Understanding my emotions after dad's mixed dementia diagnosis: Lucy's story

After her dad received a diagnosis of mixed dementia, Lucy Parkes has felt a confusing range of emotions. Read how she’s learning to accept their ever-changing relationship.

Firstly, let me tell you a little bit about me and Dad.

I am 30 and my dad, Roger, is 81. Our story began nearly three years ago when I noticed Dad was becoming forgetful and confused more frequently.

Dad lives alone and it became clear he was struggling to care for himself. He would go out late at night and not understand why all the shops were closed. He stopped showering and would often be wearing dirty clothes. Incontinence became a problem too.

I took him to see his GP and from there it took a long, 18 months to get the diagnosis. It was only after an MRI that, last September, we were told that Dad had Vascular dementia and Alzheimer’s disease in the moderate stages.

Lucy and her dad, Roger

Lucy as a baby pictured with her dad, Roger.

Getting prepared and practical following a diagnosis

Initially, the news brought a sense of relief. Now we know what is wrong with him we can focus on a cure. Surely dementia is just when old people become forgetful, right?

Unfortunately, this is not the case. The doctor gently told us the prognosis. Vascular dementia was incurable. His symptoms would worsen.

His memory would deteriorate and his cognitive function would decline. We needed to prepare ourselves for the inevitable and the support and care that he would now need.

There is great emphasis on the practical support needed by people living with dementia and their families. This is true, the support is greatly needed as routine tasks – washing, dressing, meal prep – become harder and then impossible to do. But as well as these practical challenges, what about the emotional side of the disease?

The emotional impact dad's diagnosis had on us

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It has now been a year since Dad’s diagnosis and I have felt pretty much every emotion going. Sadness, obviously, especially in the immediate period after the diagnosis when I would switch between feeling ‘fine’ to crying in the supermarket because they were out of avocados (I soon realised that I’m definitely not crying because of the avocados!).

I have felt confusion. Dementia is so complex and every day is different. Dad can be perfectly clear and lucid one day and then have no grasp of what is going on the next.

A range of emotions

There has been a lot of ‘first times’ for us all. The first time Dad asked when he could go and visit his mom, who passed away nearly 30 years ago. The first time Dad confidently told me that he had been on a boat to Bristol, when I knew he had not left the comfort of his sofa. What did I say about this being a complex disease?

I have also felt self-pity. Why him? Why us? I would be lying if I said I have not felt anger and resentment towards my Dad at times too.

These feelings are quickly followed by guilt, which can become overwhelming.

I feel guilty for not being more patient, for not spending enough time with him, for not doing more. I even feel guilty for those times I don’t feel guilty.

Learning to accept the good and bad times

I would like to stress that it is not all doom and gloom. There are still nice times. Times of love, affection, and humour too. Dad can say some pretty out-there things, (note the boat trip to Bristol,) and you have to laugh, because if you do not laugh you will cry. We have done too much of that already.

So, one year on from the diagnosis, I have learned to just accept.

There are going to be good times and there are going to be bad times and I am going to feel a range of emotions. Who would not?

We are still father and daughter but our relationship is different now. I guess the inevitable has happened and the roles have reversed. Dad has changed, but he is still Dad and always will be. He is just going to be a new version of Dad and I need to accept that.

At the end of the day the only thing constant in life is change.

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My dad is 92 with dementia, I had to come to terms that my dad is not the same and I hate him for it cause I lost my dad, but feel guilty for the way I feel. I'm struggling to turn this around because I know it's the disease and not him. I love him for who he was in my life, but not for what the disease has done to him. It's hard to have a relationship with him.
I totally get what your saying my dad is in late stages now woth mixed dementia and even now no two days r the same he is in nursing home and one minute angry agitated doesn't know who we r the next he crys like he has seen us for the first time it's so hard and I could relate breaking down crying anywhere for no apparent reason. One day at a time is all you can do with this horrid dreadful disease. 😘

I was a nurse for years. I took care of people in this state. But when it's your own Father it's so DAMN hard!!!!! I seen it coming but I had no power to get him help,my sister and brother in law has all the say about it. But I do all the care and I don't mind either!!! But I now have a battle of my own I have 3types of lung cancer. I want be able to care for him much longer and my sister tells me not to take my treatments so I can take care of him. She wants it all but don't want to do what it takes to care for him. I LOVE MY DADDY SO MUCH I would die for him just to care for him.

