Scary times


#1

Hi - sorry to be come on just to offload a pile of worries, I haven't managed to find time to visit for ages, but mum's symptoms seem to have returned or changed recently, and, after a year of being fairly well controlled on Sinemet, we are suddenly in what feels like quite a frightening time.

Mum will be 93 next month, and dad passed away just before Christmas. She's been being very brave, but it's hard not to conclude that the bereavement has precipitated a new stage of Parkinson's, if that's possible (sorry, I still understand so very little about this illness).

So, she'd been becoming increasingly sleepy and hard to rouse, sleeping interfering with normal eating and drinking; when awake she was choking on "phlegm", she said, and clearly struggling to breathe. Very scary. We've fought over the last year to retain her ability to stand (that makes it possible for me to manage her at home), but that has also been deteriorating. For various reasons that may or may not be to do with Parkinson's, and aside from the dignity issue, the ability to stand and use a commode or toilet is important, otherwise other health issues kick in ...    anyway, there were a couple of days when she barely woke long enough to have meds (but was brighter afterwards), and barely ate or drank.  When awake she was shaking so much she couldn't give herself a drink, and, since I caught careworkers tipping drink into her while she was clearly saying, "Stop, I'm choking", I've forbidden them to "help" her!!!    Her nose was full of tea/food debris, she'd clearly aspirated or regurgitated food/drink.  Even her bowel movements seemed to have stopped.

Again, I don't know whether these things are typical .... but anyway, the GP upped her by one extra Simenet tablet a day (so now on 5 times a day plus 2 slow-release ones), and a week on, she is much more alert but response to medication seems rather erratic (sometimes it works, sometimes it doesn't), she feels sick all the time, and choking is still a threat.  Pooing is more or less back to normal. Standing seems to have gone, perhaps forever - thank god we have a hoist for emergencies. 

We are not due to see the consultant again until May, and I can't keep bothering the GP, although she is helpful.  When mum was diagnosed, I thought, OK, whatever this thing is, we'll deal with it ... but this last time has scared me, I'm tearful at work and have to keep reminding myself not to be such a wimp - it's about her, not about me feeling needy and scared.

I just wish I knew what to expect - what if I can't wake her to have meds safely? - Although this is more likely to be an issue for careworkers, who might not be able to assess whether it was safe or not.

Anybody else been here?  Is there something else I should be doing?

 

 


#2

.. I forgot to say, in between all this sleeping she's right on the ball at odd points, and has clearly registered things (including my despair) that have gone on while she appeared to be "out" .... "darling", she said, "you must have a think and tell me what more I can do to help you" !!!


#3

Hi LookingAfterMum,

Please accept my condolences on the passing of your dad.

I can understand you are worried about your mum. Please feel free to give us a ring on 0808 800 0303 (Monday-Friday: 9am-7pm, Saturday: 10am-2pm) if you'd like to talk to our trained advisers, including specialist Parkinson's nurses.

 

Best wishes,

Ilona (Moderation Team).


#4

Hi LookingAfterMum

 

I am looking after hubby and get in touch with your local Parkinsons nurse. Also if she is on Sinemet I have read that diet is important, eg no protein close to pilltime? Worth looking into it.

 

and do take time out for yourself