Dementia Support Line
Real stories
Life during lockdown: ‘I can’t wait for this to be over so I can hug my dad again!’
Alex’s dad, Dave, was diagnosed with early onset dementia eight years ago at the age of 60. Alex reflects on how her dad came to terms with his diagnosis, and how the coronavirus pandemic has affected their relationship.
‘She will keep you young Dave’, my dad was told when he found out he was going to become a father again for the third time at 42. I don’t think anyone was expecting him to be kept quite as young as this.
Dad met my mum, Lynda, in 1971 and they married in 1975. They had a happy marriage. My brother, Arron, came along in 1979, followed by my sister, Natalie, in 1982. Just when they thought they were done with kids, in 1993 I decided to make a surprise appearance! Three children born in three different decades; they must have been mad!
My dad is now 68 and has the mind of a child, body of an older man, but the heart of a lion.
Changes in dad
I was 19 when my dad was first diagnosed with dementia, aged just 60. He was a successful engineer with his own company and worked all over the world. Intelligent, an avid sportsman, a great husband, and an even better father.
We noticed that dad was making a few mistakes at his work and his speech was ‘off’. Doctors first suspected that he had a brain tumour from the symptoms but after numerous tests and brain scans the news that we never expected to hear came back – he had early onset dementia and progressive aphasia (which was affecting his speech).
I didn’t understand – my dad wasn’t old? Dementia is a disease that affects old people, right?
The next couple of years were a bit of a blur. We tried to carry on as normal but there was an elephant in the room. My dad was becoming harder to understand as he slowly deteriorated.
The worst part of the process was how embarrassed my dad was and how much he tried to hide it at first. He had always been a proud man, and the term ‘one of the lads’ fitted my dad’s personality. He loves watching and playing sports. He loves cricket and is a massive Manchester United fan – he has never missed a game. He used to enjoy socialising in the pub with friends, and he was always the one cracking jokes.
He had a great job, a great social life, and was the man of the house. He worked hard and made sure his family were taken care of before he did anything for himself.
I know there is no such thing as perfect, but if there is such a thing as the perfect father, I would say it was my dad.
Coming to terms with dementia
Once my dad stopped being embarrassed and came to terms with what was happening to him, he started being honest about his condition and stopped living in fear of someone finding out.
I’ll never forget the first time I heard him tell an old colleague about his diagnosis when we bumped into him in the park: ‘I have that dementia now me’, he struggled to stutter. I remember at that point I had to pretend to tie my own shoe whilst I quickly wiped away the tears flooding down my face.
After my dad stopped working and he had his driving license taken off him, things started to change quickly, almost overnight. The journey from diagnosis to where we are now feels like a fog and I can’t remember how we ended up here.
Dementia has a chain reaction – it doesn’t affect just the individual diagnosed, but the whole family. It’s been hard on us all but one person it has been really hard on is my mum. I can’t imagine how difficult it has been for her to watch the man she fell in love with over 45 years ago disappear in everything but his physical presence.
Daddy’s girl
I’ve always been a daddy’s girl, the apple of his eye when I was growing up. Seeing the man who you once relied on so heavily struggle to speak, dress himself, and live in a constant state of confusion is heart-breaking. I dread the day he forgets who I am.
I feel angry, but I have no one to direct my anger towards. I feel robbed. I am just entering the prime of my life now and my dad may still physically be with me but the man I grew up with is gone.
My dad may never walk me down the aisle, my dad won’t know my children, and my children won’t remember my dad.
The funny thing about dementia is that memories are what the person is struggling with, but memories are all you have, and you are constantly trying to create more, even if they won’t remember them, they are what you cling on to.
My dad still goes to every Manchester United home game, he loves dancing and if you put the Beach Boys on for him, he can move and grove like he is back in the 70s. Seeing my dad happy is my family’s main priority. We know we don’t have much time, so we want to make sure he has the best time possible.
Coping with the coronavirus lockdown
My mum, brother, sister and myself are all carers for my dad now. In our own individual ways, we all help him remember the man he once was and keep on creating beautiful memories with him.
Since the country’s gone into lockdown because of the coronavirus pandemic, things haven’t been going well. My dad is stuck in the house with my mum and my mum won’t let his carer visit to support him as my mum is at high risk of illness herself.
My dad says that ‘every day of my life is lockdown since the dementia – I haven’t been able to go out on my own or drive for years!’
My dad struggles to use the phone and he can’t really use FaceTime so it’s hard to communicate with him without being face to face. He’s used to seeing me and my siblings every day usually.
At first, he was scared, and he was panicking saying he was going to die from coronavirus. He also started hallucinating and talking back to the news readers on the TV.
Over the last few weeks this has thankfully calmed down. It seems now all he is missing is his independence and his family, but we are all doing our bit, dropping food round when we can and ringing him daily.
