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Real stories
‘With Alzheimer’s, you are constantly in a state of grieving’: Loretta’s dementia story
When Loretta's mum, Dinah, was diagnosed with young-onset dementia, Loretta began to grieve for the person she was before her diagnosis. Dinah sadly passed away in 2020, which has led Loretta to reflect on her personal experience as a carer.
When my mum was diagnosed with Alzheimer’s disease in September 2012, it felt as if we had all been handed a life sentence. All I could feel was the injustice.
Early onset Alzheimer’s, they said. I only had knowledge of Alzheimer’s happening to very old people and my mum was just 62. I was only 25 at the time and couldn’t grasp everything that was happening.
Part of me felt that my mum would overcome this, with determination and somehow sheer luck, we could beat this disease.
But the truth was this is something that would be part of our lives forever.
Adapting to Alzheimer’s
What I always took for granted with my mum's Alzheimer’s is how things would progress. We would all have to adapt to the way in which we cared for her and what she needed frequently.
At times, I would feel that I had ‘mastered’ the care I was giving my mum, found a routine. We'd feel okay with how things were, but before we knew it, she had deteriorated again.
Looking back, you realise with a disease such as Alzheimer’s, you are constantly in a state of grieving. You are constantly losing the grasp of what your relationship was with that person, and there is absolutely nothing you can do about it.
The person you love is in front of you, yet you’re screaming inside for just two minutes, or a moment, of how things were before.
There were so many things I wanted to fill my mum in on – events that had happened in my life, jobs, or relationships. At other times I needed advice, yet she couldn’t give it. I wondered at times if, deep down, she was screaming to be heard and understood too, as she lost her ability to speak and ways of communicating with us.
Precious moments of joy
Caring for my mother during her illness wasn’t always filled with sadness. There was also so much joy! My mum still had her wicked sense of humour and laughed at the silly things I did around her.
When she mustered the ability to speak, she’d whisper ‘I love you’ and hold my hand tight.
Her face would brighten up when I’d walk into the room. She was my mother, but she became the person I wanted to fiercely protect. I wanted to take away anything that was causing her pain and discomfort, because she did not deserve to go through that.
I grew up so quickly in those years. I learned patience and I learned not to be hard on myself.
'Most importantly, I learned that it’s okay to not always be in control. Because you are not, sadly this disease is'.
I took for granted how much time we would actually have my mum around with us. I took for granted that this disease would eventually take its last turn, and take my mum away.
Grieving for Mum
When Mum did finally pass, not only did I feel robbed but also I felt displaced. What was I going to do with myself if it no longer meant taking care of her?
Together with my siblings, we spent nearly eight years working together to make my mum's life as comfortable as possible. I was maybe naïve to think this would extend her life, only for it to be snatched away. Then eventually I felt relief and immense guilt that I did feel that way. However, I know it comes from knowing my mum will no longer be suffering from this cruel disease.
The memories of my mum are of times that were excruciatingly painful and moments of anguish, where I witnessed parts of her illness that made me feel completely helpless.
Despite this, I have memories of my mum pre-Alzheimer’s, when she was full of life, vigour and was teaching me life lessons. These are gems for me now in later life.
One thing I’m glad about during the time of Mum’s illness is that I allowed myself to be present in that time.
To enjoy my time with her rather than focus on what the inevitable outcome would be.
The support I had from other people with Mum’s care was just as important as the support I gave to her. I’m glad that at times I asked for help.
Would you like to share your story?
Writing and sharing a story about how you or a loved one has been affected by dementia can offer some relief for both writer and reader. Find out more about how to share your story.
Fan
saysThanks for sharing, I feel so much similarity with you. The hopelessness that nothing can be done at all. And being inconsolable. Those who didn’t went through, could never ever understand the pain of losing most loved to dementia. The pain only grows stronger and deeper with every moment of realisation that it will never recover and your relationship with her will be gone bit by bit and day by day.
