Dementia Support Line
'The Silent Killer' - a dementia poem for my mum
Gwen cared for her mum, who had Alzheimer's disease, until her final years. Following the recent death of someone else with dementia, Gwen had a dream about her mum and wrote this emotive poem when she woke up.
My mum, Jane, was beginning to get confused and frustrated when she was in her early eighties.
We didn't realise but my sister, who is a nurse and lived near Mum, noticed that she was becoming withdrawn. Mum had always been one for a party and very sociable.
My sister thought something was wrong so eventually we persuaded Mum to have a memory test when she was about 83.
She was still very independent and was easily able to count backwards in sevens and know who the Prime Minister was. We thought all was well and she was just getting forgetful.
A change in Mum
When Mum was 85, her mood and health deteriorated. She refused to go out, saying she would when her non-existent cold got better.
We couldn't interest her in anything. She was getting very frail, falling a lot at home and having many spells in hospital. There were added complications and infections that caused more confusion.
Eventually, we paid for private carers to go in to her home each day, in addition to having my sister be her primary carer. I live further away so tried to relieve my sister during school holidays and weekends, as I teach.
We were determined to keep her in her own home for as long as possible and it worked well for several years.
The carers were my sister's friends and they were wonderful. They enabled mum to have her independence.
A dignified end
Mum was finally diagnosed with Alzheimer's when she was 85.
Eventually, we moved her to a nursing home in her final years of life. She died a few months before her 90th birthday.
I am grateful that we were able to give her a good quality of life during her illness. Her carers - both at home and then in the nursing home - were wonderful.
Mum had lots of attention from a loving family and had a dignified end with her family at her bedside.
I am grateful also that she never got to the stage when she didn't recognise us, her daughters.
My dear mum Jane and me during happier times, enjoying lunch in my sister's garden
I wrote the following poem recently as I heard of someone else that I knew had passed away with vascular dementia and he was on my mind.
Mum popped up in my dreams and I wrote it straight away when I woke up just feeling so incensed that another life had been taken, in this case prematurely in his sixties.
The Silent Killer
By Gwen Barnes
In loving memory of my mum who passed away in 2016 after a long battle with Alzheimer's.
I dreamt about my mum today
a cruel disease took her away
it crept up upon her from behind
and slowly crushed synapses in her mind
I watched it happen
I couldn't fight
I was powerless, as she was
in it's might
I sometimes hear the latest news
the scientists have made
the next breakthrough
but this killer is still at large
it's appetite is on turbocharge
it's killing millions in it's wake
it must be stopped
for humanity's sake
So all I can do is hope and pray
that it doesn't get me one day
there's evidence to suggest it will
by then there may well be a pill
to cure this dreaded predator of the brain
to let old age have it's longest reign
to enjoy this life, to be fit and well
until it's time to bid my last farewell.
Helen Gratton
saysSuch an apt poem, i identity with each stanza. My Mum began to show the early sings of alzhiemers at 63 yrs, she had only retired 2yrs previous, and was enjoying going out walking and looking after my 2 yr old daughter. I was more aware of the signs because my mum's dad died with alzhiemers and parkinsons at the age of 70. Things were okay fora while, we did everything we could to support Mum in enjoying life and the things she loved. Sadly, her mental health deteriorated, even with social care support we could not manage to keep her happy and safe. In September of 2919 Mum (age 69) was sectioned under the mental health act and spent 6 months there. After being prescribed anti-psychotic drugs she became more placid, but still very depressed. Mum was admitted to a nursing home the day before covid lock down, my mum's partner at this point had been diagnosed with terminal cancer, we were devastated! We didn't want mum to be in a home, but sadly this was the only way to keep her safe. I became a volunteer at the home for a short time, then covid struck and I could no longer visit. Mum had covid and thankfully survived, we couldn't be there with her however, worst week ever! I am finally able to visit her by appointment 3 times a week, long may it last! Her mobility and personality has diminished significantly. I was reading poetry to her today and began looking for dementia poetry books when I came upon this poem and blog.
