Hi everyone we're looking into setting up legal provisions for when Bob(husband), condition may make them necessary to ensure his wishes are known and complied with
Anyone with knowledge &/or experience of setting up 'power of atorney', resuscitation wishes and feeding decisions will be most welcome
Hi. Whereabouts are you in the UK? xx
Sorry - without giving address just area xx
Hi we live in Bristol
Hello thereNot so far from me! AliB too if I remember correctly!
Lots of good advice following, I did the financial LPA on line but a Solicitor did the health and welfare ones for us both. Sadly PSP advanced quicker than expected so it wasn't ever needed.
Keep on keeping on, were all here to help you.
Hugs
Anne x
Hi there.. I’m so sorry that you’re having to go through this but you’re definitely doing the right thing by sorting this now. We left it a bit too late with my dad and the uncertainty of his answers made it traumatic for all of us.
From what we found out there are 3 things to look at -
Health power of attorney - legally gives you the right to make health decisions for your husband.
ReSPECT form - guides health professionals to know what your husband’s priorities are - comfort vs treatment. It’s not legally binding but in my dads area all health professionals refer to it. You can wave it at ambulance staff to stop them taking your husband to a&e. Etc. You can fill it in with the GP or palliative care nurse.
Advanced decision (living will) - legally binding doc where you can specifically state treatments to avoid. We were too late to do this one but it would have saved us a lot of stress. See link nhs.uk/conditions/end-of-li...
Hope this is helpful.. we found that having the forms in front of us helped us all realise that these conversations are normal and ok to have. I just wish we had had them earlier when my dad was less scared and more clear in his decisions
Good luck x
Hi I agree with Doingwhatican, you can get the forms from your GP re: Living will & Do not resuscitate (CPR) Quite simple forms to fill out. It' a conversation you dont really want to have but everyhing will be set in place when the time comes. As far as LPA get both Health & Welfare & Financial. We did this before my husband was even diagnosed with PSP you can fill the forms out yourself & then register / lodge them. Costs around £86 for each. It's worth taking the time now to prepare for the future. Take care, your doing a great job, ❤
Agree with all the above. POA is much simpler to do yourself now it's on line and will save you £500+ but if you don't want the hassle any solicitor will do it for you.
Mum picked up a completed DNR form at some point doing a short hospital stay. I wasn' t consulted but we talked about it after and it was the right choice for her. It's important to keep this handy as if you have a reason to call out an ambulance or your husband goes into hospital, they need to see this form to be able to respect his wishes. It is possible to get a DNR wrist band (like the charity ones) but I don't know how binding they would be without the form as well.
Our Community Matron took us through the end of life forms. It was one of the hardest conversations of my life but so important to have done. When the time came and decisions needed to be made, though I felt I knew what Mum wanted, the fact that it was down on the form, meant I didn't have to question what I was doing for Mum. I also found Drs attitudes changed once they saw the form and stopped trying to persuade me to send Mum to hospital, when we both knew there was very little point and she had stated clearly she wanted to stay at home, with carers that she knew and liked. It made the end so much easier knowing it was as Mum wanted it, quiet and peaceful in familiar surroundings.
xxx
A couple of things about the Health and Welfare LPA. The key question is do you want the doctors or the attorneys to make decisions. We decided attorneys because we are the people who know my husband. He made a living will years ago but the LPA office told me that if the POA is made subsequently it supersedes whatever is in the living will. We put as little as possible in the way of wishes or conditions in the POA because you are never going to be sure what situations will arise and we wanted to be able to meet them in the spirit of my husbands wishes. Hope that makes sense
Lots of good advice given. It was the first thing we did and went to a probte practioner for.advice It cost us,but worth it to have it all legal. My husband has lpa over everything when I can no longer do things.saves a lot a lot ,further down the line
Hi Plantnut. This is not an easy subject because you are the one who is going to have to ensure your husbands wishes are adhered to. Are you prepared to say to health care professionals who say his life can saved / extended - don’t do it. It’s not easy. Having said that my wife, who has PSP, completed a DNR with the GP, POA with a solicitor (it might be expensive but it’s worth it so that no mistakes are made - imagine your distress if you have to evoke the POA to be told it was completed wrongly and is worthless) and an Advanced Decision to Refuse Treatment with the aid of the Hospice Nurse. One thing that I have not seen mentioned in the replies you have had is the ‘Green Cross Bottle’ available free from some pharmacies and doctors. The bottle is kept in the fridge (the emergency service know to check there) and directs the emergency services to where you keep the DNR, and ADtRT - it’s no use having these documents completed if the emergency services cannot find them. I mentioned the Hospice earlier if you have not already been referred to them get yourself referred, they are not just for the final stages of life, my wife does exercises with them as well as Wheelchair Tai Chi and can attend their day centre. They also care for the carers. Keep smiling it’s a lonely long haul. Alan
Yes - just to echo what Birdman42 says about palliative care support - this should be available to anyone with a non-treatable illness no matter what stage you're at - you don't have to be near end of life. They really know their stuff and know how to support these conversations.
Hello Plantnut. Nothing about the course of this horrid disease is easy, and talking with your beloved about end-of-life wishes is one more difficult task. You are so wise to be undertaking this action now, while your husband is able to tell you what his wishes are and how he feels. My husband and I did POAs and Power of Health (we live in Ontario, Canada) several years before he had his diagnosis, just as a matter of course when we finally updated our wills. We also had had many discussions about what we each wanted should either be hospitalized with a terminal illness or condition, and we both were absolutely certain that we wanted no extraordinary measures or treatments to merely extend life.
My husband was in hospital waiting for a PEG procedure when he suddenly crashed. I was able to tell the doctor first on the phone, and then in person once our son and I got to the hospital (miraculously, despite Covid restrictions they let us both be with him) that there was a Do Not Resuscitate order on his file, and that I knew that he would not want to undergo any treatment that would only serve to keep him alive for a while in an ICU bed. I appreciated that the doctor wanted to have a gentle conversation with me in person to confirm what I had said on the phone, but he did not try to change my decision. In fact, he reassured me that knowing that there was a DNR and that my husband had made his wishes very clear gave him the direction he needed to order that my husband be given "comfort care." My husband was given meds for pain, meds to relieve any anxiety, and to dry the excess phlegm and saliva that had been plaguing him for weeks. His passing was gentle. And I am glad that I was able to help make it so by communicating his wishes.
I hope you and your husband are able to accomplish everything you need easily. So much good information and advice from so many here.
A big hug,
Purrlie
PSP Stages
PEG Feed for the latter stages of PSP?
end of PSP
My question is: does PSP speed up in later stages?
