Guilt is everywhere for carers of people with dementia

Pat Sikes is an Alzheimer's Society researcher whose husband lives with dementia. She explains the power of speaking out instead of stewing in guilt.

Pat (left), posing with husband David, daughter Robyn and newborn Poppy Joan

In many families where someone develops dementia there can be quite a time lag – in some cases, years - between the onset of the condition and diagnosis. Behaviour which is out of character, particularly when it’s unpleasant, can be very hard to live with and to respond to.

If, for example, a person who was previously gentle and loving becomes distant, disruptive, aggressive or abusive, it’s natural to give like for like and be nasty back.

This can leave us feeling very guilty once we understand the cause.

Of course dementia also happens in families where relationships were not great to start with, but the guilt can still be there. Sometimes with knobs on.

    Feelings of guilt for carers

    A quick look at posts on the Talking Point forum shows how guilty many carers and relatives can feel.

    Guilt is everywhere.

    There is guilt about how we behaved towards them pre- and post- diagnosis; guilt about decisions taken – especially around deciding on residential care; guilt about educational and career choices which take people away; guilt about enjoying life events which the person with dementia isn’t aware of, and so on.

    Young people who took part in the Alzheimer’s Society funded project that Dr Mel Hall and I undertook – 'The problems and effects of children and young people who have a parent with dementia' - often spoke about their guilt and how bad it made them feel. I know about this on a personal level too.

    Pat's experience

    Pat Sikes

    The signs of Pat's husband's dementia first appeared 15 years ago

    My husband, David, has vascular dementia and posterior cortical atrophy. The signs began to show around 15 years ago when he was 55 and our kids were 13 and 15.

    Those 15 years have been rough – made rougher by David’s complete denial that anything was wrong.

    Add to that his avowal that we were all ******* idiots, his disengagement, physical aggression and—until he stopped communicating verbally—some extremely hurtful and vicious comments.

    For instance, when our daughter was in the middle of university applications he told her ‘they don’t take people like you at Cambridge’. (They did!)

    For the last 3 and a half years David has lived in care because we were unable to keep him safe at home. He is very limited in what he can do now but the guilt – for our retaliations, for our care choices, for our feelings - continues. As does the sadness that he hasn’t been able to share in graduations, weddings, the birth of his first grandchild.

    Sharing our stories

    I wrote this piece because once again a guilt wave (guilt tsunami more like) has overwhelmed me. This time it's down to a change in caring arrangements.

    I know that it's an unproductive feeling. I know that I can only continue to do the best that I can by David – and I know that I work very hard to do that best. I also know that others feel like me.

    Let’s not compound our feelings of guilt by keeping them as guilty secrets. Sharing our stories with people who know what it’s like is so important, helping us to move forward where stewing in guilt will not.

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    22 comments

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    My 68 year old husband has mixed Alzheimer's and vascular dementia, and is also a type 1 diabetic. It was diagnosed in December 2017, and we have received no follow up care since that date. He had what I can only describe as a 'psychotic episode' at 1am in a hotel in France, at the end of our skiing holiday. It resulted in him punching me in the face, in the belief that the building was collapsing and I was trying to prevent him escaping. The night porter called an ambulance, which arrived with paramedics, a doctor, three firemen and two policemen. We were brought home by our insurers, with a paramedic on hand just in case my husband became aggressive. He's now been in hospital in the UK for two weeks, while doctors try to decide on suitable care package. the diabetes adds an extra layer of dependency, because he can no longer do blood tests or administer his own insulin.
    Telling friends and family that I am too scared to bring him home has left me feeling desperately guilty. I know it is not he who hit me, but the fact remains that it could happen again as the delusions increase and I may not be so lucky as to escape with only a bloody nose.
    With each day that passes, I hope for a swift end to his suffering, which has robbed him of enjoying his longed for retirement, his family and friends.
    I knew, in theory, what to expect as this cruel disease progressed, but the stark realities proving far, far worse than I could ever have imagined.

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    Sara I feel so sad as I read your story. But you have used a word that is how I feel. I feel “ scared”. Really scared. Scared of so many things. Scared I won’t be up to it. Scared that own health will let me down. Scared that I can’t look after my mum (95) and my partner (83) with Alzheimers. Scared that I am selfish. Scared I will be alone. Scared he will become aggressive and so it goes on. Friends say take each day as it comes and I do try but in the middle of the night fear is my only companion. You have helped me to acknowledge this fear and so thank you for your own bravery in speaking out. Thank you. Hoping you can find some peace in the days to come. With love.

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    Hi Barbara, thanks for your comment.

    It sounds like you might benefit from talking with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or create an account to reply and connect with others - it's available 24/7: https://forum.alzheimers.org.uk/

    And please do call 0333 150 3456 to speak with one of our expert dementia advisers for support - they're available seven days a week. Opening hours for the Dementia Connect support line are here: https://www.alzheimers.org.uk/dementia-connect-support-line

    We hope this helps.

    Alzheimer's Society blog team

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    My lovely husband Michael has been in a care home since march 2018 he has vascular dementia we have been married for 64 years and I feel I have let him down not being able to look after him at home we have a lovely supportive family who help me as much as they can but this awful feeling of guilt will never leave me I try and see him every day and bring him home on Sundays but it never seems enough he has been asking me why can't he come home to live with me I feel so awful as I want him to come home but I know I won't be able to manage him the sadness I feel overtakes very thing and I feel I don't want to live but I know without my visits it would be unbearable for him how can I carry on.

