My Right To Life Blog

My Right to Life Blog

By Kathy Reschini Sweeney

This one has been percolating for a long time, and I need to start writing again, so here we go.

If you are here for a discussion about abortion, forget it.  I for one am sick and tired of the emotionally-charged issue of abortion eclipsing the entire concept of rights and life.  As if life is more precious in utero than it is on terra firma.

I want to talk about your rights at the end of your life, not the beginning.  I have some experience here - not on a battlefield.  At home.  Many people would rather come home to die, and if your family has the resources (personal, emotional, financial) to facilitate that wish, you should try.

But the most important thing about the end of life is the right to make your own decisions about how you want your body to be treated.

The death of a family member is awful.  There is no getting around it.  Even when one's theology (like mine) believes that eternal life is the miracle we celebrate our entire lives, the physical body's last breath is still a shock.

The only thing that made it bearable for my family - and we are two generations into this cycle during my lifetime - is that our loved  ones made their wishes known ahead of time.  At a time when they were cogent and rational, and in control.

Maybe there are some of you out there who don't have any control issues.  Bless you.  My genes run rampant with them - on both sides.  Why do you think the Irish and the Italians party so hard?

No one can control their time of death - but you can control the way you die, and believe me when I tell you, it may be one of the only things that keeps your surviving family and friends sane.  That and Hospice (VNA's Hospice Program is a gift from God - no kidding - and if you have the means, you should support them.)

The way you do this - the way you give the greatest gift to your family - is to create a Living Will.  They are also called Health Care Directives.  If you want a gentle, less legal one, go to Five Wishes: http://www.agingwithdignity.org/five-wishes.php

That particular website allows you to print out a document - be sure to check for your state of residence to see if there is anything special you need to do.  Otherwise, google Living Will and [your state/country] and you will find tons of examples.  You do not need to pay a lawyer to accomplish this - although if you are doing estate planning, a good lawyer will make you do one as part of the process.

As most of you know, my Dad died this month.  To say that my Dad had control issues would be akin to saying the sun is kind of hot if you get too close.  Most of his friends can tell you what he wanted at the end of his life on earth (he wasn't a shy guy, either). When he fell last summer, we talked a lot about what he wanted when he died.  He was very clear from the beginning.  I knew exactly what he wanted - and more importantly - what he did not want.  I did not necessarily agree with him (another shocker) but I understood.  He completed all the necessary legal documents to formalize his wishes.

When the time came, it was much harder to follow his directions than I thought.  And it wasn't because we butted heads from the time I could talk.  It was because I didn't want him to die.  I wanted him  here, to drive us all crazy, for a little longer.  

The staff at Shadyside's CICU were wonderful.  They supported his wishes and my duty to uphold them.  (Except for one surgeon - yes, I get that they cut to heal but when the patient doesn't want that - back the hell off the family - it's hard enough, you jerk.  I had to have him banned from the room because he was upsetting everyone,  and frankly, it was hard enough for me and my siblings to stay tough without some insensitive stranger trying to guilt us into something we knew Dad did not want.)

We were able to get Dad home.  We set him up in a hospital bed so he could look out his balcony windows on the town he loved so much.  We would point out all the buildings he helped create, in one way or another.  He recognized the very few of his oldest friends who came to say goodbye.  We kept our promise to Dad that no one would see him at the end.  Bad enough he wasn't in a suit and tie - but he didn't want anyone to see him unable to talk or sit up.  I know we offended a lot of people by keeping them away, but that's what Dad wanted and that is what we did, and we are not going to apologize for it.  If you care about someone, tell them now.

When one decides that the only measures they want at the end are relief from pain and to preserve one's own dignity, there comes a time when there is nothing to do but wait and pray.  I am not going to sugar coat it - it's brutal.  We found ourselves counting his breaths, then counting the seconds between breaths.  I held my hand over his great heart and felt it falter and then pick up a strong beat.  I held his hand and I grieved because I didn't want to lose him again.  

And we waited with him.  We promised he would not die alone.  We promised he would not have pain.  We promised we would protect him from anyone seeing him at what he considered his worst hours.  We prayed and we talked to him and we assured him that he had trained all of us well enough to pick up his work.  We promised him that his time for fighting was over - that we would continue to battle on his behalf so he could rest.

There are no words to describe how hard it was.  If we had to settle arguments over his care, or his wishes, I never would have survived it without a total breakdown.

And in the end, the greatest way to show our love for him was to honor and respect his wishes.  We could only do that because we knew exactly what those were.  I found great strength in taking care of him the way he wanted, no matter how emotionally painful it became.

I am now asking you, my friends and family, to allow your loved ones to honor and love you in the same way.  Nobody wants to talk about end of life issues.  Tough shit.  You have to do it any way, and you have to do it now, while you are healthy and rational.

It will be your last and greatest gift to your family.  I know.  I kept my promises.  It was one of the toughest things I have ever endured, but I am proud that I didn't disappoint my Dad when he needed me most.