Hi Donna, I'm so sorry to hear of your diagnosis. I think that your sister is being very selfish telling you not to have your treatments so that you can look after your lovely Dad. I am a healthcare at our local hospital, my Dad has mixed dementia and was living between our house and my sister. As we both work long hours at the hospital we were scared that we would come home from work and find him laid on the floor as he has had quite a few falls, sadly we discussed it with Dad and decided to look for the best care home that we could find. Dad now lives in a lovely care home, the staff are all lovely, they do lots of activities. We visit Dad nearly every day and he is happy there. I send healing prayers for your treatment and pray that you get the help that you need for your Dad xx

My mam god bless her, was in her70s when she was diognosed with Alzheimer’s. She’s been left me 5 years and there’s not a day goes by when I don’t think of her.
I watched as this beautiful woman changed practically beyond recognition. Firstly there was anger, resentment on my behalf because this strong lady had been through having four children and a wife with a house to run etc being reduced to someone incapable of feeding herself and everything else this terrible desease brings with it. Unfortunately I’d had to move away having my own problems but although I did what I could I still feel guilty I couldn’t do more for her! She was in a home and I visited as much as possible, often wish I could have looked after her but it’s not an easy task. She ended up with leukaemia too so sad ….. my only wish is she didn’t suffer too much ! It’s an awful thing dementia maybe one day a cure??

Hello everyone,
My dad is 77 and was diagnosed with advanced dementia in June and is currently in hospital waiting for placement in a nursing home. 😞He has deteriorated so quickly in the last two months and in that time my sister also passed away from terminal cancer, so it has been hell for us lately. I am angry and sad everyday and also feel the guilt of not being there enough and for not pushing him to be diagnosed sooner. And I am angry at the drs who provided no support during the months between the initial diagnosis and now. I hope everyone has strength to deal with this horrible disease and it’s nice to know what I am feeling is normal .

Hello Lisa,

We're really sorry to hear this. It sounds like you and your family are going through a very difficult time.

If you ever want to speak to someone about your situation, you can call our Dementia Connect support line on 0333 150 3456 for support, information and advice from one of our trained dementia advisers. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps, Lisa. Please know that we are here for you.

Alzheimer's Society blog team

Oh Lisa I am so sorry for your loss and for what you are going through with your dad. We are in a similar position, my dad was diagnosed with mixed dementia on the 15th December 2021 aged 83 after 2 years of him not wanting to know. We had to take the car off him, this seemed to be downward spiral. He had a TIA on Boxing Day 2021 and we took him to hospital they did tests and discharged him, on the 30th December he had an episode of not recognising me and mum and saying we were scamming him and robbing him, mum was in a public place and he reused to go home with her, he walked to the customer service centre and demanded police and ambulance. In hospital they identified he had a chest infection hence the massive decline. He’s been in hospital ever since as we want a care assessment and after nearly 4 weeks they are trying to find a home for a discharge to assess as my mum can’t cope. No visiting is impossible as he doesn’t understand, he won’t accept he has dementia and thinks we’ve abandoned him it’s heart breaking! I’ve cried, felt so guilty for demanding a care assessment, I’m annoyed I can’t visit, I’m so angry that I lost him without being able to say goodbye properly, I’m angry that it takes so long to get him placed and my fear is the trauma of the hospital he will remember and remember I kept him there. You have to be so hard to survive all the emotions that part of me feels broken.

Thank you For sharing. In a very short space of time I have seen my incredibly clever vivacious, laugh out loud scamp of a father become a shadow of himself as this disease grips him quickly. I mainly feel guilt. That I have not been there enough and that now I have rare times to
Tell him how I have hero worshipped him
My entire life. I’m angry that he is now this person at a relatively young age whilst he is
Fit as a fiddle bit trapped inside this confusion. And my heart is breaking for us all as we lose this magnificent man before we actually lose him. I have read and read about the condition and I am still struggling with my feelings.