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    So strange. I am Barbars snd my partner is Michael. He has Alzheimer’s. We are about 20 months into diagnosis and I read these stories with sadness and admiration. My Michael’s family are in Australia. No support at all from them well the odd email and text. Xxxx

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    Malonu skaityti!

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    My name is Chris in my mid 60,s and I think i have memory probs etc. I feel for you as Year’s ago my mother developed Alzheimer’s and had to into a home. The time leading to it was awful for us all to see her change each day I feel very sorry for you, but try to think your husband is probably unaware of how he is but we none of us know truly how it feels. Try to keep in your mind what he was like before and focus on that.

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    My husband has just recently been diagnosed with Alzheimer’s and Vascular Dementia too. Life at the moment is fairly normal ( or am I just getting used to his forgetfulness?) and to read other people’s experiences is helpful and sometimes not so.
    It makes me feel I am not alone in this experience , there is help out there, but it also it makes me dread what lies in store. One day at a time I tell myself and don’t look too far ahead.
    I hope I can be as brave and selfless as the people who have shared their story. Thank you.

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    Ntiebo, your story could be mine. We didn't realise for several years what was going on with our mum, putting her increased confusion down to her profound deafness, urine infections - anything other than the truth - probably because we didn't know how to fix it. I now know differently, through volunteering with the Alzheimer's Society. I've also come to realise that we really shouldn't beat ourselves up about this - even experts in the field get it wrong. Best wishes for the future.

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    I have been struggling since 2014 when my husband was diagnosed, although I knew something was wrong much earlier. He has Lewy Body dementia which is particularly cruel and has been in a home since June this year. I find I can only visit him every other day as I need that alternate day just to pull myself together. The guilt is ALWAYS with me, no matter what I do, but deep down I know I could not care for him at home. The support of family and friends has been invaluable, but you always come home now to an empty house. It's just awful.

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    How wonderful & brave of you all to speak out & tell the stories of there loved ones living with this dreadful illness! I myself have just started on this path, with my dearest husband who had been recently diagnosed with ( Alzheimer’s). This newsletter is vital & helps support you, & you know your not alone.

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    I can't help feeling like I could have done more. It took us a while to realize our could be having dementia. In the meantime we made many wrong decisions, many nasty comments about the way she behaved. By the time we knew about it and relating it to her, I think it was too late.

    Regards

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    Pat I feel you are talking about my guilt. My husband was diagnosed 2.5 years ago with young onset Alzheimer's. I told him then I would care for him as long as I could. On Friday I had to admit defeat and take him to full time care at the age of 67. My guilt is, as you say, a tsunami coupled with the grief and the knowledge that I can move on and he can't. He is 67 and like your husband thinks nothing is wrong with him, simply clinicians saying that to get one over on him. He hasn't known me for over a year and his delusions and paranoia grow daily. I came to a decision that if I had to listen to his many delusions I would rather do it for a few hours every other day than all day every day. I could no longer reassure him and make him feel safe and I have had no training in how to do this 24 hours a day. I would do anything to have my husband back but in truth it is probably seven years since I last spoke to him in a meaningful way. Could I have done more? Maybe. Should I have tried harder? I tell myself I should have but that's the guilt monster gnawing away at my emotions making me feel useless and selfish. I HATE DEMENTIA

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    Anne - we can only do what we can do and I have yet to find someone who hasn't gone beyond what others think is excessive. Be gentle on yourself. I know full well how hard it is but..... we should try.

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    yes many will question you, but one can only do so much, just bethere hold his hand. give him a drink .
    I have been through very tough emotional and full of guilt, but I was with him all the way till Monday when the good Lord took him home.

    Life is on full stop now I miss him and not being able to go.
    you will meet many in the same position and you become very aquainted each giving each other support. God Bless All

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    I was my wife's sole carer for 9yrs until last July (2017 ) and although she was a very gentle person throughout that time, I always thought I should do more. She died in hospital after a fall which was a relief as I was getting very tired, because of my own health issues.
    I do not feel guilty, but I completely understand others that do. What I would say is stop beating yourself up, your loved one would not want that to happen. None of us have training for looking after someone who has this terrible disease.

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    Pat - thank goodness for people like you who are honest about the realities of caring for someone with dementia. There are times when we are all less than perfect, when we feel hurt, angry, rejected and unable to cope. This is because we are human. Carers need to cut themselves some slack. Even the most dedicated family member cannot keep going 24 hours a day for years on end and at some point we have to admit we need help. The more of us that speak up the better. I write about my mum's dementia in my blog and it is quite a 'warts and all' approach - but it helps me to write it and I hope it helps those who read it feel little less alone.

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    my husband suffers with mixed alzheimers and dementia for the past 7 yrs has been in care 5 years, the only guilt I will never get over is I vowed on our wedding day in sickness and in health and have failed, I visit him every day for at least 6 hrs. Now he has come to the final stage where I sit for hourse by his bedside, he is very ill. I am dreading the day of seperation. May God give strength He has given me to all families throughout the world to carry on .

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    Hi Gwen,
    please be gentle on yourself. We all do what we feel we need to do but sometimes it doesn't help us.
    I don't know what I'd do without my faith either.
    Pat

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    I know exactly how you feel, we both vowed that we would look after each other as we said in our marriage vows 56 years ago. It broke my heart when I could no longer look after my Dot and had to pass her over to the care home. I still cry myself to sleep every night asking for Dots forgiveness. Our home is not a home anymore just somewhere to eat and sleep. Xx

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    You are brave! Please take good care of yourself.

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    my visiting time came to an end last week when my dear husband went to his long awaited home heaven. Iam utterly lost now, very lonely although he had become a cabbage he was there with his lovely smile..

    Carry on while you can

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