Palliative care? Urgent help needed

Hi in desperate need of some guidance! My dad was diagnosed with PD about 8 years ago. Hi is 81 and was being cared for by my mom until the last 8 weeks, when he suffered a sudden deterioration in his condition and has been in hospital ever since. Unfortunately his condition has continued to worsen, and it has been a rollercoaster of good and bad care whilst in hospital. The hospital is now getting a social worker involved to talk about his next move. We have had very little support from any Parkinson’s specialists and I am worried that they will talk about moving him to a nursing home. He is bed bound, doubly incontinent, has long periods of deep sleep, trouble speaking and swallowing and Lewy body dementia. Heartbreaking as it is to say, in my mind I think we need to look for a hospice to give him the best care! Am I right?? Any help appreciated.

Welcome to our forum, @Phoebe5. Everyone here is friendly and supportive and I’m sure they’ll be along to say hello and chat to you about your concerns soon.

This sounds like an incredibly difficult situation for you to deal with and I’m sure you must be struggling with knowing what’s the right thing to do. The social worker could be an invaluable resource for you on many levels and I hope that meeting comes quickly and that it can give you some peace of mind. Have you also had a chance to speak to your dad’s GP at all? Times are tough at the moment and we hope you can see your way a little more clearly very soon.

Our page at Advanced Parkinson's | Parkinson's UK goes into some important details of advanced Parkinson’s and show you options to consider. As well, our local advisers on 0808 800 0303 are happy to talk to you and offer support around this difficult issue. Do give them a call.

Wishing you all the very best and looking forward to hearing how it all evolves over the coming weeks
Forum Moderation Team

Hello Phoebe5
What a difficult situation for you all and heartbreaking too.
This may be helpful

I suggest you contact a local hospice and ask their advice and the referral process - some will take self referrals, some will need a referral from a GP and it is likely even if self referring they will seek a medical opinion. I think you will find them very helpful and they will be honest about what they can do - you will at least know where you stand.

I would also say that there are alternatives to some form of residential care such as live-in carers and there is difference between nursing care ie care that requires some input from a qualified nurse and ‘general care’ for want of a better term so make sure you ask questions and do your own search to make sure all options are considered. Also if a particular route seems to be being promoted as the primary or preferred option by the medical team involved, make sure you understand the reason underpinning this because it may change your thinking.

This is a very difficult and emotional time for all the family but it is important that you try to be led by your head not your heart to make an informed decision about what is in your father’s best interests.

I hope this helps a little.
Best wishes

Hello phoebe5
I’m a palliative care healthcare assistant , and my husband has Parkinson’s so I understand what your going through
Please talk too the Hospices nurses they are wonderful they will help you in every way you have choices
I work for families who decided to have their families members last days to be at home , it’s 24 hour care in the home , with excellent support for you , but the hospice care is extremely good too
Talk to your doctor and district nurses , they can help you Decide which care you can have and what choices you could have , you can go to your nearest hospice and have a look around there are beds for families too so you can stay and be with your family member at their end of life , also talk too your nearest Marie Curie team they are there to support you
I hope this helps you , god bless we are all thinking of you in this sad time

Hello Phoebe

Thank you for your informed input. Just to say my husband who has been cared for at home with 24hrcare for four years now is being referred over to care from our local hospice. As he is housebound the specialist consultant will visit us in our own home to discuss options including hospice at home.

I am hoping we can keep him at home but am very aware that the reality may prove too difficult. Also I do not feel it right for my grown up children , particularly my elder daughter who is a MacMillan nurse to be overly involved in her fathers care . Hospices provide the gold standard for care of the terminally ill with therapies including psychologists, physios and OT not to mention the nurses and doctors with all their humanitarian qualities
Phoebe I would say to you hold out for this specialist care for your father. You may have to be very assertive but do not allow yourself to be fobbed off.

Whatever decision you make, after hopefully getting all the informed input you need, I am sure that it will be the enduring love you feel for your father and also your mother that will guide your choice.

At the end of life love is all we have.

Much love to you