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.
Trevor Foote
saysUnfortunately, Lorraine, dementia doesn't actually kill anyone. A person can live with dementia for a long time. I pulled my wife out of a Nursing Home when the virus hit, more than 2 years ago. She is completely helpless and not able to communicate verbally, but she is happy, content and secure as I care for her - with the help of my daughters, one of whom comes in every day (and night) to help me with changing etc. It is now 12 years since my wife was diagnosed with Alzheimer's. She is 85, and as long as I am able to feed her properly (baby food and protein enriched drinks etc) she will continue to live until something else will take her - heart attack or stroke etc etc. I am 85 too, and I have to keep myself fit and healthy to be able to care for her. God is good, and He is ourstrength and support.
Audrey
saysSean
saysHi Lorraine…I am a guy looking after my mum with the same mixed problem. She is about 7 yrs since diagnosed, I have looked after her for 4 yrs the last year gave up job and doing it full time with one hours care every morning, I have been advised I should think of a home soon…I looked at one last week and left thinking I can never do it…and the last few weeks she seems to have gotten worse, so really lost…any advice? Let me know?
Loraine
saysHi so sorry, only just read your message.
I can't tell you the guilt I felt when my Dad was transferred into a care home. But...... I watched the care escalate massively compared to what my Mum and I was able to give Dad. My Dad needed 2 carers round tge click to help lift, bathe, feed and change him. We couldn't have given him that care no matter how hard we tried. The way I looked at the situation was that Dad deserved the best care possible and with the care home they provided this.
Sadly, Dad passed away January 25th. The love and care that resonated throughout the home was commendable. They all treated Dad like their own family. It was then that I knew we had definitely made the right decision for him.
Please feel free to contact me with any help you need with your Mum. If I can be of help it would be a privilege to offer some advice.
I hope this has helped you?
Loraine :)
Sean
saysI will ask for advice if you don’t mind, as I’m fighting against it too…how many yrs was your dad in before he had to go in home?
Loraine
saysHi Sean.
My Dad was in numerous care homes from 2020 until he passed.
Do your research-read all feed back from families and check the CQC reports on whichever home you decide in.
Turn up uninvited and you will see how they are with other residents.
Covid destroyed my precious time with Dad. I had limited access and i was worried sick as i know he thought he had been abandoned. But when I did visit, his overall appearance was spotless, healthy and he looked content. That is until he saw me and I could see the flicker of recognition in his eyes. Obviously he was upset and I left him in tears after my visit and I felt broken.
My Dad was in his care home from June 2020 until Feb this year. The journey you will go through is emotional as you feel so helpless. I couldn't have given my Dad a bath or round the clock care. So if he would have stayed at home he really wouldn't have received the care he needed.
Guilt is our enemy throughout this. It plays on us and if we let it, it will destroy our souls. Don't....be open to all what is offered to your Mum and go with YOUR instincts. If something doesn't feel right then question it!
I hope this has helped a little? Please ask anything if you need to.
Loraine :)
Lisa Owen
saysKathryn
saysHi, the sense of guilt and loss I felt when I finally admitted that I could give my darling Mum the help she needed can't be described. I know you feel you can't do it, but please, please know, you absolutely can. Take your time, find the home that makes you feel your Mum will be safe and cared about (not for). My darling Mum left us just before Christmas, the staff in the home she was in went above and beyond for the 7 years she was with them. Please, please reach our if you need to, you're not as aline as you think you are. Xxxx
Jane Patton
saysDear Lorraine.
I have read your story and all the comments.
My husband passed away on 12 December 2021.
What a heart breaking journey. he was diagnosed with Lewy Body Dementia in 2020 but his decline had been going on many years before that. I was his main caregiver for many years but he declined very quickly last month and because of this dreadful covid he had to have a covid test in hospital.
he just could not understand what was going on and he became so stressed. I could not be with him because of the virus and he passed away in high care two days later. not being able to be with him was heartbreaking.
