Stage 5 Parkinsons-Hospital admission

Hello,
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?
Thank you :slightly_smiling_face:

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Hello Mermama
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.
Tot

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Hi Mermama,
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,
Jason
Forum Moderator

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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.

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Hello, I would just like to update for the people who took time to read my initial post.
The last 6 months have been such a rollercoaster for us as a family but I can honestly say the nhs care both in hospital and the care home has been wonderful for my dad.
After weeks in hospital with very aggressive psychosis they tried my dad on quitiapene, in increasing doses which didn’t seem to work at all, and then Clozapine, again in increasing doses which did work. He was calm. Visits were easier for a good long period and he was then moved to a care home for assessment of where he needed to be.
Unfortunately after a week or so in the care home his blood monitoring on clozapine came back with dangerously low white cell count and they had to stop treatment.
After this time his behaviour escalated again and visits became harder, he was then put on aripriprazole which is another anti psychotic with limited sucess in parkinson’s dementia psychosis.
We continued to have contact and support from the hospital neurologist and the care home GP’s were brilliant too.
Alongside this the speech and language professionals decided his swallowing had worsened and was now even more at risk of aspirating food and choking so he was put on a pureed diet. During calmer times he got so fed up of this (he always loved his food-especially sweet stuff!) he went on to refuse to eat. The care home quickly got this reassessed and he was put on a soft diet and started to eat again and perk up. He settled into the care home and although the aripriprazole was not as good as the quitiapene had been, we had good and not so good visits. The staff were fond of him and we got to know them and the other residents.
About a month ago he had a dip where he stayed in bed asleep, and had reduced levels of consciousness, then the next day he was brighter. This happened again in the same week lasting longer the second time and they started to prepare for end of life care, we met the hospice nurse and they were unsure what was causing the dips.
He perked up again after this, and seemed to improve generally all round. He was eating better and calmer.
Last weekend he had another dip, we noticed he felt hot this time and very quickly and peacefully he passed away. He just slept. We are sad and relieved it is all over for him now and it was quick and peaceful at the end. We have been in a state of grief since he went into hospital and the last 6 months have been very tough. He was 87.
Regarding the financial side of things, as his condition in the care home kept fluctuating, this delayed the assessment for continuing healthcare funding, and after the initial 6 weeks of free care he continued to be free until he was well enough for assessment. Which was supposed to be today. We felt he definitely qualified for continuous care, but we will never know now and it is one battle we didnt have to overcome.
I know everyone’s experience will be different, but hopefully this helps someone else at crisis point. I really want to reassure people that when the caring role gets too much there is help and although difficult emotionally, we just could not offer the 24 hr care my dad needed.
I have found comfort and reassurance from this forum and also the helpline.
Best wishes to everyone :heart:

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Hello mermama
I was saddened to hear of your father’s passing and can appreciate how challenging the last few months have been but it was nice to know that you were well supported and that all involved did their best to help him through the various changes in his condition. I am sure your post will give others reassurance that is so needed and I thank you for taking the time to post your experience when your own loss is so recent. As you say at the moment you have that strange mix of relief it is over and sadness that your father is gone. In my initial reply to your post I wrote ‘… 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.’ Is seems to me that you have done that and I hope that will bring some comfort if not straightaway then at some point when you are able to look back and say you did right by your father. It may be fanciful, but I like to think that somewhere deep inside your father knew that even if he wasn’t able to tel you.
My sympathy to you and your family.
Tot

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I hear you. Going through much the same with my husband, 67, though not yet constantly aggressive. He’s in line for a nursing home as he has no capacity for appropriate medical decisions any more and cannot understand the insulin jabs he needs to do to stay alive as a type 1 diabetic. Nor does he want to take dementia and Parkinsons meds with anyone watching. I had to refuse to do anything medical any more as he would not do the right thing in front of me or allow me to do it. Oppositional Defiance. He sees me as his wife not a carer or medical professional. We rub each other up the wrong way. I do not love the stranger inhabiting my husbands body and mind, but I will be able to visit, take care of and get to know this stranger for as long as he lives in a nursing home