Am I Neglecting Dad? Feel So Guilty.

[Jellybelly888]

My dad isn’t really elderly but I didn’t know where else to post this, I’m sorry. Dad was diagnosed with early onset Alzheimer’s at the age of 63 whilst he was still working as a paramedic. I have 2 young children, plus a baby and run my own business and live over 100 miles away (it’s a 5 hour round trip). Mum took early retirement to look after him at home for 6 years until it was too much and he’s had to go into a (fully self funded) care home.

Dad was the actual best man I could ever have wished for as a father; he was loved by everyone for his sense of humour, kindness, knowledge on how to fix anything (practical or emotional) and he was the best paramedic and he loved his job which he did for 45 years. He gave me and my brother the most magical and wonderful childhood, which was the complete opposite of his own horrible childhood.

He told me early on in his diagnosis that he wanted me and my brother (who works overseas) to live our lives; to enjoy our children, take every opportunity and not be burdened with caring for him and looking after him. As much I know he would hate the thought of me exhausting myself to visit him once every 6 weeks, I feel like it’s not enough. He’s so sad and doesn’t know who I am. I feel like I’m letting him down and neglecting him. I am worried I’ll regret not visiting him enough when the time comes when he’s not here anymore. I am grieving for him because I feel like I lost my dad years ago but he’s still here and it’s confusing.

I ring his voicemail all the time just to hear his lovely voice.

Should I be visiting more? I could but it would be so hard to with my children and baby, plus my partner and business too. I’m so torn.

Sorry for the long story, tea and biscuits for anyone who’s made it this far xx

I am sorry for you OP. 63 is no age to get Alzheimer’s and it must be so hard for everyone.
But your DF told you to live your lives and wouldn’t have wanted you to be so unhappy. You’re doing the best you can, forgive yourself.

Do you drive?

I think you’re doing the opposite. Your dad said he wanted you to live your life, and you are. What a perfect way to honour your dad.

I do.

Thank you. His worst nightmare was for everyone to put their lives on hold for him.

The guilt is so hard though.

Thank you, yes it’s ruined so much for us all as a family. Robbed us of many years with him and robbed him of being a grandad to five lovely grandsons. It’s so cruel.

Your Dad made his wishes very clear to you, and that’s the Dad you loved and adored. He sounds amazing. He sounds like the last man who would have wanted to rub yourself into the ground for him. If you visited him every day it still wouldn’t bring him back xxxx

He sounds like a wonderful man

Your dad sounds amazing. I have told my daughters that if I get to a stage where I don't know them. I don't want them upsetting themselves visiting me.

Thank you, this really helped xxx

Thank you, he’s a diamond 💎

Thank you x yes, this is exactly what dad said too. I wish I had discussed more things with him though. Finer details that would really help now. It was all just too hard and I think I was in denial for a long time.

My mum had almost exactly this with my grandmother and it's really hard. A 5-hour round trip with a baby and two small children while running a business — that's a lot. You sound like you're doing more than you realise and I'm sure your dad is pleased that you have such a full life.

Your rather wonderful dad let it be known that he doesn’t want you run ragged OP, I think you do really well as it is , and would stick with that - it’s clearly what he wanted - what a wise and warm man he sounds ,

This may not be realistic for you, but is there any way you could move closer?

I did this when my dad was diagnosed with dementia (slightly different as we managed to keep him at home, so it meant I could take on some caring responsibilities).

Obviously every dementia/alzhemier patient is different, but I certainly initially felt a kind of resentment/mourning/grief for who he used to be, and what I had lost.

But over time - it's hard to explain - I guess I built a new relationship with the new person he had become (and I know he was the same person really, so I desperately hope putting it like that does not seem offensive). Once I was more able to let go of the unfairness of what we had lost, I learned to really treasure and enjoy the time with him as he was in the last years - different, but still a version of my wonderful dad. In a way we were even closer at the end, I suppose because he needed me more. And I feel privileged to have spent so much time with him.....

But your situation is different and it may well not be possible, let alone desirable, for you to move closer.

I suppose I just wanted to share my experience, tho I am not sure if what I have written will make much sense to anyone.

So sorry for your situation. Wishing you all the best.

Oh OP. Because your dad is the lovely man you have made so clear he is, he already told you, when he still could, what he wanted. You are not neglecting him. You are honouring the man he was, the dad he was, the love he gave you, the wishes he had for you. As a paramedic he saw so much misery and so much impact on families of people with long lasting untreatable health conditions and he absolutely would have meant what he said when he told you he wanted you to live your life.

You have to think about what you are doing for your dad and what you are doing for you. I was fortunate in that my mum was local to me. I visited her every week, sometimes twice and she didn't know me but I visited because I loved her and a part of me wanted to make it clear that she was valued and still a part of the family. The visits were for me, not her.

It sounds similar for you and your lovely dad. You are doing what he wanted when he was able to articulate it and going above and beyond to visit him. The only advice I could give would be to ditch the guilt but I don't know many people who have got through this stage in life without guilt.

You are a wonderful daughter and giving your kids a great example.

I’m welling up reading your lovely tribute to your dad.

What really shines out is that he gave you a wonderful childhood because he knew exactly what having parents who couldn’t or didn’t do that was like. So I have no doubt that when he told you to live your life, he very much wanted you to prioritise your own children. Don’t feel guilty, you are following his wishes; and you are still visiting him even though he doesn’t know you, which isn’t easy as most on this board will know too well. 💐

I am so sorry. Dementia is such a cruel illness and your Dad got it so young.

@Jellybelly888 he already told you he didn’t want you to put your life on hold - he has given you permission to live your life. He loved you very much and this is his gift to you.

Your dad sounds like a wonderful man and he has made his wishes very clear so I don’t think you need to burden yourself with guilt in that sense.

However, if you feel you will have regrets then I would absolutely go more often in your shoes.

Sorry I’ve been away from this thread but I want to thank you for all your lovely and heart warming replies. My dad would be proud and this is what he wanted; us to all carry on without him and enjoy our lives with the foundation he built his family on.

In went 10 days ago to see him on his birthday and it was a sad visit but not the worst one I’ve ever had. I got a hug and a brief hand hold, which is more than I’ve had in a long time. Bless him. I miss him so very much 😢

Thank you for your reply and I’m so sorry to hear of your sad experience with this awful disease too.

Moving closer isn’t an option. I have a child from a previous relationship and I have him 50/50 with his dad, who we only live a couple of miles from so my son can get to either house after school. Also my established business is here which both myself and my partner work for and it is our sole income. Due to the nature of it, it’s not something that can be moved to another location.

My dad would have hated me to move for him and would have been something he would have very strongly objected to. X