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.

Dementia Support Line
Our dementia advisers are here for you.

97 comments

That's exactly like my dad very similar he had to be sectioned then now in nursing home and he is holding on and sometimes occasionally still knows who we are though not as often now as he is in late stages. Such a lovely but sad story thank you for sharing 😘
My Dad has had dementia for years now and lately diagnosed with stage 4 prostate cancer. He is 91,, none of his children including myslef live in the state. My brother placed him and my mom in a nursing home. The nursing home staff do as little as possible. My dad calls me crying asking me to help him and get him out. He knows that isn’t is home and I just recently went there and he just starts crying. I told him I was going back home and he started crying. I know he just wants to be at his home. it is hard getting care where he lives, people don’t show up etc. I feel his soul is in unrest what can I do?
I feel your pain and cried reading your story. I visited my dad tonight at the nursing home. He’s 90 and has dementia he recognises me but barely talks now and constantly wants to eat .. he fidgets and puts his fingers to his mouth. With nothing in them and I hold his hand and he put my fingers to his mouth to eat them. I struggle to understand what he’s trying to do. Always a fit healthy man ran marathons a fireman and a painter and now trying to eat my fingers ( in a gentle way) he didn’t obviously but it’s like my dad but it’s not anymore such a horrible horrible thing to happen to anyone
My Dad's ceremony was yesterday. He left this earthly world 12 days ago and my heart is broken. Selfishly, a physically healthy strong 72 yr old, Purple Heart Vietnam Hero. An honored Marine, who survived in the jungles of Vietnam for a very long time. He said, I made it through the War and now I must be here, like this? A slow torture by vascular dementia. Its said that they do not remember, but11 days before his death, I walked up close to him (slid my covid mask down & smiled) and with all his energy and will, he opened his mouth wide and forced out my name, "Taffy." I smiled and said yes, and I love you so much!! He stared at me blank for a short time and looked around in a daze like but carefully looking at my daughter. He looked so tired, frail, maybe hurting, hands shanking, skin and bones, my heart sunk. I asked if he wanted to go lay down in his bed and take nap. Once again, he put out a "yeah" and it was literally "his voice!" Then he said, "I do not want to nurse to put me in the bed." 11 days before his death (final stage any moment, we could tell), he was still fighting to be independent. Still not giving up. He did not want to surrender to this disease. He also said, I don't like people feeding me. It is these things that run through my mind. The relentless cruelty, degrading, body killing and slow torture this disease inflicts. In 3 different nursing homes, 4 different hospitals, each time getting him strong again and saying he nursing home neglected him and placing him in another. I don't know how I will ever find closure or peace. I know he is in Heaven but why like this? It is so final, so unfair and way too soon. I can only pray that with research there will be improvements. But until this there must be a push for a "special memory center." where there are enough nurses to care for those who cannot talk. My Dad refused to ask for anything. The scary part is, when we were not there (every other day, my Mom was there, every day my brother was there, and seldom I was there in body because I just can't handle it), Was he taken care of? The answer is no. They didn't allow us to see him for 3 weeks due to covid outbreak. Later to find out he was in solitary confinement with no TV! Staff had no empathy, the workers were like tired robots. We are so sad, broken hearted that he had to endure hell just trying to die. I do not feel so alone now that I've read these other stories similar to mine but it does not make me feel any better. I pray for those before us, on the journey now and in the future. There are just no words...

Hi Taffeny, we're very sorry to hear about your dad. Please know you and your family are not alone at this difficult time. 

You may find support through our online community, Talking Point, where carers, family members and other people affected by dementia can share their experiences and get help and advice from other people who have been in similar situations: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community

We hope this helps for now, Taffeny.

 

Alzheimer's Society blog team

Your Dad's story mirrors my Dad. He is the most gentle of souls. He thankfully doesn't know our beloved baby brother passed this year with cancer. He rarely talks nowadays, except to say " help me" this break our hearts as he appears distressed and frightened. Sometimes my sister and I can console him, but he says he's "worried about his children as they need him" how can we console him , it's truly heartbreaking for the family seeing him so distressed. He no longer recognises us, but recently has said our names which was wonderful. When visiting, even if he appears asleep we always hold his hand and he kisses them constantly I wonder if it's a kind of comfort to him knowing someone is with him. It's getting harder to leave the Nursing home. I just feel so sad, he doesn't deserve this nightmare disease

Hi Janet, we are sorry to hear about your dad's situation, it sounds difficult.

If you would like to talk to someone, please call our Dementia Connect support line on 0333 150 3456, where one of our dementia advisors can give you advice and support. More information, including opening hours, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is helpful.

