The Impact of Caring
Dorothy Mooney
Eric and Dorothy on their wedding day
Caring for people who were and are precious to me has always brought me great joy and throughout my life I
have been fortunate to experience only unconditional love from those close to me. Being an only child my late
parents showered me with love and I was the apple of their eye. Then forty two years ago Eric came into my
life and well I think I became the apple of his eye! He loved and cared for me in so many ways, he also cared
for my late parents, he cherished our two sons and adored our numerous wonderful pet dogs. There was
nothing he wouldn’t do for family, friends, neighbours and total strangers alike. Then nine years ago the
insidious disease that is Alzheimer’s made its appearance in our lives. We are now at what you would call an
advanced stage in the disease and my position in Eric’s life now is as his carer not his wife and has been for
many years. Currently he relies on me totally for his every need and he who was the most wonderful of carers
has become the recipient of care.
Together for ten years we cared for my mother who in her late eighties developed dementia. Thankfully it
only affected her short term memory and there were no behavioural or personality changes. Until the
moment she took her last breath, aged 99 she knew Eric, our sons and I. So nothing could have prepared me
for what the role of caring for a life partner with Alzheimer’s disease would entail or for the emotions that I
would experience daily. At this stage I feel that I am all cried out but I’m still crying on the inside and my heart
aches so much. At times I feel so traumatised by what is happening to us day after day that I just want to run
away and not look back. I awake most mornings with butterflies in my tummy as I never know what the day or
night holds in store. Each day brings a new challenge and with it a roller coaster of emotions. I am constantly
in a state of “red alert”. The last twelve months have been particularly difficult. I have had to think outside the
box on many occasions as I have been confronted by demanding issues that arose in Eric’s care. I had to find
answers to these problems myself and thankfully I did so as at times I was in total despair. The answers have
made life a little easier for us both but the underlying problems are still very much present.
As the years roll by and the condition progresses I am finding it harder and harder to remember Eric as he
once was. This saddens me as he was a man who was totally at peace with himself, a fun loving man. I am
caring for someone who bears no resemblance to the man I married with the one exception. I believe he stills
feels and understands love. Eric was very articulate but alas now he has very few intelligible words as his
speech declines. However one evening last week he looked across at me and smiling beautifully, he uttered
the words “I love you”. He repeated them. The words were crystal clear. My heart melted. I will treasure that
moment forever. Just like the time when he said I was his best friend as the word wife didn’t come to him.
I remember recently when our son was taking a photograph of us together for the ASI “Still Campaign”. Eric
lovingly put his hand on my head and said “my wife” and then kissed me. That photograph now means the
world to me. I read somewhere “we do not remember days; we remember moments” and for me this is so
true. I care for Eric out of love and deep down in his psyche I am sure he is aware of this. If I could be granted
one wish it would be that we could be given a few months remission from this bad dream so that I could have
Eric of yesteryear back once more. It would be lovely to revisit the places we travelled to together and where
we said we would return one day. Even better it would be wonderful to be able to create new memories, to
see new places. Even just to have him bring me some tea and toast as he always did when I felt under the
weather and to tell me everything would be alright. It would be lovely to walk together on the beach and talk
about the happy events in our life and to have my friend back to share my worries with. But the reality is that
it will never be.
Besides experiencing the emotional, psychological and lonely impact of caring I am also feeling the physical
result of it. My husband is a strong, physically fit man. Presently I and his wonderful HSE community care
team look after all of his personal needs. However sometimes it requires that I carry out these tasks on my
own, with the result there is pressure put on various parts of my body and it necessitates me using a good
deal of my physical strength. This at times results in a lot of bodily pain for me. But I still have to get on with
the job in hand. As a carer your pain goes on the back burner and your needs become secondary. Most of the
time I reside inside Eric’s head as I do my utmost to decipher what he is feeling and thinking. At times I
wonder if he is fearful, if he is happy or what exactly is he trying to say. This can be mentally exhausting and I
struggle to keep my patience. But it is equally so for him as he attempts to make himself understood in a
world that is so alien to him now.
Recently I was thinking, what if I fall by the wayside who will step into my shoes? I now realise that I must
seek out as much help and support as I can and accept the assistance whenever it is offered and it what ever
shape it comes. If only the powers that be could walk in my shoes, just for a day and witness what each day
involves and what is required in the care of a loved one with this disease. More effort must be put into
acquiring additional supports for carers and their loved ones and most crucially more funding must go
towards scientific research in support of dementia. We have got to think of future families. As I mentioned
previously Eric has Alzheimer’s disease which accounts for 60-80% of all diagnosed cases of dementia. He has
no other underlying health issues. He led the healthiest of lifestyles, as we are advised to do. In our situation
when Alzheimer’s disease decided to take our life away it paid no heed to a life well lived.
Fortunately Eric has no idea of how this heartless disease has impacted on our sons lives and on mine. To
witness someone who is so loved, this once contented, gentle soul who is slowly being chiselled away and
transformed into someone unrecognisable to you right in front of your eyes, well words just cannot describe. I
will care for Eric in our home for as long as it is humanly possible for me to do so and I will always be his voice.
The essence of the man is gone but his beautiful smile is still there. I do my best to keep it in my minds eye
and in difficult times I try to focus on it, on our special times together and on my memories before we started
out together on this lengthy, heartbreaking and relentless journey.
I extend my sincere gratitude to The Alzheimer Society of Ireland and my community HSE care team. You are
my lifeline.
The Alzheimer Society of Ireland works to ensure the voice of people with dementia and family carers are
heard. The organisation facilitates two advocacy groups- the Irish Dementia Working Group and the Dementia
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Carers Campaign Network. The Dementia Carers Campaign Network is open to anyone in the Republic of
Ireland who has experience caring for someone with dementia. It is a national campaigning group, raising
awareness of issues facing families affected by dementia and lobbying for policy change. If you would like
more information about the Dementia Carers Campaign Network please contact us at [email protected].
If you have found anything in this piece distressing and would like information or support please call our
free and confidential National Helpline on 1800 341 341.
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