Deborah

It has been 9 years since my father had a heart transplant giving him a new lease of life and allowing us to have him with us for much longer.

Unfortunately, the drugs that suppress my father’s immune system cause him to frequently develop skin cancers even though he never ventures into the sun.  He is, in fact, currently undergoing radiotherapy for a deadly melanoma known for its prevalence to those with suppressed immune systems.

What makes the side effects of his medication more challenging is the fact that he has vascular dementia.

Symptoms

My father’s initial symptoms were subtle, as if he was just absent-minded; where once he had been quick-witted.  A typical 10 minute conversation with him will comprise him asking the day two or three times at least.  Each response will be followed by ‘When did we arrive here at your place?’ and ‘When do we go back home?’ 

His loss of memory is particularly hard to cope with when explaining why he is undergoing radiotherapy and the length of his treatment. Once he learns of his condition he becomes despondent and usually comments that perhaps he isn’t worth all of this trouble.

From spouse to carer

My mother’s dedication to my father has been amazing.  My father recently spent a week in hospital and my mother camped out beside him for 12hrs a day in the event a doctor visited.  Dad needed my mother to answer the questions.  ‘Yes his bowels moved.’ ‘No, he hasn’t eaten lunch yet.’  A doctor giving instructions or advice to my father was also not an option. 

It is at those times that I am overcome with guilt at being so far away and not able to provide more hands-on support. For my father the disease makes telephone conversations difficult as we are limited to me questioning him about the weather, or about what he is doing at that exact moment.  

A personal struggle

 couple of months ago I picked up the phone to call my parents. Realising it was a Wednesday and my mother would be out.

Although I talk to my dad most evenings when I call home, it is usually just for a minute or two and he continuously repeats the same questions. This night I started to put the phone back on the hook before I thought about what I was doing.

I then realised I was being incredibly selfish as he is thrilled by calls.  So I called.

Lack of understanding

 saw a distant relative a little while ago and we were talking about my father.  They commented that they were worried that his long-term memory would be next and how horrible it would be when he forgets who we were.  I asked them if they wanted to see him and they responded that they actually preferred to remember him more as he was.

For me, even if my father doesn’t remember the moments that we shared together, it doesn’t mean they don’t exist.  I still know who he is and that’s the most important thing.

Deborah Morningside, QLD