Hello, My father has Lewy Bodies and Parkinsons (8 years ago). He was admitted to hospital 1st of Aug with a Sigmoid Volvulus, given morphine as he was in great pain.
He had a procedure to untwist his bowel but after the procedure was very drowsy. He in on Sinment 125mg x 3 per day. Because he was drowsy his oral meds could not be administered. Eventually he was given disposable parkinsons medication (dispersible version of Sinement). However he has remained very drowsy, does have swallowing problems but was eating solid/softish foods before hospital admission (family members were assisting at every opportunity). We fed him soups, jellies, custards, yoghurts, porridges, semolina in hospital.
The speech and language therapist assessed his swallow and ascertained that it was unsafe. He was then Nil by mouth for 3 days whilst before they inserted an NG tube initially for a proposed period of 4 weeks. Then he fell ill again (internal bleeding) which meant the NG tube was taken out for another 3 days. He is quite week. His PD meds have been changed to the Neuprau patch 6mg.
I was on my own with my Father when the DR asked how Dad was and suggested the Palliative care team get involved as it would be kinder to keep him comfortable in his last days. Fluids and the NG tube would be withdrawn.
I said that the plan was to put Dad on the NG tube for 4 weeks to see if he gets his stength back with a view to assessing his swallow. I was told that frankly Dad does not have 4 weeks and it would be kinder to let ‘nature take it’s course’. I said we must try as a week before Dad was talking, responsive and still engaging with us. I could not believe that in 2 weeks my Dad has declined so rapidy and now taling about preperation for end of life.
I think the trauma has affected Dad - his speech is now very slurred but he still recognises us.
In the end it was agreed the NG tube would be reinstated but it took another day. Then the NG tube was pulled out and Dad had no feed for nearly 2 days as no one could get hold of the consultant radiologist to see (via x-ray result) if the tube had been re-inserted properly. Dad got very weak and his stats dropped rapidly and he has been given lots of fluid which resulted in fluid overload and his hands and feet have swollen. Therefore fluids were reduced to 1 bag every 24 hours and he was then put back on his fluids on the usualy 8 - 12 hourly rotation. The go ahead was given for feeding to begin late Sunday 19th of August but Dad has been very drowsy since then.
Palliative team has been called in with a view to ‘manage his pain relief medication’ not for iminent EOL. But still the end of life push continues. I am convinced the switch to the Neuprau patch is causing the drowsiness and don’t know why there were not considering administering his previous PD medication (Sinemet) via the NG tube.
His NG feeds are being continued but I am concerned about a subseqent swallow assessment. He has been extremly drowsy - clinicians seem to think that drowsiness = imminent end of life but I disagree. We are made to feel that we are being ‘delusional’ and told that often such patients ‘rally’ but there is only one result.
Dad was up today (27th of August) squeezing my hands, attempting his arm exercises with me, itching his nose and playing with his sqeezy ball.
I feel that the clinicians think EOL imminently is a ‘foregone conclusion’ and it takes a lot of work to battle against these ‘conclusions’. The weekend on call Dr decided not to continue fluids intravenously and that Dad is getting sufficient hydration by the flushes he is getting when paracetamold and other meds are syringed via his NG tube. He also said that he would not take bloods. Luckily a kind Ward Sister took the bloods with no issue. He is currently being assessed for an Albumin deficience and is beng given powerful vitamins (B1, B12 etc).
I feel that my Dad need to recuperate - he has been through a lot but that he may not be given enought time to do so. I will be asking for the Parkinsons/Dementia team to review.
I feel very scared for my Dad at the moment. Family are with him around the clock in the hospital.
Has anyone had a similar experience?
D