Hi, I am new to this forum, thank you for having me.
My Dad is in the late/ advanced stages of Parkinsons. He can barely walk or do much for himself, has constant delusions and needs attention and care for all his needs. My Mum is his 24/7 caregiver. We are a small family and I do what I can but have a full-time job and other family commitments. My mum is struggling and is worn out. Trying to speak with her about what needs to happen next is difficult. As a family, we need to plan ahead before a real crisis hits. Any advice would be appreciated on what our options are, and how we go about securing his (imminent) future care. Mum will fight him going into a home, and she would be resentful of others coming into their home taking over the care - at the same time she is on the edge of burn out. How do we begin to consider what is available and how do we go about getting it? Thank you x
Welcome to the forum @KatBell and thank you for reaching out.
We are sorry to hear about your dad’s diagnosis and the challenges he is going through. We understand how difficult it can also be for loved ones who providing the support so it’s only natural for your mum to be feeling this way. We are sure our forum members will be able to share their experiences.
You are not alone in this, we have some information on our website on what to consider when Parkinson’s reaches an advanced stage
Our helpline is also available if you would like to speak to someone. Our trained advisers can put you in touch with one of our specialist nurses. It’s free and completely confidential: 0808 800 0303.
Take care 
Parkinson’s UK Moderation Team
Hello KatBell
I see you have had a reply from one of the forum moderators and that is good advice and will give you much needed information which will help you begin to understand what options there may be for you all. Since reading your post I have been pondering how best to reply as you find yourself in a very complex situation and have identified the main issues very clearly. You are not wrong in wanting to have some kind of plan before it reaches a crisis point and all the planning in the world may not mean you avoid a crisis situation because all sorts of unknowns can happen but you do at least need to have some idea about how to get help. It is difficult to say much because so much is a kind of ‘it depends …’ sort of issue so instead I thought I would just make a few general comments from how I see things from what you’ve written. I would stress it is only my opinion and may not be accurate but will perhaps point you in the right direction.
For me the weakest link in the chain if you like is your mother. You say she is struggling to cope and wouldn’t really want people coming in or consider a home for your Dad. In your shoes that is where I would start. The bottom line is that if her health breaks, and she sounds close to that be it mentally or physically, what will happen to her husband then? I think you need to tread carefully but at the same time get her to see her caring role for her husband is not one she can manage on her own any more, These conversations are never easy and one way that you can manage this is to write a letter. That way you can take your time to get the words right so that she knows you are acting out of genuine concern for both your mum and dad because you care but are worried, or whatever you want to say. Make it honest and speak from your heart. How you give her the letter you will need to decide - leave it for her to find, give it to her then go and make a cuppa while she reads it or stay while she reads it for eg. It can be a way of opening up honest discussion. It can be a powerful tool but you need to consider carefully what and how you write.
Your mum would be entitled to a carers assessment in her own right. If she would agree to this she will at least have an opportunity to speak to a social worker (or similar) about what sorts of things they can do to help her to continue to care for her husband. Perhaps your dad could go to a day centre or perhaps she would agree to someone coming in for a couple of hours just to sit and be with your dad while she has a bit of time to herself.
Your dad of course will be eligible for his own assessment and whoever undertakes that assessment may be able to talk to them in a way family members can’t because they are doing their job and have no ulterior motive. It may be you could suggest getting such an assessment would give you information about what options there are, which she may well not know about but with no obligation to agree to anything. This might plant a seed in her mind that she comes back too at some point.
I think talk of homes could be left initially although if appropriate you might want to say something about her view of homes. Most people glibly refer to putting someone in a home and it is seen as a negative. The reality is that if it is the right home (and that can take some time) the individual can thrive in an environment where he or she sees more people and there is things going on rather than just being at home with, in this case, just your mother for all his personal care needs, keeping the house going, meals and yes, entertainment too. most of the time.
I don’t know if you will find much in what I have written that helps but I hope some of it may at least give you food for thought.
Do let us know how you get on.
Best wishes
Tot