Anna's story: 'I mostly feel very alone in this journey as I carry constant worries'

Caring for a dad with dementia, as told by Anna Murtough, daughter and carer to Jim Quinlan, who has Alzheimer's disease.

Anna, carer of her father with Alzheimer's disease​

Receiving the diagnosis

My 84-year-old dad was diagnosed with Alzheimer’s disease in February 2012 and it’s had such a huge impact on my mother and me. Dementia doesn’t just affect the person living with the condition – it affects every person close to them. Gradually, my life has changed completely.

For five years I helped my mother care for my dad, and for the last 2-3 years of those the role was a full time one - I gave up my career. My mum has heart failure and so tires very quickly and needed my support. Dad had always cared for Mum during 52 years marriage - now it was our turn to care for him.

In August 2016 dad was rushed to hospital after contracting sepsis and pneumonia. He survived the serious illness but, after many weeks in hospital, was frail, weak and more confused. I had to make the heart-breaking decision that it was time to place dad in a care home, given the fact that he needed 24 hour care, became doubly incontinent, all as my mother’s health was deteriorating.

Dad now lives in a dementia unit of a good care home. His place there is completely funded out of his own pocket and I was lucky to be able to choose the best one for him – the one where his dear elder sister also lives.  If he couldn’t be with his wife, at least have a companion in his sister.

Caring for my dad

Anna, carer of her father with Alzheimer's disease​

Unless you have been personally impacted by it, I find people don’t fully understand what it’s like to love and care for someone living with dementia.

Despite having a lovely husband and good friends, I mostly feel very alone in this journey as I carry the constant worries, heartache, the sense that he is gone even though he is still here. Watching my dad’s Alzheimer’s progress is devastating. It is like bereaving for someone who is still alive. These feelings often make me feel quite isolated and alone.

Something that I have gained a lot of strength from is hearing about others who are in a similar situation, through private social media groups where other carers like me can vent their thoughts, share their stories, seek advice and pass encouragement.  It is a huge source of comfort for me to know there are other people around the UK experiencing all the feelings and challenges that I do daily. Also websites like Alzheimer’s Society has been a great place for research or to seek advice.

I now gain comfort from my near daily visits to my Dad. I offer him plenty of love, support, hugs and reassurance; I hold his hand and let him know he is not alone and certainly has not been abandoned.

Just because someone’s brain is dying slowly, does not mean they do not have feelings, emotions.  They need our love and attention now more than ever, just as a young child does.  Life goes full circle.

I wish more people in society would recognise that our elders need as much care and love as do our youngsters; especially when they are blighted with the devastating brain disease that is dementia.

Unite against dementia

There are almost 700,000 unpaid carers for people with dementia, who are shouldering two-thirds of the cost of dementia themselves at a shocking ÂŁ17.3 billion. This needs to end.

We're urging everyone to come together and unite against dementia. Help us fix dementia care.

If you need support and advice as someone caring for a person with dementia, you can call our National Dementia Helpline on 0300 222 11 22.

National Dementia Helpline
Our helpline advisers are here for you.
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My sincere and heartfelt connection with you and your story Anna. Thanks for sharing. As the cliché goes - ' a problem shared is a problem halved' at least half way there. So - a feeling shared/ a thought shared, is halved and there is a sense that others in similar situations will and can, listen and understand where you are coming from. I have been a carer since 2000, and felt very, very, alone, like you, despite having a wonderful family, until. 2012. This is when I opened up to others and listened to others, in meetings, Alzheimers groups, Carers Groups,, on a weekly basis, and I found companionship, understanding and real friendships, which has alleviated this sense of 'aloneness'. I also learned to 'give' to myself and look after myself, for as carers we can lose a sense of 'me' and relationships with 'others' and it becomes ' me and the person I care for'. Sadly this relationship is often not reciprocal, at least it is not for me. So I have also engaged with research projects through Alzheimers Society.These have broadened my knowledge and also helped me in my caring role and loneliness. Whilst feeling alone is inevitable, I think, feeling less alone, is achievable. Take care of yourself. .

This blog resonated with me and actually made me ponder something very serious indeed.

