Dementia Support Line
Real stories
My dad is in the final stages of mixed dementia and I hope he goes in peace
Loraine adores her father, Martin, but says she has watched the progression of his mixed dementia for long enough. Loraine shares the emotional experience of her dad not recognising her, the challenges of non-verbal communication and other difficulties that the later stages of dementia can bring.
I remember my dad, Martin, as the gentle soul. A rare breed with the most gentlest of ways. A kind man with strong religious beliefs that I truly believe he felt at peace with in his darkest of days.
Boy, do I have some treasured memories! From far back as I can remember, my wonderful dad loved animals. It showed the real kind soul within him.
For my 8th birthday, I asked for a dog. My mother's reply was "You can have one, but don't get a black poodle or a boy." Dad and I returned with a black, male poodle. We named him Peppi! Dad smoothed it over as always with this bundle of fur that joined our family and lived a happy life with us.
Dad emigrated from West of Ireland when he was only 18 years of age. On travels back to Ireland to see his family, Dad would always pullover on the side of the road if he saw somebody stranded with a broken down vehicle. Numerous times I recall this happening with Dad in the pouring rain helping a complete stranger.
Precious moments between a grandfather and grandson
My most memorable, precious time with Dad is when I had just had my youngest son, Conner. Dad was at my bedside within a few hours holding Conner with a huge smile. He suddenly looked up at me and said "Conner is going to be special". Roll on a few years, Conner was diagnosed with autism.
Dad and Conner have the most closest bond between them. Conner always trusted my dad implicitly for his kind, calm love for him.
Endless hours my dad would sit with Conner just in silence. The bond was and still is incredible.
Conner is truly devastated and never stops trying to talk to him. My dad really did bring the best out in his grandson. The look of love in Dad's eyes for Conner is truly precious and I thank Dad for giving this to him as with autism, like Alzheimer's and dementia, it's a cruel, lonely world to be in.
Noticing changes in Dad
My dad's dementia journey started nine years ago.
One day he had gone to change his car tyres, which was only a 15 minute journey from home. Three hours later, after calls to hospitals and family members searching for Dad, he finally arrived home.
After a story about a mix up with tyres that he told us (we knew it wasn't true) we soon realised Dad had lost his way home. He had pulled over into a lay by and sat there. Then he eventually made his way home.
At the time it was put down to "old age".
Fast forward nine years later after endless falls, wandering the streets after walking out the back door unnoticed, six admissions to hospitals and having to be sectioned due to his escalation of this awful disease, he was eventually transferred permanently to a nursing home.
I can't tell you how immensley proud I am of him and the determination he has shown to try and stay with his family throughout his deterioration of Alzheimer's mixed dementia.
Living in residential care
I have watched my dad endlessly beg for help to take him home. I've listened to him talk about his mum who died 30 years ago. He also asked me last Father's Day "Who are you?" when I gave him his card!
I can't describe the pain and torment I feel watching the proud family man, with so much pride, that ALWAYS wore suits, shirt and ties, now resort to wearing a pad and having round-the-clock care with no verbal communication.
Dad has held my hand with tears falling down his cheeks with a soul-searching look into my eyes but unable to communicate with me.
The only way he communicates now is with tears. My recent visit was greeted with the nurse saying when he heard my name he started to cry.
This is a photograph of Dad and me from last year. This picture takes pride of place in his bedroom at the nursing home and in my home.
I have lost count of the times I have broken down, tormented myself when I have to leave him after our visits. I have cried endlessly in the car and felt completely broken knowing after the 55 years Dad has loved and protected me that when he needs it most of all, I can't return it.
The one thing that I can give my dad is the unconditional love that he gave to his family.
I tell him every visit how much he is loved and how much of a good father he has been.
I don't know how much time we have left? He is in the final stages. My one wish now is that Dad goes in peace. Dementia has tormented him cruelly and ravaged him for long enough.
If there's one thing I know I can hold onto, it's the truest words I have ever heard:
Dementia can take away and destroy the memory, but it will never take away the love in someone's heart.
I hope some families find peace reading my journey, knowing that they are not alone.