 

 

 

 

Comments

[Jessica Grindle]

When my Dad died, it was sort of unspoken how to handle it. I definitely understand what you are saying having gone through it almost 2 years ago, now. It's something I never plan on getting over. People were mad at us cause they didn't know and couldn't go visit him...too bad he's my Dad and it's how he wanted things. Great blog can't wait to get together sometime this summer!

[Kathy Maple]

Such a wonderful blog Kathy. I know it must have been hard for you to do this, and to write this. It is an important topic for sure. I am one that will check out the website aging with dignity, even though I have always told my family what I want, and like your Dad I don't want anyone to see me at the end either, and no viewing me afterwards. I can understand where he was coming from. Take care and I think of you as an awesome Daughter and friend to all.

[Alan Portman]

The most important thing to to let your feelings known while you can.

I have had a durably power of attorney written out for years. Here is the link for Missouri. http://www.mobar.org/uploadedFiles/Home/Publications/Legal_Resources/Durable_Power_of_Attorney/final-dpa-forms-fillable.pdf Google advanced medical directives or durable power of attorney and your state, just like Kathy said. You should be able to find a FREE form similar to the Missouri form.

My form lists my brother, not my wife as my designatee. She was hurt, but I told her if the right choice was pull the plug, he would. She agreed.

Many people refer to these choices as 'right to die'. Nothing could be further than the truth. If you want every techno tool available, make your choice known as well. Make your choice with your family, with people you trust, with your faith. Don't leave it up to the hospital closest to your car wreck or your insurance bean counter.

Your dad would be proud.

[Maryann Mercer]

My dad will be gone from us for 7 years on May 19th. His living will gave us the courage to make a very painful and sad decision in the face of almost 100% opposition from the hospital's medical staff. To let them continue their course of treatment would have robbed my food-loving father (from preparation to eating to the communion around the kitchen table...not to mention popcorn and cheese for ball games) of the quality of life we knew he treasured. He was an independent man, sharp as a tack even at 91.5 years, and what would have followed would have made him dependent on others for what we knew would be a very short life of indignity. And we bless his Hospitalist every day for talking with us and understanding our decision. We moved him to hospice (and Kathy, the one we chose was amazing as well) where he spent his last night with us, orange popsicles, and Wheel of Fortune before he went home to God. I miss him every day but know we followed his wishes.

A Living Will is something we all have. My daughter and sister are the designatees for both Chuck and myself. They know our wishes, right down to the piper I want playing Amazing Grace at my burial. There are a lot of things we cannot control in this life. Letting our loved ones know our final wishes is something we can. And I echo Alan. Your dad would be proud.

PS. My dad's 100th birthday will be October 11, 2013. We're all flying to Florida to have dinner at his favorite restaurant (it's still there, we checked) to celebrate his life with catfish and beer (and possibly the Cubs in the playoffs?).

[lil Gluckstern]

I think it helps when you know you've done what your dad (or mom) wanted. Saves on family arguments too. Again, I am so very sorry for your loss.

[Harley]

Kathy, trust you to mine your personal tragedy and come up with a beautiful essay. The point you make is important, and it seems to me that when our time comes, if what we want for the ones we leave behind is that they all love one another and get along, the best thing we can do is spell out for them our last and next-to-last wishes. The pain of grief gets really ugly when it's directed against family members fighting over these kinds of questions. And you're right -- no one talks about it!

[Diane Russom Harrison]

My mother passed away on Friday, February 8, 1985. My father passed away on Friday, February 8, 2002.

My father was at home in a bed on one side of the great room. We had it cordoned off with draperies from the other side. It was the Friday evening that the opening ceremonies for the 2002 Winter Olympics were being telecast. At the ceremony the policeman from NY who became famous for singing "God Bless America" was singing that lovely patriotic song. My dad was keeping time to the song with his hand. When the policeman finished singing the last note, my father put his hand down and took his last breath. Incredibly moving and so apropo because my dad served in WWII and was fiercely American. It was a gentle and lovely way to pass out of this world.

[Tom]

Thank you, Kathy. Somehow it feels like you've taken one for the team by writing this.

Best if we make friends with our endings as best we can, as soon as we can.

[gaylin in Vancouver]

When my friend Anne was in the hospital for 8 months she had many ups and downs, many procedures, lots of drugs, lots of pain. The last time she rallied she got the hospital to bring in the DNR forms and had them notarized and told us all about them. When she started to fail again, we all stood together and granted her wish. The hospitals palliative care team was awesome. It took 3 days for her to die, her children and I were there when she passed. No last words, also no more pain and no regrets. She was such a sweetheart that even the nurses on the ward were tearful and having a hard time and they have seen it all.

Do I want a dignified death, yes. Hopefully the people who are around me at the time will allow that to happen.

My dad stayed at home until June 29th, 1993, he died June 30th. He lasted one day in palliative care, the switch from oral morphine to intravenous was all it took for his respiratory system to give out. He didn't want to go to the hospital at all but in the end, my mom couldn't deal with him dying at home. By the time he was in the hospital he didn't know he was there.

