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.

Loraine being carried as a child by her dad, Martin, in a black and white photo

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. 

Loraine beside her dad, Martin, is a black and white photo

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.

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40 comments

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Lorraine thank you for your post it touch my hard of all your words I’m going trough the same with my husband he was diagnose with Vascular Dementia and early Alzheimer’s as being almost two years and I see the change in him slowly an d as being so hard for out two Sons to expect this dreadful disease some day are harder then other and some other I feel like I want to crawl under a rock and never come up . Sending hugs and prayers
Lina

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We lost my father in law in August, due to covid there were delays in him being diagnosed, eventually around November last year he was diagnosed with Alzheimer’s and vascular dementia. Every day I miss him, we are all missing him but we all acknowledge he has his mind back and can hold a conversation, remember who we are etc now as it’s soo hard to see a loved one struggling to communicate or unable to communicate. My heart goes out to everyone who is going through this because it is truly heartbreaking

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Thank you for your story I know exactly how you feel we had to make the heart breaking decision to put my dad in a home sadly we lost him last year like you’re dad he had endless falls I still miss him so much especially now as he loved Christmas even though I’m heartbroken I know he’s in a better place and free of this dreadful illness sending all my love stay strong ❤️😘

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Reading all of your comments has had me yet again in tears. Thank you to everyone that has commented on my journey with Dad. Just wish he knew how proud I am of him for fighting this for so long. But.... because I love him so much, I don't want to see him fight it anylonger . Peace and to be set free is what Dad truly needs and as much as I will be devastated to lose him for good this time, I know its what he would want.
Love to everyone that is on the same sad road that I am. Wish we could all meet in person. To share our heartache and to realise that we shouldn't carry so much guilt would be a blessing .
Loraine

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Thank you Lorraine for sharing your father's story. I wish you both peace on your journey. Its a journey I have been on and I feel every deep inch of your pain, when your heart aches in your chest and you sob into your own arms. The Dementia journey is one of the most painful and cruel.... Sharing your pain helps others, they feel less alone. I am trying to turn my scars and pain into something positive by supporting dementia patients, educating others and sharing my story x

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I totally identify with your emotions, I lost mum to mixed dementia a month ago. For 4 years I cared for her in my home, adapting it initially and then when walking went, lifting her in and out of bed to the camode. I pureed her food, fed and washed her until she finally succumbed to this dreadful disease. My feelings of guilt and loss are exactly like yours because nothing I could do was ever enough and the situation is unfixable. Take the lovely moments while they are with you and treasure them. Mum died peacefully at home with her family and close friends with her which is what she wanted but I still have the feelings that I didn't do enough. Please don't think you wouldn't feel like you do anyway whatever the circumstances.

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Hi Lizzie. Thank you for your comment. I think what you did for your Mum was truly amazing. It takes a special kind of person to care for someone at home with this decease but when there is the unconditional love we find it somehow. . I have discussed bringing my Dad home but the Nursing home are saying they don't think its time yet as my Mum is 82 and partially blind so wouldn't cope at the minute but will consider when they know Dads near to his time then a care package will be put into place. I have discussed bringing him home to me but Mum wants him with her (which is understandable) although it doesn't help with my feelings of our guilt that he's still sitting in a chair all day in the home with no family around him. We are still limited with visits due to covid and only get 2 a week and 45 minutes each visit. Every day that we don't see him is a day nearer to losing him. So, so sad the whole process.
Take care , Loraine

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Thank for your original piece Lorraine and to get one for their comments. My husband has Alzheimer's and is in a home quite early because of his behaviour, I couldn't take it, I was too frightened. I !did him terribly and think I should have been stronger and put up with his behaviour. Love and thanks to everyone for your stories xx

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Hi Lizzie. I know exactly how you must be feeling? My Dads behaviour changed at first. Sundowning at 5pm started daily and Mum would be on the phone to me daily saying your words exactly. The falls that Dad used to have was constant and it became a nightly routine of ambulances coming to pick Dad up off the floor where he had lay and wet himself. My Mum wasn't strong enough physically to cope with him and like you became afraid of what will happen next? Unfortunately my Dad had to be sectioned as he became really aggressive and angry. Frustration is a big part to play with this as Dad was losing the ability to understand why he had to still bathe, chase clothes and also couldn't dress himself. He had to surrender his licence and sell his car. Not surprising the anger after a life that has been so loving built for so long is destroyed so cruelly. I admire your honesty and i think you know within your heart you did right by saying you were afraid by thinking if you say it you have "put him into a home" I think if you talk to majority of people we all think the same. I question myself that we may let Dad go too soon? i know within my heart we didn't. He needed specialist care and round the clock support, something that Mum couldn't give as much as she wanted to and that also wasn't fair on Dad. I live with the guilt every day and wake up thinking "what does Dad think laying in his bed alone at night"? Think it would drive us all insane if we gave way to it. so.....I try to think positively. Dads got fantastic care in his home, can't fault anything. Be at peace with yourself because i know your husband would be saying that you have done all you can and be proud of yourself. Take care, Loraine

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thank you for such lovely

words. my dad is in hospital bed at home with mum. he has Alzemiers and parkinsons disease. he smiles at has tears. it's heartbreaking xxx

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Hi Lorraine. Its a devastating place to be in but your Dad is at home with the people he knows and loves, i wish with all of my heart my Dad was at home with his family too. But at the moment there are conditions in place with the home due to Mums health and right now not being able to cope with Dad. When he gets near to the end he can come home to mum. How long is a piece of string? nobody knows when this could happen and Dad could pass in his sleep alone. What a journey we are all going through! absolutely heartbreaking.
Hope you are all ok and love to you all. Loraine

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Thankyou 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

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Hi 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

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Oh 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

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Hugs and best wishes. You are one brave lady. Respect!

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Thank you :}

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I 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

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Hi 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

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Thank 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

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I 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.

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Hi 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

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Hi 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

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The 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 ❤️

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Hi 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

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Sounds exactly like my dad and his journey with dementia
Such a shame to end their lives like this

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This 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

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Hi 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

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I 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 ……… ❤️😘

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Hi 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

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