Roger's story: 'Guilt eats away from the inside, whereas grief will slowly heal.'

By taking each letter of the word 'dementia', Roger describes some raw and honest emotions that have affected him and his wife, Thelly, who was diagnosed with Alzheimer's disease in 2014.

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.

Roger and Thelly Booth

Thelly and I at her care home, 9 November 2018

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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 which 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.

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Discussions about Guilt...

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.

We are here for you

As a carer for a person living with dementia, you may experience a range of difficult emotions. Looking after yourself – and learning to deal with challenges – means you will be in a better position to continue to care for the person affected.

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13 comments

Add your own

Roger..
So elegantly put..and so informative
You and Thelly are a wonderful team and she has been so blessed to have you on as captain.
Love you both, what a privilege it was to wall along side you both.

Your words mirror my every thought and feeling. Thank you.

I can identify with eveything that you have said, although it is my mother that has Alzheimers. I did my best, with the help of my sister, to care for her in her own home, but in the end she had to go into a home, although it took a lot of persuasion from a dementia nurse to realise it was the right thing to do for her. It took time for her to settle into the home, but she is happy & well cared for & although I still feel guilty I know it is what's best for her. It is such a cruel disease for everyone involved

As a care worker and now a good friend, I have been very involved in Roger and Thelly’s journey. They are both such lovely people who were looking forward to spending their retirement together. Roger has done a remarkable job and looked after Thelly single handed for many years. He made a tough decision to finally let someone else take on a lot of the responsibilities but it has enabled both him and Thelly to gain back some quality time together. She is in the best place for her needs and seems very happy there.

Seek out the help that is available. As Roger says, it’s not always offered on a plate but there is a lot of support around, you just have to find it. Keep up the good work Roger.

I can identify with all these feelings. Both my mother and husband died from dementia. I nursed my mum to the end whilst concurrently my husband was deteriorating.
I still feel terrible about their deaths, my hubby had to go to a care home with a 1-2-1 as he was violent and extremely difficult to care from with brittle diabetes epilepsy vascular dementia and Alzheimer’s among other things. Although both are dead now I still am in the nightmare. Not sure if you ever can “get over this” only learn to live with it.

Your story wonderfully told. So many things you spoke of are exactly like I went through with my husband. He lost (we) his battle with Alzheimers 10 months ago. I’ve had my share of sadness and depression....even tho he wasn’t really ‘with me’ towards the last, I am still lonesome for him.
I wish you patience during this sad time, and thinking of you.

My feelings exactly still feeling guilty about putting mum in care, very emotional about the long goodbye. Your story is my life very elegantly written

I totally understand every emotion my husband was diagnosed in 2012. The feeling of being alone is always present. I have two wonderful children but it's hard for them watching there dad changing. As a parent you don't tell them how you feel as you don't want to put to much on them. When people ask how you are I always say I'm ok . Although deep inside the sorrow and despair you feel for your partner and yourself for the life you've both lost is sometimes unbearable. But I put on a smiley face to make life as normal as possible for as long as possible.

Roger, I can totally empathise with your every word and hope you know how much those words bring help and indeed relief to others. Help in understanding all those feelings and emotions and relief to know that we are not alone (I used to beat myself up over my own guilt, frustrations and anger). From the MCI 8 years ago and my husband's final assessment/Alzheimer's diagnosis , we have travelled, and are still travelling, the same long devastating road. Acceptance has slowly arrived but has been so hard. Thank you again. Bless you and take care.

Hi Roger, we met earlier last year, my father was Alistair. Dad sadly passed away at the beginning of February from vascular dementia. It was all very quick at the end for him and he deteriorated rapidly. I recall singing carols with him only at Christmas!

Although I was not Dads carer, I can identify with much of what you wrote. Especially the grief and sadness that you feel when the person you know, loved is diminishing.

Also ... frustration. Frustration that you cannot beat this disease, that there is nothing you can do to give them back what has been lost.

Best wishes to you and Thelly xx

Hi Roger, we met earlier last year, my father was Alistair. Dad sadly passed away at the beginning of February from vascular dementia. It was all very quick at the end for him and he deteriorated rapidly.only singing carols at Christmas!

This is so good Roger - really resonates with me on many levels. Looking after my mum for so many years with Dementia and then recognising that i needed to place her in a care home was the most heartbreaking thing i have ever done. She is well cared for now and i visit her all the time, but miss my old mum dreadfully and still feel guilty that I could not keep her with me

Exactly. That., no one wants to know,
Tottally exhausting fortunately I have 4 children & they help a lot
You have to be in it to know about it
Because they have there. Own way depending on how they worked when younger. My husband was a surveyor so he is always carrying tools with him

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