Dementia is the most terrible decease and very mush understood. I salute all those families and carers who are looking after their loved ones you are all angels.
I does take a long time to process the pain and anxiety experienced and I do not think it really goes away. God Bless to every dementia person and all those wonderful people who have to deal with it.
I would like to thank the Alzheimer's Society for their most helpful and supportive advice over the years of my difficult journey. I will recommend you to others in need.
Thank you with all my heart.
Jane Patton
Loraine
saysHi Jane.
I don't know if you will get to read this as its been quite a while since I wrote on here!.?
My Dad sadly passed away February the 25th. It was only in the last 6 months that I actually found out that he had Lewy Body Dementia. All those years if being prescribed drugs for the wrong diagnosis certainly put my Dad through hell.
Dad fought to stay right til the end. I can't imagine the pain he went through with the rigidity of the awful disease. I held his hand when he passed and I know he knew I was there and that he was so, so loved.
I hope you are coping and would love to keep in touch if that's OK? It's a cruel world we live in .
Loraine x
Maria Chumas-Baker
saysSuch a sad story. I went to see my mum in her care home today and for the first time, she was having a blip and didn’t want to know me or accept the flowers I had bought her.
It was so distressing for me and I cuddled her, crying I said - I love you mum.
The carers are lovely and said that she was fine this morning.
I don’t know why she was having a blip but it hit me like a ton of bricks today. She was diagnosed. end 2016 and so I know it will not be long but it is so distressing when it is the first time that she didn’t want me there.
Doreen Johnson
saysI lost my beautiful husband of 53 years. 4 years ago. I can’t forgive myself for putting him in a home.Although I feel if Social workers had informed me of the help that is available I could have coped at home. Just one nights sleep every few nights would have worked. As an SRN SEN RM I let him down. I was so involved I didn’t let him go to ant day care places in case he realised what was to come. Every night at pray hBrian forgives me for letting him down But I have tried to forgive social workers and poor effort from the nursing home as they ignored my requests to bring him home ( when he was dying)
LOUISE CUMBERBIRCH
saysWe are so sorry for what you are going through luckily my Mother in Law knew who the 3 of us where who took over looking after her a couple of years ago she left us peacefully on 3rd December 2 years after a diagnosis which we think she managed to hide for many years, but she still knew us right to the end. Having no mobility without help was a benefit I know as we knew she would never be wandering off. About 5 years in total was her degradation of the movement no matter what we tried she eventually let us use a wheelchair for her and we managed to create some special memories with videos of her singing her songs and trips out.
GINA
saysI jus lost my mother to this horrible disease and I have yet to move on… no matter how much i’ve done, it all seems insufficient now… spend as much time as you can with your loved ones… hold them as long as you can, sing to them, talk to them, feed them, love them and kiss them…. As much as you can… I am missing these moments every second of my day now…. You’re going to need soooo much strength to move forward … so much more than you had prepared….
sean
saysHi gina i love your words and you are so right....i am a man who has been looking after my mum for 5 yrs 2 full time....have to earn that £67 per week carers allowance !?
my sister lives 500 yards away from mum....and hasnt even contacted her for 6yrs or more by phone/mail/cards nothing....needless to say she is dead to me now but thats a different story.
What you say is so true i used to get away for a few hours now and then....but so bad now...i spend mostof the time holding her hand watching tv....its hard for a man to do the lady stuff so i have carers in for hour in morning to do the bathing etc....then a short visit about 5pm for a pad change....i do everything else runnning the house meals tablets etc .
but yes if you dont hold them close as much as possible you will regret it, my sister will have to live with the way she has treated her for rest of her life....
Kathryn
saysShe will, you won't, forget about your sister, concentrate on your Mum. Xx
Gail
saysDee
saysThank you for sharing your heartbreaking story.
