It’s because I love you…

"We can’t plan for everything. But we can talk about what is most important — in our life, and in our health care — with those who matter most." The Conversation Project

The Conversation Project (https://theconversationproject.org/) helps people talk about their wishes for care through the end of life (advanced directives), so those wishes can be understood and respected. The offer guides, conversations starter tips and more to help you start a conversation (and keep talking) so you can have a say in your health care — today and tomorrow.

This week the Conversation Project shared a poem by Susan Ruddy-Maysonet (@susanruddymaysonet), a nurse from Mayo Clinic, that I would like to re-post here with permission. "It's because I love you" is a wonderful reminder of why these conversations are important and that love and caring are the reason why we should talk.

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IT'S BECAUSE I LOVE YOU...
By Susan E. Ruddy-Maysonet RN MSN,

It’s because I love you that I want u to know just how much in the event I am no longer able to speak the words ” I love you”.

It’s because I love you and you have been everything to me, and know me, at times better than I know myself.

It’s because I love you that I can’t think of anyone else to give this most precious, but challenging gift to.

It’s because I love you that I am asking you to hold me tight when possible, as your hugs will remind me how much I am loved.

It’s because I love you that you will sense my heart and arms wrapped around you in return.

It’s because I love you that you will feel God’s strength and love, as I would have asked HIM to help you make difficult choices on my behalf and reassure you that no one can do this task better.

It’s because I love you and am most confident that you will be able to help all those near and dear to me understand the choices I have made, including you to be my voice, in the event I didn’t have the chance to tell them myself.

It’s because I love you that we need to take time out of our busy lives today to talk about this tomorrow we hope will never come.

It’s because I love you that I want you to be prepared in case it does.

Let’s talk.

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

So very beautiful and heart wrenching this poem is! It makes me feel these words are my husband’s words. I want to remind myself how my husband’s feeling about our relationship but can’t express them to me.

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I am so glad many like the poem; it's intention and my hope is that people will print it, write it, type it... BUT share it with your loved one. It's meant to be a conversation starter when one is having difficulty finding the right words or the right time to bring up this most difficult topic. All any of us can do is show that we care and would be there for our loved ones. What you don't want is to have the "would have, could have, should have" moment, when the opportunity to share anything of mind or heart with someone you love is missed.

Add a difficult conversation to an already complex family dynamic is especially challenging, but don't give up! If able to, try and relay that all parties love the individual, want to help in whatever way possible, and want to participate in caring.

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Yes, it is great when a "recipe book" is available to help support a decision-maker in the tasks that lie ahead; knowing you are supporting/arguing for the decisions made by your loved one. But keep in mind that directives/wishes don't always cover all circumstances and what if's. The conversation (s) had and experience in knowing how your loved one lived and defines quality of life is priceless. In any scenario, to have played such an important role in an individual's life to have been trusted with this task is a gift from the heart- very rewarding.

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@susanruddymaysonet

Yes, it is great when a "recipe book" is available to help support a decision-maker in the tasks that lie ahead; knowing you are supporting/arguing for the decisions made by your loved one. But keep in mind that directives/wishes don't always cover all circumstances and what if's. The conversation (s) had and experience in knowing how your loved one lived and defines quality of life is priceless. In any scenario, to have played such an important role in an individual's life to have been trusted with this task is a gift from the heart- very rewarding.

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Beautifully said!

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@susanruddymaysonet

I am so glad many like the poem; it's intention and my hope is that people will print it, write it, type it... BUT share it with your loved one. It's meant to be a conversation starter when one is having difficulty finding the right words or the right time to bring up this most difficult topic. All any of us can do is show that we care and would be there for our loved ones. What you don't want is to have the "would have, could have, should have" moment, when the opportunity to share anything of mind or heart with someone you love is missed.

Add a difficult conversation to an already complex family dynamic is especially challenging, but don't give up! If able to, try and relay that all parties love the individual, want to help in whatever way possible, and want to participate in caring.

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I recently sent a message to my husband’s immediate family. I am concerned about who would take care of my husband if something happened to me. He has heart failure and Dementia but so far he is able to get around, though a lot slower. So far, both his sons told me they are working on a plan and one of them is coming over to our house next week to discuss the situation. Haven’t heard from his sister yet but I suggested a conference call where we can all give our opinions.
I am open to hear and consider their opinions but I also know what my husband wants to do with whatever time he has left.

