Jacqueline's mum mum aged 86 with Lorna and Alex, her grandchildren

'Mum was not Mum' - Jacqueline's story about her mother's dementia diagnosis

When Jacqueline's mum stopped doing the things she enjoyed, she took her to the GP. She tells her story of Audrey's diagnosis with Alzheimer's disease and the changes in her behaviour.

As I am a nurse, I knew Mum was not Mum.

My mum, Audrey, is 87, and a widow. Her home and garden became neglected. Everything would be out of her kitchen cupboards and clothes strewn everywhere with unpaid bills mounting up!

She had stopped going to her much-loved WI and ‘Darby and Joan’ venue where she baked and helped cook lunch for other elderly ladies and gentlemen.

Whenever I tried, as delicately as possible, to ask ‘What is happening here?’, she would reply ‘I am happy as I am like this. All is fine.’ When I asked her doctor, their response to me was if Mum wants to live like that, that's her business.

I brought her to live in Dorset where I was lucky to have a GP as an old school friend. I brought Mum for a check-up... The rest is history. Mum has Alzheimer's disease. But, of course, in Mum’s opinion, the doctor doesn't know what she is on about, silly!

On clearing out Mum’s bungalow, my heart sunk, and I blamed myself, an only child whose loving dad died aged 57. What would he think?

Why didn't I see the signs earlier? Was I so wrapped up in my own career and family? 

I found some Christmas cards. Some were written and stamped, some without stamps, but there were piles of them - several of them written to the same people. They must have been in the cupboard for years. I told Mum and she said to send them. Best not, I said, because what if a partner has passed over? Never mind then, she said. You don't know at the time whether to laugh or cry.  

Mum was never very forthcoming with love and affection. The older I get, the more I am finding that harder. She bows her head if I try to kiss her and hug her.

She is still my mum outside, but inside often childlike.  

Mum can have tantrums and will swear, which is totally out of character for her! The grandchildren think it's cool sometimes, but if we are out, Mum doesn't hold back. I feel at times that I need to justify to others in order to avoid confrontation.

Mum was very strait-laced but will now walk around in a state of undress. Sadly, I am unable to care for her due to a badly broken wrist. I have carers coming to bathe Mum as she will not wash or change her clothes voluntarily. She will often do her buttons up wrong or put her slippers on the wrong feet.  

Mum will voice, ‘In the war, we couldn't wash! If we did, we were only allowed five inches of bath water. So, don't flush the toilet!’ That is a constant rant of hers. 

Bananas are her favourite. They bring back a childhood memory of being given half a banana as you rarely had them in the war. How we today take life and things for granted!

Left image: Jacqueline with Audrey and her grandson; Right image: Audrey as a young woman

Jacqueline with her mum Audrey and son Alex

Channel 10 (ITV 3) is Mum’s safe, protective bubble. It shows all the old re-runs of things like Coronation Street, Emmerdale, Heartbeat, Darling Buds of May and Inspector Morse. I hope the channel never changes - Mum loves to reminisce.

When we put on normal channel 3 (ITV) to watch Coronation Street, Mum does not understand it. She recognises the theme tune. We have tried to explain that this is the new version but a couple of actors are now deceased. 

Inside I cry for Mum every day. I must not let her see my pain of helplessness. We need a cure for this disease as people only see the person’s outside persona, not the anguish inside them and their loving families.  

Thank you for reading. Love Jacqueline x   

 

