DOES ANYONE HAVE A LIVING WILL ?

[shasha]

I WAS JUST READING THE BLOG ABOUT GETTING TO THE END OF YOUR TETHER AND WONDERED HOW MANY PEOPLE HAVE THOUGHT SERIOUSLY ABOUT THEIR END - IT IS NOT A QUESTION FOR THE FAINT HEARTED ...

[honeycombe3]

Hi Sharon,

I got the form from my GP years ago not directly because of my PD but because my mother's wishes regarding her treatment regime, use of her body for med science, no funeral etc were ignored/overruled by my siblings despite her having explicitly requested thid this for years before her death & having 2 sets of solicitors draw up documents to this effect. However after having seen the callous lack of care & respect in my local hospital on the type of ward I may expect to be put into I have changed my mind. For those not familiar with trhis idea I have copied the main part:

MAKE THIS LIVING to state my wishes in case I am unable to communicate

and cannot take part in decisions about my medical care.

1. I HAVE discussed this Living Will with my doctor, namely Dr …………………of………………………………………………Surgery.

2. I DECLARE that in the event that I am suffering from a physical illness from which there is no likelihood of recovery and which is so serious that my life is nearing its end OR that if my mental functions become permanently impaired with no likelihood of recovery and that the impairment is so severe that I do not understand what is happening to me and that my physical condition means that medical treatment would be needed to keep me alive OR if I become permanently unconscious with no likelihood of regaining consciousness THEN I do not wish to be kept alive by medical treatment and wish medical treatment to be limited to keeping me comfortable and free from pain and I refuse all other medical treatment.

3. IF my life is in danger then I wish my children …………………, ………………….., and ………………………… to be contacted to give them the chance to be with me before I die.

4. I APPOINT my children …………………, ………………………., and …………………………… to take part in decisions about my medical care on my behalf and to represent my views about medical care if I am unable to do so. I wish them to be consulted about and involved in those decisions and I wish those caring for me to respect the views my children express on my behalf.

THIS DOCUMENT SHALL REMAIN EFFECTIVE UNTIL I MAKE CLEAR THAT MY WISHES HAVE CHANGED.

[shasha]

THANK YOU VERY MUCH FOR YOUR USEFUL REPLY - I WILL COPY IT AND MAKE SURE I MAKE IT KNOWN TO THOSE WHO LOVE ME... I WAS IN HOSP RECENTLY AND SHARED A ROOM WITH A DEAR LADY WHO HAS HAD A STROKE 3/4 MONTHS AGO - DESPITE THE WONDERFUL AND CARING ATTITUDE OF THE STAFF I JUST COULD NOT BEAR THE FACT THAT SHE WAS FED THOUGH A TUBE INSERTED INTO HER STOMACH AND HAD TO BE CHANGED - LIKE A BABY - IT WAS VERY SOBERING FOR ME.

THEN I WENT INTO ANOTHER HOSP AND SHARED - FOR ONE NIGHT ONLY THANK GOD WITH A LADY WHO WAS OBVIOUSLY DYING WHO WAS ON OXYGEN AND WHO ALSO HAD NO CONTROL OVER HER BOWEL MOVEMENTS AND REALLY DID NOT KNOW WHAT WAS GOING ON - SO I MADE UP MY MIND THAT IF EVER I GOT TO THE STAGE THAT I WAS LIKE A BABY AGAIN - THEN I WOULD HOPE THAT SOME KIND DR WOULD JUST QUIETLY INJECT ME WITH A STRONG SEDATIVE AND LET ME GO -

SORRY TO BE QUITE SO EXPLICIT BUT I FEEL VERY STRONGLY ABOUT THIS ...

SHASHA XXX

[tlongmire in reply to shasha]

Yes, I have a living will. Also, have a durable medical power of attorney that allows tommy to make my healthcare decisions when I'm not able. But I think I will know when it's MY time to go so probably won't need either documents

[driller]

Good Morning; Yes I have a living will, as well my wife was given power of Attorny. i did this as I am losing my ability to think properly, as well as you can see I can not even spell correctly.

REgards

ERIC

[shasha in reply to driller]

i could never spell anyway eric - i am sorry to hear of your problem though you appear to be well in control

[jillannf6]

HI SHA

JUS TLOS TMY REPLY TO YOU...

