Dealing with dementia

Firstly, how would you define dementia, Angela?

Dementia is an expression that covers the symptoms associated with a chronic illness in the brain. Dementia is not the illness. It is just a description of a condition.

And there are several illnesses that cause those symptoms?

As far as I know there are 86 classifications of people with different accumulations of symptoms that are then lumped together under various names. The most common one is Alzheimer’s, but there’s also Vascular Dementia, which is the result of multi-strokes, and people can develop Lewy Body disease, which is the dementia my husband had. When he started off, they thought he had Parkinson’s, as the symptoms are like Parkinson’s. Then, there’s Alcoholic Dementia, etc.

What are the warning signs of dementia?

The common one is short-term memory loss: loss of words, loss of names, loss of how to express yourself. That is the one that alerts people to the fact that the brain isn’t coping as well as it used to. From there, it develops into all sorts of symptoms that grow on the person, and no two people have the same combination. There’s incontinence, aggression, wandering, repetition and all sorts of things.

Sounds like getting a diagnosis could be complicated. And yet, a clear diagnosis must be important?

I don’t know that having a clear diagnosis is that important. It doesn’t matter what name they give you, what you are going to have to do is cope with the symptoms. The medical profession don’t like telling you that you have dementia because dementia has a stigma.

I’m on a crusade to get rid of the stigma, because when my husband was diagnosed, his first action was to join the Alzheimer’s society. He said, ‘look, let’s tell our friends and family. It’s going to be so difficult to hide this. Let’s tell everyone.’ And I was so lucky because that took the pressure off.

What’s it like for the person with dementia? What are they experiencing?

They are feeling terribly uneasy, as they know something is going wrong with them that they have no control over. They have a fair idea of what’s ahead of them, and that they’re losing their marbles. They’re scared because they know what’s going on. I tell lots of people that the person with dementia is still inside and they hate what’s happening. They know they’re losing their old life and that people are treating them differently.

And what are common feelings for those with a loved one who’s suffering dementia?

I often emphasise that sometimes you are looking after someone who is not a ‘loved one’. Lots of people find themselves looking after parents and they may not get along with them at all, so I avoid the expression ‘the loved one’. I also say, you don’t have to like someone to treat them with love, which means being patient, kind and respecting them, and doing what you can for them.

Anyway, what is it like? I for one felt cheated. We were going to travel together, play tennis together, have a life together, and I realised that wasn’t going to be possible. I realised that my husband was going to change and I couldn’t do a darn thing about it. I sensed that I was just going to have to go along with whatever he produced and cope. I’ve spoken to others who can’t bear those changes. They want their partner to still be the tidy, neat, respectable, wonderful person they used to be, and they’re always wiping their clothes and changing them and saying ‘sit up’, ‘don’t do that’, and ‘don’t make a mess with your food’. That’s totally wrong, you shouldn’t do it.

So, I did all my grieving before my husband died, and I remember driving around with tears falling down my face. By the time he died, I’d done all my grieving. Of course there is a sort of grief when they die, but there’s also relief. And it’s a relief for them, too.

What support is available for carers?

There’s lots of support. First of all I got support from my family. But, I thought, I can do this, I’m strong, I can manage. So, I went on managing on my own until the Parkinson’s field officer said, ‘Angela, you would feel great relief if you joined a support group’. I was almost too proud, but I went along, and then I couldn’t wait for the month to go by when I could see them all again, because they were talking about all the things I was going through. We were all in the same boat, and I say to any carer: find a support group. Get a tight little group of people who are all in the same boat. Just meet and share what’s going on. It is so valuable.

As well as that, one of the members of my group told me that there was more help available if my husband was assessed by our hospital. Suddenly I found myself eligible to have someone come in for 2 hours twice a week, so that I could have some respite. Then, they reassessed Brian and they gave me 4 hours twice a week. Eventually we became eligible for respite care, which meant that they would provide accommodation for him away from home every 8 weeks so I could recuperate.

There are many ways in which a carer can help someone with dementia that you cover in your book, but are there any you’d like to share here?

I’ve got a mnemonic: LPQRST.

‘L’ stands for Laughter. Keep your caring light-hearted and have lots of laughter around the place.

‘P’ is Patience, and that’s self-explanatory.

‘Q’ stands for Questions - avoid them like the plague. You have to get around this by making statements and seeing their response. They’ll soon let you know.

‘R’ is one of the most important – live in their Reality. For instance, there was the carer who was sitting with her mother in the doctor’s waiting room, when her mother started fretting whether she had her passport and tickets, and whether their luggage had been checked-in. The daughter realised her mother thought they were sitting in an airport, and went along with it, saying, ‘yes, I’ve got the tickets and passports’. She was in her mother’s reality. One day, my husband said ‘there are Indian girls doing somersaults in the garden! Come and have a look’. When I looked, I saw four blackbirds.

‘S’ is for Stimulation. It’s physical, mental and social stimulation. That’s walking, swimming, and one of the best is dancing. People with dementia dearly love dancing. Try to do something that will keep their minds alert, and social stimulation is through keeping them in touch with people. Take them out to the local café, and let them have a meal in company. It will make them feel as though they are part of the world.

‘T’ is Touch. People with dementia, especially as they reach the last stages of dementia when you cannot reach them otherwise, love touch. They can feel humanity in your touch. So, hold or stroke their hand, put your arm around their shoulder. Although some people with dementia hate to be touched and they’ll biff you! So you have to know the person you’re caring for, of course!

Do you have any further advice for people dealing with dementia?

The only other thing I would say is, when you begin to detect signs of dementia, make sure that your finances are in order. The person with dementia needs an Enduring Power of Attorney because, if you haven’t got that, you’re in deep trouble. Also, make sure that your housing is secure. That aspect is very worrying, especially if the person with dementia is the one bringing money into the household.

For more information, please visit the Alzheimer’s New Zealand website - http://www.alzheimers.org.nz/awareness

Dealing Daily with Dementia: 2000+ Practical Hints and Strategies for Carers by Angela Caughey is published by Calico Publishing Ltd, Auckland, 2013.