Cath's story (part two): 'The worst part of dementia is the guilt'

Many people who care for someone with dementia can feel worried or guilty. Cath, whose mum has Alzheimer’s disease, describes her feelings of guilt.

Read part one of Cath's story for more on how her mum's dementia diagnosis has affected the family.

Cathy's and her mum, who has Alzheimer's disease

Mum's diagnosis finds me in a strange place, a kind of parallel world to that of many of my friends.

Whilst they’re announcing pregnancies, talking toddler-taming and toilet habits, worrying about playground bugs and picking out primary schools, I’m trying to fathom the strange habits and behaviours my mum is developing. I'm ordering incontinence products and waterproof sheets, worrying about mum’s swallowing and hydration and considering care packages.

Some days it really does feel like I’m living in a different universe. And whilst I love hearing about all the joy that my friends' children bring sometimes, just sometimes, it leaves me feeling a bit sore.

Alzheimer’s disease loves to be unpredictable

Having been hyper-aware of Alzheimer’s for so long, I've read everything I could to understand it, to predict what would come next, plan for the future and be able to help mum and dad. But it doesn’t work that way. It turns out Alzheimer’s loves to be unpredictable – like the gremlin I see it as.

I’d never factored in mum's broken hip and how a hospital stay would speed up symptoms so much, and I’d certainly never considered that she would need care in a home so soon – even for just respite. And yet, a few weeks ago, with no small amount of deception, my dad and brother took her ‘out for lunch’ to the home, and then just left.

I’m not sure either of them will ever get over the guilt.

I say ‘just left’, that would imply that such an act was a doddle, when in reality I’m not sure either of them will ever get over the guilt. Nor will I get over the fact that I wasn’t there to help.

Mum’s respite period is coming to an end, and we’re now faced with what to do next.

So, this week has seen social care assessments, a surreal process where far too much time is spent considering mental capacities, how compliant she is and intimate details of mum’s health that a few years ago she’d have been mortified to have even heard mentioned.

I can’t begin to explain how disloyal it all felt. And whilst I know it’s for the best, that we’re only trying to do what’s right for mum, it’s just more guilt piled on top of the enormous pile that the Alzheimer’s gremlins have already doled out.

The worst part of dementia

I’d always thought that the worst part of dementia would be when Mum would no longer know who I was. Although that hasn’t happened yet, and I’m already dreading it, I think the guilt is even worse.

Guilt that you don’t visit enough, that you can’t make any of it better, that when you visit you always have to leave, that you’re letting others do the ‘caring’, that you haven’t moved closer to be able help every day, that you can go out and watch a film, have a pub meal or see friends whilst they can’t…the list really is endless.

And then there’s the fear, sometimes just nagging, other times near paralyzing, that it’s all going to happen to you. Because when your nan, mum and two uncles all have it you realise that the odds might not be stacked in your favour.

And despite having studied the genetics of it all, and knowing that it’s not always down to DNA, you’d have to be a fool not to have considered that it’s a possibility, if not a probability: especially when you look in a mirror and see both your nan and mum staring back at you in the roundedness of your cheeks, the upturn of your nose and the cheekiness of your smile.

And then to top it all off guilt rears its ugly head again – how can you be thinking of yourself when you should be thinking of your mum: how selfish of you. Because Alzheimer’s really is the ‘gift’ that keeps on giving.

My Mum is special

I realise that my family’s story is nothing special. We’re just one of many going through this right now, and that with an aging population, they’ll soon be even more of us. But my mum is special, and I don’t want to lose her. And my dad’s special, and I don’t want him to have to watch his wife of over 50 years disappear before his eyes. And my brother’s special, and I don’t want him to lose his mum piece by piece.

Frankly I want that Hollywood happy ending, where my beautiful mum and dad drive off into the sunset as the screen cuts to those immortal words

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27 comments

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that story is just like my own and you put it into a nutshell the GUILT it's there all the time!!!
Thanks for sharing.

I have the same guilt it's taking over my life my mum has vascular Demtia we are 2years in and it breaks my heart to watch her slowly dissapear from me . We was always so close I feel I shouldn't be going home I hate leaving her .my dad is so good at 87 he is a full time carer and said in sickness and health he won't have help from no one but me. It's very hard to do a full time job and hold all this guilt in side I just want to be with them all the time .

