Real stories

My dad’s dementia diagnosis is a shock for our family

My father is the best father in the world. He is kind and so funny and truly is an amazing man.

At any opportunity, my dad will dance. He loved Shakin’ Stevens and taught me how to do the criss-cross with my legs when I was 6 or 7. He is always laughing and being silly to make me, his wife, and grandchildren laugh.  

All my memories are my dad making me laugh. I don't ever remember my dad being mad or angry ever. He is so caring. 

He has worked all his adult life as a cleaner, having two jobs until 6 months ago, where he gave up one of them. He was working until a month before his diagnosis.

A big shock

It was a shock when he was diagnosed, as we had picked up that he was forgetting things but not to the extreme. 

We noticed he was forgetting hospital appointments – when the hospital rang him, dad forgot as soon as he put the phone down and his wife had to ring them back.

We also noticed he was repeating himself.

It was not until he went for a routine appointment that the doctor picked up on his memory problems and made an appointment at the memory clinic, which is where my dad got his diagnosis.

Dad seems to be taking the diagnosis in his stride, but I know he is scared. He won't show it though, as he never wants to do anything that he thinks will upset me. He has also beat skin, bowel and colon cancer, so getting this diagnosis has absolutely devastated me.

My experience as a care worker

I know he doesn’t know the extent of his diagnosis and what is in front of him.  

To be honest, I'm glad, because I’ve seen first hand what we can expect.

I work in care, so I understand what the families also go through. I’ve seen that they don’t get support on how to understand what their loved one is going to go through.

Families aren’t given support to understand that when the person with dementia gets aggressive, they don’t mean it. When they wander out into the garden at 2am, they do not do it to upset you.  There needs to be more support for families. 

I know a lot about dementia, as I’ve done a lot of courses, and have worked looking after people with it.  

But this doesn’t stop me feeling angry, upset, devastated about my dad’s diagnosis.

Dealing with my emotions

Because my dad looks and acts younger, I sometimes forget that he is 75.

I don't know how to expect that I will lose him to this vile disease. I now understand why they call it the long goodbye – because I know his physical body will be here, but all the memories of us will go. He might not know who I am – this is the part that breaks my heart.  

I can’t even bring myself to explain dad’s diagnosis to my own children. I don’t want to go there and break my children’s hearts as well. 

I’m so angry that he has fought cancer three times, yet it’s this disease that is going to take him away.  

I know that we all pass over eventually, but it’s the slow process of dementia: watching him go from my kind, funny father who is always dancing, to him not knowing who we are, and not being able to stop it from happening to him. 

I went to see my dad recently, and we sat and watched some old songs from the 50s. He remembered them all.