Dementia Support Line
Real stories
The tipping point for my wife needing a diagnosis of dementia
Pete’s wife, Di, began to show early signs of dementia in 2005, but it would be several years before she was diagnosed with the condition. Pete shares Di's dementia diagnosis story, including the symptoms and changes in her behaviour that occurred in the years following.
I met my wife, Diane (Di to almost everybody except her mother!) when she had just qualified from college in 1972. We became engaged in 1973 and married in 1975.
Di was a primary teacher for all her working life. She taught infants, ideally Year 2.
Children and parents alike warmed to her outgoing personality.
Di became renowned for her skill with young children - comforting those who found real school too hard whilst getting the best out of the high achievers.
Di celebrating at a wedding in 2017.
Family connection to dementia
In the mid-1980s, Di’s father, aged around 67, was diagnosed with dementia. He went into a care home in 1989 and died the following year.
When her father's death certificate read ‘Alzheimer’s Syndrome’, none of the family had heard of it.
It is hard to believe now but it was only about that time this form of dementia started receiving publicity.
It was then that Di’s mother told us that her own father-in-law had also shown many signs so typical of Alzheimer’s before he had died in 1964.
Di was paranoid that she would develop Alzheimer’s and, in the early 1990s, went for tests – both NHS and private – but was reassured that she had no symptoms of the condition.
Showing signs of dementia
It was in 2005 that the first early signs of Di’s dementia (but only visible in retrospect) began to appear – conversations totally forgotten; decision to give up teaching to become a teaching assistant in 2007; repetition of questions and many others that the families of people with Alzheimer’s will recognise.
Friends and work colleagues didn’t comment at the time because, somehow, ‘it wasn’t right to’!
Di used to have to be reminded of parents who she’d arranged to meet after school and, as a teaching assistant, she often forgot what the teacher had asked her to do.
Di enjoying a family get-together in 2015.
Reaching a tipping point
A tipping point was reached in 2013 when a doctor friend told me, ‘You need a diagnosis for Di!’.
We started the process, but it took over six months to get this diagnosis, initially of ‘mild cognitive impairment’ followed quickly by ‘early Alzheimer’s’.
Meanwhile, Di was found to have a small tumour on one breast. Thank goodness, this was caught at an early stage, with an operation within a month of first diagnosis plus radiotherapy a few months later. 2014 was not the best of years!
Over the next three to four years, Di’s memory steadily worsened. In reality, I probably lost my soul mate then.
Gone were the endless stories of school, life in general and her anecdotes, most of which I knew anyway but always laughed at again.
Di’s ability to undertake virtually any multi-step task disappeared, so I started cooking, washing clothes, ironing and making coffee. Di became incapable of executing the steps necessary to find out what drink guests wanted, put the tea or coffee in cups and boil the water.
I photographed all her clothing so I could say, ‘What about these two together?’ and labelled drawers, all the things you’re advised to do when someone you love has Alzheimer’s.
Di in 2013, photographed during a Baltic Cruise.
Changes in behaviour
Then, in July 2018 with Di aged 67, everything changed!
You’re told that these changes are gradual, but Di’s wasn’t.
One day, Di was calm and we had a loving existence; the next she was agitated and, over time, prone to be aggressive.
Very quickly she ‘wasn’t married to me’ and ‘didn’t live in this house’, which had been our home for 31 years. She often wanted to go to bed around 4pm but would then get up at 11pm and stay in the sitting room all night.
Seeking additional support
Di wouldn’t wash or change her clothes and got aggressive with me when I tried to persuade her.
Carers came in, against Di’s will, to try to persuade her – some were successful, others not!
In February 2019, I persuaded Di to go to our local care home so that I could have some respite.
She went once for about five hours but for the second visit, she was resistant, not wanting to get in the car or walk. I finally persuaded her, after first asking my supportive daughter Rachael to come from work to help.
Holding hands, together
Di has continued to deteriorate mentally but is reasonably good physically.
She can’t really talk but makes a noise as if she is trying to. Just occasionally, I get a word or two, like an audible ‘You’ when I ask what she’s looking at or ‘Oh gosh!’ when I told her that she was 70 next week! But words are rare, and she often doesn’t look at me or respond during my three-times-a-week visits.
I hold her hand, tell her what I’ve been up to and sometimes just sit there with her. I do bring her chocolate treats, which she can sometimes feed to herself although more often she wants me to.
She doesn’t appear to process sight well and, I believe, hallucinates. She now can’t walk, feed herself, wash and clean herself – in fact, her wonderful carers do virtually everything for her.
People whose loved ones have been admitted to care and nursing homes often say that there’s a crunch point when they know that they can’t cope anymore – I understand that feeling.
If you are worried about memory problems, we are here for you.
Call our Dementia Connect support line advisers on 0333 150 3456 - they will listen to your situation and provide dementia information, advice and support.
Learn more about dementia
This World Alzheimer’s Month, we are encouraging everyone to ‘know dementia, know Alzheimer’s’, to recognise the signs and symptoms and to reach out for help.