Sarah Manning
saysHi Loretta, thank you for sharing your story. You have it spot on. I was angry for a long time with my Dad, thinking it was just him getting older and being awkward winding Mum up. I had to confront him in the end after a couple of years as it was getting to all of us, he said there was nothing wrong with him but I begged him in the end in tears - I said "Dad, you are my Dad but you are not my Dad, there is something wrong here and I want your permission to talk to your GP" - I think it started to click with him then as he agreed and signed a letter to give his permission. Fortunately this got the ball rolling and after several tests and scans it was found he had Alzheimers at 70 years of age. He had been an Fireman and then an Ambulance Technician since he was 20 and retired in his early 60's, he was a happy chappy with a wind up sense of humour to almost change personality overnight. The relief at getting a diagnosis and finding out it wasn't the grumps soon changed to as you say grief and guilt set in. He is still with us and some days he seems to be with it more than usual but he is a totally changed man.
Donna Thibodeau
saysThank you all for sharing. I lost my Mom to vascular dementia in 2010. She only lasted three years after her first diagnosis. Now, two years ago my husband was diagnosed with early onset dementia at 57. He lost his job and I left work to take care of him and spend the best days of our life together. It truly is difficult to see them slowly waste away but we still try to have wonderful moments together. I just wish for more help in this area. There are no programs so you are definitely on your own to deal. We try to live in the moment and stay grateful. More people have to learn about this disease and there is such a stigma attached to it. Cancer, stroke or parkinson`s diseases are all accepted but people don`t know how to handle dementia. It`s like they are scared to catch it. I only have wonderful memories of my Mom now. You tend to remember just the good times after they are gone. In love and light.
Sharon
saysLoretta, thank you for being so brave and sharing your experience with us all. Your mum, Dinah, would be really, really proud of you! X
su chalmers
saysHi Loretta
I so understand your story.
I know exactly when I "lost" my mum to Alzheimers - and it broke my heart.
I know she's happy where she is and her care is marvellous but at the end of the day she's my mum - and with Covid - well that's been a nightmare for us all.
Thank you for sharing your story
Luv and Kindness
Itziar Ondarra Lahuerta
saysHi Loretta!
I used to work in a care home where most of our residents had some kind of dementia. From reading your story I can tell that you and your siblings did take good care of your mum, I would say you and your siblings may want to get together if that's possible and spend some time getting your Mum's stories together in a scrapbook so you can read those happy moments that you all had with your mum, write them down in your and your siblings' handwriting, add photos, ask neighbors and extended family for anecdotes about your Mum and if you feel angry because dementia has taken your Mum away from you, take the book out and read it and remember how you Mum was before this illness took charge of her life, also will be a nice way to keep your Mum alive in all of your memories and those members of your family who may come in the future, we all want to think we will all remember everything about our families but sometimes we do forget. Take care of yourself and of each other.
Jenny Cutforth
saysThank you Loretta for sharing your story, such a brave girl infact all here going through the the same caring for someone with Alzheimers or Dementia..I have been caring for my sister who was diagnosed with a form of dementia,, she wa diagnosed in 2014, she has lost the use in her fingers & her speech has slowly got worse, she is a very happy person always laughing, at times like others have said lose patience & feel very cross withmyself , but its head when you are living with it 24/7...I love my sister dearly & will do all I can for her to stay home, but I get worried seeing her go upstairs & wonder how long she will be able to do, I have endless guilt feeling that Iwe should move, to somewhere like assisted housing where there would be no steps, but then we could do that & maybe a couple of months down the line, she may have to have more care & go in a care home, I just feel selfish saying that I would rather stay where we are, because we have 4lively neighbours we are all very close & take care of each other, Mandy loves it here too as neighbours she has known for almost 40 years pop in to see her.. I feel totally thronged at the moment with all the paperwork of doing POA's for us both & yesterday I organised a Will for myself, but can't do one for Mandy as she does not have the capability to do herself...I guess I am feeling a little like my life is ending as I am 75, my sister is 77, but I am now at the stage where I don't like leaving her, we do have carers now back after lock down, but having them come in at different times, & having new ones you have to explain where everything is & what Mandy likes puts pressure on me...I allow myself 2 afternoons a week for 3 hours to meet with friends who I don't see often now , but its lovely when I see them...
So sorry I have ranted on, lookin on what I have written I sound selfish, I just feel my life is ending too, Its just hard having to think of all the things that have to do to make life the best for Mandy without me getting over helmed with everything....so sorry I know there are people in a much worse position than me...