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@janet7

I recently sent a message to my husband’s immediate family. I am concerned about who would take care of my husband if something happened to me. He has heart failure and Dementia but so far he is able to get around, though a lot slower. So far, both his sons told me they are working on a plan and one of them is coming over to our house next week to discuss the situation. Haven’t heard from his sister yet but I suggested a conference call where we can all give our opinions.
I am open to hear and consider their opinions but I also know what my husband wants to do with whatever time he has left.

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@janet7 It is good your husband has made you aware of what he wants to do. And it is great you plan to have "that conversation" with his family members. Being able to address any conflicts now will be helpful in the future, and when you need a helping hand, the information will already have been discussed. I hope your husband is able to participate in the talk together, and anything that needs to be documented is also taken care of. It's a gift when we can make sure our desires and wishes are known, and lessen the burden for loved ones.
Ginger

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@gingerw

@janet7 It is good your husband has made you aware of what he wants to do. And it is great you plan to have "that conversation" with his family members. Being able to address any conflicts now will be helpful in the future, and when you need a helping hand, the information will already have been discussed. I hope your husband is able to participate in the talk together, and anything that needs to be documented is also taken care of. It's a gift when we can make sure our desires and wishes are known, and lessen the burden for loved ones.
Ginger

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When you say having requests being documented, where and how is that s done? Do you mean legally and advise our lawyer? Or for future reference for his family?

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@janet7. This is a great initiative and you are taking the right steps. It is awesome that you know what your husband wants and should share that information with loved ones.
A few things to consider as you, your husband and family continue the conversation:
1. Advance Directives/Designation of Health Care Surrogate forms encourage a primary and alternate decision makers for this very reason. At times it may be that the primary is not living, unable to be contacted or may defer this responsibility to the next designated person for various reasons. If a formal document is not yet completed you may want to have him complete one if he has the capacity to do so.
2. If no directive or designation of health care surrogate was completed by your husband and unable to do so: Check with your state’s law on the legal order of surrogacy; this means that in the absence of a completed directive or designation of health care surrogate, there is a legal order in which loved ones are able to represent the patient in medical decision making. It is always the health care team’s wish that the patient’s next legal surrogate (for instance, all adult children in the absence of a designated one) is representing the patient’s wishes and that all agree on the plan of care for the patient.

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@janet7

When you say having requests being documented, where and how is that s done? Do you mean legally and advise our lawyer? Or for future reference for his family?

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Hi, @janet7 I'll chime in here, just from the perspective of some of our personal experiences in this.

Some documents need to be legal documents, such as MPOA, POA, wills, etc. Also since situations, things, and people change over time, we made sure we had all these issues written down. For instance, my wife wanted to be cremated. One of her siblings insisted she never said that, so it was excellent it was written down by my wife.

I'd also add that in our case we were very happy we added our adult children to my wife's HIPPA forms so our children were able to speak directly with her doctors to get the same information I was getting, to avoid any 'coloring' of messages, and it helped remove a lot of my burden of having to act as the communications hub all the time. I also had a medical professional who disagreed with my decisions for my wife and it wasn't until I gave her the MPOA that she backed off and listened to me. As situations increase in complexity and immediacy, tensions can easily mount and having documents to support your decisions can be critical to follow what your loved one wanted -- and not others.

I keep a three-ring binder titled Just In Case and it has all kinds of end-of-life information in it. Things folks will need to know before there might be any formal will reading, etc. I also have key passwords, contacts' information, etc.

Strength, Courage, & Peace

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Thank you for sharing this conversation. The timeliness is uncanny as I became a widow a year ago and am updating my legal documents. I have a blended family and recently had a conversation with our adult children (5) to feel them out about being the executor or executrix, Healthcare POA, etc. The result was surprising. My step-daughter didn't hesitate to express her desire to take on the responsibility and help me when needed. My youngest two daughters didn't say anything, nor did our sons. A day later I learned my daughters (the youngest two) would not be pleased if their step-sister was in charge. I feel their motivation was more focused on who was controlling what little money (their inheritance) I have and not about who could make the hard decisions when needed. My youngest daughter feels that because I am only 60, they won't have to worry about this for a long time. My husband died at age 60 after being on a ventilator for 12 days followed by 5 days in Hospice.

Don't assume you know who will step up. Have the conversation especially if you are a blended family! I learned a valuable lesson and decided to name my best friend of 45+ years as my executrix. She'll make sure all my wishes are carried out.

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