Coping with choosing death...

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Coping with choosing death...

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I take care of my 84 year old grandmother. 2 years since it got bad, but she has lived with me for 5+. She has dementia, a type of blood cancer and requires blood transfusions (2+ units) every 2-3 weeks. We have good days, but quality of life is poor. She feels bad alot. She cries when I tell her she has to go to the hospital and says it's time for her to die on a regular basis. More days than not. She cries alot just worried she is a burden. With the dementia she is not the same person I grew up with and is totally dependent. In lucid moments she still tells me she doesn't want that (of her own accord), but won't accept that that's what she is - dependent.

This week I didn't take her to chemo. I just took her to the hospital for more blood (hgb 5!). I think if she was herself, she would want to end this. She has said it many times over the last 6 months, but of course forgets within minutes. When she is super low I give her anxiety meds. But have to lie to her bc she doesnt want to take them.

I am tired. She is tired. If I decide for her, NO MORE treatment, is that murder? Will the guilt destroy me?

Cancer Care Decisions End of Life Treatment

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Death can be a blessing. Sometimes we fight so hard to keep people that we don't listen to their wishes because we think they should want to live. Continuing to live is often the goal for many people so it's difficult to shift your thinking. A life filled with pain is not always preferable to death. We are all going to die, she may be telling you she is ready. It's ok to accept death and even plan for it. It's actually a gift to be able to choose how you are going to die and prepare for it, how many people get that chance?

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NTxGdaughter - I have not read others’ responses, so forgive me if I am repeating what is already here. In response to “will the guilt destroy me”, I’m afraid only you will know the answer to that question when the time comes. If you fear that that may be the case, try to find a solution you think you will be more comfortable with in the long run. Is there another possibility for both of you such as admitting her to a facility rather than stopping care altogether? That would relieve you of the day-to-day, hands-on caregiving and relieve your Grandmother of the worry that she is a burden to you. Possibly that relief would allow your Grandmother to get the care she needs and you to find some peace. God bless.

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Talk to her doctor so he can explain everything to you. Specifically ask: What would you do if this was your mother. Ask two doctors if you have to. Then you can make a decision on how to proceed. If all these treatments are just barely a bandaid on the problem, why put her through all the stress all the time of getting out of the house for treatment? If treatments will fix her problem, then continue.

It comes down to - don't make the cure (treatment) worse than the disease.

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My husband (87) died last week, in a long term care facility, of Covid related problems. He stopped eating, drinking and refused his meds, in addition to suffering with serious dementia problems. The doctor called to tell me if he didn't go to the ER for hydration he was going to die. I made a tough decision - to let him pass, and he was gone within two days. I knew, and I believe he knew, that it was time to let go. If your grandmother is telling you she doesn't want more treatment, honor her wishes. There is nothing to be gained from insisting that she continue to suffer. I wish you well, and hope you find the strength to do the right thing.

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I understand up to a point as to how you feel. My parents never lived with me. My father died about 18 months ago and had been wanting to die for a few years. His problems were mostly cognitive. However 2 years ago he had congestive heart failure and other issues and decided he no longer wanted to pursue medical treatment. His doctors recommended we look into hospice. He was still in assisted living with my mother but shortly after he was getting hospice care he had to move to long term nursing. He was no longer able to qualify for assisted living and he was wearing my mother out having her do things for him instead of the staff.

I can't give you any definite answers as I don't know the prognosis of your grandmother's cancer. You should speak to her doctors if you haven't already to know this. Do you have a durable power of attorney for your grandmother (or is there a medical directive), if not you may need to go to court and get guardianship over her.

Depending on what her doctors have to say, hospice may be something to look into. Dad's hospice provider was a Godsend for my father and our family. For the most part hospice is covered by Medicare Part A (only things not related to the hospice reason aren't covered). There's nurse and nursing aide and bath aide from the hospice were very caring. My father was initially against the bath aide, but once he got used to it he adored his bath aide.

If hospice is not an option, I would recommend you place your grandmother in a long term facility to take over her care. And you should not feel guilty about this as you are already feeling guilty. The cost to you of caring for your grandmother is tearing you up. You need help and a break, especially if you are the only one caring for her. I tried to get over to my parents once a wee; the week I skipped my father just closed his eyes and died, something I felt bad about; I would have been there that day and been with him as he broke his earthly bonds. But I know he is at peace now.

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Nature will take its course. It sounds like your grandmother is ready for that to happen. At some point, 'treatment' is torture. Dementia makes this all more painful because you have to interpret her wishes instead of her specifically stating them.

Will you feel guilty if you choose to stop medical intervention? Yes. But you feel guilty over your grandmother's quality of life now.