Warm, heart wrenching and so real. Thanks for sharing Cath. Your self awareness and much love you have for all around you will definitely get you through anything.

Dear Cath,
God Bless you and your family
I understand your feelings of guilt but it's useless to feel that way.
I've recently lost my wife of 59 years due to Dementia and my heart goes out to you and your family. What really matters is that the professional carers don't let your mother suffer any longer than necessary, especially at the end of life. Unfortunately this end of life care was badly screwed up by the National Health Service in my my lovely wife's case and my advice would be to fight for end of life care to be in a comfortable hospital setting. The family home and all our savings were taken by the care home. My wife was transferred to hospital for two weeks towards the end of her life but sent to a new home 2 days before her death and my family had to pay EXTRA fees.
For those few days at a new nursing home where END OF LIFE DRUGS WERE NOT KEPT ON THE PREMISES.
and had to be administered by district nurses on an urgent call out to the new nursing home.
The government MUST sort out thes anomalies, End of life
Dementia care by the NHS is not acceptable in our so called free at source health care system. We must fight for change instead of feeling guilty.

Francis, I totally agree with what you're saying about the NHS ......it is unacceptable the way current policies are so very wrong for those with Alzheimer's ......... it does need changing , and urgently .

My late mum was denied CHC ( Continuing HealthCare ) . Upon her death we asked to see all paperwork, and discovered mum's CHC assessment had been done by a ''bank nurse,'' in an hospital annex , and she'd never even met mum .!! We argued our case against the thousands of pounds bill we'd been given ......and we won . Don't assume everything is being done ''by the book''.

Six months after my mum died my best friend was diagnosed with Young Onset Alzheimer's . That was in 2011, and now I'm her only Carer . She was a very successful Lawyer, now she can't even tell the time. She wants ''out'' , but wants to bow out with dignity at a time and place of her choosing.......... it's not going to happen though is it . The law needs changing to give people a CHOICE . It's just downright cruel to deny people a choice when there's no chance of getting better and facing a horrendous end of life .

Sandra, on behalf of your friend, you should contact "Dignity In Dying" and join their campaign for just that. Ring them on 0207 479 7733 or email them at [email protected].
I am a member, and strongly believe in the Choice you mention. Good luck. Lorraine

Francis, I do not understand why your family home was taken to pay for care fees. If you continued to live there, as a spouse you should not have had to sell up. Why not go to Citizens' Advice and speak to someone who knows? Also, see if you can get help to apply for Continuing Health Care funding....apparently, you can claim retrospectively. I have recently claimed for full funding after my darling husband passed away a year ago next week - I got it! If your wife needed nursing care you should not have had to pay. According to the National Health Service Act 1946 and the same Act for 2006, "in the UK, no matter how old you are, if you need health care or nursing care, you do not have to pay for it". This was preserved in the Health and Social Care Act 2012. Good luck. Lorraine

beautifully expressed Cathy. The story resonated with me because my husband iand I are at start of this journey. Diagnosis of Alzheimers in November last and of course the realisation that it had begun years before.

I hope he does not know what lies ahead.

My husband and I are on holiday and having problems with shadows making him fall luckily there were people around at the time to help pick him up. We now try to avoid shadow but this is difficult and a worry.

Thank you Cath for sharing , you have summed up exactly how I feel perfectly.
It is clear what a loving, caring and clever lady you are. You are doing your parents proud

Thank you for writing this Cath. It is exactly how I feel at the moment too. My best wishes to you and your family.

Thank you for doing this. My Dad has gone in to hospital from his care home today and it's only a matter of time before he passes away. Thankfully he never forgot who we were, something I'll always be grateful for. I became resentful of having to take Mum to see him every other week ( I alternated with my sister) and then felt immense guilt because of it.

Cath,

Every word echoes exactly how I feel right now, especially about friends and how we could be living in a parallel world on the same timeline as them.

