1. < Caregivers

Mercy and Quality of Life vs Quantity of Life

Posted by fiesty76 @fiesty76, Jun 8, 2020

My dearest friend has been hospitalized for 12 days on the critical care cancer floor. The hospital will allow only one visitor per 12 hours. Her guy has been with her non-stop and is near exhaustion.

My friend's daughter became so disruptive on all fronts that my friend sent her home on Mother's Day. She has now been informed of her mom's condition and will be back Wed. Thankfully, two of our guy's daughters will also arrive this week also from out-of-state.

Until this hospitalization and since release from her previous one, my friend kept weekly appts at the cancer center for infusions, wound care, pain mgt and lymphodema massage by p.t. Both my friend's cousin and I questioned the purpose of continuing chemo and home health rather than Hospice following her first hospital release. She continued to become more ill and there were several trips to ER but not hospital admission; instead she was sent home with antibiotics for her spreading cellulitis.

My friend has become so weak that she cannot leave the bed, it takes two attendants to turn her and she is in diapers. She has said to her guy, her cousin and me that she is ready to stop. One doctor was ready to dismiss her tomorrow. Another said yesterday that she would remain in hospital a few more days to fight the "cellulitis infection". Why? An inoperable tumor was found on her shoulder and there is a constant secretion stream under her arm.

Her guy met with Hospice yesterday and finally initial plans were made for her release home. This morning her oncologist said that infusions would "resume" once she is released from the hospital. Hospice told our guy that as long as she was receiving infusions, they cannot help. Her guy is confused and overwhelmed and didn't tell the oncologist that there would be no more infusions. Both my friend's cousin and I have urged him to do so.
How can an oncologist advise such a preposterous thing? I would have ditched him early on but it was not my call.

Only yesterday did they start sedating her enough to control her pain. The atty. hired to change med. poa, legal poa, will and other financial changes absolutely dropped the ball and has done nothing. The daughter is listed as the med. poa for the hospital and cancer center. If my friend lives until her daughter arrives, I can only pray that the daughter will insist on Hospice. Home health is not trained for the end of life care required.

In an earlier post, @IndianaScott voiced his wife's profound desire for quality vs quantity of life as she made her end of life decisions. Although it was hard to endure, I respected and supported both my mom's and sister's equally emphatic choices of quality over quantity of life decisions. Where is the mercy in prolonging needless suffering?

I'd been jotting remembrances of the zany, hilarious, fun loving antics my friend and I've shared along with the more meaningful ways she's continually changed my life for the better over the past 40 yrs. Her guy says she smiles and has laughed, even nodded in agreement at some parts and has shed a few tears at others as he's been reading them to her for the past few days. How do you say good-bye to someone so special and loved who can't have visitors because of her condition and Covid?

Two of her favorite mantras are: "There is a reason for everything". I am really struggling with that one right now. The second: "This too shall pass" only makes me pray for sooner rather than later.

If this is in any way found to be too upsetting or inappropriate and is not posted, I will understand. I just needed to convey to others who have walked this path the helplessness, pain, and anger I feel during this most difficult time.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 8, 2020

@fiesty76 Your post is neither too upsetting, nor inappropriate. I imagine there are several members here who are nodding their heads in agreement and support of the position you find yourself in. My heart absolutely aches for you, that you are not able to reach out to your friend physically, and read those remembrances yourself, to her.

Before she loses the ability to communicate, she must make her decisions known, in writing. If she is not a spouse to "her guy", then the medical POA her daughter has takes precedence, as a blood relative. Your friend can ask for a POLST form [Physician's Order for Life Sustaining Treatment] that she would complete and provide to her doctor, hospital. She needs to communicate clearly what she wants. A doctor will follow their oath to care for a patient in the absence of otherwise stated wishes. I myself have done the "5 wishes" that spells out everything. It is part of all my paperwork. A patient has the right to stop treatment, or agree to only certain treatment, but it must be memorialized in writing with witnesses.

