selfish

[nearlyemptynes]

This is going to sound really selfish. My dad has Alzheimer's, middle stages. I am grateful to still have my dad here, many of my friends have lost their dads and would give everything to have another day with them. Now here is the selfish bit, I feel like he is still here but not the same and I can't grieve because he hasn't gone but I get waves of grief. Then I feel guilty because its like i'm wishing him gone. Any thoughts.

What you are experiencing is completely natural. You have lost your DF. The DF you knew I'd gone and grief is a very normal reaction.

My DMIL died from Vascular Dementia and we said all along that it's like losing her twice. Once to the Dementia and once when she dies.

Look after yourself @nearlyemptynes and allow yourself to grieve for the DF you had

The person who was my mum died long before her physical body died. I grieved everytime something else went - when she could no longer read (a massive part of her life), when she couldn't name me, when she couldn't give her own name, when she started spitting food - so many things it was like death by a thousand cuts.
When she physically died I was upset, but nothing like if she hadn't had dementia or even if maybe her dementia had been about losing new memories but others were still intact.
My sympathies are totally with you

It's totally normal to feel that way. I work in dementia and those people I care for are not the same people I knew before dementia. (Small town and I have known some of my patients for years. One even babysat my husband). The people they were is not who they are now. Dementia is not just forgetting parts of your life, it's often huge, nonsensical changes and new unreasonable and strange behaviours and attitudes. The sheer violence I've seen from a teeny tiny formerly 'sweet as cherry pie' old lady would turn your hair as grey as theirs.
Dementia is one of the cruellest diseases/conditions known to mankind. I'm really sorry OP. Your dad is still there in part, and he will take great comfort in your smiling face. He'll feel the love coming from you even if he sometimes cannot understand why or who you are. Give him big smiles and you will see glimpses of him from time to time.

I’m so sorry OP.

I am the same with my father. Who he was has gone. When he dies, I will just feel relief for him and for us.

Its so cruel, dementia is fucking awful.

Thank you all for your kind messages. I knew the answer already really but it is so nice to hear it from someone else. My dad was always the strong one, the one I looked up to. So hard to see this the other way around. My three children are really close to him, and are really good with him, they are 14, 17 and 20. But I am supporting them too. Sometimes I just feel lost amongst it all.

It's completely normal to feel this way. It's heartbreaking.

My dad who was totally competent passed away In Sept and my lovely mum was left in a care home, sad and confused.
she passed away in February.

I often wonder what would it have been like had mum died first…..Dad was struggling with her dementia and would he have begun to live a little?

I totally understand you op. X

I'm in the same position, I feel guilty as my DF is in a care home and I don't go and see him as often as I should as it is so painful to see him like this. He is doubly incontinent, can't really communicate and only sometimes appears to recognise me. He would be mortified if he knew the state he was in but I guess it's a small comfort to know that his reality is vastly different from ours. Don't know if this makes sense but just wanted to let you know that the way you feel is justified. It's a horrible, cruel disease.

I don't think that's selfish. My grandad died with pretty severe dementia and to be blunt, towards the end no one (including his wife) was grateful he was still around. For his sake as much as anyone's, if he'd been aware he'd have hated it - the only saving grace is that he wasn't.
My grandma called it a slow bereavement.

Dementia is hideous, I'm so sorry you have to deal with it OP.

My DF has vascular dementia I completely understand how you are feeling. I feel guilty leaving him in the home and cry everything I leave, sometimes I even manage to wait until I'm in the car before I cry. He has been in a home since January and I feel immense guilt that we just couldn't cope but he was aggressive and becoming dangerous to us and himself. Logically I know we had no choice and we have no control of the situation. It isn't called the long goodbye for nothing, I feel like the last few months I've supported the rest of the family through this, navigated the care system and fought his corner for him. But no one has asked how I am, I just have to listen to how it's making them feel. It is an incredibly lonely position to be in.

My Dad too is in a care home and has a diagnosis of dementia. It’s been said but it’s just such a cruel disease to have. He’s doubly incontinent and recently his behaviour has deteriorated. He’s been pushing, shoving, spitting, shouting and swearing at carers.

As I’m an only child I’ve often wished I was part of a big family to share the emotional worry I go through. My mum is still here but I don’t like to stress her as she’s getting on in age too. It is a lonely place to be.

Your feelings make perfect sense OP.