My dad has had parkinsons since his late 60’s he is now 87 and has recently gone downhill to the point we could not care for him at home. My mum is his main carer and I live next door. The hallucinations, paranoia and aggressive behaviour was increasing dramatically.
The parkinsons nurse arranged for a hospital admission to assess him so he is on the neurology ward.
As a family we have all been in to visit him regularly but these visits are getting more and more distressing. He is angry, shouting, swearing, fighting, hitting anyone in his way, they are having to restrain him and put big gloves on his hands to stop him hurting anyone and sedate him when he gets too aggressive. He has even started spitting at staff and us when we visit.
The hospital have told us he will be in there for a long while and although there is a terrible feeling of guilt I don’t feel I can put myself through any more visits.
I was hoping someone may have experienced similar?
First can I say how much I feel for you and all your family including your Dad, it is a terrible situation you find yourself in.
Second may I suggest you ring the helpline. It may help to speak to someone totally uninvolved with all that is going on, get their view and some of the resources that may be available to help you and your family.
Finally I have to tell you I have no direct experience of what you are going through but through a varied working life I have worked with a wide range of people including terminally ill, all levels of dementia and advanced stages of many conditions so my comments are based on this which I hope you will feel gives my comments some legitimacy. I am well aware that guilt plays a huge part in all such circumstances and there is nothing I or anyone else can say that will probably alleviate that for you. However if you can - and I appreciate this is extremely difficult if not impossible - you need to try and see what’s happening with some objectivity, to divorce the emotion from the fact. If it helps, imagine you are supporting your best friend through your situation. What would you be saying. In all probability it would be along the lines of, this man is not the father you knew and loved. He is still living and breathing but in all important ways the essence of the man which made him Dad has gone. Your guilt is probably in part anyway, part of the grief process that understands this but can’t acknowledge it because he is still physically alive. I don’t know if that makes sense to you but I don’t know how else to explain it so I hope you can understand what I am trying to say.
Over and above that all I will say is that there comes a point in all these sorts of scenarios when the focus moves from the individual - in this case your Dad - whose needs are being met (you have been told he will be in hospital for a long while) to others involved, namely you and your family and making sure you are able to say to yourselves when the end does come and after you’ve had a bit of time to come to terms with it, that you did the best you could and that somewhere deep inside your dad knew this even if he couldn’t help you see it himself. That is the main reason I would encourage you to contact the helpline, so you can get the right support.
Maybe the hospital can stabilise your Dad so you can feel you can visit again, maybe not. Maybe the guilt or emotion of whatever will keep you visiting anyway, maybe not. Maybe pressure from other family members will prevent you doing what your heart is telling you maybe not. Maybe they will understand maybe not. I can’t answer any of the crucial questions you are probably asking but one way or another you will do what’s right even if it doesn’t seem like it right now. In my experience with the right support most people do come through these impossible circumstances with some peace and able to say they did the best they could. That;s all you can do, the best you can at the time.
I send much love and sincerely hope my words have helped a little. I wish I could do more.
We wanted to welcome you to the community forum, and second Tot’s advice that you ring the helpline when you can. You can reach them on 0808 800 0303, it is free and confidential, and they have a wealth of resources they are happy to share, including various types of assistance in your area, not just for your father, but for you mum and yourself and anyone else dealing with the stress of caring for your dad. Carers deserve help too, and our advisors are aware of that, and equipped to assist in ways you might not expect.
We hope this helps, and we wish you and your family the best,
Such helpful replies, thank you so much. They are trying to treat him with quitiapene but he is refusing it and other meds regularly. They have moved him to a room on his own as the comings and goings of the ward was agitating him further.
I think it has taken us a while to realise how difficult it had become caring for him at home and their is an element of relief for my mum and myself.
I will definitely contact the helpline, I know my mum has in the past.
Thank you so much tot, your response blew me away with such empathy and wise words.