Debra
saysThankyou do much for sharing your story Lorainne. I am in tears after reading it as I am just beginning this journey with my dad who was diagnosed with mixed dementia only in August and is now on a care home. It's a very cruel disease and it's so true that you lose them twice. I feel like my dad is slowly slipping away from us but I will always hold onto so many precious memories. The bond that you have with your dad and the special bond he has with Connor is so lovely and the love you share will always stay in your hearts.
Love to you and your family
loraine
saysHi Debra. Thank you for your comment. The journey that you have started on is a long road. All i can say is that don't carry the guilt that you feel you could do more. I have spent 9 years with this feeling. It has broke me completely. I have gone through so may emotions that i can't begin to tell you. All because of the love i have for Dad and the fact i couldn't help him no matter how hard i tried. I always pretended that Dad still wasn't too ill and that maybe they had the diagnosis wrong. Dad has mixed Vascular Dementia. I have lost count of hospital admissions, ambulances nightly at home coming to pick Dad up from off the floor because Mums not strong enough to lift hi. I have to be at peace with myself now because the last 9 years as taken its all on my health also, mentally and physically. I have to remind myself that my family need me to stay strong and so does my youngest son Conner. I look on the positives believe it or not lol if i didn't laugh i would cry! Dads in his last stage and being cared for round he clock with fantastic carers and nurses. the nursing home isn't where i want Dad to pass at so we have discussed bringing him home when the time comes. He will be with his family FINALLY back at home where his journey started unfortunately 9 years ago.
Stay strong and take care of yourself because your your Dad wouldn't want you to be sad. I try not to cry in front of Dad. Although he's non verbal i know he still understands what we say. I never say Goodbye when i leave (makes him cry) i usually say " Off to make a cuppa Dad" at that he nods his head. God love him, so so sad.
Please feel free to email agin if you need to talk.
Take care.Loraine
Debbie Williams
saysOh my! Y husbands situation is just starting to advance faster and I already have those feelings. I can't imagine the days ahead and what they must be thinking when their all alone. Its an emotional roller coaster niw, happy, sad, frustrated, every emotion sometimes in a day. I just can't imagine how to deal because i already can feel your pain.All the kids gave basically removed themself from this situation and left me to deal whike working 70 hr werks and raising a 14 yr old granddaughtet at the age if 65. Don't know how to deal already. God Bless You
Christo
saysHugs and best wishes. You are one brave lady. Respect!
loraine
saysThank you :}
Sheila Sears
saysI so understand what you are going through, my mother died three years ago, it was a very upsetting time. Now three later I have been told my husband is in early dementia, when alone I have cried my heart out and all I feel is despair. Thank you for sharing. xxxx
loraine
saysHi Sheila. I am so, so sorry to hear you are suffering, not once but cruelly twice. It makes you wonder how the hell am i going to cope? but you will. Somehow the inner strength from within us takes over for the people we love, I found this when my son was diagnosed with Autism. 23 years on and he's the most adorable, loving son any Mum could wish for, so very proud of him. There were many dark days when i didn't think i could get through . Just the same when Dad got diagnosed but you know what? we are all stronger than we know. The power of our love and devotion gets us through. I hope you find some peace and if you would like to email again please do so. Take care, Loraine
Sheila Sears
saysThank you Lorraine, I think it comes as such a shock when life seems to be so beautifully normal, then all of a sudden this horrible illness raises its ugly head and wipes everything away from you just like that. My husband apologises all the time and tells me he is a waste of space, no matter what I tell him that he is not and I am here to look after him. xxxx
Sue Spice
saysI can relate to these stories as I lost my husband to mixed dementia two years ago. His final months were horrendous as he had an undiagnosed dislocated hip which caused him so much pain. He also had a grade 3 ulcer on the inside ankle bone where he had fidgeted with the pain. Getting his doctor to acknowledge just how much pain I could tell he was in was impossible. He was non-verbal so we all had to rely on body language.
loraine
saysHi Sue. i am so sorry to hear how your husband suffered. My Dad had a fall when he was first sectioned about 5 years ago ( not the same home he's at now). I asked at the time why Dad was limping and the reply was "part of his Dementia and losing co-ordination: Dad took ill a few days later and was admitted to hospital with an infection. while i was there i asked the nurse to X-ray his foot? i explained my reasons and she agreed with Doctor. Xray came back and Dad had a broken ankle. he had a boot fitted whilst he aly in bed for nearly 10 weeks. I am appalled that nobody picked this up but more upset to think Dad couldn't communicate and had suffered so much pain in silence. I now go with my gut feeling and if something doesn't sit right, I question it.