There's no avoiding guilt. Some people feel less guilty if they feel like they "tried everything." Others feel less guilty if their loved one had a dignified and pain free death without the insult of pointless medical intervention (you can probably tell my feelings on the matter).

Call hospice and let them do an evaluation. Without that, you're not fully informed enough to decide.

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Imho, perhaps it's time for Hospice. Prayers sent.

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Oh my dear, I am sorry for your dilemma. I was blessed because Mom had a living will. You received so many wonderful responses. I can only say what others suggested. Talk to the doctors, get hospice assistance. Let them give you advice because if you feel so much guilt now for skipping one chemo (during COVID which is so risky). Think of how you will feel if you make the decision to stop all treatments on your own. I believe that your beloved grandmother will be happy with your choice once you seek professional guidance. God bless.

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We, as mortal humans, have no say over when our loved ones will pass away. We have no say over life and death, only God has that ultimate say. For you to believe that you have the power to 'kill' your grandmother by letting nature take it's course by refusing chemo from now on is to think you have the power to play God. Think about it. Your grandmother's heart will stop beating when it's her time to transition to the next phase of eternal life; not when the poison stops being pumped into her body. Some people die FROM chemo treatments, did you realize that? So, to make a decision to allow nature to take it's course is to make the most humane decision possible for this woman you love so dearly. Allow her body to leave this plane of existence when it's her time, naturally, instead of trying to prolong her agony for a few more days, weeks or months, what's the point????

My mother is 94, with moderate dementia, chronic neuropathy pain in her legs & feet, and a bunch of other issues including constant complaining and dissatisfaction with life in general. I pray daily for God to take her, I honestly do. Why would I want to extend THIS life she's living?????? She's already outlived the average person by 16 years! Enough is enough, that's my perspective on things. If she came down with cancer, the last thing I'd do is sign her up for CHEMO!!!!!!!!!! And I wouldn't feel one ounce of 'guilt' for preventing her from going thru THAT level of added pain & anguish on top of what she already goes through.

Leave grandma alone now & let her live out her final time on Earth in peace & love, with you by her side and no more extraordinary measures to prolong this phase of her life. She's tired, and rightly so.

Wishing you the best of luck accepting that you have no control over the outcome here, and wishing you peace in the process.

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Dissues with her if she would've to be put on Hospice Care which wojld mean no more Cancer treatments or Blood.

She would just ne home with medications to help her with any pain.

Then let her Dr know what she decided.

If I knew I was going to get better. Justice aittle ling taking chemo, I would rather have what little time I have not in the Hospital and being sick from the Chemo Treatments.

Let your mom make the decision on a good day when you know she is saying what she really wants.

Prayers

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It’s the OPs grandmother not her mother and her grandmother has dementia and cannot participate in a serious discussion about hospice because...of her dementia! Per the OP, she doesn’t know what she wants.

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The natural human lifespan is about 80 years, give or take. It is completely understandable if someone past 80 wants to live whatever years they have left in peace without drastic or painful medical procedures.

I highly recommend the book Rethinking Aging: Growing Old and Living Well in an Overtreated Society by Dr. Nortin Hadler, MD. We are doing way too many tests and treatments, particularly in the elderly.

It has to be her decision, but as you say, she doesn't know what she wants. I agree with others who have said that you should talk to her primary care doctor and hospice. God bless.

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I’m caring for my 88 year old mom with advanced stage of dementia. Long before her condition got bad, my family decided DNR because there’s no cure for this awful disease that only gets worse. She’s not herself, cries constantly with sundowning, has no quality of life, and has outlived all her siblings, 2 husbands, and 3 daughters. My prayer is for her to have inner peace, to enjoy these days and hours, not worrying. But dementia causes her to worry, fret , cry, and be frightened at all times. Thus, I have no peace. In God’s perfect time, He will call her home. At no time am I going to prolong her suffering. I would not dare want someone to make my suffering to continue on and on. For now, I care for her until God takes back the breath He gave her.

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Not Murder; You should have no guilt, but no one can control another's emotions. I see you have 40 responses already and I'm sure what I'm going to say has probably been mentioned. One, is pat yourself on the back for doing what seems no one else is available or wants to take on. You are clearly a blessing in Grandma's life. Dementia alone is a huge load to carry, and then you have the physical illness as well. It seems to me in spite of the dementia many people with it can convey some basic emotions and desires or wishes. Grandma, in her own way is making them clear. If you respect her, honor them. She doesn't want to be back in that hospital environment. I would be investigating the best hospice care provider in your area and engaging them. At least that way for one, she will be able to get some care at home, and whatever decisions are made you will not feel so alone in making them. Take good care,

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Talk to her doctor to get an honest answer. Are the treatments going to cure her cancer? Will continued treatments make her life better than it is now? What does he think about hospice for her situation? Write down all of your questions before the visit to ensure you get answers to help you make decisions.