Sue Blakely
saysMy husband was diagnosed with Alzheimer's just three years ago were four that I seen signs of it 6 years ago when I was taking care of his mother who had Alzheimer's I get so angry sometimes I get mad at him and as bad as I hate to say this I yell at him but I tell him later I'm not mad at him I'm mad at the disease I hate this disease I've taken care of Alzheimer's patient 4 / 40 years with his mom it wasn't very bad until she got sick and had to have a surgery and she declined rapidly and we lost her my husband is a wonderful man he's now 73 years old and I see him he can't remember who I am at times he looks at me and says we're Sue where's my wife who's my wife I want to leave this place I hate what's going on in my head he had a minor stroke I hate this disease I'm the only caregiver he has and it is just so hard it's different when you take care of them and nursing homes and in their own homes as a caregiver but it is so much harder when you're with him 24/7 with only three days you have a 2-hour break and then you're there all the time it's just so hard I hate this disease and I hate myself for getting so angry with him this poem this lady wrote you could put my husband's name in there I hate this disease
Karen Manton
saysSuch an accurate poem. I feel for all of you. Mam was diagnosed with Vascular Dementia and Alzheimers over 4 yrs ago and is now 88 yrs old. She went into a care home at that time after really struggling at home. Just over 2 yrs ago I had to move her as they couldn't manage her needs. At present I know she is slowly declining. She is struggling with solids, coughing and being sick and was put on blended food by the Salts team. However, the home appear to be ignoring this as my daughter visited yesterday and she had been eating toast with jam, etc. They are also saying they attempt to feed her and when she refuses they leave her to it, she is then putting mashed weetabix etc into her mouth using her hands. I feel this is shocking. They were told to assist mam with feeding. I asked that mam be nursed from her bed as she has been double incontinent, hoisted, limited speech,etc for some time. I felt it was time for her to perhaps be moved upstairs in the home to nursing. She is now losing weight and sleeping more. They continue to hoist mam to the dining room then back to bed constantly. Due to requesting this I have now been accused of wanting my mam to die and saying she is end of life. I never once said that but feel I am correct in saying she is in slow decline. This has broken my heart making me not want to visit again. I have emailed the manager to make a formal complaint and await his reply. I only ever wanted the best for my mam but feel the carers are just going against me. The GP had agreed over the phone to this after visiting mam ten days ago and recognising the slow decline. He referred mam for fast track chc funding to enable things to be put in place when needed. He then visited her again and decided to allow the carers to continue as they are. I am so confused I just can't understand why mam cannot be given the care she needs. It hurts me to think they are allowing her to eat like an animal and ignore advice they have been given. Last Nov her annual review could not take place as care plans were not updated, this was postponed. I am so worried but don't really know how to move forward. I am an only daughter and only have my hubby, son and daughter. I also have my own mental illness to manage and feel this is all becoming too much.
Terrie
saysThis is so sad . My grandma is 90 years old . She will be 91 next month and now in a home . She is bed bound and lost ability to eat and speak as well as her mobility . This disease is evil and wicked and I wouldn’t wish it on anyone ! I cry almost daily as it’s so horrible to watch . My grandma has lost so much weight but she continues to smile at me often which makes my heart cry !! I love her so much ! I pray for her every night and hope they find a cure for Alzheimer’s as it’s worst than cancer in my opinion ! Can you imagine loosing your mind ., not recognising your family .. can’t talk can’t swallow.. literally can’t do anything ! As I write this I’m crying my eyes out . It’s heartbreaking to watch !
Helen Lucas
saysI am so very sorry 😔 for what you are going through Terrie and your Mother , xx
LA
saysThank you for sharing your story and your poem. You are very talented! I'm so sorry for your loss and also thankful she was able to recognize family to the end. Bless you and your family!
sanam khan
saysYour poem is spot on suffering the heart wrenching pain of my dad while he is on his final stage of dementia woildnt wish this cruel illness on my worst enemy cnt jus stop crying hope therz a cure soon an no 1 else has to depart like thos from thete family ever again not with dementia atleast
Allison Holt
saysi loved your poem hun we lost our granddad years ago its horrible to see your loved ones go through this horrible time we miss him every day and pray they find a pill to take to give us all a break and get rid of this horrible disease my son is a full time carer in a care home we are so proud of him he loves his job looking after people with dementia he work really hard every day he has a great team who work with him god bless you everyone merry christmas to you all we will keep on fighting to help them get a pill to help this horrible disease blessed be to you all
Louise
saysI just wish my Mum could tell me she loves me and she’s Ok... She is so poorly and confused it’s heartbreaking to watch her slowly drift away. I hope my Mum knows how much I love her.