Mum is just getting to the point where Dad and I need to consider someone coming in and it was me that booked the doctors appointment in the beginning because Dad denied it all. It is a horrible feeling that it is as though you are grieving twice for someone and I too feel the guilt of not visiting enough despite living 30 minutes away, having just gained a new job and looking at getting my first house.

I try to remember that Mum would never want me to feel guilty and I'm sure yours would be the same. You sound incredibly strong and it is always reassuring for me that there are others out there going through the same. I wish you all the best x

What a brave and generous person you are to share your story. I lost my Mum on Christmas day in 2015 with cancer taking her before the vascular dementia could do is worst. The guilt is with me nearly every day since her death, thinking there was more I could have done. My Mum would have told me "Don't be so daft"! It is always easier to tell others that they should not feel guilt and they can do no more for their loved one, but harder to believe that for ourselves. You are not alone and you are doing the best you can every day. You should not feel guilty but it is because you care so much for your Mother that it is there. Thank you for sharing your story which will help so many others, and best wishes to you and your family.

Hi Cathy,
Your story resonates with me so much, the guilt, the parallel universe, the broken hip, everything! My mum was diagnosed in 2009, but like you say, you all knew long before that but no one would've dared suggest mum see a doctor, especially having witnessed her own mother with the disease. My mum sadly passed away this May, and the guilt continues. Her care was excellent; we truly found a gem of a nursing home for her. But those 6 years of care took their toll on other family members health, mine included. The low level background nagging gremlin is always there. Birthdays, anniversaries, Mother's Day, Christmas, all supposed to be special, but they filled me with dread at the cards I wanted to buy but couldn't. None of the cards reflected my mum or our situation. I have walked out of many a card shop in tears because the words in greeting cards were meaningless to me. It broke my heart to buy a separate mum and dad card for them that first Christmas they were apart. Mum lived long enough to see their 60th wedding anniversary, and we proudly hung their message from the queen in her room. I miss her, but I'm glad she no longer suffers the indignity of Alzheimer's.
Like you, I wonder about my own future, but I also look at my dad and see he is amazing at 85.
Take care and much love to anyone who finds themselves living with, or looking after someone with this cruel and horrible disease.

Thank you cath for publishing your story,
While it's hard to say now what could you have done to help your mom, it's clear you and your family have tried everything they can to help. Your situation parallels mine, tho it's my grandma and it all started when she got hit by a car and then worsened with the strokes and falls she had. However, instead of considering a nursing home, my family takes care of her in our house, causing a lot of stress,tension, and hours devoted to watching her eat and drink, stressing how she doesn't want to and worrying if this is the end of the line for her. Personally I would rather remember her fondly as a caring grandma, not the cause of stress tension and fights that might break everyone.

thank so much for writing this. I try not to think too much about what is happening because when I do, the guilt sets in. Your feelings are so real that you could have been writing about my / my mums life.

I am doing a course to learn more about the illness as I know I only can do so much for mum but if I can help others then I may feel better.

Thank you Cathy for writing this and thank you to everyone who has replied. I am starting out on this journey with my mum and feeling guilty. While she in still totally independent and lives in her own flat in a warden based block, we are becoming more concerned about her. She forgets dates, times, names, events, stops talking in the middle of conversations because she has lost what she wants to say and most worrying was forgetting my surname when we were out last week, I've been married for nearly 40 years. I have managed to get her to agree to see the doctors, but she forgets the reason why and when reminded tells everyone it is because I think she has gone 'do-dally' and want to put her away. The guilt is awful, but if I don't try to get this sorted I worry about what may happen. Reading your blog and everyone comments has really helped - thank you.