I hope you have found some peace knowing your husband is not longer suffering? i honesty want the same for my Dad.
Take care, loraine
Susan Spice
saysHi Loraine, Quite frankly it was such a relief when he finally died and yes, I felt at peace when he was no longer suffering. He had district nurses coming in twice a week for nearly a year and though he showed obvious distress when they lifted his foot and his foot was turned inward not one of them even mentioned the possibility that his hip was dislocated.
I hope your Dad is released from his suffering soon.
Regards, Sue
Daisy
saysThe story of your dad Loraine, reminds me so much of my dad. Sadly he passed away on the 17th of October, with a long battle of Vascular dementia at the age of 57. We lost my dad quickly towards the end, his speech was one of the first things to go. Throughout his illness he kept his kind hearted nature, he was sweetest of dad’s. We lost my dad far too soon and at the age of 27 I find myself wandering what my adult life would have been like if my dad was still here. Me and my 3 other sisters and my mum hold onto memories of our dad strongly ❤️
loraine
saysHi Daisy. I find myself reading the comments that are left on my journey truly heart breaking. As much as we don't want to lose our parents at any stage in our lives , its the circle of life and will happen to us all. To lose them to this cruel disease is just beyond words that we can describe but your Dad was so, so young to have passed and i am truly sorry that you didn't get the years with him that you should have had. You are only 27 yourself and we all need our Dad in our life no matter how old we are. I know my Dad is still here physically in this world but i know mentally, i lost him a long time ago. I wake up every nigh thinking of him alone in his bed not knowing if he thinks he's been left alone to die because he can't communicate.
I send you all the hugs in the world and to your sisters and your mum. i know its not of much help but he's at peace and no longer suffering. if i could have one wish to help my Dad right now it would be for him to pass as soon as he can in his sleep.
Take care. Loraine x
Julie Savage
saysSounds exactly like my dad and his journey with dementia
Such a shame to end their lives like this
Karen Barker
saysThis resonates with me so much. My mum has alzheimers. My son has autism. They had such a bond. Even now, when doesn't know me, she tries to communicate about my son when I show her pictures. I miss my mum so much, especially as the grandma she should be. Lots of love xx
loraine
saysHi Karen. The bond between my Dad and Conner who has Autism is incredible. Even now although dad is non verbal he will instantly cry when he sees or hears Conners name. The power of love is incredible and this we have to be truly thankful for. Its amazing how the love stays within their hearts when their mental health and body is so savagely ripped apart, bit by bit! Hope my story helped in some way as its been a long journey.
Take care, Loraine
Sarah Coombes
saysI send hugs and it’s so admiral and brave to write your experience to which so many can relate, I am currently going through this with my mother but unfortunately, has vascular dementia so it’s very very challenging and emotional like your own. I have managed to gain support from an Admiral Nurse whom if it wasn’t for her I wouldn’t have got through these many challenges like dealing with social services and finding a care home who would accept my mum. I wish you and your father the best and peaceful path that this can take you down and my heart goes out to everyone supporting their loved ones with this disease as it’s very unkind and doesn’t discriminate anyone when it comes ……… ❤️😘
loraine
saysHi Sarah. lovely words thank you. We never had an Admiral nurse? Dad was allocated a social worker. It has been a long 9 years journey and it doesn't seem to be anywhere at the end of Dads suffering. Dad has mixed Dementia and which is also vascular Dimentia. I have found small parts of being in peace from writing about my journey. Listening to others and sometimes helps me feel a little less guilty knowing that I'm not on mown and my experience is the same with my feelings. Dads in a nursing home because he has complex health needs and now has round the clock care. Like you, my heart goes out to everyone. Its so cruel and it literally breaks the loved ones that have to watch them go through this.