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29 comments

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I feel lucky that my Mum Daphne reached the age of 85 before she began to lose her memory. Both her long and short term memory were lost at an early stage and she stopped talking to people, but changes became easier to explain to people when she was diagnosed in 2012. She continued to live in her own home of 56 years until 2016 and I spent an increasing amount of time with her there as time went on. Then she came to live with me, finding it easy to settle as she had spent many short breaks here with me over many decades. We carried on going having holidays to the Lakes and going to tennis tournaments, playing Scrabble and she would help me with tasks around the house as best she could. We had carers morning and evening from 2018 but I still liked her to come downstairs to watch some TV in the evenings. I had always told myself that if she became incontinent then residential care would have to happen but I fought against it and actually it was not as difficult as I thought it would be for me to clean her if necessary and she accepted it and was not embarrassed. In the last year she suffered from itching and poor sleep and her mood was not so good but she was not aggressive and didn't wander, and still walked and ate well. She was wary of visitors to the house but I still managed to get a smile from her most days. The problem in the last few months of her life was that I would get frustrated if she struggled to put a shoe on or chewed her tablets and it showed too much towards the end, and for that I have felt a lot of personal guilt since her death in the summer. If I have one piece of advice for family carers it would be to ask for and accept help and support; I should have but rarely did. But still I feel that now she is in a better place, wherever that may be. That she has cast off the dementia. That she is happy again. Thank you for reading.

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Your story is one many of us can share in many ways.
Every day we grieve inside but try our very best to keep our loved ones as happy, safe and well cared for with love and compassion as much as possible.
I cannot add anything as you have described events we can all recognise in parts, even though our journey is unique and of course very personal to each of us.
For my husband living with advanced disease I feel a deep sorrow for what is lost. Also, knowing there comes a time when it is no longer possible to give the quality of care we so want to provide there should be no guilt for doing the best you can and engaging the extra help required in whatever form is best. Your mother sounds like a proud, strong independent woman who gave a lot and you gave her the extra time to keep that independence. It is so hard to take a step back sometimes. You are not alone. Although I have never commented before and indeed sometimes find messages and comments too painful to read I did read yours. Thank you.
Ps. Yes, my husband enjoyed the re runs of some of the gentle drama programmes on ITV3 too even though he never saw !

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My husband who is 68 was diagnosed 5years ago, it is getting very difficult with his mood changes, he has very little speech and incontinent but won't always let me help him, I have wonderful male carers in every morning to shower him. He is not the Keith I married 48years ago but I have him here with me and alot to be thankful for in these trying times.

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Hi Janice, my heartfelt thoughts are with you and hubby Keith, you are both so young . I can relate with you on every level my mum is the same, but it must be even harder to see Keith go through this. When we are married we have an intimacy and a bond which now has changed only because of this cruel disease. From my experience with mum and her incontinence she was in denial and arguments would infuse, like lighting up a match, as they are kind of aware but don't understand.
Mum says its wet but was not me i must have sat in the wet. i use to feel frustrated and upset now i leave her clean pants out with pads in them, and a note on the side saying pop a pad in your pants ( if she has gone through what i leave out) and i have drawn a smiley face by my words. I no longer make any comment so she does not feel embarrassed. It is hard to smile when as the main carer we feel our own pain and theirs too. Having male carers is really good, when they are there use this time for you, you time Janice is important so you don't loose sight of the person you are. Moods are sadly a factor and they get frustrated. keith probably has so much he wants to express but can't, keep showing him love and there will be days when you will have a glimmer of the old Keith back treasure every minute. Keep safe you are a wonderful wife Kind wishes for christmas and New year. Jacquelinex

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Thank you for writing this. I can relate to it entirely, my mum had Alzheimer’s for eight years and in the last years became very aggressive and extremely confused. She did many of the things you’ve described.

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Having watched my mum deteriorate for some time i am having to break a promise I made to her regarding putting her in a home. It breaks my heart and living 200 miles away from her doesn't help. She does have family living close to her but she knows she can talk to me openly without fear of being put down or rejected. I just wish I could do more for her and could find some support for those who are having to greive for the person they once new even though on the outside they are still here xx

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Hi Sharon, sorry for late reply i only received my link late yesterday. It is very hard especially for daughters i feel, will always harbour guilt, which is hard to shake off. I know the time will come when i too will need to let go and find a special place for my mum to go into. Believe me i share your pain and there are many dark days when i feel now its time and then that day passes and another begins. The sad fact Sharon is that it will happen unless my mum is called to heaven before this. My heart will break too but YOU have done what is right and safe for your mum. I have made the same promise but my heart tells me that i too will need to break this. It is good that there are other family members nearby to help easy the pressure on you. The main caring always seems to fall onto one member and it is usually that person that has to make the decision, but believe me the other family members may not say much but deep down they will know that they could not have cared for mum as you did.I am pleased your mum is able to open up to you. Are the staff able to arrange face time chats for you both.Now your time with mum can be quality time as when we are the main carers special time is hard to find. Keep strong my friend You have made the right decision so please let go you need a life too and your mum would want you to be happy i am sure your mum is content now and you can now be her daughter. Best wishes for a safe Christmas and wishing you better times ahead. Jacqueline X