Claire Cornish
says
Alzheimer's Society
saysHello Claire, we're very sorry to hear this. It sounds like you are going through a difficult time. Please know we're here for you.
Please know that you can always call our support line on 0333 150 3456 if you'd like support or advice from one of our trained dementia advisers. They'll be able to listen to your situation and may also be able to direct you to further information. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps for now, Claire.
Alzheimer's Society blog team
Rita Basco
saysAnonymous
saysHi Rita,
We're sorry to hear this, it sounds like a difficult situation to be in. Please know that we're here for you if you need us. You can call our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen and offer specific information, advice and support to help. Find out more about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/get-support/dementia-support-line
We hope this helps for now, Rita. Please do call our support line.
Alzheimer's Society website team
Lisa Newman
saysCraig Eley
saysCraig Eley
saysSandra Faulks
saysAnonymous
saysSandra, we're very sorry to hear this - it sounds like a very difficult situation to be in. Please know that you aren't alone, and we are here for you.
We'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific advice and support. You can find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps for now, Sandra. Please do call our support line.
Alzheimer's Society blog team
MagiC
saysTonda Douglas
saysMy husband was just diagnosed with dementia last month. He is 63. I think he is probably in the middle part of his dementia. He changed about 4-5 years ago and has gotten worse in the last year. He asks repetiive questions constantly. He used to cook every morning and he cant cook anymore, cant use the coffee pot. He cant follow the simplest of directions to do chores , loses stuff constantly, easily frustrated, paranoid, thinks he has been in a place before and never has. He failed his driving test today and is very angry. He failed all 5 parts of the test but nothing is never his fault. I dread the progression of this disease. It is so sad. We got to retirement age and we wont be enjoying it at all.
Anonymous
saysHello Tonda, thanks for your comments.
If you are based in the UK, we recommend speaking with one of our dementia advisers to discuss your situation. They will be best placed to provide you with advice and support for you and your husband. Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line)
If you're based in the US, please contact the Alzheimer's Association helpline: https://alz.org/help-support/resources/helpline
Or if you're based in Canada, please contact the Alzheimer's Society of Canada helpline: https://alzheimer.ca/en/Home/ContactUs
Wishing you all the best.
Alzheimer's Society blog team
sue
saysTonda
saysMy husband is 63 and just got diagnosed with dementia. His problems started really in 2017 when he wasnt able to do computer work or paperwork of any kind without severe anxiety and he was doing this type of work for years. He took a job at a small prison but he was still having problems. Our dr did a mri which showed some vascular changes but nothing major and he also saw a neuro psych NP who diagnosed him with depression and anxiety. He was started on Zoloft but over the last few years , especially the last year he asks the same questions over and over and i had to take his meds away because he would take multiple days of meds. If we had an appointment for anything he would get dressed every day and think it was time to go when it wasnt. I finally got him in to see a neurologist last month and he looked at his mri and said he had brain atrophy on the 2019 mri. He also failed the test that was done by the neurologist. He scored 16 out of 30. The neurologist told him he didnt need to drive and today we went to a rehab center and he had a simulated and actual driving test done and failed all 5 parts of that. He is angry and has been for the last month. He thinks I am trying to put him in a psych unit and trying to take all his stuff. We have been married 42 years and I have always been a good and faithful wife. I work nights as a RN and I can see that changing soon We have a handicapped daughter who lives with us. She is WC bound but is capable of watching him. I am so sad for him, he is confused at times, gets situations all confused at times and always thinks he has been places that we never have been before. I guess he is probably at the middle part of his dementia and I really dread the horrible progress of the disease. He has so much anger now, I just hope that part doesnt get worse. I understand he is losing his independence but really he seldom goes anywhere anymore.
Martha Ann Edwards
saysMy husband is probably in mid level dementia and being cared for at a nursing home. I visit often. He is becoming aggressive and seems to only have 1 wish, that is to come HOME. I could not care for him at this point. Am eaten up with guilt because I so wish he could be home and sympathize with his feeling like he is discarded..
Sharon
saysBeth
saysHi my husband is 67 he was having issues with his memory for about seven yrs was diagnosed with mild cognitive impairment has been now diagnosed with Alzheimer’s my husband is quite good for a few days then has what I call emotional melt downs can’t reason with him at all keeps on saying I’m just nasty person which hurts he is nice as pie to everyone else I’m beginning to resent him at times we have been married for 49 yrs it’s hard for me ti see a person that looks normal but is not I know it must be very scary and frightening for him but it is for me I feel so helpless knowing I can’t do anything to make it better I’m a ex nurse and I feel very frustrated and angry feel very much alone
Anonymous
saysHi Beth,
We're very sorry to hear about your husband, it sounds like you are going through a very difficult time. Please know that you aren't alone, and we are here for you.
We would strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support that's relevant to your situation. You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps, Beth. Please do call our support line.