To treat or not is not 'murder'. Many people of very sound mind choose not treatment when they know the facts about the treatment: Quality of remaining life versus quantity of days.

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When I asked my father's physician to help us discuss hospice when he was clearly dying of cancer I felt terrible guilt and like he would think I wanted him to die. The opposite happened - he told the doctor he had had a good, long life and he was grateful. We had 29 more days with him, cared for at home, where he died peacefully in his sleep. Choosing hospice is not a death sentence, choosing hospice is an act of love. I suggest you contact a hospice agency for help.

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Dear "AuthorKathleen,"

My experience was similar to yours. In 2004, my dad at the age of 82, was diagnosed with Stage 4 Pancreatic Cancer from being a diabetic. We saw an Oncologist who told him, there really weren't very many options but if he wanted to try chemotherapy, they would go that route. When he said "ok," I was stunned. I was 41 at the time and had never heard of hospice.

I went home and l had my radio on the sports talk radio station that I'd been listening to consistently for quite awhile to get away from regular talk radio. I heard a commercial for hospice and called them right away requesting their informational packet.

As the day wore on, I was getting more upset about the thought of him getting chemo plus it would be hard for my mom and I to transport him and get him up to the 2nd level where the Oncologist's office was.

Early that evening, I called my mom and said I didn't want dad to go through needless suffering for what may keep him alive for just a couple of weeks. The next day, I went over there and had a talk with my dad telling him the same thing and told him about hospice. He was very receptive to my thoughts.

Later, the case manager came by and we were all on board and signed him up that day. It truly was the best decision made for him. They set him up in the living room of my childhood home and took great care of him. He too died peacefully just three weeks later with the hospice nurse, volunteer, my mom, husband and myself all surrounding him as he drew his last breath.

It was the most loving thing to do for him and I've never regretted it and was extremely grateful to them because he died with dignity!

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Here is my take on the situation. This poor soul is old with dementia and all kinds of problems that will only cause more situations that will be increasingly worse for all concerned. She has a few moments where she realizes the end is near and doesn't want to go on - and who could blame her for that. And you have to bear this burden and it is impacting you horribly too. My feeling is that the best would be if she were allowed to pass over so there is finally peace. I would not do much of anything at this point to make life go on but I would medicate her to take the anxiety off and make things easier for both of you. Pray time passes quickly and she passes - just don't push to keep her - just the medications now. I pray for you.

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PoPolarBear said it so aptly: Treatment at this stage means postponing death and not necessarily prolonging life; Worse, what the situation is prolonging is suffering - whether it be physical, familial or spiritual.

Treatment is not going to give her (or you) the life she once had/or allow her to be the person she once was.

As a social worker, I want to say this: You might be feeling both guilt AND grief. Easy to confuse/interchange the two because they are both such intense feelings. Don't confuse the two. When you feel guilty, allow your thoughts to also revisit the times she said she didn't want to be a burden. When you follow her true wishes, you are not murdering her, you are honoring her.

As a daughter who had my own mom with Parkinsons and Dementia at my home for 5 years and had to transfer her to a hospice facility for 24 hr care, I understand the guilt, regret and confusion. I suffered every day until I realized my torment wasn't about if I was doing the right thing for her, but that I was already missing her and she wasn't even "gone" yet physically. It is normal to feel grief as we prepare unwillingly to say goodbye while we are trying to respect their wishes.

Lastly, In the end, your faith night comfort you that you really aren't omnipotent and only God can comfort her and love her unconditionally. You are not held accountable to a standard higher than God. Your intentions are what count. Focus on loving her whatever the day brings.

If any of this strikes a chord, think about talking further with hospice staff, a social worker/nurse where she goes for treatment, or a clergy person. YOU ARE OK - you are not crazy and you are not a murderer. You are a loving grand daughter who stepped up to help. So many of us support you!

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I know that often the treatments are far worse that the disease. When my dad was in his last hospitalization and some heart repair was attempted with no success it was time to go home. He longed to be home with my mother. His kidneys were failing and I along with my sister refused dialysis. God bless the doctor who encouraged us to take him home and make him happy. He died 7 days later with hospice care at home. Take care that her last days are what she wants and not the torture planned. This is her journey. Respect her wishes and yes my dad had dementia too. My dad did have a DNR in place so I was protected.
You are absolutely doing the right thing and will be blessed for it.

