Real stories

'Mum was not Mum' - spotting the first signs of Alzheimer's disease

My Mum was diagnosed with Alzheimer’s in August 2022 after a long wait to get her seen following the pandemic. I find her behaviours difficult and upsetting and I cry several times a day. I live with Mum I also have full time job. She’s recently started attending a Day Centre once a week. Caring for someone with this condition is not easy and I would say is also impacting on my mental health significantly. I know I have a very tough road ahead and I hope I’m strong enough to cope with it. Mum is 76.

My mum has Alzeimers ..its hearbreaking I cry most days over my mum..Am losing her each day ..Its so painful to watch ..not coping well.

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.

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 !

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.

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.

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

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.

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.

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.

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.

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.

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

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.

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