Alzheimer's Society blog team
Mrs B
saysI think the thing I mind most is what Alzheimers has done to our relationship before my husband was diagnosed. Had I known the changes in his behaviour were probably due to the disease rather than what seemed a wilful lack of care, I wouldn't have been so hurt. Now I face years of caring for someone I've come to resent. Of course now I understand it is easier, but I mourn the loss with all my heart.
Dorothy
saysThe loss is real and should be mourned. I have come to look at my husband's care as a challenge for me to grow as a person. Because of providing his care, I am stronger, physically, emotionally, and mentally.I have learned to problem solve and make the best of what we have.
Tim
saysDear Dorothy - have read, listened, prayed over all aspects of this insidious disease my wife and I have confronted daily for the past seven years. Your attitude and approach is precisely our distilled conclusion in sum. IT AIN’T EASY, suppose nothing with meaningful growth ever is. Thank you most kindly for this measure of supporting reinforcement. May your growth find no bounds.
Warmly
Lynne
saysSharon
saysI was diagnosed about a year ago with Dementia. its very hard for my husband of 55 years to understand why I can't do a lot things I used to do. Household chores are difficult
I use the internet a lot to keep up with the world and stay in touch with family 800 miles away
I have a lot of trouble focusing and my memory is getting worse. I will be 75 in two weeks and this is hard to believe why this happened
Alan Parker Thornton
saysHi Friends,
I’m Alan Thornton (69 years old) and was diagnosed with Alzheimer’s in the last few months. I’d known I had “mild cognitive decline” for over a year so it wasn’t too much of a surprise but I’d been hoping that my issue would be manageable over a longer time. I closed my business and retired thinking I’d make the best of things that way and also that I’d be fair to my former clients by not continuing in a reduced capacity.
I’m in the Atlanta, GA USA area and live with my Wife and grown Son who has moved in to help out.
The disease is more noticeable than it was when I was diagnosed a few months ago. Memory issues are increasing. I’d been a jogger for many years but now I’m a bit unsteady on my feet even walking.
I’m frightened by the prospect of further decline in cognition and usefulness. Perhaps some of you can understand that. It’s still sort of a shock.
Anyway, very best wishes to each of you and thanks for this space and for your companionship. Best regards, Alan
Nanny P
saysI have just been diagnosed with Alzheimer’s and it came as an enormous shock. My Husband, Daughter, Son and rest of family have been very supportive and I know they will gather around me. As for myself I wrote a ‘Mission Statement on a Wipe board and it hangs on the wall in our bedroom. I read it every day to stay positive and gradually I am accepting of what it will do to me. I have no other option, it will change me more and more and there is nothing that I could do which can change that. So rather than wallow in self pity I mean to live the rest of my life filing away the diagnosis and make the most of what I have now and will deal with the elephant in the room when I have to . To those of you who are in the same situation have you come up with anything that helps keep you going? As a ‘ newbie ‘ I have no idea as to how long it will take to change me but it will happen and I am scared. Positive feedback only if possible. I look forward to any worthwhile suggestions . Many thanks, I do hope someone out there will contact me.
Michelle Bell
saysAt the moment my dad lives with me and my family. He has vascular Dementia from 2019 his 88 year old. It’s very hard and sometimes I just want to walk away from everything. But that’s the easy way . And I owe it to my dad to stand by him in his last chapter. So I will carry on with the struggle for now knowing I am making a difference to my dad’s life.
Mandy
saysMy mum is awaiting a diagnosis but it’s almost certainly dementia. She too is young (61) and was a head teacher until 5 years ago so very similar! She was starting to forget children’s names.
Dementia really does rob you of your loved ones.
Wishing you all the best x
Jayne morgan
saysMy husband sadly passed away in 2019 at 52 living with vascular dementia, he had a lot of other illnesses which can send his death. So I understand you grieve before they pass away, I’m now helping to look after my mother who has Alzheimer’s dementia, and due to covid and lack of interaction with others is advancing quite quickly now. It is hard to watch at times but we all as a family try to make memories with her. So take care of you as well as your wife.
Michelle
saysI believe my mum has deteriorated very quickly because of COVID. She has vascular dementia and the month before COVID was meeting friends three times a week for coffee and trips out. We knew she has vascular dementia and she did repeat herself a bit and seemed to not always recognise people she didn't know that well but it was very unnoticeable really. Now just a year and a half later she can't really talk, just a few words and then trails off. She needs help with everything and most of the time doesn't know who I am! My dad cares for her but most of the time she is just sitting on a chair all day staring at a tv which she is not following. At weekends me and my brothers see her but I wish I knew how much she knows about what is going on. Should we be taking her out more in her wheelchair for instance.
Heather Webber
saysYes, do take her out. The feeling of being locked up and unable to go out means they often feel like they are in prison. So times outside are essential for their well being.
Dorothy
saysThe book that changed my thinking the most was Jolene Brackey's book, Creating Moments of Joy Along the Alzheimer's Journey: A Guide for Families and Caregivers. I strive to create moments of joy both for my husband and myself as his caregiver. He was an amateur triathlete and I take him out in his wheelchair to the park where he used to run, bike, swim , and walk with me any day that the weather allows it. Just going out lifts our mood .