I hold you, your friend, her guy, and all the friends/family she has impacted, close in comfort.
Ginger

REPLY
lioness | @lioness | Jun 8, 2020

@fiesty76 Im so sorry to hear of what you are going through . You are going down a rough road such heart wrenching about your dearest friend . If she is as bad as you say Hospice can help her with all the legal work also beside making her comfortable It is her decision no matter what everyone else thinks but it is hard I know to see someone suffering . Blessings to you fiesty 76 your in my thoughts

REPLY
fiesty76 | @fiesty76 | Jun 9, 2020

@gingerw, Ginger, I cannot thank you enough for your speedy and so helpful response. I googled the POLST and then a site listed for the form accepted in Texas. It is called: Medical Orders for Scope of Treatment (MOST). I have printed out a copy to take to my friend, Fred's house and also the same form for both TX and CO to add to my End of Life File for daughter. The website that lists state-by-state POLST documents is: https://www.everplans.com/articles/state-by-state-polst-forms .

I, too, have done the 5 Wishes and included it in the file above. However, my estate atty. said it was questionable about its being a success if legally challenged in TX. At least it can be supportive to the other legal documents drawn up.

Thank you, @lioness, for your warm and comforting posts as well, Linda. The comforting words mean so much because I only feel safe sharing my concerns and some of my feelings with my daughter and friend's cousin. Too often we have all experienced well intentioned words from others meant to comfort but can lead to more distress. This is too deeply personal and I'm feeling far too vulnerable to take that risk.

My one advice to All, especially during this troubling time of the COVID virus is to take the time, make the effort Now to put your financial security and end-of-life wishes, Durable POA, Living Will, Will, and other emergency instructions in order legally and officially with notarized copies to those in charge so that in an emergency, your medical, financial, and family teams can clearly know and implement your desires.

At the time my friend and her guy made out their wills and medical POA's they had no clue that their lives could later be so destructively impacted by a very mentally unstable, irrational daughter. The current atty failed them dismally and we now fear that it may be too late to even change the medical living will instructions. If so, the daughter could probably prevent access by our guy and instate herself as the only in-hospital family caregiver.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 9, 2020
In reply to @fiesty76 "@gingerw, Ginger, I cannot thank you enough for your speedy and so helpful response. I googled..." + (show)
@fiesty76

@gingerw, Ginger, I cannot thank you enough for your speedy and so helpful response. I googled the POLST and then a site listed for the form accepted in Texas. It is called: Medical Orders for Scope of Treatment (MOST). I have printed out a copy to take to my friend, Fred's house and also the same form for both TX and CO to add to my End of Life File for daughter. The website that lists state-by-state POLST documents is: https://www.everplans.com/articles/state-by-state-polst-forms .

I, too, have done the 5 Wishes and included it in the file above. However, my estate atty. said it was questionable about its being a success if legally challenged in TX. At least it can be supportive to the other legal documents drawn up.

Thank you, @lioness, for your warm and comforting posts as well, Linda. The comforting words mean so much because I only feel safe sharing my concerns and some of my feelings with my daughter and friend's cousin. Too often we have all experienced well intentioned words from others meant to comfort but can lead to more distress. This is too deeply personal and I'm feeling far too vulnerable to take that risk.

My one advice to All, especially during this troubling time of the COVID virus is to take the time, make the effort Now to put your financial security and end-of-life wishes, Durable POA, Living Will, Will, and other emergency instructions in order legally and officially with notarized copies to those in charge so that in an emergency, your medical, financial, and family teams can clearly know and implement your desires.

At the time my friend and her guy made out their wills and medical POA's they had no clue that their lives could later be so destructively impacted by a very mentally unstable, irrational daughter. The current atty failed them dismally and we now fear that it may be too late to even change the medical living will instructions. If so, the daughter could probably prevent access by our guy and instate herself as the only in-hospital family caregiver.

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@feisty76 Have your friend and her guy contact the local/state bar association. Each attorney who is practicing must be a member in that. He may want to file a complaint about the failure of service the attorney performed. They may also point her guy towards a grey law attorney who can assist at short notice to accomplish what they may need.

I cannot agree with you more, to have all paperwork in order. However, for so many people, it is a touchy subject, dealing with mortality and possible situations. Not everyone wants to think about it. I have seen firsthand what it is like when a person can no longer make decisions, nor complete paperwork.