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Hi my dad is 79 and has just been diagnosed after he had to come and stay with me. He was living on his own and wasn't coping too well but then he started to have delusions and dialled 999 because his neighbours were planning to kill him. I'm an only child and have 2 young daughters but I had to bring him to stay because I just couldn't see him sectioned. It's all a steep learning curve and he is totally oblivious he thinks he's getting old and everyone forgets things. It is very frustrating we've gone from living independently to delusions in the space of 2 months. Who knows what tomorrow will bring. I've read some of everyone's comments but I think I am still coming to terms with what is going on. Take care everyone x

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Hi Jackie,
If you would like to chat i am happy to do so. Remember it often feels as if you are totally alone, some days i find life harder than other days and i too have meltdowns quietly on my own.
Don't struggle on in silence.
Thinking of you, kind thoughts i send to you and your family.
Jacqueline

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Hi my dad is 79 and has just been diagnosed after he had to come and stay with me. He was living on his own and wasn't coping too well but then he started to have delusions and dialled 999 because his neighbours were planning to kill him. I'm an only child and have 2 young daughters but I had to bring him to stay because I just couldn't see him sectioned. It's all a steep learning curve and he is totally oblivious he thinks he's getting old and everyone forgets things. It is very frustrating we've gone from living independently to delusions in the space of 2 months. Who knows what tomorrow will bring. I've read some of everyone's comments but I think I am still coming to terms with what is going on. Take care everyone x

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After reading your story I can relate to all of what you said. My wife was diagnosed with Alzheimers 5 years ago and all the problems that you are having I see in my wife. She was always very private and very clean and smart but that has all gone and I can't get her to have a bath and I have to struggle to was her which she battles against, she has changed beyond all recognition.

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Dear John,
Thank you for your reply i only received the link to respond late last night so i am sorry for my late response. Bless you for caring for your dear wife i know how hard daily life is. As you know from my little blog my mum was very smart, clean and a private lady. Bathing is difficult, if she doesn't want to wash dont worry as some can develop a fear of water running done on them especially over their faces, it won't hurt her if she does not wash every day John as long as she isn't incontinent. Sorry to mention this ,this subject is always hard for everyone to speak about. I used to ask mum have you washed she would say she had but her flannels were always dry. now i say i have run you a lovely bubble bath shall we go together then i hold out my hand, i explain everything to mum as i am sure you do, i give her a rung out flannel with soap and i turn away. Have you a bath aid to lower your wife down into the bath or a seat in a shower cubicle you can get all aids on loan free ask your Doctors surgery for advice, ours came via asking a health coach at our surgery via Health care at home. My advice do not struggle speak out don't be alone as it is easy to become so, make you time never feel guilty speak out to your family and friends. May i wish you a both a safe, Healthy and warm Christmas. Festive wishes to you both. Jacqueline

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My sisters , brothers and I nursed our beloved mum for the last three years of her life,I found it easier to go into her jumbled world rather than keep trying to bring her into modern reality, whatever she spoke of often the past we would join in with, even when she thought I was her mother quite a lot, she was comforted thinking her mother was around her , so I’d go along with whatever made her happy and feel safe, sadly my mum had a stroke and that finished her God bless her.but it’s a cruel enough disease that all 8 of us underestimated, she became invisible, stripped of her ability to decide anything luckily for mum she had us who adored her and worked around the clock to ensure she had everything she needed as in the end we had to wash , feed her and do everything for her which was difficult for her as she had raised eight children alone and was fiercely independent.what a cruel disease just hope they find a cure soon.My mum was such an inspirational, strong kind woman , she died from the after effects of a stroke, but she also died from dementia first.

