'Never ever be afraid to speak up for your loved one, you are their voice'

Submit Your Story to Alzheimer's Society, like Pam who helped care for her mum who had Alzheimer's disease.

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. Alzheimer’s Society welcomes Your Story submissions from anyone who wants to write about life with dementia.  Although we read and appreciate every contribution, unfortunately we’re not able to publish them all.  If you'd like to share your story, email it to [email protected], along with a few details about yourself. 

This week, Pam shares her story about caring for her mum who lived with Alzheimer's disease. 

living with dementia


My mum was diagnosed with Alzheimer's at the age of 73 and passed away on the 27th Aug 2016 - this was her 92nd year.

Within a few short years of being diagnosed my mum joined the care system, try as dad and I might it was impossible to keep her at home.

The guilt I felt at having to do that is overwhelming and the way she clung onto me at the end of each visit I will never forget.

I was a relatively young woman, in my forties, when my mum had to leave us. I'm now in my sixties and my mum has consumed my life for what feels like a lifetime, almost 20 years.

My mum was always a busy lady and worked most of her life as well as raising two daughters.
 

wedding


In the beginning you visit every single day, year in year out, scared to have a day off in case something happens but I have to say the inevitable happens no matter what, falls, broken wrist, broken hips.

Mum was admitted to various establishments; first a mental hospital, when that closed to another hospital, then to different homes. She lived in her last home for six years and I have to say it was one of the good ones.

No one can prepare you for the care home road, it is something you have to learn as you go alone, never ever be afraid to speak up for your loved one, you are their voice.

I feel a sense of relief at my darling mum's passing, for us both, I no longer have to see her suffer. I cannot remember the last time I heard her speak or that she recognised me, after her last fall she was wheelchair bound before that she would walk up and down for hours until she became exhausted then she would sleep.

I think for me it may have seemed worse, my dad made his own illness an excuse to never visit mum and switched off from the very beginning and I had an absent sister who none of us has seen for over 20 years.

She was the most amazing mum and I loved her with all my heart.

dementia care

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Omg - the guilt one feels is an experience only you know.....to see a loved one decline is so upsetting and yes takes over your life.....it is all so consuming.....I never thought when my Mum went into a care home after a fall she'd never come home again - thought it was only ever temporary - so as basic as it was (care staff very good but never enough of them) I wanted better and best for Mum ...so many homes turned us away because of level of her dementia ....but only yesterday after what seems like an eternity I can move my Mum to a care home I feel she'll be better stimulated in and plenty space for her wandering...this has only come about because I had to sell family home to fund her care ...but hey ho ....let's hope a more fulfilling time as I feel she deserves it ...who knows how long that might be .....as cruel as that sounds ....

I totally understand how you feel I a in a very similar situation

Lovely story Pam I miss her so much and I miss the rants we had in my office. Sorry I could not attend to say goodbye, but please feel free to pop in for a coffee, we are all still here for you when ever you need us xxxii

So proud of you Pam. This was a tough read for mum and I but we know how strong you are. We love you!

Wow Pam what a story, my mum has been in a care home for the last 4 years and it is a good one praise God. I visit every Saturday because I work in the week, I sit with mum and chat, but my mum has sort of gone and in her place is an old lady. Me and mum used to spend hours chatting but that mum has been replaced with a mum who is here but not here. She lives for Tuesday when she gets her hair done and plays bibg, and Thursday when they have coffee morning. I could tell my mum that I have won the lottery, met the woman of my dreams and she just replies "That's nice son, are you still coming Saturday" it is heartbreaking as I have to deal with all of mums problems that occur when the home phone me. My brother left home over 30 years ago and has stayed away. I am divorced so do it all on my own.
It's not easy but I wouldn't trade one single day of it. My mum is Golden she is my life and I love her to bits,
So Pam I have some understanding of what you went through.
Gb
Ian Campbell

Thanks for sharing that story. My mum is still at home being cared for by my brother, and I call in on the days Im not working to take her to the hairdressers or to shops, although its getting to a point where her anxiety is getting too bad to take her anywhere some days,
I feel guilty doing things without her, things I know she would have once enjoyed but cant anymore. Its like Ian said, shes here but shes not here.

All we can do is make sure they are cared for and try to keep them smiling, I play my mum old films and comedies to try and make her laugh, sometimes it works, sometimes she just gets more confused.

Its hard to accept that they have different needs now from the Mums we loved, but we still love them and its hard to see those changes.

Hi Annie, I do feel for everyone who is in our situation, I read that you felt guilty doing the things your mum used to do, I know it is hard not to feel guilty but you need to try. It's the same as carers need help too and a break, otherwise they will become in a way like those they care for. Do the things your mum used to do as if she is still there with you, it's like "I'm doing this for my mum" do it with a smile because in a way your doing it with your mum. Keep doing what your doing as your not doing wrong.
I hope this helps as I'm no expert in this field but I thought I would encourage you and anyone else who may read this reply.
God bless you and your family.
Ian Campbell

Dear Pam,
I too have been on the long road of care - first for my dad and now my mum. She has gone into a care home and the phrase ‘Never ever be afraid to speak up for your loved one, you are their voice’ has resounded with me. I am constantly on the case of the home as I do not feel they are caring enough about my mum's well being. I feel though like I am the only one and can't understand why we are all so accepting of the system. In my view people with Alzheimer's and dementia related diseases need much more personal care - there should be more staff - and I have begun a petition about it but I'm under no illusion that things will change.

Hi Karen
Oh how I know what you mean and sadly only people in the same predicament will ever understand. Every visit for me resulted in "issues" what we expect as care for our loved ones is sometimes very poor and unless you are vigilant and willing to speak out nothing will change. The times over the years I have felt the need to speak out on my mothers behalf was overwhelmingly far to often. Although my mothers last home I discribed as one of the better ones it still left much to be desired even up to the last 14 days of her life I had major issues. I also care for my father and have done for many years, mum was in a home and dad at 90 is cared for in his own home by myself and carers I do not know what I would do without the help.
Before my mum died I felt angry, sad, frustrated, you name it I felt it, surely the system needs to get it right but I won't hold my breath. I wish you well with your mum.
My name is Pam and the story was about my mum.

Care homes are horrific places and like you I was having issues on a daily basis. However I had to be careful because a tactic of care homes is to pin something on the resident and their relative and evict people who complain and so I did everything I could for Mum from changing her bed, cutting her nails, bringing her food and drink to help keep her hydrated and nourished, diagnosing her UTI's, chest infections etc. etc. Someone said to me there is no such thing as a good care home and I agree. Privatisation of care homes and the care system has mean they are unaccountable and everything is done as cheaply as possible in order to make even bigger profits. There is systemic failure with cover up of wrongdoing and neglect but those employed to protect take the easy route and turn a blind eye. The only answer is government/statutory care homes and care provision and the introduction of open use of cameras into care which are controlled by family 24/7. Covert cameras controlled by family has been the only way neglect and cruelty has been detected so far. Surveillance cameras controlled by anyone else other than family will make the situation worse. A care home will keep secret the neglect the camera records.

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