Hi Rachel,

We're very sorry to hear about your father, it sounds like you are going through a difficult time.

You might benefit from joining our online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive support from others who are going through similar situations: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

You may also like to read our blog on guilt and dementia, which contains advice on how to manage guilty feelings: https://www.alzheimers.org.uk/blog/guilt-dementia-how-manage-guilty-fee…

We hope this helps, Rachel. Take care.

Alzheimer's Society blog team

My dad is 86 and has recently been diagnosed with vascular dementia and Alzheimer’s disease. He seems to be deteriorating very quickly . I live so, far away that I only get to see him about once a month especially during covid where restrictions have prevented frequent visits. I sa him on the weekend and I felt my heart break as he was so thrilled that he had remembered the pet name he had for my son when he was born. My son gets married this week and my father wanted to write a card with this detail on it but he struggled with the spelling of my sons name. My dad is highly capable with a prolific vocabulary and he couldn’t manage to spell Charlie. I know this is such a small thing in the grand scheme of things but this was the first time it really hit me hard that his life is changing so quickly. I’m so sad that I know I’m going to lose him to this illness and I have to make the most of e dry moment I have left but I’m heartbroken to see the strong, capable, formidable man I know and love turn into such a simple childlike soul. He is so thrilled to see me and desperate to hug, after months of having to distance, he doesn’t want to let go.
I’m so sad i can’t begin to explain how I feel.
My heart goes out to everyone going through this, I had no idea of the emotional impact of the disease and I felt I was well informed.
The wedding might well be the last thing my father can attend and enjoy so I will treasure the day and the memories we make together.

Amanda, it sounds like a very emotional time. We'd recommend speaking with one of our dementia advisers by calling the Dementia Connect support line on 0333 150 3456. (More information about the support line, including opening times, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line)

You may also benefit from talking with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or create an account to reply and connect with others. You may find similar situations to yours and your dad's shared there: https://forum.alzheimers.org.uk/

Please do call the support line on 0333 150 3456 if you need to speak to someone during this challenging time.

Alzheimer's Society blog team

I’m very sad as my lovely dad today received a diagnosis of mixed dementia. My mum and dad are in their 80s and have been married for 60 years so she’s taken it hard. He has suffered several mini strokes. He experiences a lot of deja vu and short term memory loss. We are still in the early stages and medication is being prescribed to help delay the progression. He is a wonderful man and will always be my dad no matter what the future brings. We will love and care for him come what may.

Hello Kathryn,

Thanks for getting in touch. We're really sorry to hear about your dad's recent diagnosis. This must be such a worrying time for you and your family.

If you've any questions, we recommend speaking with one of our friendly advisers on 0333 150 3456. They will listen to the situation regarding your parents, and provide information, support and advice: https://www.alzheimers.org.uk/dementia-connect-support-line

You may also benefit from talking with other people who have been - or are currently going through - a similar situation to you. Our online community, Talking Point, is a place for people and families affected by dementia to share their experiences and provide peer support: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

In the meantime, we do have further information about mixed dementia, in case you haven't already seen it: https://www.alzheimers.org.uk/blog/what-is-mixed-dementia

We hope this is helpful, Kathryn.

Alzheimer's Society blog team

I don’t know if this is allowed but my mum is 79 and has had her diagnosis now for about 8 years..fortunately it’s been slow. But just over the last year with losing her husband and all the loss of routine that Covid has bought she has declined quite a bit faster. Still not to bad. She knows us all. And is a happy soul. Not that bothered that she doesn’t recall a conversation or remember what she had for breakfast. But over the last 8 or 9 months I’ve done some googling and came across Mary Newport, a dr who’s husband was diagnosed with early onset dementia. Long story short she discovered that coconut oil and mct oil slowed down and even reversed her husbands dementia. I researched more and thought nothing to lose to add a little coconut oil in mums diet. We’ve seen benefits and I wouldn’t like mum to not have her coconut oil and mct oil daily now. I think it’s worth a further look

Hi Michelle,

Thanks for getting in touch. 

