I'm looking for some advice


#1

Hi

I'm new to the site and am looking for advice in regards to my grandad. He was diagnosed over 10yrs ago with Parkinsons. He is currently in hospital and I'm stuck really. 

He initially went into hospital due to being massively constipated and this had caused an issue with a possible blockage/hernia problem. He had his hernia repaired last Thursday night. Since then he's bee having a SALT person come each day  to help with his swallowing (the drs thought he would be eating on his own by now) and since having his operation his swallowing has kinda ceased. If he needs to cough he suppresses it and turns purple as to not cough. He's refusing Physio exercises (even when he was at home he never did the exercises). He's had termites for as long as I can remember and the drs changed him fro oral medication which he's not absorbing to patches (I didn't know these patches were available) since having the patches his tremors have ceased.  

My question is I'm aware my Grandads in the later stages of parkinsons along with his other health issues the Drs are very reluctant to have him sedated/ga but at what point wil his body just give up? Due to the surgery he's had they don't tend to give oral nutrition until 5-7 days post op. He's had a nasogastric tube in that they managed to get nutrition into but he pulled it out on Saturday morning. They have since tried to consciously put another one in since Saturday and failed.

So 10 days post op he's had no nutritional line/supplements, he's refusing Physio, he's got horrendous swelling of his arms and legs, he's struggling to seallow/cough, he's pretty much out of it each time I visit I may get him to open his eyes and acknowledge I'm there but then he goes back to sleep. I had to made a decision last week to dnr and refused a ventilator should he deteriorate. 

I do have medical knowledge but feel at a loss.  

At what point will his body give up and will he starve/deteriorate dramatically 

 

thanks


#2

I wish I could answer your question but I have no experience to guide me the best thing i can suggest is call the help line they have Parkinson's specialist nurses who are far more qualified to advise you. I do hope it all get's sorted out for both of you.

 

Kind Regards BB.


#3

How old is he?

I would think it would vary from person to person. Have you asked a doctor?


#4

I'm afraid this case is out of our realm.  Unless there are some experienced doctors or nurses on this forum, you would do better consulting a doctor who knows your grandfather's case, as John 1802 suggested.  We are all familiar with Parkinson's to some degree or other, but gradual starvation is another issue.  I'm so sorry that you are having to go through such a painful experience and that I can be of no help.

Sincere good wishes,

J


#5

Looking4advice

 

Our GP   diagnosed a hernia in my OH years ago. On referral to a consultant...............no sign of a hernia,  discharged, and then, almost   2 years later a complete blockage resulting in removal of his sigmoid colon due to a volvulus.  Do mention this possiblity when you speak to the doctor/s. A hernia, in my knowledge, is a rupture in the intestinal wall where the intestines poke through, whereas a blockage is a very serious problem which can be corrected by a colonoscopy, as it was the first time it happened with my husband, but a recurrence resulted in much more serious intervention.I honestly believe that the suspected  hernia was a compaction of the bowel which did correct itself before we saw the consultant, but as the bowel had been stretched it later led to a volvulus and then a sigmoidectomy.     This solved the problem but we are very aware that it can happen again.

You don't say how old your grandad is, nor do you say what his other health problems are, BUT after 17 years of Parkinsons we are still fighting and carrying on as best we can, so  10 years may just be a hiccup in progression or not.However, if your grandad is is his late eighties it may be a different matter so, you need to speak to the medical staff  concerned with his care.

The swelling in his arms and legs sounds like a heart problem to me, fluid retention, but I am no expert, only know that this was the case with a parent.SO,  you really need to speak to a medical person regarding your concerns, ASAP, nor rely on any input, as well intentioned as it may be on a forum.None of us are  experts we can only relate our past experiences.