@Manisha It sounds as though you are being given conflicting information which is only making things harder for you and your mum, at a time when all you want to do is focus on your dad and to spend time with him in the best way possible, without all of the worries about how care is being provided to him. That is why I suggested requesting a meeting with the Chief Executive Officer or Clinical Director to say that and that all you want are clear and understandable explanations. Also, by reading the notes made by doctors and nurses, it might help you to get a better picture to see exactly what they are recording and if it is line with the care you see being given and the information they are giving you. Earlier, you mentioned that you had read up on DoLS. I am not an expert but could you ask for some advice re this and the organisation of a Best Interests meeting? Others on this site with more knowledge on this issue may be able to offer some advice.
Again, I wish you all the bestâŚ
@Ally6 they wont allow for him to go home so basically hospice is out of the equation. They stated they would get my mum an interpreter as she wanted to complain, this has not yet been done and raised again but ignored.
@Ellen3 thank you for your advice, i requested to escalate the matter to the palliative doctor but she directed me to Pals or the nurse in charge. We waited for them to provide an interpreter for my mother from Thursday last week but nothing. Again this was pointed out and i was told to direct it to the nurse in charge. I will contact Pals again and request as you have advised. The weekend was tough, he was hyperventilating and i had to tell him to keep breathing with ease which he would listen to for 15secs then begin to hyperventilate. He began gripping my hands as he struggled for ages and the nurses when alerted appeared as though this is normal in this process. This was so heartbreaking to see and i struggled to gwt him something to help him calm down. I questioned palliative doctor how on the weekend it was deemed comfort? He was crying and in agony and nothing was done. To whcih she said if the nurse were alerted they are able to call the doctor on the weekend thats covers the wards. Pass the buck it seems.
@Manisha
Hi. This is totally unacceptable from the ward and doctor. Iâm sure you posted over a week ago saying he was unfit to be moved and on end of life. Nobody has to suffer as he is doing.
Although it will be difficult for you, maybe video him whilst struggling then you have absolute evidence. I would also record all thatâs said between you n staff n warn them that is what you are doing
Go to the PALS office as there should be one on site. Tell them you want someone there NOW. Threaten you will contact the Chief Executive. In fact Iâd do that anyway they do not want adverse publicity.
Sometimes we canât just take things on the chin we have to threaten and itâs sadly seems that is the way you are going to have to goâŚ
I think they can do what they like if you havenât got poa. They moved my mother in law and didnât tell my husband.
Do you have little sponges on sticks to wet his mouth. Balm for his lips? Gel for ulcers. We nursed our 28 year old son eol at home. We did get intravenous(?) fluid but it pooled in one area. It is so heartbreaking to watch someone you love die. Make a fuss, interupt, ask questions⌠you may regret it if, like me, you respect âauthorityâ too much. Good luck.
@Manisha
Dear Manisha,
I agree with @Ali7 âŚmake a fuss, interrupt and ask questions. I didnât because I didnât know that I needed to and I placed a trust in the medical people that was not deserved. I wish that I had had someone to tell me this at the time.
You and your mum are absolutely trying your best âŚif you feel able please post again to say how things have progressed. In the midst of all of this your only focus is your dad and his comfort. You are doing great. Take care.
The ward doctor came to see me as perhaps to show they have listened to me complaining to the Palliative doctor. He was smart he came as his shift was about to end, repeated the same thing, i will tell the nurses to do mouthcare regularly sorry it has not been done, sorry re the weekendâŚi said i was made to feel like this is normal and i have no choice but to watch my father suffer for every breath as he hyperventilatesâŚi told him for the first time in my life i was scared to be with dad on Sunday night, the fear of losing him and seeing him hyperventilating was breaking me apart inside, watching him suffer and have tears running for the edge of his eyes, as i spoke to him he tried to calm his breathingâŚhow i watched in agony is beyond anything i can ever describeâŚi have no wordsâŚjust something that has now become another part of this torturous journey for my father.
Also on sunday night the nurse on night shift had both her air pods onâŚi just was too brokenâŚhow will she even hear my.dad during her shiftâŚshe wontâŚ
The Palliative doctor also started telling me how because my father had a bleed on the brain there is not enough oxygen going aroundâŚerrr he has NO BLEED in his brain, no strokes either, he has diffused hypoxiaâŚshe quickly said oh yes hypoxia sorryâŚgod save our loved onesâŚi clearly made a fuss enough to see she was in a rush to go but was struggling to answer as i didnt let her go and just throwing questions her wayâŚthey wont give antibiotics cos thats only going to prolong his life but the fact it will clear his chest infection therefore make the process peaceful was again answered as though why would we do such a pointless thing when we can just let him die from the infection.
The days dont get any easierâŚ
Im so sorry to hear of your sons passing and how they are dealing with your mother-in-law. I have been using those sponges ons sticks thank you, balm for lips and eyedrops. His ulcer has for now gone. I did take an ulcer gel but it was not required in the end.
I do respect authority, i give them my chances, but having given them they have failed again and again despite their promises so i am making a noise, but i feel like im a complainer. I remind myself this is about my dad so i will have to keep persevering as it is tiring challenging authority.
But thank you for everyone that keeps pushing meâŚyou dont understand how much all your words mean to people like me fighting this systemâŚyou guys are a secret blessing so thank you. As some days i feel like im sinking and when i hear some of you encouraging me, it pushes me to take that step even more. Thank you!!!
Thank you for pushing and pushing me to keep goingâŚtoday evening despite seeing him in discomfort for two days, he appeared some what better but bless him he heard pur presence and was unsettled the whole time. He was suctioned better after having watched his nurse attempt to use the suctioning, she just said the secretions at the back of his throat are too hard and wonât come off. Nurse in charge, that spoke to me after i had complained to Pals understood and helped suction him and removed what my dads nurse was not able to do and gave up. He then appeared to be comfortable but in some pain, by the late afthe was again hyperventilating. The Palliative doc said she will increase his morphine and midzoplam to 10mg each on the driver along with glycopyrrium at around 11-1pm. It was only given at around 1800hrs. He continued to breathe faster and faster and was struggling to breathe with his back overheating and began sweatingâŚi could not leave him this night but my brother is staying the night insteadâŚ
You are truly doing all you can for him. It is hard work and totally exhausting having to fight for attention from the staff. We appreciate they have limited resources and time. We just ask for transparency and respect for our loved ones - not always given but really appreciated when we do get it. Good to share with your brother; it takes everything out of you.
He sometimes knows you are there and will know you are âin his cornerâ. Xxx