New to caring for father with MS - feel very alone

[Catlife]

Female, 35. I had a great relationship with my dad throughout my life but he was somewhat absent. He disappeared about 6 years ago until recently, when I was contacted to say he was very unwell. He had been in hospital for months, alone. He has a diagnosis of MS and has lost virtually all movement in his lower body. Cognitively he has capacity, but he does become very confused and tired easily.

I have immediately taken over everything. Calling and visiting as often as I can - he’s about 5 hours away, so I try to call daily and visit every other week/10 days. I have been trying to find out what happened, what I can do, spending time with him, making all relevant calls and attending assessments etc.

Recently he has been moved from hospital to an intermediate care home bed. It is just awful. I have tried to be understanding and sympathetic towards the reality that I understand, regarding the NHS and care home facilities. However, my dad hasn’t even been receiving basic care. The place is filthy and the staff speak to him in a derogatory way. I have reported all of this on numerous occasions to adult social care and the other relevant authorities. I have recorded everything including images of things I believed to be unsatisfactory. I know he is only an intermediate bed so he will be moved soon. But being somewhere where he isn’t treated well, is really effecting his mental health.

I’m trying to get him moved closer to me and into a care home that would be suitable for him.

I’m not really sure why I’m posting this, but I’m feeling so overwhelmed with everything. I just feel so sad for my dad and so guilty for not knowing that he was so unwell. I am trying my best and know there’s nothing I can do about the past. I just want to make his future as good as possible.

I just feel so alone.

[jthatcher]

Hi Cat’ sorry to hear about your Dad.

To have him moved to a new place closer to you, it might be worth looking into what is available near you then, having a word with his adult social services team. Perhaps come at it from an angle that you would be able to visit and help him more which would also help with his wellbeing.

Try not to dwell on the time that was missed - that’s done and gone - you can now start from here x

Speaking as a Dad, you sound like a great daughter. I dare say that he probably regrets the missed time ( he probably didn’t want to worry you)but, he will appreciate and enjoy every visit and phone call from you. . I’m still at home and,My daughter has recently moved into her own place. It’s nice to see her doing well but, I am looking forward to her coming round tomorrow. There’s always a special bond between a dad and a daughter - that won’t ever change, just let him know that you’re around x

When my situation started my daughter helped me more than I think she knows. One of my first brain lesions was big and, they tell me it caused mass effect and mid line shift which put pressure on my brain.for a while I couldn’t remember her name. I could always be pretty stubborn and, I’ve never liked hospitals. At the time I was a fairly large, strong bloke with brain issues(and quite difficult to handle) and, my daughter was the only one that could control me. She still helps me now - just having her by my side(even from a distance) keeps me in a good place.

Sometimes in a man’s life, something will come along and kick us in the nuts (like This MS) it doesn’t take away our pride and determination but, just having a certain person in touch can drive us along to stay strong and keep smiling.

Be there for your Dad and keep in touch. Things will improve but it may take time.

I do apologise if I’ve spoken out of line at all.

I wish you both all the best

Take care mate x

Jon.

PS: you’re not alone - there’s a great group of people on here with a lot of experiences so, come in and chat any time you want to.

[Catlife]

Oh Jon! Thank you so much. You have no idea how much your comment has meant to me. I’ve been feeling so alone and your reply has really helped me to feel seen and less alone.

It is so lovely to hear that you and your daughter have such a good bond and that you’re able to support one another

Thank you so much for all of your advice - I’m so grateful for your insight. Thank you.

I’m so glad to have the time together with my dad now and I promise I’ll make the most of it. Luckily, his social worker and I are working together to get him closer to me. I’ve made a spreadsheet of the homes close to me which could accommodate him and I’m really hopeful a good one will be able to take him.

I’ll definitely keep coming here for support as it’s made me feel so much better. Thank you so much.

I wish you and your daughter all the best too!

x