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.
Jane
saysLorraine, I have read your story and all your comments to the various people who have responded to you. I think you’re a wonderful, caring, articulate advocate for all the families going through what you are! Never feel guilty. What you’ve done by sharing your story and being so honest about your feelings is truly amazing!
I stumbled on to the website because my daughter in law is facing the end stages of her mother’s life. This poor lady has early onset dimentia and is now only 67 but diagnosed 8 years ago. I was trying to find information to help her and have been so moved by your sad story. I’m sure your Dad is so proud of you even though he can’t tell you. Well done and think about becoming a helping hand to others in a similar situation when you’re story is over x
Margaret Duffy
saysThanking you so much for your story, not an easy one to go through, I am at this very point of my dad's mixed dementia you are an inspiration God bless you MargaretDuffy.
Andrea
saysThank you for you honesty and really drilling down into how emotional this journey is. My mum now in final stage Alzheimer's and it is so heartbreaking to see her dignity slipping away and just recently not recognising me.
gina jagim
saysThese stories are sad but very helpful. I just found out from my moms CT scan that she has vascular dementia. She had a stroke in 2018 and has changed each year. I thought it was just aging but as I read these stories I know this is the brain thief stealing from her. Thank you for sharing.
Tiffany
saysMy father has also progressed through this horrible journey and I feel like I am reading his story as I read yours. It’s a heartbreaking, cruel disease that leads your through an emotional roller coaster.
Janet Fishwick
saysMy 94 year old mother is in stage 5 of Alzheimers. She has lived alone for the last 32 years since my dad died. Mother has carers twice a day and is under Adult Social Care Services. Her mental and physical deterioration is visible weekly but she refuses to go into a Care Home and we cannot force the decision. Mother is virtually housebound with increasing incontinence issues. She is obsessed with the lights on her heating system and rings my sister constantly until the early hours,asking for it to be switched off. Mother asks where her car is, despite not having driven for years. She is in a state of total confusion and anxiety over any small change to her daily routine. Mother is forgetting how to switch lights off, or turn her television on.These are just a few examples of how mother is existing in her world of Dementia. As we approach another year with her,myself and siblings are becoming increasingly concerned about where and when this torture will end.
Hi Janet,
Thanks for your comment. We're sorry to hear your mother's condition is deteriorating. It sounds like a difficult and stressful situation for you and your family. Please know that you aren't alone, and we are here for you.
We'd recommend calling our Dementia Connect support line on 0333 150 3456 and speaking with one of our dementia advisers. They can listen to your situation in more detail, and give specific information and support. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
You might also find it useful to speak to other people who are going through similar situations in our online community, Talking Point. Here, carers and other people affected by dementia share their experiences and offer support and advice. You can read more about the community, or register for free here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps, Janet. Please do call our support line if you need to speak with an adviser.
Alzheimer's Society blog team
Sue Leonard
saysThank you for sharing, l know how hard this is my mother had advanced dementia for many years before it took her. Please remember this disease is about the patient, not about how hard it is on you. Please remember what they are going through, and give them the consideration they deserve. I know it’s hard for you but you are not the patient, they are going through much more than you realise, please except their reality and help them. 🥰
CK
saysI think it's about the patient but also about the people around them like the family. This awful disease takes a terrible toll on all and the toll on family should not be under-estimated
Jean Skeen
saysI hope your wishes come true. Mum was set free from this disease early Monday morning peacefully in her sleep. Such a welcome relief for all .
Leah M.
saysThank you for sharing your story, my father's Dementia is getting worse, my sister lives with him and it's taking a toll on her, therefore it is me as well, bc I feel my hands are tied and my heart is broken 💔
Sheila Gray
saysLorraine, thankyou for sharing your heartfelt words about your Dad. Dementua is a long painful journey that family members go through alongside their loved one. I referred to Dementia as a Burglar of the Brain. It stole little bits on my lovely Mum as she slept and left her just that little bit more confused and less able each day. People would ask me why I continued to visit her in hospital as she didn't know who I was. My answer, I know who she is, and that's what really matters. Dementia is a cruel cruel disease.
Lina
saysLorraine 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
Clair
saysWe 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
Sharon Williamson
saysThank 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 ❤️😘
Loraine
saysReading 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
Ann McDonnell
saysThank 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
Lizzie E
saysI 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.
loraine
saysHi 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
Liz Stevenson
saysThank 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
loraine
saysHi 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
Lorraine Runarsson
saysthank 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
loraine
saysHi 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