Real stories

Common emotions experienced by people affected by dementia

My wife Thelly started to show signs of mild cognitive impairment over 10 years ago.

This was confirmed in Spring 2011 following an assessment at the Older Person’s Mental Unit in Basingstoke.

In Autumn 2013, Thelly asked me to arrange another appointment with our GP, as she was getting more and more concerned about her difficulty with her vocabulary.

The GP said it was difficult to tell whether or not Thelly's problem was just the natural ageing process, but she was only 68.

In Spring 2014, I had persuaded the GP to send Thelly to see a private consultant who had been recommended to me. He formally diagnosed Alzheimer's disease.

Taking each letter of the word 'dementia', here's some emotions we experienced before, during and after Thelly's dementia diagnosis.

D is for...

Despair

I will never forget the despair that hit me during the 2011 assessment when I realised that Thelly couldn’t draw a clock face with the time at ten past ten.

What was even worse was her despair when we left. Thelly was absolutely distraught for the rest of the day and made me promise never to take her to see that 'horrid man' again.

Sadly, despair has returned to both of us many times over the years.

Disbelief

Disbelief is also an emotion that has hit me many times. The frequent thought that everything will be alright and Thelly will get better. I knew full well that this horrible disease can’t be reversed and will only get worse.

Similar thoughts of disbelief are: ‘Why us? What have we done to deserve this?’

Depression

This feeling of disbelief often leads to another very negative emotion: depression.

There is little I can say about depression. Fortunately for me, the periods of depression have not been particularly serious or long-lasting. But I know it has been - and still is - a very serious problem for many carers.

E is for...

Exhaustion

My guess is all carers are feeling the effects of exhaustion.

Exhaustion is brought on by the seemingly unending repetition of the same question.  It's from the sheer hard work needed to ensure your loved one is safe, well-fed and their personal hygiene needs are met.

The exhaustion can so often lead to a feeling of being completely drained and empty, even to the extent of wondering how you can keep going!

Empathy

A very important, positive emotion is empathy; an emotion that I have felt as a receiver from many people who are or have been in the same situation as a carer.

Now I believe that I can show empathy to other carers but also to Thelly and other residents at her care home. The reaction of the receiver is normally a smile.

M is for...

Melancholy

I could only think of negative emotions starting with the letter 'M'.

There's the feeling of melancholy, which includes the deep sadness I feel when shared memories became only my memories.

I guess melancholy can be a precursor to depression. Now I try to shake off the feelings of melancholy as soon as I realise they have crept up on me.

E is for...

Emotion vs. intellect

There has been a battle between the emotional and intellectual sides of my mind.

When Thelly went in to care last May, my engineer’s intellect told me that I had done all I possibly could to care for her. It told me that I no longer had the skills needed to look after her properly at home and that she was in a safe place where her needs could be met by professional carers.

However, the emotional side of my brain just wouldn’t accept the logic.

I would lie awake for hours in tears wondering what I should do.

I decided I needed professional help and started to see a counsellor, initially for an hour a week.

After a few hours of talking, I suddenly concluded that the emotion that I thought was guilt was actually grief and sadness. I was grieving for my loss of the Thelly of 10 to 25 years ago, as well as Thelly’s loss of self.

Guilt is a highly negative emotion that eats away from the inside, whereas grief will heal slowly with time.

This realisation and acceptance is helping me to come to terms with where Thelly and I now find ourselves.

N is for...

Nervous

I suspect every carer and everyone with a diagnosis of dementia have frequently felt nervous.

I know there have been many times when I have felt incredibly nervous about what the future will bring. I know Thelly has frequent moments when she is nervous and frightened. I am just sorry that I find it hard to reassure her, apart from giving her a big hug!

T is for...

Tired, tense and tearful

Often, for me, these emotions followed each other. They don’t need any further comment.

I is for...

Incapable

One feeling beginning with 'I' is 'incapable'; not knowing what Thelly needed me to do for her.

Personal care was one of the main areas. It started by me going to the bathroom with her in the morning and at bedtime, putting toothpaste on her toothbrush and just being with her to make sure she used it and had a wash.

But it progressed through having to learn how to apply her foundation, eye make-up and lipstick, helping her to get dressed.

In the last few months at home before going to a care home, it was not knowing how to persuade her to get undressed at night or to have a bath.

Isolated

The feeling of isolation is another very negative emotion.

I have had terrific support over the last few years, including from my sons and their wives and the friends who have stood by us and helped. 

But all this support wasn’t enough to stop periods of feeling completely isolated and alone.

Ignored

Some close friends of the past seemed to vaporise and left me feeling ignored.

I suspect it is because they didn’t know how to react to Thelly as her conversation and behaviour changed.

A is for...

Anger

There were many times when I would get angry with Thelly, because she wouldn’t (but actually couldn’t) understand what I was telling or asking her to do.

The best advice I ever had to cope with this anger was at one of my first monthly carers' meetings:

'There will be times when you will lose it; we are all human. Try to count up to 10 and tell yourself: ‘It’s not Thelly, it’s the bloody disease'.'

One cause of my anger was the almost total lack of support we received from the health and care professionals.

I thought we'd be given a wide range of support and help following the formal diagnosis. No way!

All the help with topics such as Attendance Allowance; what to do about driving; what to expect as the disease progressed all came from the voluntary sector.  

It wasn’t until Thelly was taken to hospital on Easter Sunday last year with pneumonia that I found out just how good the NHS and Social Services can be in caring for patients with dementia.

Aggression

As the disease progressed, Thelly became more aggressive, particularly if asked to do something that she didn’t want to do or be told not to do something.

I found it very hard not to be aggressive back. I later learnt that is the worst possible reaction as it would only make her even more aggressive!

The only solution I found which worked most times was to apologise, give her a big hug and try to find a diversion, such as ‘Would you like a cup of tea?’

Afraid

Feeling afraid must happen to everyone associated with dementia.

I have been afraid about the future many times. I've also felt afraid that Thelly would have a bad accident or get violent and hurt someone.

I know that Thelly has also been afraid many times since she first realised that something wasn’t quite right. There have been days when Thelly would start crying and it could last for one, two or even three hours. I suspect this was because she was feeling afraid.

Affection

I would like to finish with two positive emotions.

The feeling of being affectionate is a very positive emotion, which is linked to love. It has helped both Thelly and I over these dark years.

Acceptance

The last emotion or feeling that I want to mention is acceptance.

Dementia is an awful group of diseases, but in time, carers can hopefully find some degree of acceptance and peace of mind.