I hve an LPA i,ASTNG PPOWER OF ATTORNEY(HEALTH AND FINANCIAL)and an A4 sheet to go with it (REPLACES LVIIGN WILL I THINK IN UK

NOW)

IT SI DIFFICULT TO DO BUT NOW IT IS DONE I AM HAPPIER ABOU TWHA THAPPENS WHEN I CCAN NO LONGER SPEAK RO COMMUNICATE E IN ANY WAY

LOL JILL

[shasha in reply to jillannf6]

thanks jill xxx

[tlongmire in reply to jillannf6]

Me too Jill. We were just talking about that today. My voice is very low and I am currently going though the LSVT speech program. My handwriting is so small you can't read it and it takes me forever to write anything anyway. I am worried about how I'll be able to communicate in the future.

[Hidden]

YES, anyone with a major life changing disease should have a Living Will,and a Power of Attorney It is my suggestion that you speak with a lawyer and have them help you with getting all the correct documents. I have been married 24 years to a Military pilot and have the Army to thank for handing me a packet with all the necessary papers in case anything ever happens to my spouse during any deployments and other stuff going on. Every year they have to be reviewed and up to date so the JAG office made sure I had all my documents in order as well. Good Luck with all that. It's a lot to do but it is your peace of mind knowing that your family or caregiver don't have to worry about certain decisions.

[shasha in reply to Hidden]

thank you for your goood advice - i live in france but have a good english solicitor

[smswv]

I have my living will, power of attorney, my will drawn up and have made my funeral arrangements.

[shasha in reply to smswv]

good for you xxx

[Court]

Hi Sha

This is something I feel very strongly about, but true to form have done nothing about!! My husband knows my wishes, but even though I think he now accepts that I do have Parkinsons, does not see that this is something I may need. Having seen my cousin, and knowing what Parkinsons can do, I know that this is not something I would wish for myself, or my children. I also know that the majority of people do not end up like she did, but who knows whether I will or not.

I will now speak to my GP and also take legal advice to see what action I need to take. Although the Liverpool Pathway may have taken matters out of my hands!! I truly believe that we should have the power to say 'enough is enough' and if I cannot take matters into my own hands, then we should do all we can to ease pressure on our loved ones.

Thanks for having the courage to raise this very emotive subject.

Sue

[shasha in reply to Court]

thanks to you too sue xxx

[Hidden]

The care that many elderly receive in hospital nowadays makes me think you dont need a living will, because the lack of care often recieved leads very quickly to physical and mental deterioration. I have seen this myself as a visitor.

My Brother in law had the most appalling care in a filthy ward. luckily my sister took him home.

I myself have sampled the care at a Local hospital back in 2004 and the only way anyone would ever get me into a hospital now is if I was unconcious.

I do really think that is the intention of the authorites to make care so bad that people refuse to go into hospital.

It certainly makes you wonder.

[PatV in reply to Hidden]

sorry to hear about the state of hospitals in the UK. I hope they are not all that way. Here in NYC they have improved much, but some are better than others, especially the public ones. 2 major hospitals were badly hit by hurricane Sandy. And I hear from friends that the nursing homes are pretty awful. You have to have a dedicated family member visiting you all the time otherwise you lie in your own mess.

Yes I have a living will,, etc. It was required by my attorney when she made my will. I have to revisit it with my kids.

I'm all for the ice floe, if there are any left. Just put me on it and float me out

[shasha]

it sounds horrendous oldtyke and good for you that u are still fighting ...

xx

[export]

Why HASN'T ANYONE TOLD YOU THE FEE PAYABLE TO THE OFFICE OF PUBLIC GUARDIAN .THE SUM OF £ 13O

yours EXPORT.

[shasha]

good point ta export

[Hidden]

I did not read all the replies. So if I'm repeating things, sorry! There is a difference between a Power Of Attorney and a Medical Power of Attorney! A Power of Attorney (POA) needs to be done by an Attorney! A Medical POA can be done by you and you need no Attorney for this to be legal! You can print them off the internet, and as long as they are signed and witnessed by someone other than those you have appointed it's legal! You do not have to pay to have this done! You can have it on a napkin as long as it's signed, dated and witnessed, it's legal! Be sure to include your wishes as far as end of life issues, such as tube feeding, ventilator, IV fluids etc...and be sure your POA (you can appoint more than one person. And is wise to do so in case something happens to your first choice, or they are not close by at the time, or can't be reached) can follow your wishes as you want them! Hope this helps and makes sense! Be sure to check the laws in your state! They do vary! This is true in Illinois! I did these for patients in the hospital. I was a Chaplain!

