Remember who they were before the disease got them.

I put out a call for stories

This time around, Lauren shares her experience of dealing with her father who has Pick’s disease. The sentiment of this interview is unlike the previous ones. I couldn’t help but feel very sad and heavy, yet incredibly empowered as she candidly speaks about the great help she received from her friends and therapy.

Question: What is your relation to the person with dementia?

Answer: He is my dad.

Q: What form of dementia do they have? When and how did it start showing?

A: My dad was diagnosed with frontotemporal dementia also known as Pick’s disease. At the time in February 2015, he was 57 years old but doctors think he had it for 2 years, roughly, prior to diagnosis. It started showing to me a year before this. Gradually his actions were getting worse and worse – including: not washing himself; drinking and eating in excess; not going to work; driving out of control; lying; and many other factors.

How was your first interaction with them upon realizing they were different from before? Were you scared, confused, shocked, sad,…?

A bit of everything to be honest but mostly really hurt, sad and scared. My dad was my best pal. I moved in with my dad when my parents divorced when I was 14 or 15. We have a really strong bond and I felt my world crashing down around me upon hearing the news and I feel from that moment, it triggered a feeling in me – a horrible, hurt feeling – and that has just gotten worse and worse. I think the whole factor of this being Pick’s as well added to this as it’s very different from other dementias.

How does the disease affect the way you interact with that person?

I cannot remember the last time I had a full, proper conversation with my dad or the last time he has given me advice – which he was amazing at doing. Now he just says certain words or laughs at everything which I suppose is better than him being upset. When I visit, it’s usually silent so I play his favourite music, and we look at pictures and funny videos or videos of dogs. My dad can’t properly use his phone now and doesn’t bother trying when he used to call numerous times a day and text ‘good night’ every night till the middle of last year.

What would you tell people who just found out somebody they care about has dementia?

In all seriousness, I would say make sure you have support ready. I don’t have any close family so my friends have been my rock. Also, I’m now in therapy and on depression medication to help me deal with what is happening to my dad as he continues to get worse. And talk about it! Find people online, go to groups if possible, and try hard to remember who they were before the disease got them. It keeps me going. Constantly going through memories, I have also made photo books and playlists of my dad’s favourite music.

What is the funniest/scariest thing the other person has done?

Scariest thing? Oh, where do I start! He has eaten things out bins; he has eaten full bags of dog biscuits; he has shoplifted; done “the toilet” in public on purpose, like, not by accident – which now happens everyday; he drove when he wasn’t meant to; he entered a lady’s house to ask for tea and biscuits resulting in her calling the police, then when she found out he had dementia she understood.

Funniest?

At this moment in time I can’t think of anything which is quite sad but I will try to think of something.

Anything else?

This has changed my life for the worse and the better.

The worse: it has emotionally affected every aspect of my life, including work and relationships. You need a strong support group and an understanding one.

For the better: it has made me appreciate life more. I have became more patient and gentle, and also look out for others I feel could have the disease. People don’t know this but my dad is not an 80-year-old sitting in a care home. He’s a fit and healthy 60-year-old. He worked his whole life and was only just put in a care home at the end of last year and part of him still wants to get out and work.

Thank you for reading this.

Interviewee: Lauren Walsh

Instagram: @laurenwalsh89

Twitter: @lwrawr

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