Take care, Loraine
Loraine Cole
saysHi to everyone who has commented on my journey with Dad and thank you . I hope this may help in some way to know that we are not alone in the pain and devasting grief this awful disease causes all of us.
No-one can, or ever will understand exactly how a person must feel with Alzheimer's -Dimentia. I know that although my Dad has lost verbal communication he definitely recognises my name and my voice.
I never quite understood what I was once told all those years ago when Dad was first diagnosed. "You will lose your Dad twice" So, so sad and so true but I like to say "Alzheimer's can take away and destroy the memories but will never take away the love in someone's heart"
Loraine
Paula Sawyer
saysHi Loraine,
I was in tears reading this, I’m going through the same currently with my mum, though she’s not in the final stages yet, I know it’s what we have coming.
I also torment myself and cry and cry over the fact that I cannot do more for her, I have 3 young children myself - I just wish I was in a position to care for her.
Stay strong, your dad sounds like a wonderful man and you, a wonderful daughter x
loraine
saysHi Paula. My heart goes out to you. Its the feelings of guilt that tear us apart thinking we should do more. But the truth is, we do all we can. We give our love unconditionally. Having 3 small children is so difficult at a time like this, you must be exhausted? We feel we need to be in so many places at once and spend hours in bed thinking how can we do it? Sending you all the love in the world and stay strong and healthy for yourself and our children.
Take care, loraine
John D’Arcy
saysJust read your story and it filled me with sadness and happiness in equal amounts.
Sad because we are going through the same thing at the moment with Mum and we understand some of what you’re going through.
Happy because he sounds like a great fella who has really made a difference to some lives in this world with his kindness….something we all aspire to, but fail miserably at times. Your Dad did it 👍🏼
I know it’s a bit of a cliche, but hold on tight to those memories of good times forever, pass on some of that goodness your Dad instilled in you.
Wishing you all well with everything.
loraine
saysHi John. Thank you for your lovely kind words. I am so sorry to hear you are going through the same with your mum. Its a truly cruel place to be in and to watch this awful decease take away the person who we love and respect so much. It strips away the memories, dignity and the person that we all knew. But i find myself reminding me the same thing every day " it can't take away the love within their hearts or ours" Hold onto the that if you can, its the only way i am hoping right now.
Take care and love to your family. Loraine
Catherine Walker
saysJust saw this charity close to my heart commented but can't see it
Catherine Walker
saysMy. Mum is in late stages of vascular dementia & alzeimers she refuses to eat with us only in her room and puts food in hankies under pillow and was 8st 6 now 7,6 she is skin and bone only gets up for toilet or to come in for water slowly seeing her a shell of herself dreading the day hope she goes peaceful in her sleep with us by her side my mum my solemate, best pal cruel disease
Loraine Cole
saysSo sorry to hear about Mum. The disease destroys us all one by one. To see our loved ones go in peace is all we can now hope for.
Loraine
Priya M Kenkare
saysMy dearest Mom is 90 and fidgets constantly, has given up on solids, weakness hurts her body when we pick her up etc. I do pray she goes peacefully with the love and care I am hoping I can continue to provide her with till the end as in India we don't give up on our family especially our elders - no matter what. Yes it's killing to note she does not recognize me mostly yet the trust and confidence when she sees me or hears my voice even when she is unable to focus at all much or my arm around her make her reassured me that all is well.
Julie Chamberlain
saysThank you so much Lorraine for sharing your dads dementia journey with us. He sounds a lovely kind man.
My Mum is in the middle stages of mixed dementia and moved into residential care 6 months ago I miss her so much as we saw one another everyday.
The guilt I feel is sometimes unbearable even though I know she is safe.
She still recognises me and I dread the day she doesn’t
Dementia is a cruel disease that takes everything but like you say it cannot take the love held in our hearts.
Thanks again,
Julie
Susan hope
saysSuch a heart rendering story which I can relate to as my mother is also in the end stage of Alzheimer’s
But your beautiful last words about it can take away the memories but never the love in our hearts is so so true
My thoughts and prayers go out to you and your family in this final stage of the journey to everlasting peace