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Things I’ve Learned About My Dad’s Dementia

Introduction

Over the years that my Dad has suffered from dementia I’ve learned so much about how the disease affects him and how to deal with all the unexpected things that it throws at us.

In this article, I will talk about what I think are the most important lessons I’ve learned and the things that I wish I’d known or someone had told me earlier.

Compassion

We all think that we are compassionate people, but caring for someone with dementia really puts our compassion to the test.

I noticed when my Dad was in the early stages of dementia, often my Mum found it impossible to believe his behavior wasn’t a deliberate attempt to annoy her.

In some ways, it’s easier to think someone is being deliberately difficult rather than admit the truth – which is that they are most likely scared by the continual reminders that something is wrong with them.

It can often seem like your loved one is just being difficult when they don’t understand what you are saying, or refuse to do what you are asking them to.

Eventually, I realized that what is going on in my Dad’s head is very different from how I was perceiving reality.

Don’t Correct What They Say

So much of the early years of dealing with my Dad’s dementia was spent trying to get him to see reality.

“Did Billy enjoy his horse riding today?”

“No Dad, Billy works in an office, he hasn’t gone horse riding for thirty years.”

So many conversations went like this. All they prove is that my memory is better than my Dad’s, which we already knew!

Of course, corrections like this are not conversations, they are conversation finishers.

If you try to correct a dementia sufferer, to constantly point out why they are wrong, you will never win and you will always end up frustrated.

In my Dad’s head, Billy was twelve years old and he was asking after him, as any thoughtful person would.

So now whatever my Dad says, no matter how wrong it is, I always agree and let the conversation naturally keep going. After all, I’m so happy that I’m able to still talk to my Dad. So what if he gets a name wrong or is twenty years out of date with his facts?!

In fact, I’ve learned more about my family history in the last two years than ever in the past. Now my Dad thinks that events of fifty years ago are more recent and if I allow him to think that he talks about family events and relatives as if they still a phone call away.

Lately, as his dementia has progressed, my Dad gets confused between me and his brother. He often calls me by his brother’s name and asks me about my Uncle’s children as if they were mine.

But if I correct him, he gets even more confused and stressed and then goes quiet because inside he is panicking.

It’s much better when I just answer as if I am his brother and then move the subject on to something else. Sometimes he realizes that I’m his son and asks me something that does relate to me, other times he doesn’t and that’s fine too.

Dental Health Suffers

Of course, dementia is a disease that affects the mind so it was a surprise to find one of the first visible symptoms of my Dad having dementia was him losing some teeth.

Unfortunately, dementia sufferers often stop brushing their teeth quite early on, and it’s rare for nursing homes or carers to take care of their patients daily brushing, so naturally, their teeth suffer.

You Can Still Laugh and Humor is Important

When you’re dealing with something as serious as dementia it can be easy to think you can’t laugh at it. However, that is the quickest way to depression and anxiety.

If you go with the flow and don’t think of every challenge as a personal mountain to climb you will see the humor in many situations and so will the person with dementia.

There’s absolutely nothing wrong with laughing at any aspect of dementia. Obviously I don’t mean deliberately cruel humor at someone’s expense, but seeing the funny side in even the darkest subjects is normal and healthy for everyone involved.

Don’t Ask Questions

If I ask my Dad a simple question like what does he want to drink, I won’t get a straight answer. Worse than that, asking questions to a dementia sufferer makes them panic as they realize they can’t answer.

When you ask a dementia sufferer a seemingly simple question like ‘what do you want to drink’, what happens in their mind is that they aren’t able to recollect what are reasonable answers to that question. They may well know that this is a question they should be able to answer but then that in itself sets them into a panic for not understanding why they can’t answer a simple question.

The way to tackle asking questions to a dementia sufferer is to instead present a situation as a possibility. For example, I will simply say “I’m going to make us a coffee” and then my Dad will respond “That would be great, thanks son”.

Society is Prejudiced Against Old People

I thought I wasn’t prejudiced against any type of person, but as I go to experience my Grandmother’s and then my Dad’s decline I realized that I’d often been frustrated behind an old person holding up the queue counting their change at the grocery store. Or that old schoolboy joke of old people smelling of pee, unfortunately, we’ve all thought it.

The funny thing about so much prejudice against old people is that we are all destined to become old one day (if we’re lucky!). If only we realized that we’re only making our future selves suffer we could make life so much easier for a massive section of society.