My Dad has had PD for 12 yrs now. He’s 86 and I have no shame in saying with relief that I think/hope he’s near the end of his life now. He has recently had a UTI - really struggles to drink anywhere near the amount he should each day - and I know with PD it takes a long time to recover from symptoms of UTI. However, according to urine tests he has overcome the infection and yet he really seems to have fallen off a cliff with confusion/dementia and I just can’t get a coherent word out of him now. Has anyone else experienced this? I am just really sad that if this is now irreversible, I’ve already had my last day with the Dad I’ve known and loved all my life without even realising it. He currently lives in an extra care facility that needs a certain amount of independence but I feel the day is just about here when he needs more oversight and care and the likelihood of a care home looms. The only coherent sentence I had from him today was that “I don’t want to leave” and the expression of distress on his face was just awful to witness so I need to do all I can to try and keep him there but not sure I can manage if becomes longer term.
A warm welcome to the Parkinson’s UK forum.
I’m truly sorry to hear about your dad - it must be heartbreaking to watch his health deteriorate. People with dementia may eventually need more support and this may include being in a care home. We have a supportive community here and I’m sure you’ll receive support, insight and experience of other members on the forum.
In the meantime, we have a lot of information on the Parkinson’s UK website about dementia that will be helpful to you and your dad - it includes information on groups and organisations that are here to support you. You can find this section here: https://www.parkinsons.org.uk/information-and-support/dementia
We also have a Parkinson’s and dementia booklet which you can download for helpful information - https://www.parkinsons.org.uk/sites/default/files/2019: 11/2019%20FS58%20Parkinson%27s%20dementia%20FINAL.pdf
Lastly, we have a confidential helpline with a team of fantastic advisers that are here to provide you with more support. Please give us a call on 0808 800 0303 or email us on [email protected].
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Hello I echo absolutely Reah’s comments your distress comes through clearly in your post and to be honest, I feel a bit helpless to help. What I do want to say though is that alongside your distress you show yourself to be a caring person doing the best you can for your dad. That will give you the strength, however hard, to continue to do that until the end and you will have done the best you can. That’s all you can do and I believe that your dad will somehow understand that even if it may not be in a way you can see or understand. You will make the right decisions at the right time because you are thinking only of what’s in his best interests, he will know that too. Cry for the dad you’ve already lost, then hold the hand of the dad who is still here - it’s a difficult balancing act and it seems to me, you are doing him proud. I send love and best wishes to you and your dad.