It is sad to hear about your dad, but a good thing you all did by letting him go the way he wanted.

[Denice]

Thanks for your comments. I am so happy that your dad was able to pass gently in his own home, and where his mom and dad had also passed. I just experienced it with my dad in Dec. and Virginia 2 years ago. My thoughts and prayers continue with you.

[Karen in Ohio]

Kathy, you dear and wonderful woman, I'm so sorry for your deep loss, but your dad did right by you, and you did right by him. That is as it should be, medical personnel not withstanding. They don't count, in the end.

And now that there is a great deal of evidence that most of the chemo and other heroic measures only prolong life a bit, but at a cost of robbing one's quality of life, all of this is even more important. And so is having an advocate who can help the dying person make such a decision. It's not easy to find the time or the energy to do the research necessary to decide if the advice one is getting is in one's best interest or not. I personally do not want to go through months of chemo and being so sick that I can't enjoy what time is left. Yes, it does help with some cancers, but it doesn't with all of them. I'm not a big fan of the "throw it at the wall and see what sticks" mode of medicine.

We've had living wills since the kids were small, about 20 years ago. It's especially important to me because my daughter is a nurse, and I know that without something written down she would insist that everything modern medicine could do to me would be done before she would give up. That's not my personal choice.

[Marianne Z]

What a great blog Kathy. Lord knows I can relate. Not sure about Pa but here in Fl a living will is not enough. It will not stop paramedics or ER staff from doing CPR and performing other life saving measures. You must have a DNR for that. I recently read an article written by Dr's on how they would choose to die, they all want to go home and have "comfort only" measures. What does that tell you? I am so thankful for Hospice and how they enabled me to carry out my mothers wishes. My wish would be that when my time comes I will be able to vocalize my wishes but just in case I have everything written out so that burden is not on my loved ones. Thanks again for talking about this important topic.

[mary alice at mystery lovers bookshop]

Thanks for this, Kathy.
My mom sisn't have one......she wouldn't. The three days of coma and frequent meetings the hospital requires to forse decisions that hold them harmless are brutal and exhausting.

Please everyone listen to this and do it with love.

[Patty Graham Stutzman]

Thank you, Kathy, for this important information. My Dad died, in the hospital, after a lengthy battle with Hodgkins. With so many trips/stays in the hospital, it was still a shock to me that we were not going to take him home. It was so difficult when the realization hit that we had to call all of his children to come and say "goodbye". I really thought we'd be taking him home again. It was just so hard to comprehend that he was actually leaving us. I know in my heart that he did not want to die in a hospital, and that is why he waited so long that one last time to admit that he needed to go to the hospital. My mom had been battling cancer at the same time, and she made it crystal clear that she wanted to die at home. She had all of her wishes clearly written down for us to carry out. I must admit, her last few weeks at home were tough on my younger sister and I, but I wouldn't change a thing. We granted her wishes, and she passed peacefully at home with the two of us by her side. No tubes, no noisy machines, no cold, clinical surroundings. She was in the home that she made with my father and where she raised her children. We respected her wishes of no viewing, and carried out her graveside service as she chose. At such an emotionally exhausting time, I am so thankful that she had every detail written down for us to follow. I plan to make things go just as smoothly for my family when it's time for me to take the next step on my journey.

[Debby]

Kathy....how I wish that we could have brought my brother home at the end, but it was probably best we didn't due to the horror that was his wife (ugh).

Due to his request, we were getting ready to remove life support the next day, but David knew it would be hard so died naturally. Surrounded by family...

He is buried, high on a mountain, surrounded by generations of family on our maternal grandmother's side. And was not used as potting soil, as the horror 'said' he wanted.

As the executor to my parents (mom, stepdad and dad), I know their wishes. Mom and step have taken care of everything for themselves, really. Dad is a bonehead, so it will fall on me.

I just wonder about my grandmother (will be 106 in June).

[William]

Earlier this year, I was forced to confront this head-on. Everything is signed, sealed, and ready to be delivered. There was and is a large amount of comfort in knowing that, should things go badly, said things would be handled the way I wanted them to be.

Scary? Yes. Necessary? Absolutely! Do it before the mad dash to the ER, the hospital stay, the sleepless nights worrying, the dawn of 'what if?'. Do it when you are rested and relaxed and happy and secure, but do it. It'll take twenty minutes, and everyone, including you, can rest easier.

[Pam aka SisterZip]

Kathy, I put off commenting until I could keep a coherent thought in my head. I kept thinking about you & your dad and what your family has been going through. I couldn't see the keyboard for the tears. It is wonderful to read about you family and what a great person your father was. Your family and extended family have my sincere condolences.

It was hard because my dad is 86, and while he doesn't have anything specific wrong (at the moment, lol), it is only a matter of time before I will be going through the same thing. I'm comforted knowing that my parents have their wishes in order (and, more importantly, in writing), with my youngest sister in charge. She will make sure everything is done how they want it, no matter how the rest of us feel. And this is how it should be done. It is the last gift of love we can give someone.

Love to you and your family.