. There is no rule book.

As it progresses through its different stages we are constantly faced with new fears, uncertainties and challenges. I cannot comprehend how people can go through this lonely journey without the support of the Alzheimer’s Society. With the exception of our two sons, their wives, friends, and a wonderful medical team my sole support in the care of Eric comes from the Society.

Much-needed support and relief

In the April following Eric’s diagnosis we attended our first Alzheimer’s social club in Clontarf. The love in the room was tangible. It was to be a turning point in our lives. I was struck by the age profile of the people there. It ranged from carers in their 50s to carers in their 80s. Each week the club is hosted by two unique people from the Society namely Marian Winters and Eugene O Brien. Their professionalism, kindness and good humour is inspirational.

On arrival we the carers are like people who have just been released from prison. From the moment we enter until the moment we leave, it is laughter all the way accompanied by plenty of tea, cake and song. Mind you sometimes it can be just like a therapy session as we release our pent-up feelings. We plan outings, three day breaks away in Ireland, at our own expense of course. These trips away lift our spirits and re-energise us. I think it comes from having people to talk to, to laugh with, someone who knows exactly what you are going through and the friendship we share. Most importantly we have something pleasant to plan and look forward to. Marian and Eugene always accompany us therefore we feel secure at all times. On the homeward journey we start planning our next trip away!

Me and my shadow

Eric attends the Le Cheile Daycentre in Glasnevin on two days of the week. I am blessed that he enjoys his time there. He is treated with kindness and dignity. The centre provides daily activities such as dancing, singing, exercise, pool, darts etc. Besides benefiting Eric it gives me personal space. I sometimes call Eric my shadow, as at times he has stood so close to me that I have trod on his toes. I listened recently to the lyrics of the song “Me and My Shadow” it brought it home to me what my life is like now.

I attended the Alzheimer Society support meetings and I found these meetings particularly valuable at the start of my journey. I received counselling through the Society with someone who had a good understanding of Alzheimer’s disease from the carer’s point of view. Each year the Society facilitates two courses for family carers, each of five weeks’ duration. I completed one in 2012 and found it extremely informative. It gave me the tools to give Eric the care he deserves while advising me on how to protect my well-being.

Every second week Eric goes to his Alzheimer’s Saturday club. It is a day packed with fun and it also allows me some time for myself. Each month we attend the Alzheimer Café in Glasnevin. There I access more information, drink more tea and eat more cake. Eric went for the first time for respite care to the Orchard Respite Centre in Blackrock last December. I wanted our first experience of respite to be a positive one for both of us. I was not disappointed.

This disease has robbed him of his smile and his laugh

Currently Eric is calm and is easy to manage. However it is becoming more difficult for me to deal emotionally with what is happening to him. In my experience, the emotions felt in the care of a life partner differ greatly to those felt in the care of a parent. I find it heartbreaking to see the subtle changes taking place in him. This disease has robbed him of his smile and his laugh. I miss those most of all. They were a hallmark of the jovial Eric we all knew.

It is so sad to see a man who is physically fit and to know that his brain is dying as a result of this disease. My husband worked hard all his life, adored his family, cared for others, obsessed about soccer, tennis, physical fitness, Tae Kwando and always had his head stuck in a crossword. Nowadays his obsessions are his keys, comb, wallet, mobile phone, two handkerchiefs, coat, glasses, shoes, watch and his favourite song sheet. Along with me, these are his securities.

He told me I was his best friend

He no longer recognises our sons so I feel a great sadness for them. He still knows me and each day tells me that I am his wife. Once, when the word wife was lost to him, he told me I was his best friend. I don’t think that he could have paid me any greater compliment. I envy couples who I see walking together chatting or maybe sitting having a tea, just enjoying the simple things in life. Eric may be by my side but I still feel very much alone.

The path of this disease is a frightening one for its victims and a lonely one for the carer. There should be more acknowledgement of the Alzheimer Society and the Trojan work they do at the coalface. Without their support and services I dread to think how Eric, my life, and that of numerous carers and their loved ones live’s consumed by this disease would be.

imageEric and Dorothy on their wedding day.

Alzheimer’s Tea Day it the largest annual fundraiser for the Alzheimer Society of Ireland, which takes place on 1st May. The aim of Tea Day is for as many people as possible around Ireland to host a tea party wherever suits them in aid of Alzheimer Society services. All money raised locally stays locally.

Read: New blood test could predict onset of Alzheimer’s

Read: Lack of practical arrangements increase stress for Alzheimer’s carers – survey

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