It was my birthday last week though, and he turned up at my back door with presents which melted my heart as he actually remembered. I had five minutes to catch up with him through the window which was lovely. He still asked for a cuddle and the look on his face when I had to tell him we couldn’t was heart-breaking.
Hopefully things will be back to normal in a couple of weeks and we can have a family get together. I can’t wait for all of this to be over so I can give him a big hug again!
Life during lockdown: Your stories
If you want to share your story about how you're coping with the current lockdown, or you want to share your ideas with others, we'd love to hear from you.
- Take a look at coronavirus advice from Alzheimer's Society for people affected by dementia.
Gill mullins
saysBeautiful words Alex xx hope you are doing well really proud of this column you should be really proud xxx
Debbie
saysAlex. It's beautifully written and heartwarming. My husband is 70 with Alzheimers but we have an 18 year old son so a lot of your story resonates with me. Thank you. Much love x
Christine Grant
saysI know what you are gping through. I too am looking after my husband who was diagnosed with Alzheimer's 3 years ago. He finds it difficult to express what he means and I have to second guess a lot of what he says. It's a terrible disease and like watching someone you love slowly dissolve. We are lucky enough to have a big garden during this lockdown and he still enjoys doing a bit of gardening.
Debbie
saysChristine. Absolutely the same. My husband ages 70, diagnosed 3 year's ago. Lots of second guessing but also lots of gardening 👍. Love Debbie xx
Susan Pryor
saysYes I hear you - I too wonder 'how we ended up here'. My dad died in the middle of lockdown ... aged 90 he had had a successful life, a school principal, farmer and fascinated with science and nature he was a great dad and devoted husband...an intelligent man with a brain that in the end tricked him ... I was there when he died ... dad I wish had been at home those last two weeks but he was in lock down in a care facility - it is my greatest sadness ... seeing him and reaching our hands to the screen ... he had no idea what or why this was happening ... yet I believe in this we can grow in strength and empower each other if we have courage to believe in and take responsibility for change... https://www.stuff.co.nz/national/health/coronavirus/120998698/coronavir…
Ronald Simpson
saysHi . Alex . I know the feeling my wife was diagnosed in October 2018, l cared for her for 18 months before it was decided I needed a break ,so Christine was admitted for respite, during this time we have the pandemic and I am unable to see her witch is breaking my heart,after 57 years of marriage it's hard to cope with. Hopefully when the lockdown is finally cleared you and I can resume our normal life and care for our loved ones in a way we only know and you will hug your dad, and I will have my wife back to care and cherish for however long that may be. R. Simpson. God Bless.
Debbie Byford
saysDear Alex, my heart goes out to you. My Mum has had Vascular Dementia since 2015 and last week we found out my Dad has Mixed Dementia (Alzheimer's & Vascular). All I can say is that over the past 5 years with Mum, we have had up's and down's, huge laughs and tears and I will cherish all those memories, even when sad. Do the same sweetheart, I have a "treasures" book with memories of my lovely parents. Your Dad is lucky to have such a beautiful, caring daughter - he may not always realise it because of his condition, but don't stop what you are doing - it makes a massive difference and you will look back and have no regrets. Just remember, you are not alone and those of us going through the journey with our loved ones will always understand. Debbie x
Nanette
saysWhat a lovely story to read. Thanks for sharing your experience. Stay safe and well and we hope this pandemic will be over.
Joy
saysThis was one of the best blogs I have read Alex. You wrote it with such eloquence, feeling and love. My husband died just before our country was hit by this dreadful virus. When I say I am truly grateful that he passed away when he sadly did, I mean it in the kindest way
He had already lost his reading ability, and worse of all had lost his power of speech and I just did not want him to carry on any longer. No matter how hard we tried, he was no longer interested in anything. The only thing which would make him smile happily was when I walked into the room which was truly wonderful but that was all. Until he died, I did not realise how angry inside I was about everything, which I realised whilst I was with him at the end, was all in aid of the wonderful man I loved with every bit of my being. He had been a well educated man who was kind, loving, interested in everything, loved our children and was a man who would do anything for anyone, had a good life was a keen Rotarian etc. etc. I was angry and became angrier and angrier as he get worse and worse. He did not deserve this cruel disease but then nobody does. To see the love of your life, uour best friend, your children's father, your grand children's Grandpa, go on this appalling journey where he would loose absolutely everything of himself - day by day bit by bit and there was absolutely nothing you could do about it was soul destroying to all of us. It then occured to me, literally seconds after he had gone that thankfully he had come to the end of his dreadful journey. He was at peace, he could no longer be plagued by this appalling illness. Suddenly, I could almost feel the anger going out of my body and realised, that I too could now be at peace. No more worry, no more watching this lovely man not being able to do anything or take part but just had big hugs and gave me a beautiful smile. He was able fortunately to have a "proper" funeral where he was spoken about and grieved for properly as the virus had only just then started and we had the normal get together with many tears but also with much laughter of the great fun he had always given us
We gave him the lovely send off he so richly deserved. Me? Of course I miss him dreadfully and wish he was again by my side, but as a well man, not with Dementia, which was extremely cruel to watch and deal with. I would not wish that on anyone. I do feel that all the anger which was inside me was a form of intense grief. I feel so much better, I talk to my husband each day and almost hear him laugh when I do something stupid so although alone, I am not really, he will always be with me in my heart and that alone is amazing and I am therefore, able to cope much better than before.