Thank you all for your postings it helps to know there are others out there the same..I send you all a big hug 🙋♀️❤Jenny xx
Sorry for any typos I am sat on my patio having coffee before I get Mandy up & sun is so bright butl print on mobile. So small...
Sally Hill
saysI’m so sorry for your loss. Sounds like you and your family took such wonderful care of your Mom. My husband is newly diagnosed with this awful disease and I’m so very saddened for both of us. We have been married for 55 years. I too get impatient and angry at times. Trying my hardest to make him feel how very much he is loved and cherished. I find the sun downing very difficult but am learning the art of distraction can be helpful dealing with temper, etc. Anyone that has coping mechanisms would be so appreciated. Thank you for listening. I already feel lighter!
Deborah Hellmuth
saysI just read Loretta's story.. So many comments you made reminded me of my mum.. She had Alzhiemers since 2016..in her late 70s. I cried for so long.. Like you I felt it wasn't fair. She had cared for my grandmother before this and soon after her death mum was diagnosed. She worked her whole life and was always there for the family. In the early days I wanted to tell her everything as I use to.. Then over time I knew I couldn't do this as she just didn't understand or remember. I feel I'm loosing parts of mum every year, sometimes there's a spark and hope but soon gone.. I never thought she would get something like this and loose everything she worked hard for to live in a care home. Thank you for your story I felt connected with your pain.
Christine Harvey
saysI also relate to the feelings of guilt and wonder why i haven't more patience when caring for my husband who has been diagnosed with FTD approx 3 years ago. Its one thing knowing what and how i should manage situations but doing it through these difficult times is another matter. Thanks for sharing your story Lorretta. x
Margaret Aubrey
saysGosh I can relate to so much what everyone has written. My husband was diagnosed with MCI three years ago. He has slowly got so much worse. With lockdown we haven’t been able to have another diagnosis. When he asks me have I met his family. We have been married 47 years. Some days he doesn’t know who I am, Because he hasn’t had a proper diagnosis I cannot get any help. I know he can’t help it but some days I feel so low. I’m 66 he is 69. I’m still fit and feel my life is passing me by. It’s true what people say until you go through it nobody quite knows what it’s actually like living with someone with dementia. When he has a fairly good day I feel so sad for him as he realises he is getting worse.
T hel Green
saysYou have taken me back to when I was my sister’s sole carer, when I tried for two years to get help and to get a diagnosis for her. I had support from listening volunteers from Alzheimer’s Society and enormous help and support from the local Hub. Living with someone must be so hard. Love and hugs to you.
Jacqui
saysYour Story, was so moving, with so much love for, your mum.
I list my mum in 2015, she was 85, i know your mum was much younger.
But, we can make happy memories, through the sad times of us caring, which really help, when we lose our loved one in death.
You Loretta and your siblings gave her the very best love and care.
Elizabeth.Callen
saysThank you Loretta for sharing your very personal story , it was very moving to read . My husband was diagnosed with Lewy Bodies Dementia last April at the age of 64, these last 5 months l can see a really noticeable deterioration sadly . Some days l do feel l am in control of what’s happening but others days I feel panick , asking myself ‘ can l do this , am l doing it right ‘ 🙈xx
Pauline Spendelow
saysA sad story, you were very brave Loretta to be so strong and support your mum at such a young age. I’m 62 and still feel quite young, so it must have been aweful to lose her so young.
My wonderful, lovely dad passed away 3 years ago now and that was so hard. He was the best dad in the world to me my sister and brother and families. He had vascular Dementia.
Joyce Kernohan
saysIt is always good to read how others cope with a loved one when this happens to them, I have just read a few little books about caring for someone with the disease "knickers in the fridge" is one of them and it helps to know how others cope with caring, having family is good and I feel for those on their own
Jill Silvester
saysBless you Loretta for sharing your experience. There are so many feelings carers of loved ones with Alzheimer's go through in the course of even just one day. I didn't have a lot of support when my late husband had AD and speaking out can only bring the message home to the professionals just what this valiant army go though. You are amazing 🌻xx