I needed to hear this right now, to remember that I am not alone in this nightmare 💔
Jane Boulton
saysMe too ❤
Mr Brian Baker
saysMy dearest precious love of my life had this evil soul destroying disease for seven years my Margaret was a wonderful loving wife of 16 days short of 56 years Margaret was sitting next to me on the settee when she flung her arm above her head said ooh and that was the last word my wonderful brave Margaret said she had a brain seizer Margaret was found a care home and was on end of life care and sadly passed away 12 days later i was able t visit her each day and was told to go home each day to get some rest, while i was with her i was talking to her and holing her hand and was able to love and kiss her i do not know if she knew i was with her i can only hope she did on the day Margaret passed away i had a phone call at seven in the morning to get there as soon as safely possible i was as it happened getting dressed the ironic thing is i said to the carers i will have an extra half an hour that day and i missed holding her hand as she passed by minutes but my Margaret was finely at peace we gave my beloved a good sending off that i am sure she would be chuffed with anyone who says that this evil disease takes there dignity was very wrong in my Margaret's case all through this illness Margaret was brave and full of courage that i can only love her for so i say be in peace my beloved your loving husband Brian xxxx
Jean Campbell
saysLorraine I have just sat and read your journey, I lost my husband of 60 years last year to Dementia, I had cared for him for ten years before I had to put him in a nursing home many a day I visited and wanted to take him home again, knowing I could not manage him. I want to Thank You for sharing your story and letting people see what we go through.
Sandra Heard
saysIt is so important for us to talk abot the realities of dementia. In the later stages it is so often "living hell with dementia" rather than "living well". I have been with both parents through the long , painful dementia process. To know that your loved ones are often fearful , confused, frustrated, feel stripped of their dignity and that it was their worst fear to go through this adds to the whole cruel process. The disease can be torture, we all hope to be physically well cared for but often the mental/emotional side cannot be remedied for long. Once I spent a week caring day and night for my lovely dad as his accute atack of delusions and hallucinations meant we had no idea what might happen next.It frightened me but imagine how it felt to him knowing his brain was unhinged.
His last few weeks were spent in hospital/care home . He did not have covid but the stance of not allowing visitors added to his desire not to live further like this. He clearly told staff, doctors and myself that he was stopping eating and drinking as his only option to take control. He died slowly and in distress. I call it torture by a medical and political system that still does not allow us choice over controlling our suffering at the end of life. Why should other people think they have the right to tell me I have not suffered enough?
I have already made an Advance Decision to refuse treatment if I cannot communicate my wishes in certain circumstances.
Christine Harvey
saysI feel every bit of your pain in watching a loved one be consumed with this terrible disease, dementia. I also feel sad that not being able to look after my husband any more in the family home as he awaits a place in a nursing dementia home. It's not easy letting someone else take over the care of a loved one but I have to say to myself that he is being looked after to the best of their ability. Thanks for sharing your story. Stay strong.
Juliana Blanc
saysThank you Lorraine, for sharing your story, it brought tears to my eyes as y husband is also in residential home and was diagnosed in 2012 and your story just made me lost for words, I hope that the lovely memories you have of your dad will help you cope with your emotions. Take care God bless
Jocelyn
saysHello Lorraine, thank you for your post and heartfelt words about your Dad. Your sweet memories should always be cherished and brought tears to my eyes. My husband is 75 , has dementia, Parkinson’s and ortho static BP. He Has had falls recently, hospitalization and is at a rehab facility. He sounds a lot like your kind considerate dad and is always a gentleman, concerned with others first. It is so hard to see my husband in a bed with a pad, not able to walk, go to the potty or move much without assistance. Hearts are breaking as in your family but please know you have to keep him safe and when that can not be done professionals must be used. May peace be with you.
Vivienne Pilling
saysNobody knows the horrific journey that dementia patients and their families go through
My mother aged 95 was diagnosed in 2005. The journey is still harrowing and I pray that one day soon she will be in peace.