Alzheimer's Society blog team

My wife has been to hospital and got early to middle stage dimentia comfirmed . With all the writing e mails it is interesting to see how people caring have to go through one feels for them all . Its a long hard journey for the career. My wife sometimes knpws me sometimes not but seems happy . I personally am a trained carer at differant times in my life . Am now retired mid 70s l can only pray all those who are careers can cope ok .ken
My dad my hero was diagnosed with Parkinson’s and dementia years ago… He is 84 years old, I am going to see him one last time as the hospice nurse said he will pass soon he has been in bed for weeks after getting Covid and pneumonia my only hope is will will not suffer anymore and be with all my siblings who have already passed
Good morning, My father who has slowly been digressing for 2 years now has started clapping out of the blue. Slow to start and fast at the finish. Usually, 5mins per session. Has anyone else seen this in their loved one? He seems to enjoy it, I'm just wondering if anything what it means?

Good afternoon, Rico.

If you would like to talk more about your father's situation, please call our Dementia Connect support line on 0333 150 3456, where one of our dementia advisors can give you advice and support. More information, including opening hours, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is helpful.

Alzheimer's Society blog team

 

My mum taps things. I think it is comforting, something to do with her hands, sensory and textural. Initially we confused it with her wanting something from us, but then i put on music and we tapped together, so now i think it is more of a pleasurable thing. I saw Teepa Snow, talk about losing from Left side of the brain and retaining the right. The right side is rhythm.
Hi Lorraine sorry to hear about your dad, my dad is 5 yrs in a home and now his swallowing is deteriating. Did your Dad have problems with his swallowing. Thanks Steve. X
Lorraine. I know exactly what you mean and how you feel for every aspect of your story. I'm hoping for the same peaceful end for my Dad too.
Hi Im sorry for all your lost loved ones, moms 75 and just been diagnosed with Mixed Dementia & Alzheimers , we believe she has had it for a good 7 years already when dad got diagnosed with Glioblastoma grade 4 brain tumour she lost her husband of 52 years greatest man my dad I had the privalage of holiday his hand he passed at home 30th January 2022 in the pandemic mom started to get worse alone in the pandemic no purpose as no longer careing for him it was Oct of 2021 when things started happening leaving tap running in bathroom, anxiety over letters dropping on her door mat , I started doing bills letters etc, still driving to local shops fit as a fiddle had a funny turn April 2022 took her for a CT scan May 8th had to wait until Oct 3rd to be told your mom has Mixed dementia with Alzheimers, will be getting meds given to slow down her progression, her a lady is coming into assess mom at the bungalow I'll be there for that, Mom kind of understands what she was told but does not fully,! wants to carry on driving but we know we will have to inform the DVLA and take her keys away, thats like her independance gone ,however we have local shops hairdressers chemist doctors etc 10 mins walk from her bungalow luckily she knows these places( until she does not I guess, ) Ive read up 2.5 to 3 years prognosis with what mom has. I am awaiting a report & next steps should be 3 weeks time. Im 51 now had a hip replacement at 45 after a horrible car accident I was in , operation same time dad got diagnosed with terminal cancer. Ive had alot of stress and anxiety arranged Dads funeral etc all by myself for mom in the pandemic she just fell apart had no idea where to start my own husband lost his dad funeral 4th Jan 2021 1 month before my dad funeral 17th Feb 2021 in the pandmic, I have had alot & know this diagnosis with mom wont be easy, she said she wants to pass like dad at home in the bungalow he had carers in last 2 weeks of his life, he did everything with moms help upto then I think the pandemic broke Dad & now my mom it seems, I would rather mom go quickly heartattack or bug stroke rather than see her demise, Dad always said it was how he wanted to go instead if the chemo operations etc he fought for 5 years. Life is indeed cruel . All you care givers are amazing Im not sure where I will find the strength again but I will dig deep and do it.🤞💕
I really need to converse and listen to people that can relate to the emotional trauma this disease cause to a love one. My dad is in his final stages too. He has diagnose in 2015 he's now 91 and just recovered from covid. I too have cried countless days during various times. The universe couldn't have given me a better dad. I'll choose him again. And it's heart wrenching to watch his decline. I don't recall my aunts and uncles decades back having this battle, nevertheless it's here and I don't see it leaving anytime soon. I trust medical science will find a cure in the very near future. Thank's for allowing me to share.
Thank ypu for sharing your sad story. I felt the love you have for your Dad My husband has dementia/ alzhemers and its heartbreaking losing the person I have loved for 47 years.

I absolutely understand. My father passed away a month ago after a battle with dementia. We placed him in memory care in Jan 2022, and he asked to go home all the time. By March dementia stole even more of him and stopped asking, and slowly stopped responding to medications, was unable to eat as his ability to know how disappeared....and we placed him on hospice and then he passed 4 days later. The only thing that truly brought me peace was knowing he was finally whole again and at peace. ♡

Lovely piece of reading I am also in a similar position as yourself at the age of 28. Your story has given me comfort . Sometimes it feels as if nobody understands the pain