Iks
saysI am currently seeing my Grandma slowly deteriorate right infront of me. Its so painful to watch. She is my best friend, my mum and dad all wrapped into one. I cant imagine a life without her and dont know how I will cope without her. She is in her end stages of Dementia and I cant bear to see her suffer. I feel so helpless right now. She was always the life and soul of the family and kept everyone together. The house feels like an empty dark place without her upbeat self. I feel lost empty and numb. My life will never be the same again and I can even feel it now... i wish it was just a bad dream. This is one horrible disease and I feel angry because it so unfair such an amazing kind person has to suffer in this way because of it .
Jane Taglieri
saysA beautiful poem that is heartbreaking but true for so many. God Bless
Drt
saysAs I read through these articles my heart breaks. My mum is suffering with vascular dementia. Everyday I visit I have 2 sisters. We take turns to sleep with her as she is afraid like a child to be alone. She is 77 years old. Sleep pattern is non existent, food intake is very low, even down to drinking is hard to get her to do. Watching her suffer daily is cruel. My mum would be mortified if she realised what she was doing not only to her 3 girls but herself. I pray every night to the good lord. Please take her please make her free from pain. Its sad its cruel. My partner was diagnosed with cancer last November 2018. He has been treat well and it's gone. We always say cancer is a awful thing. I hate the word cancer. But after seeing what he has been through and how amazing the surgeons and doctors have been with us and giving him the all clear, is it the worst thing to have? Cancer they can cure. Dementia they cant. It's a sad sad cruel world.
Kathryn
saysLost mum 6 months ago, still haven’t come to terms with it but still have an overwhelming feeling that she was failed by the healthcare system and that she would have been treated very differently if ‘dementia’ wasn’t the go to diagnosis.
Margaret Wright
saysMy husband has vascular dementia we have brought him home from a care home because of neglect has been scalded , black eye various bruises he no longer talks can’t lift himself of a seat, unfortunately as I am in my late 80s I can’t lift him , he would be so upset if he knew what was happening to him is now double Iincontinent but at least I feel he has a better quality of life we have been given a wheelchair to take him out in but even though we have aground floor can’t get him out , as we have 3steps and no ramp
Hi Margaret,
We're so sorry to hear about your husbands experience in the care home - this must be really distressing for you both.
If you haven't already, please do call our helpline to see how we can best support you. Our dementia advisers can provide information, advice and emotional support. The phone number is 0300 222 11 22, or you can find full contact details and opening hours here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
You may also find it useful to see what support is available in your local area. you can do this by entering your postcode into our dementia directory: https://www.alzheimers.org.uk/find-support-near-you
I hope this is helpful Margaret - if you call our helpline an adviser will be able to give you more support and advice.
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Alzheimer's Society blog team
Wendy Meade
saysThank you for sharing your poem .My mum is is in the final stage of dementia what a cruel heartbreaking disease this is extremely hard on both the person suffering from it and also for the family .
annie
saysThank you, this reminded me very much of my mum I miss her so much, she didnt deserve (nor does anyone) to suffer this cruel disease, she was a good person. I wish the last few weeks of her life were much better than they were. I wish we did something better for her.
Joe Ashton
saysThanks Gwen for sharing your beautifully Positive verse. I have Alzheimers diagnosed 4 years ago after previously being diagnosed with Early onset dementia following two Strokes in 2005 at the age of 57.
Through my own natural positive outlook on life..the Love and Understanding of my wife and family and friends..the excellent professional Clinical support of Dr Raizi my Consultant Psychogeriatrician in Derby I am thank God leading as Good a Life as Possible each day and thoroughly Enjoying Life in spite of the diseases never ending gradual encroachment .
Thank God I am still fit enough at the now tender age of 71 to play walking football competitively 3 times a week and go for a swim a minimum of twice a week. In addition I attend a weekly choir practice and enjoy singing in concerts with the choir. Onwards and Upwards.