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sorry to hear of so much sorrow and being tired. most caregivers are tired........tired of dealing with everything especially if you have no help. Does your grandmother have a DNR or a living will? Have you checked with Hospice, they might be able to help with some things and relieve some of the stress off of you. Is there anyone else that can take her to her chemo treatments? Did the doctors say what are her changes with the chemo? I know my mother had cancer 2 times (1 when she was 68, breast removed, then another time when she was 88. she said NO chemo but the doctor said all she needed was radiation. She said that if she ever got cancer again, no treatments at all, but then my mother is 93). She is diabetic and starting to have some other issues. I hope you can find someone to help you.........YOU need to take care of yourself also and God bless you for what you have been doing.

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It’s time for Hospice Care. Let them take care of her and see her through her last days..with dignity. Let them help you to understand that allowing her end of life journey w/ no more medical bandaids is love, not guilt.
I know someone who had a blood cancer and went for transfusions weekly, then every few days. She finally “No more.” She died with dignity 24 hours later. The transfusions didn’t give her a better quality of life, it just postponed the days God had written for her in His book.

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You said it right! Dignity is the focus and respect for their happiness these last days. It is their journey home.

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I brought my mother to live with us her last 9 mo. She initially perked up and did fairly well for just over 7 mo. Then it was downhill. We signed up Under advice and with doctor signing off on it, she went under hospice care in our home. No more prodding, hospital, etc... Hospice eventually brought in a hospital bed. She lived her last few weeks in our LR, slept a lot, sometimes ate, sometimes not, same with hydration. She was mostly comfortable until her last day with us. I don't think you can equate discontinuing "extraordinary measures" to murder by a long shot. And extraordinary measures is what the blood transfusions and chemo amount to in her weakened condition, IMHO. I think that given a description of something like you grandmother is going through, most individuals still of sound mind would not opt for those extraordinary measures. I won't say that I didn't review our decision occasionally, but I did know that based on medical and spiritual advice we made the best of her last few months on this side of the veil. God bless you as you navigate through these difficult days.

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You are not killing her. To kill her would be to deliberately take away her life. If she is tired, hurting, and expressing that she wants "this" to be over... she is telling you to let her go.

It sounds like it is time to talk to her doctors about hospice. Hospice chooses to focus on the quality of life of a client and stop focusing on curing a disease. With hospice, she will get care to make her comfortable so she can enjoy the time she has. I would also suggest that you need some more people involved in her care - you sound like you're getting burnt out. Ask family members, friends, members of faith community and paid help to take some of the burden off of you. You need to be able to get 7-9 hours of sleep every night, 3 good meals daily, time to take care of your own health, and some time off to socialize with your friends or pursue something you enjoy,

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I've read several of the answers, but not all so apologies if I repeat what you have already heard. First and foremost, you want to protect yourself against accusations of elder abuse. You should discuss this with an elder attorney and a trusted doctor. It used to be common practice to just let an elderly parent "go", but the laws are much more strict these days. In my state a person is considered competent even if they are only cognoscent during very brief periods of time. Perhaps if your grandmother can indicate to a lawyer or doctor that she no longer wants to continue chemo and/or the blood transfusions, they can put that in writing for her to sign and be witnessed (if you can't afford a lawyer check with your state's division on aging for help). I will tell you that, in my state at least, every time my mom has gone to the hospital, the doctors have asked her if she wants to be resuscitated, even though they have her Advanced Directive on file. All but one time she said yes.

This is so hard to go through. I take care of my 86 yo mother who has ALZ, dementia, kidney disease, possible colon cancer, fecal incontinence and is going blind in one eye. Her doctor won't let her go through chemo or any form of surgery because of the risk from anesthesia. I know my mom would rather be with her deceased husband and the Lord more than anything else. I have even prayed that God would bring her Home, but until then we take it day by day. Be gentle with yourself. Talk to a doctor or mental health professional for support. <3

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I agree with you. I looked through these answers for someone who didn't just jump in and say, yes, let her die. My take is that you never know when a relative or some figure of authority are going to question why she was left to die and what the consequences may be. I understand what the original poster is going through, but there are laws and red tape and you are so right in advising her of that.

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Does she have a living will and do you know her medical wishes? Some people do not want heroic measures to be taken to keep them alive. My mother (with advanced dementia) and living in a memory care facility, kept falling, and they'd send her to the hospital every time to be checked. She hated going to the hospital and didn't understand why she was there or what they were doing to her; she bit the nurses. At that point we decided that she would be less stressed if she didn't go to the hospital and changed her instructions to "no hospitalization" with hospice-type care just to make her comfortable and not to force her to do anything that she didn't want to do. Her doctor signed off on this. She has been happier just being left alone and has managed to hang on for much longer than we all expected.