Some alternative therapies might benefit people with dementia by treating the conditions related to dementia, such as sleep problems or agitation.

There have been claims that coconut oil could be used as a treatment, or even a cure, for Alzheimer's disease. However, there is currently not enough experimental evidence to back up these claims. You might benefit from talking to the GP about this. In the meantime, we have some information on coconut oil that may be of interest: https://www.alzheimers.org.uk/about-dementia/treatments/alternative-therapies/coconut-oil-and-dementia

We'd also recommend calling our Dementia Connect support line on 0333 150 3456 to speak to one of our dementia advisers. Our advisers can listen to you and give information, advice and support relevant to your situation. More details on the support line, and other methods of contact, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might benefit from joining our online community, Talking Point. This is the ideal place for carers and other people affected by dementia to share their personal experiences, and offer advice and support to others going through similar situations. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk

We hope this is useful for now, Michelle. Please do talk to the GP, or call the support line for more information and advice.

Alzheimer's Society website team

Hi , My Dad has mixed dementia..he was diagnosed in August 2018..6 days after diagnosis..he developed sepsis, & bowel obstruction..Dad was on end of life care..we were heartbroken...however he made a massive recovery.. unbelievable..Dad is in a care home, because Mam cannot manage him at home..Dad is there sometimes, but other days he isn't..it so hard & Dad doesn't really know what's up with him..He also has recurring lymphoma..just so hard..

My Dad is in the early stages of alzheimers and vascular dementia. He is a little bit forgetful and confused at times but seems OK. What should I look out for please. Never experienced this before. Thank you.

Hello, thank you for your message. It can feel overwhelming when someone close has a diagnosis of dementia. I can hear how useful a local contact would be in supporting both yourself and your dad. Local Alzheimer’s Society can offer support through Dementia support workers or advisers in certain areas, please click on the following link: https://bit.ly/2jOsSLT

You mention that your dad is a little bit forgetful and confused at times. It may be an idea to find out how your dad feels and what support he may find useful at this stage. The dementia guide: http://bit.ly/1S5iCLL and the Memory handbook: http://bit.ly/2lplSDx are useful to look at together when someone has received a diagnosis.

Alzheimer’s and vascular dementia is the most common type of mixed dementia. Often someone will have a greater amount of one type of dementia than another. You can find further information on the different symptoms at the following link: https://bit.ly/2QeEfi4

I do hope this has been of some guidance; if you would like to, please do get in touch with the helpline to speak to an adviser at the following link: https://bit.ly/2KbAbsl.

Best regards, Helpline team (Alzheimer's Society)

My dad had the same illness, and I know exactly how you are feeling . Keep strong as a family , and take every day as it comes . My dad changed so much so it was hard him and also hard for us . Sending love to you ❤️

Sending love to you and your Dad thanks for the humour.
My Mum is 3 years in with the same diagnosis. We have had many first times too. Like the time she saw Princess Diana on the high street and the time she was convinced a famous actor was her boyfriend. You do have to laugh but I feel your pain too. Hoping for more good days than bad for you x

My dad has Vascular dementia. Hes now in a home as I work full time and it was too much for mum. He would sleep all day and not settle at night wanting to go home - even though he was already home. Its hard putting him in a home but dad is settled mum is no longer scared in her home and I feel guilty every day that I couldnt look after him.

Thank you for sharing your story. I recently lost my dad at 80, after an 8 year battle with Dementia with Lewy Bodies. I’m 28, so I feel like I never really got to know him as an adult because I was too busy growing out of my obnoxious adolescent phase when he was diagnosed. There are so many emotions we experience as caregivers throughout the course of the disease, guilt, regret, anger and loneliness have played the biggest parts for me. Well done for being strong and sharing your story, to remind the rest of us that we’re not alone.

At the end of the day the only constant thing in life is change. I told my daughter that the other night. Xxxx. We found out 2 month ago my mum has mixed dementia and ur story gave me a little atrength. Xx good luck to you and your dad