I had to move back home when my Multiple Sclerosis got to the stage that I needed to use a wheelchair permanently & could no longer live independently, drive or work. My parents had just "downsized" to a bungerlow & now had to "upsize" it to accommodate me.
All the stress of this might have been the start of my Mum's diagnosis this year, I'll never know, but the guilt of this is with me everyday. I have Carers everyday & I think it makes her feel worse as she doesn't want to have them for herself as well. My Dad now lives in more like a "Cottage Hospital" than his home. They are both in their 80's & I'm 53. This is not what any of us had imagined life would be like.
We still have good times but also many "bad" stressful days, when life seems so cruel. I feel guilty that my Sister has to give up so much time to help the three of us, at the time when she should be looking forward to grandchildren.
I've gone on long enough now.....but somehow reading other people's stories does help. So thank you Cathy for sharing your story......& making me realise that my worries & fears are shared by so many others. This has really helped x

Thank you Cathy for sharing your story I hope you take comfort from a lot of these comments in that you are not alone feeling the way you do. I certainly feel the same. I am the oldest sibling living nearby and trying to juggle helping Mum with a job and 2 teenagers. The guilt never goes away. I take comfort from the fact that most of the time my Mum seems happy enough as if she has forgotten the diagnosis and it doesn't trouble her. I too dread the time when the illness progresses and we have to think about care for her but at the moment she is ok in her own house with my dad although it is taking its toll on him too. It's such a shame Keep strong it sounds like you are looking after her well xxx

I feel like I could have written this exact piece myself. I feel your pain and you have my full empathy and sympathy.

I realised that there was something wrong with my brain other than old age. So went to the doctor who arranged a scan. The result was clear to see - alzheimers - a black tangled mass at the back of my head.I will be 70 next birthday. The whole family are very supportive, especially my dear wife. I am making the best of it and the family are wonderful. Otherwise I am fit and healthy, but it was upsetting to hand back my driving licence. We own a motorhome which my wife can drive,, so we spend a lot of time meeting friends and doing as much as possible out and about before I get too bad. I can cope so fsr , butit distressesme that my wife will have all the stress as it gets worse whilst I will gradually decline and lose my marbles! It will be worse for those watcing I am sure, but that's life? Alan

It was so helpful to read, as it is almost identical to my situation and made me feel I was not alone. I was tearful as I recognised so much of what you were saying. Thank you for sharing, thinking of you x

Each story is special and unique as all human being are. It destroys whole families. It just so sad, if only a cure could be found.

Thank you for sharing! Exactly the same feelings !! Reading your story and other people' posts made feel less 'bad' about myself. xx

How to help our dad who cares for our mum who has Alzheimer’s.he won’t accept some of the things she does and is starting to lose patience . When we try to help he gets defensive.

Hello Donna,

Thank you for sharing your story about your parents.

For carers seeing a person they have known and loved for a long time change and act in a way that does not makes sense, can be hard and very emotional.

Often someone with dementia may be in denial and not realise they need help, which may make it harder for their wives, husbands or children to help them.

Your mum can not help the way she acts or things she does, to her it may seem logical and right. Putting yourself in your mum’s shoes will hopefully enable you to all see more clearly, because it is her reality you all need to work from. Be guided by her and go with the flow. Her behaviours may be frustrating, exhausting, challenging and hard to comprehend but to her it is real. If your dad gets confused about her behaviours imagine how confusing she may find it. She is just trying to make sense of things.

There is a lot to learn when caring for anyone with dementia. Your dad may benefit from meeting other carers with similar situations. This can be really supportive and invaluable and help him understand, cope and come to terms with the change in your mum.

If you are looking for local support the link below will take you to a search bar where a postcode can flag up services local to you that may be of interest. A memory café might be a good place to start as you can just pop in and have a chat, meet professionals, other carers and get information to learn more about dementia.

Find a service near you: http://bit.ly/2mKSGIm

I have added some links to our factsheets below that may be helpful to have a read through:

Carers: looking after yourself http://bit.ly/2lXyfYx

Communicating http://bit.ly/2oTxBR0

Memory loss http://bit.ly/2nYjGEi

Dealing with guilt https://bit.ly/2DelV1A

Grief, loss and bereavement http://bit.ly/1Poh8FR

Your dad may like to give us a call on the Helpline as often speaking to someone outside the family unit can be helpful. National Dementia Helpline: 0300 222 1122

You may also find it helpful to visit our online forum 'Talking Point', as other people may have discussed similar issues. The forum can be found at: http://forum.alzheimers.org.uk/forum.php

I do hope this is helpful, please feel free to contact us again or call our Helpline if you need any further information or support.

Regards,

Helpline advisor

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