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My 93 year old mother lives on her own and was diagnosed with MCD in 2014. She now has stage 4-5 Alzheimers ands is deteriorating rapidly. Mother has a daily carer for one hour in the morning. She refuses to let them carry out basic household tasks and all she does is talk and drink tea. Mother is deaf but refuses to wear hearing aids. She refuses to wear glasses, slippers and use a walking stick. Mother is now obsessed with her heating being on and rings my sister constantly, asking how does she turn it off. Her latest call was at 02.00 on Sunday. Mother has no idea where her shopping items belong and spills or upsets things constantly. Being in total denial, she refuses to consider going into a care home but 2021 will be the year for drastic changes. Whether mother wants it or not.

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Hello Janet, I was just wondering whether you had a power of attorney in place for your mother? This would make life a bit easier for you in terms of giving you more authority to make decisions on her behalf.

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My wife, Pamela, has been in a Care Home for some time having been diagnosed with having Alzheimer's in 2014. Any kind & practical way of dealing with people with this awful illness is obviously of great human value.

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My heart goes out to Jacqueline, it is such a cruel disease and it must be so hard to witness her dear mum so altered by it.

My mum showed signs of memory loss and confusion which gradually got worse over about 18 months. Early this year it suddenly became much worse with her accusing carers of stealing and eventually me too. She was so angry with me and threatened to report me to the police. Overnight, it seemed, she lost the memory of the last 20 years, hence was looking for my deceased (of 10 years), father. She then started saying she felt suicidal. Mum was already having carers twice a day and I decided a live in carer was they way forward. Michaela moved in in June and the improvement has been astonishing. The Alzheimer’s has not gone away of course but the constant reassurance and stimulation of a companion has meant all difficult behaviour and thoughts have gone.

I still feel sad a lot if the time that I have “lost” my mum but she still shows concern for others and lives to give and receive affection. She is happy and cheerful most of the time.

Jacqueline’s article has made me realise that I’m very fortunate and that I should be thankful that my mum is still able to show some of personality. I appreciate of course that Alzheimer’s is progressive and that there may be changes in the future.

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Exactly what me and my sisters said ‘mum is just not mum ‘ we knew there was more to it the doctors tried to say depression.. anxiety and after all the tests and scan which took over a year we got a rare form of Alzheimer’s as the diagnosis.... our mum is 69 and I could have written your post .... sending you love I understand

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My mam was diagnosed 2016 and until now I've had to do everything for her,but soon sadly I am going to have to make the move towards residential care as her behaviour becomes more erratic, she constantly wants to go see her mam and dad who passed away 1982 and 85 to visit them in a village that was bulldozed in 1974,alzheimers is a dreadful disease and God willing I won't have to go through the pain in my older years as I've had to endure watching with my mam,hopefully for future generations a cure can be found,fingers crossed.

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Thank you for sharing this. Thank goodness your Mum has such a wonderful daughter

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Thank you so much Diane. I hope my little blog can reassure others, that what they experience is sadly reality and we all try our hardest for how loved ones we need to try not to take what they do and say to us personally for they don't really understand themselves. Take care now of yourself and keep safe and well. Kind regards Jacqueline

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Thank you for sharing. My mum has very recently been diagnosed with Alzheimer’s, we are waiting for a ECG to decide which medication would be suitable. I know it won’t cure but it hopefully will help in some way. It’s just made it harder with the pandemic, Mum is extremely vulnerable due to having Leukaemia and it’s so hard for Dad trying to keep her in. She just doesn’t understand the dangers outside, it’s heartbreaking but we do the best we can. It’s good to share with others going through the same. Everyone take care.

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I lost my Mum in 2019 with this awful illness, it was the sadness of her struggling to know who her family were and in the end not knowing who I was at all. She had been a strong independent woman and dementia took it slowly away. She spent the end of her life in a beautiful care home with wonderful staff, who kept her happy in her new world, we will always be grateful for that.

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