Have you got Respect Form/Palliative Care in place?

[Loveispatient23]

Hi all, I haven't posted for a while, although I have been reading the posts regularly and send my deepest condolescences to all loved ones who have passed away recently.

My Father-in-law's (FIL) PSP journey is gathering pace, it's so awful to see a once active man, not a day off in his life due to illness, become a fomer shell of himself. 6 weeks ago he took unwell which resulted in a call to 999. They diagnosed an infection which took 2 lots of antibiotics to clear it.

When the ambulance came they asked for his 'blue' form or 'Respect Form' both myself and my husband had no idea what this was. Since then we have put this in place. It's a form that you can ask your loved ones what their wishes are when it finally comes to the end. A nurse from the GP surgey came and helped us fill it in and made sure my father-in-law understood everything we also discussed it with the wider family too. It was always something we haven't discussed, it was the elephant in the room, but we are so glad we have done this as my FIL's speech is becoming very difficult to understand and this way his wishes can be heard and respected. The form can be changed at any time, its not set in stone.

Also we have been trying to get him on the Palliative Care list and did not know how to go about this. When the Paramedic came we told him about how we have had to moan/knock on the doors to get the OT, Speech & Language back on board. He was so helpful and made some calls immediately and from then on we had a number to call to get the district nurses involved. From that a visit was arranged from the local hospice and also had a vist from the district nurses who are going to visit regularly. All this help suddeny came so quick! At long last my FIL is now having the help he needs. They say he is not 'end of life' presently although we have taken stock of the 'emergency pack'. This is a pack whic has strong medication that is in a safe place at his own home and when things become worse the pack is there to be administered by the nurses for a comfortable and peaceful end, as per his wishes.

The last few days my FIL hasn't wanted to make conversation, he drifts in and out of sleep constantly, even with the TV on full volume!He can still eat but his wife is feeding him more and more. His beathing is a lot more noisy when he sleeps, his hands and feet occasionally tremor. We recently had a hospital bed delivered and a MoLift. This is a great piece of engineering to help transfer from bed to recliner, the OT secured this for him.

I hope this information has been of some help to you all, I feel that if one person can get some valuable advice from this to help in their loved ones PSP journey then that's a great source of comfort to me as we all need to share our experiences to help give our loved ones all the very best care we can.

[Kelmisty]

Yes we have both a DNR and a Respect form, we did them with our local hospice.

This is one of the many reasons if you can approach your local hospice they will help you have everything in place before you need them.

[autex2000]

A slight note of caution on the respect form. My personal experience is not very good, I found out from a well wisher (by an anonymous posting of the original and a copy)) that a respect form had been signed by two doctors for my wife supposedly on my approval when no one had even mentioned it and until I saw the letter I did not know what a "respect" form was.

I reported it, an apology was made but nothing more was heard. I was later asked to sign one by my doctor for her, reluctantly I did, What you have to realise is that it gives power to the controlling physician to take steps with any one very ill, with a respect form, that they think appropriate including end of life path! I speak this way because when my wife much later was sent to hospital for an MRI, she was kept in against her will and I found that she had been put on NBM (nil by mouth ) for many days and it was only when I realised she was starving and made a fuss,that then did something to try and rectify it. She was then sent home but I am afraid it was too late and she passed away some days later.

[Loveispatient23 in reply to autex2000]

Thanks for this information autex2000, I'm so sorry to hear about your awful experience of this and so sorry for the loss of your dear wife. It is a valid point to be cautious.

We have been told that in extreme circumstances of our loved one being extremely ill that the medical professionals can override your loved ones wishes if they deem it apropriate in their individual situations but I am of the understanding that they would discuss this with the family in the first instance.

Take care.