Blessings,

Carol

[shasha]

thank you very much carol - i live in france so will need to speak to a notaire here and in the uk i think

[parkie-Al]

Hi Sha,

I have both a Living will and Laraine has power of Attorney , we done this last year and i feel good about it , i just did not want any old tinker desiding what was best for me, as Laraine is a Solicitor and also a notary public it cost me he haw , if you want i will scan what was drawn up for me and email it to you to give you some idea of what i / we put in it

love

alan

[shasha]

hi al

that would be really kind of you both - i was going to speak to a solicitor that i know in the uk but i would prefer to use a document that laraine has drawn up

love sha xxxx

[parkie-Al in reply to shasha]

Hi,,

No problem , I will scan them and if you send an email to [e-mail] i will attach and send over to day

XX

[grammieof3]

Oh yes i have living will medical power of attorney organ donor keep it all in a book and i do have my burial plot cause u now I've never seen a uhaul behind a hurse spelling wrong but u get my point

[Emily1957]

I gave all my doctors instructions in writing--and put in my Living Will – that I am never to be given a pneumonia vaccination. Pneumonia used to be referred to as "the mercy killer"; it takes people out relatively easily if they are lingering and suffering, and I want that option. I also specified in my Living Will that pneumonia is not to be treated at all if I am in various conditions: if I have advanced dementia, Alzheimer's, unbearable PD, etc. After getting the necessary legal things written, it was actually a relief to add a lot of personal things that people might not think of: I want my loved ones near me; I want my room to be kept quiet: no blasting TV etc. I want to be kept warm. I want my feet to be warm. I want certain people to be around me. I have REM sleep disorder and nightmares; If I am unconscious I do not want them to wait for relatives to arrive, but just let me die quickly. I want my Parkinson's medications to be stopped, as they will keep me alive longer. I want comfort measures, including medical marijuana, eyedrops, Biotene gel for dry mouth, etc. I actually found it to be quite a relief--and almost fun--to get all of these things off my mind and on paper. I gave my daughter medical power of attorney, and specified that I want my MSW medical advocate to support and advise her. I have also taken the precaution that my mother wisely took our entire lives. She frequently told the story of how my great-grandmother had a heart attack on Thanksgiving day. She was very old and quite Ill. The family did NOT call an ambulance, but supported her in the very brief time she remained alive. (An uncle was a doctor and knew what to expect.) I have told my children this story many times, and said "Don't automatically call an ambulance; if it's my time, let me go." It's my understanding that emergency room doctors are obligated to do everything possible to save a person, whether they have a living will or not, or until someone can produce it. I still have to add a section about hospice, as their standard medications would have to be adjusted Parkinson's.

Sasha, I would be very careful about projecting into the future too much. You don't know what you can tolerate, and the will to live is very strong. Eight years ago someone suggested medical marijuana. I said that if I ever got to the place where I needed medical marijuana, I wouldn't want to be alive anymore. Well, here I am; I now need medical marijuana for the tremor. I am very happy and I very deeply love my family, and I very much want to be here, and I have hope for a good life. So prepare for tomorrow, but do not emotionally experienced the "what if's" ahead of time. You don't know how you'll react to situations until you get there. And 95% of things we worry about don't happen.

[shasha in reply to Emily1957]

THANK YOU SO MUCH FOR YOUR REPLY AFTER A YEAR !

[Hidden in reply to Emily1957]

The story about your grandmother sadly reminded me of my mother. I was in the emergency room with her, my wife and my father. My mother said to my father, "let me go". This was her living will that I could not get her or Dad to put in writing. She did pass soon after. She had been through emergency treatment on several past occasions. My Dad never accepted her passing or the "failure" of the doctors to bring her back one more time.

As for your tremors and marijuana, if you can hold off, soon there will be this treatment:

Ultrasound surgery for PwP

insightec.com/Parkinson_Dis...

healthsystem.virginia.edu/f...

on.ted.com/a01aj

ted.com/talks/yoav_medan_ul...

[Emily1957 in reply to Hidden]

I did hear about your mother. Your post inspired me to take matters into my own hands with my mother. She keeps promising to do a living will, but has not. She's 85. I will complete the form and hand it to her with a pen for her to sign it. I think a lot of us will have to just do it for people who don't ever get around to it. One of the biggest dangers in hospitals now is of being kept alive too long.

Thank you for the links to the ultrasound surgery. I will follow it, but I'm scared to death of the thought of any kind of brain surgery… Clinical trials for the duodopa pump are open again on clinicaltrials.gov. Maybe that will be my last resort....

[Hidden in reply to Emily1957]

Ultrasound is painless, non invasive, just as is an X-ray. They do not cut into the scalp. They send or direct focused "radio waves" at a target at the back of your brain, You are positioned in an MRI machine they use to guide this beam.