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Losing and finding Dad in dementia

13 Comments
Julie Guirgis |  15 June 2016

 

It's nearly 6pm; I'm winding down from a day's work and thinking about preparing dinner. Then Dad appears in the kitchen doorway and asks 'Am I going out today?'

Elderly man, head down in shadowsHe can no longer tell the time. For him, 6pm could be 6am in the morning. 'The day is over, it's night time,' I say. 'Look outside.' I don't shout, but there's an edge to my voice. As soon as I've spoken I regret it.

Sometimes I wipe away a tear and vow to do better. But five minutes later, when he again asks 'Am I going out today?' I know I'm probably not going to succeed.

***** 

One day I walked past the bathroom and noticed a pale yellow puddle with an odour worse than an unflushed toilet. I cringed at the putrid stench, with the realisation that I had to wash urine off the floor. In that moment my life felt insignificant. Freedom, once as natural to me as breathing, is now competing with a barrage of demands.

A week later I was lounging on the bed reading, when Dad abruptly banged on the door and yelled, 'Where's Anthony?' Anthony is my intellectually handicapped brother. 'He's at the day program Dad.' He repeated the question, only this time louder: 'Where's Anthony?' I felt frustration surge through my chest and spill out my mouth. 'He's at school, Dad,' I said, louder now, too.

One minute lapsed before he repeated the question a third time. At this point I could no longer mask my rage. 'Are you dumb?' I asked, overemphasising each word. Although oblivious to the insult, he was aware of my anger, and made his anger known by banging on the door even louder.

Then he yelled out yet again, 'Where's Anthony?', pounding on the door so brashly that it sounded like a gun in a Mad Max movie. Without a bulletproof vest to protect me I felt the metal penetrate my skin. I laid there immobilised, and let out an unfamiliar scream before I burst into tears.

 

"'They are going to kill me if I go outside,' he cried. He became so paranoid that he thought the fridge door was a point of entry for these imaginary perpetrators."

 

Not long after the incident in my bedroom Dad displayed more concerning behaviour. The ugly side of dementia had once again raised havoc in his tormented head. 'They are going to kill me if I go outside,' he cried with the helplessness of a child.

His terror-filled eyes stood out against his frail, distraught face while his breath came out in ragged gasps. He became so paranoid that he thought the fridge door was a point of entry for these imaginary perpetrators. When I would open the fridge he would scream 'Shut the door,' slamming it with such force that it nearly crushed me.

 

*****

 

Dad's illness sometimes causes ambiguous loss. It is unclear, has no resolution or closure. He is like someone I don't know anymore; he is gone-but-still-there. This leads to complicated grief. I search for Dad's familiar face, but even that has changed. His eyes that once shone are glazed with confusion and fear. I barely see a glimpse of him. I can't look at him without seeing a fading picture of who he used to be, and speak of him in the past tense. 

When I reflect on who he was before, it helps me separate him from the illness. I gaze lovingly at the photos of him resting on the mantelpiece. I see a jovial man with a warm smile, who loves his family more than life itself. My impatience softens. I press the photo against my chest, closing my eyes and remembering the magical moments. Days of going to the beach, soaking the sun and fresh air, frolicking in the sand. Calmness comes over me, remembering a time when I felt safe and at peace.

Dementia can be spiteful and cruel, travelling with its hideous companions, delusions and aggression. It is an impostor trying to steal Dad away. When I am feeling strong I can push it out of the way, to find remnants of Dad. On other days I can succumb. These are the days I would gladly hand him over to someone else. Even for a few hours. Nothing prepared me for the labour of love needed to care for him. Not only did it change his personality, it changed me into a person I no longer liked.

I never envisaged it would turn out this way. Nevertheless I've taken over the reins, although they were shaking in my hands. Despite the sadness and difficulties that go with dementia, I see the paradox. I'm able to experience all the different parts of him; the vulnerable side, the childlike side, and the fighter in him. I have learned to go into his world instead of expecting him to come into mine.

 


Julie GuirgisJulie Guirgis is an international freelance writer residing in Sydney Australia. Her work has appeared in Madonna, Majellan, Signs of the Times, Significant Living, Vibrant Life, The Edge, Now What?, Writer's Weekly, and more.

Main image: Shutterstock

 


Julie Guirgis

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Julie Thankyou for a beautiful piece of writing and thank you for the determination and love to care for a splendid human being , your dad In his vulnerability. Can you please tell us where you get your strength, moments of respite and deep swell of perseverence to continue this labor of love through all the obstacles. Bless you good and faithful servant at this privileged time of your life.

Celia 16 June 2016

Oh Julie . . . my heart weeps for you. May you have the strength and courage to do whatever needs to be done and wisdom to make decisions that will be painful. God bless you both.

glen avard 16 June 2016

Your last sentence - a life perspective for us all.

