Earlier this year Kay Bransford and I started a conversation blog called The Dementia Dialogue, and I recently answered this question, Could you describe how dementia “feels” to you?

The original question was this; “Could you describe how dementia “feels” to you? I wonder if it’s simple loss of a memory, or is there some type of similar experience to help us understand, for instance, is it similar to being woken up from a deep sleep and someone asks you a question and you are trying to understand what they are asking and how to respond?”

In answering her question, it opened up a Pandora’s Box, as many of the feelings I had not verbalised or written about. Please feel free to head over to our new(ish) blog The Dementia Dialogue to read the full answer, and our other Q and A’s.

I ended my answer to her question with this:

“So as I explored further how it feels to have dementia, I think it boils down to a few constantly recurring feelings – confusion – frustration – humiliation – embarrassment – loneliness – isolation – anger or irritation (which can lead to denial) – a deep sadness – and last but not least, worry, because I am constantly faced with an ever-changing playing field, never knowing what function is going to become impaired or lost tomorrow.”

The one feeling I forgot to write about was guilt. It is an insidious and relatively constant feeling worth discussing further.

I feel guilt as a mother as I can no longer be the kind of mum I want to be for my boys.

I feel guilt about not being the best wife I could be, or the type of partner I want to be.

I feel guilt about the fact my husband is constantly having to change his thinking and behaviour for us to remain well-connected. In the end, I cannot change the symptoms of dementia, even though I have learnt to paddle harder as much as possible. But the symptoms of dementia show their ugly heads, regardless of how hard I paddle.

I feel guilt for not being the daughter I would like to be to my parents. The care I was able to give my mother in law before she died, and even my father in law before he died, will probably not be possible for my parents. Right now, I cannot even drive them to a medical appointment of collect them from the airport.

I feel guilt as a friend, as my friends always have to make the effort to visit me, or pick me up.

Dementia, and in particular not driving has caused an inequity in all of the relationships.

I have had this mantra for years; “Guilt is wasted emotion” and have read and re-read the book Say No To Guilt, but they haven’t stopped me feeling guilty since having dementia. I do deal with it, and am constantly reminding myself it is not my fault, and my family and friends don’t want me to feel guilty. Regardless of this, and of my dear husband also regularly confirming constantly there is no need to feel guilty, the feeling is real and shows itself more often than I would like.

The feelings compound the effects of the symptoms of dementia, ensuring my paddling is less than effortless!!! The feelings of guilt also exacerbates the sadness, frustration and worry.

Thankfully, the more I talk or write about my feelings, the easier they are to assuage, and hopefully it might also help others to more fully understand the deeper human cost of a diagnosis of dementia.