Chrissi’s childhood was not like most. She became a carer at the age of 11 when her dad received a shocking diagnosis of early-onset Alzheimer’s disease. She looked after him every day alongside her mum and sister, as he gradually disappeared before them. Chrissi wrote this letter when she was 16, not long after her dad passed away, and now she wants to share it in the hope that it will show the reality of dementia.
Alzheimer’s is one of the most painful diseases to endure, not only for the person diagnosed, but for their nearest and dearest too.
Many people stereotype Alzheimer’s as an ‘old person’s’ disease, but it affects young people as well as old. One of these people is my dad, who was diagnosed at just 46.
I remember the day he was diagnosed like nothing else. Mum and Dad had to sit me and my sister down to give us the bad news we had been hoping would never come.
“Your dad is terminally ill with Alzheimer’s”
I was only 11 and my sister was 13 so it was a lot to take in. All I knew was that it was to do with memory loss and that at one point, Daddy would forget my family and me. This belief needs to change. Alzheimer’s is much, much worse than just memory loss. It truly is terrible.
The difficult journey began with minor forgetfulness – mislaying belongings or forgetting to make a cup of tea. You wouldn’t have really guessed that anything was wrong with him. But this was only the beginning. The next changes were confusion with speech, not being able to get himself dressed and no longer being able to drive. These again were small changes compared to what was to come.
Then it all began to go downhill. In October 2011, Dad suffered a major fit which seemed to trigger the next stages of the disease. He became obsessed with my mum, to the point that he wouldn’t let her out of his sight. The fits became more and more common, each time worsening the disease.
Things then again deteriorated when Dad started experiencing delusions. He thought we were poisoning him, that he had killed someone, that his best friend was stealing his money and that Mum was terminally ill. I can’t begin to imagine the fear and confusion going through his mind. Dad then became very vacant, as if he’d lost his personality. He was slowly and painfully disappearing…
The breaking point for us was when the aggression began. We had carers who would look after him if we needed to go out, but he started to refuse to let them in, shouting and screaming and in some cases lashing out at them. The day I will always hope to forget is when he turned and showed severe aggression towards me and my mum. We were one side of the kitchen, protected only by the kitchen island, full of fear, and Dad was the other side with a book in his hands threatening us. We just didn’t know what to do. It took hours to calm him down and distract him. The disease truly had taken over Dad. For anyone that knew him, he was the loveliest, gentlest and friendliest man you could ever meet.
This was the point where we decided to take him to a specialist hospital unit to try and stabilise his aggression and confusion. After eight weeks had passed, the hospital recommended that it was time Dad went into a care home. I went with Dad in the ambulance and my mum and sister followed behind. I clutched his hand so tight the whole way there. It’s one journey I will never forget.
Once he was in the care home, the deterioration continued. Each time he declined more, it would feel like we were already grieving, as bit by bit we lost little pieces of him. He began to lose his speech so much so that he would only make small noises. He no longer knew who Mum, my sister Ciana and I were, which was so painful. At this point, he couldn’t feed or dress himself, walk or communicate. His mobility began to slow down until finally he became bed-bound. It was like he’d disappeared, and all that was left was a body. It was horrendous to watch.
Soon after this, his swallowing reflexes began to stop working which caused difficulties eating. Then, one night in September 2013, we got a call from a carer letting us know that things weren’t looking too good. We stayed for six long nights on the bedroom floor, surviving on little to no sleep, watching him and waiting for the moment. He was hardly eating or drinking – we knew the end was nearing.
The weight was falling off him daily until he was purely skin and bone. Knowing how much pain and discomfort he must be in and not being able to do anything about it was extremely distressing.
On the sixth evening of staying at the home, Dad sadly passed away. Despite the pain it caused us, it was a slight relief to know that he was now in peace and no longer living with the cruel disease that is Alzheimer’s. My best friend had now gone forever, due to one of the worst diseases I have ever witnessed.
Never in my life did I think I would only have 16 short years to spend with my dad. Not a day goes by when I don’t think about him. An emptiness unfolds inside me and all of a sudden I feel so alone and lost. I still can’t believe he’s gone.
I will now have a huge part of my life missing as I grow older. I will never have my dad there to help me through university, to walk me down the aisle on my wedding day or give me life advice. I will however cherish our past memories forever, and never let them go.