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

Our dementia advisers are here for you.

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 in our online community, Talking Point...
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.

Advice for carers Contact Helpline
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I came across this in the midst of a deeply sad day..no idea why, it’s just another (lonely) Sunday afternoon, but I feel close to tears today. My husband was diagnosed with vascular dementia in December 2018, aged 68. He is now in permanent care, after a long and exhausting fight for CHC. As Roger observes, the lack of professional help is jaw dropping, and the CHC process is carried out by people with no knowledge of the diseases they’re assessing. It only adds to the exhaustion and stress, fighting to protect our home and income in the face of form fillers whose brief seems to be to deny funded care wherever possible. I won and he is now in a wonderful home, but the emptiness and Isolation can be overwhelming. I feel a bit better now, so will get out and do something positive: water the garden and talk to the plants..moving on...

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Just helped me a lot tonight!

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Your honest straightforward open account is so incredibly helpful especially all the complex range of feelings and behaviour iss it impacts upon you as a carer and thebprofound sense of loss and how you bore this and the feelings of anger and how to accept this and keep going . A beautiful noble husband carer friend ! Thank you!

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I just feel anger and resentment that I cannot just take a pill and go to sleep before the appalling helplessness and distress I know awaits me takes over. I am 83, I have lived happily alone, in my lovely, solitary home and garden for the past forty odd years and I don't want to be warehoused, along with other drooling, immobile lumps of flesh. my son's inheritance being gobbled up by fees and doctors' bills. I'm not depressed or lonely. I can still read and watch tv., play computer games and chat on the phone with my two remaining friends. So I want to quietly cash out, now, before it's too late. Why can't I?

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Hi Sonia,

I'm really sorry to hear you're feeling this way. Please know that you can call our helpline at any time for information, advice or emotional support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

There is a slowly growing interest in reforming the law, but at present both euthanasia and assisted suicide are illegal under English law. Just for clarification:

Euthanasia is the act of deliberately ending a person's life to relieve suffering. For example, it could be considered euthanasia if a doctor deliberately gave a patient with a terminal illness drugs they do not otherwise need for their comfort, such as an overdose of sedatives or muscle relaxant, with the sole aim of ending their life.

Assisted suicide is the act of deliberately assisting or encouraging another person to kill themselves. If a relative of a person with a terminal illness obtained strong sedatives, knowing that the person intended to use the sedatives to kill themselves, they may be considered to be assisting suicide.

People do have strong feelings about reforms or otherwise, and express them as you have done. It's good that you can find happiness in the small things in life as you have mentioned, and these are to be cherished. There remains the hope that before too long there may well be a way of preventing or curing dementia.

Do call our helpline if you would like to talk over your feelings with one of us: 0300 222 1122.
--
Alzheimer's Society helpline team

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So well expressed Roger. My husband was diagnosed in 2010 at the age of 60. We managed a few adventures in the first couple of years post diagnosis but almost 10 years down the line he is totally dependent for every aspect of day to day life and has been doubly incontinent for the past two and a half years. I have a total of just 16 hours a week of care from outside - 2 days a week at day centre and a few hours a week at home. That means 152 hours a week 'on duty'. Living with grief and loss is heart-breaking and exhausting. Well meaning people say 'look after yourself' but they don't say how.

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It is 6 years and 4 months since my wife died. She had Alzheimer's.
Reading Roger's story brought back many memories and filled my eyes. I ended up in Hospital, after some4 years of caring at home and my wife had to go into respite care. My time in dock ,about 4 days, gave me the opportunity to think and my head won over my heart. Trixie was happy in the care home and well looked after.

I used to tell friends that he girl who married me was dead ,but my dear wife was alive. I now say that the wound has healed but the scar will stay foe always

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Rogers story is so like mine. I care for my 95 year old Mum who has Vascular Dementia. I think the time is coming when a care home would be the best next step for all but the feeling of guilt, even thinking about it, is so hard. My husband had a heart attack a couple of years ago, and although he is well now, i feel torn between them both as they dont get on very well. ( My Mother thinks she can be as rude as she likes to him and it's ok ) . Hygiene has also become a major problem as she barely washes, and refuses point blank if i suggest that a bath would be nice ! She then shouts at me which upsets me which upsets my Husband. I could go on and on but it wouldn't help. Thank you to all who posted here, it helps to read that I'm not the only one.