Jan Whiteway 16 June 2016

Hi Julie i feel for you and empathize as you see your dad get further into Dementia. My father-in-law is going down that path as well but with medication and an excellent care facility he is hanging onto reality as long as he can. He is frustrated as he knows he is losing it but when we catch him at a good time he is a loving father and grandfather. Blessings to you and your father.

Gordon 16 June 2016

Thank you Julie for this very moving article. I find your sharing so candid, reverend, full of love and full of pain, in the face of this mystery. I have a similar experience with one of our sisters in community who I have known since I entered the convent forty seven years ago. Sometimes when I am with her it hits that she could be me, and that's scary. I guess I just want to express my respect for you and your courage to accept that, hard as it is, you need to go into his world instead of expecting him to come into yours. May we find strength in the support of family and friends and in prayer.

Mary La Bruna 16 June 2016

A beautiful piece. What I learned about dementia is not how much the sufferer needed me but how much I needed them. This piece is testament to that. Thank you.

Peter Goers 16 June 2016

I remember reading a definition of dementia as "an acquired global impairment of intellect, memory and personality but without impairment of consciousness". I confided in a friend that I hoped that would never happen to me. Don't worry, he replied, you won't be aware you've got it but everyone else will have to put up with you. In recent years I have met and had to deal with older men and women (my contemporaries) with early onset dementia. None of them was a close relative so I didn't have the intimate family history that Julie writes about. By way of example I had a demented friend who could talk quite coherently about his musical instrument (clarinet), its case, his music, his music stand etc and just use the word 'thing' for each object. I found it frustrating but because we were meeting only socially for 2/3 hours I could put up with his aphasia. Julie's experience, so touchingly described, makes it clear how much professional counselling the close relatives of a demented person needs if they are to cope with the stresses unwittingly caused by the ill person.

Uncle Pat 16 June 2016

Thank you for sharing. It touches my heart. Your last paragraph sums it all...the pain and yet it is very motivating at the same time. Thank you and Take care.

Carina 16 June 2016

Thank you Julie for a beautiful and honest sharing of what it is like to care for a loved one with dementia. Your experience certainly resonates with my own in caring for first my dear mother and then later for my spouse. I now participate with BCS on the Stronger Carers Program as a volunteer since the Govt. saw fit to cut the funding. Most of the time all I can do is offer a listening ear with a few words of encouragement. Caring for someone with dementia is exhausting. We need more respite and home care packages.

Lorraine Murphy 16 June 2016

Dear Julie, what a wonderful and moving piece. When loved ones die our Christian faith tells us where we believe they are, with the Lord. When our loved ones disappear into dementia, we don't know where they have gone. We can feel lost in our own frustration. We are grieving their loss, even though we see them sitting or standing in front of us. Your article emphasizes the point of honouring ones father and mother and not despising them in their old age.Thank you for your poignant reflection.

James Clarke 16 June 2016

Thank you Julie for sharing the anguish of your situation. We experienced something similar with one of my younger sisters. Her dementia is more advanced now and although she does' respond much now, she is peaceful and much loved. God bless you and yours

Margaret Lamb 16 June 2016

“Not only did it (dementia) change his personality, it changed me into a person I no longer liked.” I recently attended “Creative ways to care” (Alfred Health Melbourne) for carers of people living with dementia: Responding to their relative’s “behaviours of concern” with diversional activities. The participants in the group, however, were more distressed by their own “behaviours of concern” : what they said/did when their frustration got the better of them. The course gave them a better understanding of what the person with dementia was going through, and strategies to respond in ways informed by that understanding. However, it gave them no strategies for dealing with their being “changed into a person (they) no longer liked.” I’m told as a carer I (1) need to schedule regular respite time-outs; and (2) could benefit from a course on carer grief (Alzheimer’s Australia). But something like “The mindful carer” could be more useful. I won’t be able to live up to my expectations of myself as a long-term carer. I see myself as having significant “behaviours of concern” but like Therese of Lisieux’s way of dealing with them : “Above all else, a refusal to give in to self-disgust.”

John Flynn 16 June 2016

Hi Julie, As an Aged Care Chaplain may I thank you for your article and open sharing. Your story of emotional struggle is duplicated 100's of times over by so many other Australians who wrestle in silence, alone and with a sense of guilt and failure. Dementia is a death without a funeral. Be encouraged to continue to travel with your dad in his story and leave reality and truth behind. There is an old saying, "You don't need a memory to have fun". May you share many treasured moments with your Dad as you both travel the challenging journey of Dementia. God bless.

Chris Wright 17 June 2016

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