As to 5 Wishes, there is indeed an additional form that is required for Texas. Here is the FAQs [Frequently Asked Questions] from their website. There are a few states that require additional state approved forms, and the website gives you a link for these.
https://fivewishes.org/faqs
Please do not feel you are a burden. Please reach out to us for support, we are here for you.
Ginger

REPLY
1 reply
rosez | @rosez | Jun 10, 2020

God's peace to you and your friend

REPLY
fiesty76 | @fiesty76 | Jun 10, 2020
In reply to @gingerw "@feisty76 Have your friend and her guy contact the local/state bar association. Each attorney who is..." + (show)
@gingerw

@feisty76 Have your friend and her guy contact the local/state bar association. Each attorney who is practicing must be a member in that. He may want to file a complaint about the failure of service the attorney performed. They may also point her guy towards a grey law attorney who can assist at short notice to accomplish what they may need.

I cannot agree with you more, to have all paperwork in order. However, for so many people, it is a touchy subject, dealing with mortality and possible situations. Not everyone wants to think about it. I have seen firsthand what it is like when a person can no longer make decisions, nor complete paperwork.

As to 5 Wishes, there is indeed an additional form that is required for Texas. Here is the FAQs [Frequently Asked Questions] from their website. There are a few states that require additional state approved forms, and the website gives you a link for these.
https://fivewishes.org/faqs
Please do not feel you are a burden. Please reach out to us for support, we are here for you.
Ginger

Jump to this post

Thank you, @gingerw, for your response, worthwhile suggestions and the additional 5 Wishes fact link.

Also my gratitude to @rosez for your loving benediction. Comfort, Mercy and Peace are my daily prayers for my friend and her guy.

REPLY
bradmm | @bradmm | Jun 13, 2020

My wife and I have talked about this topic for years. We are firm believers in quality over quantity. She has been dealing with blood cancers for 14 years and just this week had a stem cell transplant. We both agree that, at some point, not having quality of life means no life at all... but we don't know how to go about "self termination" in our state (probably have to go elsewhere). I don't have any useful comments for your situation fiesty76 but I wanted to chime in and thank you for bringing up the concept of quality vs quantity.

REPLY
fiesty76 | @fiesty76 | Jun 13, 2020

Hi, bradmn, Brad, thank you for your response. Several years ago, I began looking into sites and states that allow Death with Dignity. At that time, TX, was not one but there were six or seven listed. Books have been written on the subject but haven't bought any. Don't have a ready reference for you but appreciate that I am not alone in my thoughts and desire for choosing how and when to end my own life. Told my heart surgeon son-in-law that I was depending on him to help me move to a state where residence requirements (it varies by state; some 6 mos) could be met and choice of "when and how" would be mine to make without penalty to others. My thoughts and best wishes go to you and your wife as you have traveled the path of cancer for so long. Hoping that her recovery from the stem cell transplant will be successful and that you and she can share many more quality years together.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 13, 2020
In reply to @fiesty76 "Hi, bradmn, Brad, thank you for your response. Several years ago, I began looking into sites..." + (show)
@fiesty76

Hi, bradmn, Brad, thank you for your response. Several years ago, I began looking into sites and states that allow Death with Dignity. At that time, TX, was not one but there were six or seven listed. Books have been written on the subject but haven't bought any. Don't have a ready reference for you but appreciate that I am not alone in my thoughts and desire for choosing how and when to end my own life. Told my heart surgeon son-in-law that I was depending on him to help me move to a state where residence requirements (it varies by state; some 6 mos) could be met and choice of "when and how" would be mine to make without penalty to others. My thoughts and best wishes go to you and your wife as you have traveled the path of cancer for so long. Hoping that her recovery from the stem cell transplant will be successful and that you and she can share many more quality years together.

Jump to this post

@fiesty76 One of the reasons that I campaigned to move to the state where I am is because of their right to die laws. I don't believe that somebody should tell me that I have to hang on longer than I want to, if i am suffering with a disorder that will rob me of my dignity and desire to continue. Quality of life is a very different definition for each person. Try to live each day to the best that you can.
Ginger

REPLY
bradmm | @bradmm | Jun 13, 2020

It's nice to have a conversation with like minds!

REPLY
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