New family member

January 4 My aunt 92 years has just been diagnosed with PD after being taken into hospital as an emergency with Sepsis. I knew nothing about PD, and didn’t realise her symptoms could have been PD. Drs had not diagnosed it. She was in a care home and I visited daily. She is suffering new pains which she did not experience prior being so seriously ill. She has become paralysed over night so limbs are painful and she cannot even hold a beaker. What we believed to be curvature of the spine is now closing her throat. Purées only and fluids. This is such a shock and so sudden I don’t feel prepared. She is now in a nursing home and I still visit daily trying to visit when a meal is due. Feeding her is our closest time now. What else can I do to help and comfort her?

Hello and I can’t begin to think how shocked and powerless you must feel and I in turn, feel it hard to know what to say given the circumstances you describe after all a diagnosis of sepsis alone would be hard enough without the double whammy of Parkinson’s as well. I am sure you will find others on the forum will be able to advise you better but for what it’s worth, in my opinion you are already doing all you can by being there and caring. That is the most important thing you can do. I think the reason it is hard to know what to say is because PD is complex and I have no idea what doctors will suggest or how much you may want or indeed need to know in the circumstances. Instinct says just to reassure your aunt as best you can and know enough from the medical team to enable you to do that without getting unnecessarily bogged down. I hope this helps a little. You will find support here from someone whenever and whatever you need 24.7. Sending very best wishes and lots of love.

Thank you for your kind words. I am reading messages posted here and learning all the time. You are right PD is more complex than I realised, and I’m only just beginning to accept what has happened. My aunt is showing great fortitude in the circumstances, but is very frightened. I have talked to the nurses in the nursing home and they have a care plan in place to ensure she is as pain free as possible. The meds for her PD seem to be giving her very disturbing dreams which are hard to unpick and clearly very real to her. It’s a very big learning curve. Your support is invaluable.

Hello again. You mentioned your aunt was having disturbing dreams. Just so you are aware hallucinations and delusions are known side effects of Parkinson’s medication that affect some people. If you look on the Parkinson’s uk site there is an information sheet on this topic if you want to know a bit more - for some reason I couldn’t raise a link for you. Alternatively do call the helpdesk if you wish to speak to someone, you may find this easier. From what you write your aunt is receiving good care and importantly taking steps to make sure she is comfortable. There is not a lot you can do to alleviate her fears, it is hard to imagine how she feels about everything given her grand age but she almost certainly doesn’t understand what Parkinson’s is so by default, doesn’t understand what is happening. As I said before you are already doing right by your aunt by being there and caring and reassure her as best you can. Personally speaking it seems to me it would be better to keep any explanations to your aunt as simple as you can, there seems little point in trying to go into a lot of detail that will probably only confuse more. One more thing, don’t forget to take time to look after youself - you are no good to your aunt if you become ill. Take care and come back any time you need.