Chin up Alex, you too have to go with your Dad for as long as his journey lasts. Keep seeing him and give him big smiles and hugs again and keep talking to him and finding interesting g things to show him as often as ever you can when this crazy world returns to normal. Your lovely Dad will always stay in your heart with you on your journey through your own life, he will never leave you - my Dad never has. Much love and thank you again for your truly wonderful blog xx
Jayne
saysWhat a wonderful blog about your dad. I too had the most perfect daddy he was 91 years old and had dementia and after losing mum so very suddenly 5 years ago this Saturday we managed to keep dad safe well and happy in his own home with this best friend Chico the dog. We ran it like a military operation and everything was in place each and every day for dad. He loved to see his family his eyes lit up when you visited and if you had sweets with you for him he was even more pleased to see you ! He was an amazing man. Strong, good looking, very particular about how his hair looked and oh so very kind But this morning my 2 sisters and brother said good night god bless to him at his "funeral". Coronavirus robbed us of giving him a wonderful send off with only 4 of us able to be there but goodness me are we going to have one very big celebration of his life when we can all get together. I was petrified dad would get coronavirus which thankfully he didn't - he was tired and ready to go to mum but those hugs and words I love you will be treasured for a lifetime just like all the memories we made with him right up to the very end. Knowing that you have given every ounce of energy to repay a very small amount of what you owe to your darling daddy is comforting but oh how I miss his cheeky smile his sparkling blue eyes and him calling me his angel because now he is mine.
David Purser
saysMy wife Pru has had dementia for about 15 months and was getting worse all the time. Then she got coved 19 and since then she has spiralled out of control, she is not eating and she is on a broad spectrum antibiotic but she is not getting any better but getting weaker and weaker. I am not allowed to see her and as we have known each other for sixty years it is very hard and life is an absolute nightmare. I have never been so miserable in all my born days.
Claire ashton
saysHi David, I’m so sorry you feel so miserable but very understandable, I know what you are going through. I hope you have family to reach out to for support. Look after yourself as Pru will need you for when she comes home to you. Take care
Miller Caldwell
saysWhat a wonderful story. So good in fact I suspect you are an author like me. Aged 53 I had to retire from work as I had mild cognitive impairment. Aged 69 and three quarters I know its getting worse and knocking on dementia's door but suddenly I found my last two books, A Reluctant Spy and Caught in a Cold War Trap have been optioned by ARTE the film company. I tell you this as my mother-in-law has dementia and my wife reads these books to her over the telephone to her care home. As both books are set in history, she is able to understand them. She is 96. Well, that's my world. Best wishes Miller
Lynda brown
saysMiller my daughter is not an author but she did study English at college she is just a very sad person who is struggling to come to terms with what is happening to her dad. She is the youngest of 3 and feels like she has been robbed of her dad. I think you’re comment about her being an author like you will have really made her feel good because she has always written stories. Thank you for your comments. Lynda brown
Maureen Barlow
saysHi Alex, although we have yet to meet I have heard all about you from Natalie, my daughter & Dave. My heart goes out to you and what you and your family are going through. My dearest friend Lavinia developed Alzheimer’s and it was so sad to see the deterioration to a woman with intelligence, humour and love and I have fondest memories of our endearing friendship. It is so sad to be unable to stop the onset of this terrible Dementia and Alzheimer’s. All we can do is to be there for them, love and care for them and somehow through the mist, hope they know how much we love them.x
Robert Bentley
saysHi Alex wow what a read I know your mum and dad personally they are both great people. You brought a tear to my eye especially when you mentioned Dave accepted his diagnosis and you had to tie your shoe lace. I used to call round to see your mum and Dad every week way back in the eighties as their insurance man and became good friends. The last time I saw them was about 6 months ago in the Harrows they had come out to watch my band. Your mum and dad used to be big fans of my old band Alaska great times. So sad about your dad he is a great guy please send on my regards and love to your family x Rob Mr insurance man 👨😜
Lesley Holland
saysAlex, your dad David might struggle with speech these days but at the mention of his family he wears the kind of smile that speaks volumes. He is quite rightly so proud of you all. Keep strong for each other in support of your wonderful parents.
Bev O'Connor
saysThank you so much for sharing your story, Alex. Your dad sounds very similar to mine, diagnosed at 60, now 66. He is also like a young child with a lions heart, what a brilliant description. Sending love to you all Xx