Struggling with Dad's deterioration

This is my first post. I am not sure if anyone will read this but I thought maybe just typing out how I am feeling might help a little bit, so here goes. I am a 36 female, I have been a carer for my father with ms since I was 15 years old until 4 years ago when dad had to go into a care home as his condition deteriorated and I was not able to provide him with the care he would now need. He needed 24/7 nursing care and the care home could provide that. Within the last year dad’s condition has deteriorated further, he is now bed bound, nil by mouth with a permanent feeding tube fitted. Hospital admissions have increased due to chest infections. His short term memory is shot and his speech is barely understandable. He is only 61 years old. I am really struggling with how unfair this is on him. I go to visit dad and cry in the car after each visit. At night I worry and panic about him. I wish I could do something, anything to help him and make his life better but there is nothing that can be done and I feel incredibly useless. For years I have tried to put things to the back of my mind and stop myself from getting emotional or letting myself think about how unfair his reality is and this might sound incredibly selfish, I feel as though MS has robbed us both of a normal father/ daughter relationship. Recently I just can’t compartmentalize this emotions anymore and I end up crying every time I even begin to talk about dad. I wondered how others deal with the emotions that keep surfacing no matter how much they try to bury them?

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I’m writing because I didn’t want you to think that we’re all just ignoring you. You’re in a difficult position, and the best I can offer is to get some counseling. Not necessarily a psychiatrist, but just someone you can talk to about everything.

You were handed a lot of responsibility at a young age, and that became your life. As hard as it must have been, that’s what you were used to, so regardless of how your life has been for the last 4 years you lost the comfort of that old routine. That alone would cause a sense of loss and grief.

Add in the fact that you love your father, and that loss is even greater. When you see him, your mind is full of everything that was, everything that wasn’t, everything that won’t be. It’s too much to try dealing with it all on your own.

The fact that your feelings are normal doesn’t solve anything. Keep reassuring yourself that you’ve done all that you can do and that your dad is in a place now that can provide the care that he needs at this point. What you need to do is find someone who can help you work through the feelings of loss. In the normal course of life, fathers take care of their daughters, not the other way around. No matter how unintentional, you were robbed of your childhood. That’s part of what you’re grieving now, and I think it’s going to take an experienced professional to help you work through that.

Please keep chatting with us here. We’ll help all we can.

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Thank you so much for your reply. I really appreciate you taking the time to help me.
I was considering trying to get some form of counselling to hash out these feelings and losses and hopefully with some guidance I can overcome them. It’s just been such a rocky road full of ups and many more downs with regards to watching a parent deal with the unforgiving illness that is MS. I really didn’t know where to turn but I am very grateful that I reached out here and received your response, it means a great deal to me. Thank you so very much

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Hi I have no words of advise but just wanted you to know you are not alone and I completely understand. Im in my 40’s and my mum was diagnosed just before I was born so I have only ever known her with this illness. I’ve watched her deteriorate and had to deal with so much and I also had to provide care for her. I am lucky that my mum is at home with my Dad and has carers come in but she has been bed ridden for years now, only has use of one hand and her eyesight is going too. She is in her mid 70’s now. I can’t remember the last time she was not in bed or got to be outside. My Dad has suffered with depression for all my life living with my mums illness and it’s just brought a lot of sadness to everyone. I know this doesn’t help but I understand that feeling as with any long term illness of a family member you just get forgotten about and no one really sympathies because they don’t understand and don’t really know what you are going through. To watch a person you love so much suffer just seems so unfair. I struggle with the fact that it will never get better she just lives in this world of loneliness. Counselling would be a good idea as it is like suffering grief everyday but without the end to it and any understanding from anyone else. I live with it everyday like you do and it’s so hard but you must live your fullest and do whatever you can to try and be happy as I’m sure that is what your Dad would want. I try to always think how lucky I am to be able to do the simple things which most take for granted but when you see them taken away from someone it makes you realise how lucky you are to be able to do the simplest things like walk outside in the sunshine or make a cup of tea. Sending hugs to you x

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First, @WeeHels welcome to this forum. I am relatively new myself and can say that after reading many of the topics and posts that this a very safe place to be. Getting things off your chest is a great place to start and you will see that there are many shared experiences.

Whilst my dad hasn’t got MS he has dementia and seeing him deteriorate brings me to tears. I had a strained relationship with my dad as a teenager and only as adults did we become father and daughter. I feel like you robbed and a great sense of loss.

Like your dad, my dad has short term memory loss, so when I visit I play dad songs that he used to like, the downside is that I end up trying to sing them and very badly at that :joy:. On a positive, the upside is that Dad will try and join in, just a few broken lines but it raises a smile.

Just to add if you need to cry, cry… you are human after all. You sound like a wonderful daughter, all the care and love you give, you are a real superwoman. Take care, remember to look after yourself :blush:

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