Caring for Dad with advanced PD- - home or care home?

Hi. First post. Just discovered this website. Any advice appreciated.

My dad is 84. He was diagnosed with PD a couple of years ago after aggressive arms had cancer, and though he’s been managing, with my mum (77) acting as an unofficial carer, things have been getting slowly worse including difficulties speaking and moving. He refused to discuss it and goes into deep depression. He has also been a bit erratic taking his medication.

Last week things came to a head when he became completely locked in a seated position, unable to move his legs. He collapsed at home, was taken to hospital and he’s been there 5 days. In that time he’s deteriorated rapidly. A week ago he could eat, climb stairs, dress and shower himself and even drive (all slowly) but now his throat muscles have stopped working and he cannot swallow, take any solid foods or talk. He is in a semi-conscious state, suffers hallucinations, has black and blue arms from thrashing in his bed, is painfully thin and bedridden. I’ve managed to visit him but he does not seem to acknowledge anyone.

The hospital now want to discharge him within 24hrs saying there is no more they can do for him and my mum is at a loss to know what to do as there are absolutely no adaptations at home in place. The hospital say he either has to go home or to a care home. We have no idea how long he has to live - it could be days, weeks or months. There is no way she can care for him alone - change his wound dressings, bathe and toilet him etc, and I don’t live that close. On the other hand, she’s worried the unfamiliar environment of a care home will make him even more lonely and scared and none of his family will he able to see him due to COVID.

Has anyone been in a similar situation? Is there a place / helpline to find advice on what palliative care options look like? If he goes home, and it proves unmanageable, who does my mum tell? I found something called ‘hospice at home’ but came to a bit of a dead end searching online. At the minute neither he nor my mum claim any benefits other than state pension mostly because it all involves going online and they’re not that adept with technology but I suspect there are things they are eligible for. We are desperate to do the right thing by my dad, as he’s only ever done the best by us. Thank you for reading.

Hi Helen
Welcome to the forum
Sorry to hear about the hard time you and your family going through at the moment.
The hospital should do a discharge planning assessment. If he is transferring to a care home that would be better I think as it’s difficult for mum to manage herself. Now the new guidelines says in care homes 2 visitors are allowed per day but needs to have covid test before visiting and to wear ppe. If he is for palliative care , the hospital suppose to have a palliative care team and they suppose to assess the patient and discuss with next of kin and arrange the best option for the patient. They are able to facilitate the discharge either to care home , hospice or own home. I would suggest mum to have a discussion with dad’s nurse incharge and raise the concerns you have . Also referral to social services would be beneficial especially if he is going to be cared at home. Also there is community palliative services available as well. Hospital suppose to guide you all to make decisions which is vest for dad.
It’s hard time you are going through at the moment and hard to make decisions. But be strong and support mum as much as you can.

Hope everything will get sorted soon .
Take care.

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Hi Tinku, thank you for your thoughtful and helpful reply. You’re right, the hospital has given a few more details now about what the options are and the assessment for NHS CHC 4 weeks after discharge. It looks like he will stay in hospital a few more days. I also found the info on Age UK website really helpful.
Thanks again - information is power and we feel a bit more prepared now.
Best wishes,