Firstly, the resonance was from Anna Murtough’s words about watching her dad’s Alzheimer’s progress being devastating and like bereaving for someone who is still alive. This summed up my own feelings of loss and distress, particularly following a bad day for mum when she wanted to be left alone and refused all drinks. For the carer this is extremely worrying as you know the consequences of not drinking because you’ve seen it before – UTI followed by chest infections followed by pneumonia that takes twelve weeks to recover from and they’re never the same again.
This leads me to the second point that set me pondering and is a very emotive one but needs an outing and that is, did we as a family and the medical profession/NHS do mum any favours by treating her with numerous courses of antibiotics, a saline drip and nursing at home? The alternative would have been to let her go, to let nature take her natural course instead of interfering with her. These are strong words and morally debatable yet, 18 months down the line, I feel that I can debate them now whereas the life-saving treatment wasn’t debated then. We are programmed to save lives, to use whatever tools are at our disposal, yet the quality of our whole family’s lives have not been good for the past 18 months and I believe we simply delayed the inevitable. Mum is still alive, albeit frailer, more distressed, more demented, she's lost what little mobility and strength she had, she's less interested in food or drinks, more lost, more confused. In all, her Alzheimer’s Disease has progressed and our family have had to adjust to her changing needs as well as at the same time to continue to care for her at home and to continue with watching the devastation and bereaving every loss of brain function, awareness, lucid moments and personality traits that were once mum. It is truly devastating and something we live with every hour of every day. I am not angry. I am tense and stressed and worn out with the emotional roller-coaster. I long for the smile of recognition and mum’s “Hello duck”. I got one of these fleetingly during yesterday’s marathon caring session. I looked after mum from 9.30am-6.30pm, a nine-hour shift without a break. The only time I sat down was to eat my lunch and to encourage mum to eat hers. The rest of the time was taken up with domestic tasks, personal care, getting mum washed, dressed, out of bed, medicated, entertained, distracted from her distress and keeping an eye on the colour of her feet and hands, raising and lowering her chair to move her blood round whilst regularly trying to get her to drink or spooning a few millilitres of fluid so that she doesn’t get a UTI on top of the cough that she’s got. The main problem is that I have the insight of the consequences of her not taking fluids and constantly worry about it, meaning I’m always trying to rectify the situation whereas she doesn’t care or is oblivious to it all. It is draining.
After this mammoth session, I spent an hour on the phone with my sister who shares mum’s care with me, (plus a team of carers) I rang an applicant and arranged an interview for a vacancy we have, answered my phone messages and opened my mail. I didn’t get out for a walk that I desperately needed because I didn’t have the energy or the heart, just watered my plants and went to bed.
Yesterday was a bad day for mum. She couldn’t wake up in the morning and had half of her breakfast with her eyes closed, in bed. She objected to being washed and did not want to be got up by two carers and a hoist, but she has a cough and is better sitting up straight in order to clear her congested chest. Also she is more comfortable after using the commode. Evacuation is easier sitting on the commode than lying in bed. I am aware that every day I am pushing her to live because, left to her own devices, she would not eat or drink or be washed or get out of bed. So, why are we doing this and why don’t we just let her go? I don’t know. The same as I don’t know why we didn’t let her go 18 months ago when she was seriously ill the same as Anna’s dad. Maybe it’s because she still has life, she still has little windows of calm amidst her demented distress and rambling, incoherent words, she still has fleeting nanoseconds of recognising a smiling face and she still sings “It’s a Lovely Day Tomorrow”. I suppose that will have to be enough.

I read Lynne's article with much interest and resonance as well. Thanks for sharing. And if you don't mind my response - Your day, and your mum's day, is never done, and I am sure your account is but a glimpse of what goes on in a day, though there is much more. But I see in you a wonderful person for keeping mum alive, we really don't know what she wants, but I am sure that in her own way she realises and feels how much you love her, and that is important to hang on to. About the 'serious' thoughts, which I have had as well and I am sure is asked by most of us carers, I think you have the answered yourself, when you say... 'We are programmed to save lives, to use whatever tools are at our disposal', and for me if we think beyond that, it becomes more questionable and becomes an anguish I'd rather not have. But the lovely answer to why we do it is also because as you write, .... she still has fleeting nanoseconds of recognising a smiling face and she still sings “It’s a Lovely Day Tomorrow”. I suppose that will have to be enough'. Thanks again for your insights.

My husband has recently been diagnosed with early onset dementia in Alzheimers, he is 58 . The memory clinic report says he is in the bottom 0.01percentile for his peers. I have battled 3 years for a diagnosis and ESA , relying on my wage and MĂąm for financial support. It is lonely and I already feel as if my husband (because the bleed that caused this has affected all cognitive areas of his brain) is a different person. We receive no other support and have been turned down for PIP. This I presume is just the beginning. Although I wouldn't wish this on my worst enemy I am glad this is here to hear peoples stories.

I completely get it! Anna, I can totally empathise with you and your journey with your Dad. I am caring for my husband, who has vascular dementia. It IS a lonely time, the constant worry and anxiety never quieten - and even when the person you care for is in residential care, the sense of responsibility is not diminished - but other feelings occur too. Having to watch while your loved one shrinks before you is devastating despite what they say, local services do not adequately support carers.
My best wishes to you and your family...

Hi Anna - I too completely get it. The loneliness and despair felt caring for a loved one with Dementia is overwhelming at times, despite having amazing support from neighbours, friends and and family. We received no external support and were left to our own devices; to manage and care for her increasing needs. As an only one, I finally had to make the heartbreaking decision for Mum to be cared for in a home after a serious round of pneumonia, kidney infections and sepsis .... my husband and I found a fabulous place and they adored her. The guilt and sense of responsibility still remained though. Despite her illness, she retained her great sense of humor and most days, filled the home with much laughter. I work full time but visited every day I could & both days at the weekend and I learned to expect the unexpected - the hardest part is smiling and staying strong ( albeit sobbing once i reached my car ). I grieved for the Mum I was losing and cherished those moments when we still got glimpses of “ the Mum I knew “. Sadly we lost her quite suddenly in September, but we had the privilege of spending her final days with her in the privacy of her own room supported by amazing carers and nursing staff. It’s an awful illness to lose a loved one too ... stay strong ...

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