Real stories

Understanding my emotions after dad's mixed dementia diagnosis: Lucy's story

Firstly, let me tell you a little bit about me and Dad.

I am 30 and my dad, Roger, is 81. Our story began nearly three years ago when I noticed Dad was becoming forgetful and confused more frequently.

Dad lives alone and it became clear he was struggling to care for himself. He would go out late at night and not understand why all the shops were closed. He stopped showering and would often be wearing dirty clothes. Incontinence became a problem too.

I took him to see his GP and from there it took a long, 18 months to get the diagnosis. It was only after an MRI that, last September, we were told that Dad had Vascular dementia and Alzheimer’s disease in the moderate stages.

Getting prepared and practical following a diagnosis

Initially, the news brought a sense of relief. Now we know what is wrong with him we can focus on a cure. Surely dementia is just when old people become forgetful, right?

Unfortunately, this is not the case. The doctor gently told us the prognosis. Vascular dementia was incurable. His symptoms would worsen.

His memory would deteriorate and his cognitive function would decline. We needed to prepare ourselves for the inevitable and the support and care that he would now need.

There is great emphasis on the practical support needed by people living with dementia and their families. This is true, the support is greatly needed as routine tasks – washing, dressing, meal prep – become harder and then impossible to do. But as well as these practical challenges, what about the emotional side of the disease?

The emotional impact dad's diagnosis had on us

It has now been a year since Dad’s diagnosis and I have felt pretty much every emotion going. Sadness, obviously, especially in the immediate period after the diagnosis when I would switch between feeling ‘fine’ to crying in the supermarket because they were out of avocados (I soon realised that I’m definitely not crying because of the avocados!).

I have felt confusion. Dementia is so complex and every day is different. Dad can be perfectly clear and lucid one day and then have no grasp of what is going on the next.

A range of emotions

There has been a lot of ‘first times’ for us all. The first time Dad asked when he could go and visit his mom, who passed away nearly 30 years ago. The first time Dad confidently told me that he had been on a boat to Bristol, when I knew he had not left the comfort of his sofa. What did I say about this being a complex disease?

I have also felt self-pity. Why him? Why us? I would be lying if I said I have not felt anger and resentment towards my Dad at times too.

These feelings are quickly followed by guilt, which can become overwhelming.

I feel guilty for not being more patient, for not spending enough time with him, for not doing more. I even feel guilty for those times I don’t feel guilty.

Learning to accept the good and bad times

I would like to stress that it is not all doom and gloom. There are still nice times. Times of love, affection, and humour too. Dad can say some pretty out-there things, (note the boat trip to Bristol,) and you have to laugh, because if you do not laugh you will cry. We have done too much of that already.

So, one year on from the diagnosis, I have learned to just accept.

There are going to be good times and there are going to be bad times and I am going to feel a range of emotions. Who would not?

We are still father and daughter but our relationship is different now. I guess the inevitable has happened and the roles have reversed. Dad has changed, but he is still Dad and always will be. He is just going to be a new version of Dad and I need to accept that.

At the end of the day the only thing constant in life is change.