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FYI, if anybody needs help with the logistics of getting to the doctor: The American Cancer Society should help with rides to and from doctors and chemo. I know you are having more issues than just transportation though. FOr your mom's last times, get as much help as you can so that she and you can make this time the best possible.

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Charlie sue,,, make sure all your T's are crossed and your I's dotted...
My fam knows what to do if I get that way.... "run away" !!! no, not really..

I hope they know I will be pestering them when I" jump that creek"

It is okay... nothing is guaranteed in life... so let lif happen as does the rest of the things that go with it.... just make sure your "end of life" is "natural" or "preserved" as you wish it to be... Me? Ya, no, if my brain ain't functioning as it should be, as this day, is the first mark of the day for the rest of my life... then please, spare all those around me... don't let my brains rot the rest of my friends and family...let me go.. .thank you and GN

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BABZ:::

I have a copy literally taped on the wall above my LO's bed.. It is light pink so it doesn't stand out as much,,, but it is there for everyone to see...NO Questions....

I have my contact information posted on the walls, pictures on the dresser....
everything anyone needs to see is right there ....
and originals where they should be... and I am sure that the practioners and insurance have a copy somewhere too.....
Made that mistake once... didn't have a copy anywhere so anyone could see, and since I wasn't there.... it was okay... I think the ER made the right choices....

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She has said ...she wants to die. Talk to the Dr. if she has a pain issue he can put her on a morphene drip. The morphene tells the heart ...need for oxygen is lower and it slows the heart down and allows the brain to gradually shut down.
The Hospice Chaplain can help you...If you do not want him the Hospice Psychologist can.

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Morphine And Ativan separates the brain, (more relaxed soul)from the body.... a Key Ingredient trust me :(
actually been there, and wasn't told about the Ativan until my expert hospice came on board in the early AM hours....

My hospice team did not offer DRIP.... why? I was told because the patient could overdose... { (?) really? at this point did it really matter? }

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I took a blank POLST, and I filled it out as to how I would want it filled. I will talk with my doctor and tell him I want that in the records, and I will get a lving trust and DNR form filled out.... Don't want anyone thinking they need to keep me around...for what? ...?.....
I picked up a recent Readers Disgest. An article in there was about dentists and how one dentist took advantage of a whole list of patients, retired, and sold his business to a new and upcoming dentist right out of college. Oh,, what a story...
and I had an experience with my mom's dentist. He retired, and sold his practice to a newbie. The newbie had her in the office every week, working on one side of her mouth, and then the next... racking up $$$$ ..paying for his college and his new fancy sports car. I didn't know what was going on until my mom broke down in TEARS...HER MOUTH WAS FALLING APART..!!!! ????
What a traumatic and cruel thing to do to someone... Seriously.... I immediately took her to my other dentist,,, and he examined her.. First Question: Why would he put veneers on the molars in the back of her mouth? Exactly Why???? MONEY,,,,MONEY,,, MONEY.... Nobody is going to see them.. they are in the back of the mouth...
I truly wanted to scream at all the older folks in the waiting room to get the heck out.... I saw the newbie doctor, and questioned why he was working on one side when the other wasn't done.....

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Check your state laws ans get an out-of- hospital DNR (OTH-DNR) executed also. Most DNRs are in-facility only. EMTs and such who come to your house for grandma have an ethical responsibility to save her life. Hand them the a copy of the executed OTH-DNR if/when they come to the house; this relieves them of their liability and honors grandma's wishes.

Make sure all your documents have the clause at the end that states copies and digital versions are acceptable. Even include a clause permitting different methods of transmission.

KEEP a posted OTH-DNR on the back of the front door for EMT and any other med personnel who come to treat and help her.

You may know this already, but just in case. Carry all your paperwork with you. Never give out your original, even if they say they'll scan it and give it back to you. Have copies ready to hand out instead.

My mom doesn't want ANY doctor to have control. READ the language on canned and state forms carefully. I had to rewrite some for my mom because a tiny clause still said "at physician's discretion...blah blah blah."

I was a paralegal in my previous life. My mom was a legal secretary/paralegal for 40+ years. Most of those state and hospital forms are written to CYA doctors, staff and facility and shield them from liability. You can customize them to suit your grandma's wishes, make sure you include a clause that releases the above CYAers from liability.

If you need docs notarized, check with your bank. Explain the limited mobility issue. Mine came out to the car so my mom didn't have to get out.

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I sure hope no one keeps me here to suffer when it's time for me to go.....

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