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My heart goes out to you and Thelly and your photo brought tears to my eyes. Everything you wrote is so true. You have said it at all. My wife was diagnosed with Alzheimers in 2012 and she passed away September 2018. She went through every stage of the disease and there is so much that happens every day that it's difficult to cope . I was 67 years old and was fortunate to care for her at home. This is the most difficult thing I have done in my life. I never wanted to place her in home care and I achieved this but it was not easy. I was fortunate to do this and proud to have kept her home. Not much people are this lucky but I thank god for what he gave me to do the job. Keep up the spirits for you and Thelly and prayers will get you all through. I am now going through the healing, loneliness and emptiness but the road is long after 50 years of togetherness.

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Like your other correspondents I go from feeling sorry for my husband to feeling resentful for what has happened to us.After years of depending on him for all the little and bigger jobs in the house I find myself taking over all the duties he used to do.I still do all the jobs I used to undertake and have to watch him sitting there wanting my attention when I am struggling to keep everything ‘normal’ I cannot ignore him as he demands answers and keeps on and on with the same questions.On a couple of occasions He hasn’t recognised me as his wife,which is very disturbing.On the brighter side my family are very supportive

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Thank you to every one that has shared there feelings. I can relate to a lot that has been said. The saddest part is to see your loved one slipping away and having to make piece with reality and fear that is some times overwhelming. I also relate to a lot of what has been shared by every one. I also experience anger. And loneliness. I can only cope with one day at a time. Sadly there is no cure. And heart braking to see the deterioration as time goes.

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Thank you for putting into words the whole mix of emotions I've felt as I've cared for my mum and dad (who both have Alzheimer's. You've helped me feel normal.

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I have an elderly mother with vascular dementia who has now been placed in care. I have read this and can only concur that the emotions the Guilt the tiredness and the anger seem to be replicated with everybody. It's good to know that this isn't the person that you love anymore and dealing with the grief of losing my mother is all consuming but it's nice to know that there's people out there that can help

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My husband has Alzheimer's and sleeps all the time. He is quite poorly. as he has a urine infection he is not eating or drinking hardly anything at all it is very distressing seeing him like this. He is in a lovely care home & they look after him well but I go to see him every day because I love him so much.

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Very relatable. My overwhelming emotion at the moment is anger. Everyone tells me that my ‘real’ Mum is buried somewhere inside herself and that my love will reach her. I feel like I am caring for a bad-tempered, difficult and ungrateful stranger who doesn't give a fig for how I feel about her. Angry with the disease, angry with the stranger... but most of all angry with myself for being angry.

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Debs, what you have said is exactly what I feel too. My mum has gone and in her place is this irritating difficult child -like old woman who doesn’t know where she is or what she’s supposed to do- and tells me so a hundred times a day! And she is slowly slowly getting more and more difficult! Apparently there are 850,000 people with dementia in the uk, so there are a lot of us out there all doing our best and feeling tired, angry, hopeless and totally unappreciated! Hope this makes you feel you are not alone x

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Its christmas all i wanted to do was see my lovely dad. I have cared and loved him all of my life the last five years with this stranger called Alzheimers.he is now in care and the guilt consumes me.christmas day he told me i never loved him yesterday or any other day.i havent stopped crying since. I go twice a week now as i cant bare it!!. I just want my dad back. Im guilty i feel i have abandoned him. I work in a hospital to with shifts. Im going tommorow i hope and pray hes not aggressive. I hate this disease to

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Thank you Roger for your description of the rollercoaster of emotions shared by carers. It has helped me to read them summarised in this way as they are mostly one big jumble in my head as hubby and I ride the rollercoaster together.

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