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.

++++++++++

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.

@colleenyoung, I apologize- have been off-line a bit; had an unexpected hospitalization of a family member. thank you for your question. Believe I was motivated by both, but no single experience. I come from a large multigenerational family; predominantly on my mother's side- my Latino side which is what I most closely relate with in my faith, family, culture, cooking & music; I remember loss as far back as my memory will take me, not always part of those tough conversations (younger years) and when an adult and chose nursing- became the one everyone called. In my extended family having these conversations has and continues to be a work in progress to date. With my immediate family members, it’s a conversation that gets revisited whenever we have a family member/friend going through a difficult time with illness/loss or may have been a story in the news or a movie/program of an individual or family battling to exercise their right to choose. I take those opportunities to share & update my wishes verbally, so far only having to update my document once. One thing that hasn’t changed is that I want a celebration of life; a gathering of as many as can come (or zoom or face time!), with great food and music😊… and a little tequila wouldn’t hurt (my favorite).

As a nurse, I have experienced patient loss over the years and felt the pain of those near and dear to them. What saddens my heart most is a family brought together for an ill family member who are unable to start the difficult conversation with the patient or amongst themselves (in the case where a patient is unable to participate in the conversation-“the elephant in the room”) -or- seeing family members at the bedside or just outside the patient room arguing over next steps. Our goal as nurses and those of your care team is to help the patient & family through this difficult time. It is a time when all should come together, hold each other close and take next steps in the direction all can agree was the one the patient would have wanted if able to express it for themselves. It saddens me & the care team to see family members exchange words that are difficult to take back -or- the experience create a wedge between them-something we are pretty sure that the patient would not have wanted.

In summary, it is my passion to help change the culture/belief- that this conversation is too scary, too early or too busy to start now. The reality is that we will all eventually need to have it and how awesome (one of my favorite words) would it be if we were left a “recipe book” from our loved one that reinforces those conversations had and contained wishes, wants and not wants. I also hope to change the thinking that conversations and documents are not just for end-of-life; while it is a primary goal, anyone at any time in their life, can have an unexpected life altering event that may leave you without the ability to express your own wishes…How awesome to have something in place for the just in case.

I have enjoyed conversing with everyone and hopeful we can continue- lots of work to be done; asking you to share and encourage others to jump in!

REPLY
@susanruddymaysonet

@colleenyoung, I apologize- have been off-line a bit; had an unexpected hospitalization of a family member. thank you for your question. Believe I was motivated by both, but no single experience. I come from a large multigenerational family; predominantly on my mother's side- my Latino side which is what I most closely relate with in my faith, family, culture, cooking & music; I remember loss as far back as my memory will take me, not always part of those tough conversations (younger years) and when an adult and chose nursing- became the one everyone called. In my extended family having these conversations has and continues to be a work in progress to date. With my immediate family members, it’s a conversation that gets revisited whenever we have a family member/friend going through a difficult time with illness/loss or may have been a story in the news or a movie/program of an individual or family battling to exercise their right to choose. I take those opportunities to share & update my wishes verbally, so far only having to update my document once. One thing that hasn’t changed is that I want a celebration of life; a gathering of as many as can come (or zoom or face time!), with great food and music😊… and a little tequila wouldn’t hurt (my favorite).

As a nurse, I have experienced patient loss over the years and felt the pain of those near and dear to them. What saddens my heart most is a family brought together for an ill family member who are unable to start the difficult conversation with the patient or amongst themselves (in the case where a patient is unable to participate in the conversation-“the elephant in the room”) -or- seeing family members at the bedside or just outside the patient room arguing over next steps. Our goal as nurses and those of your care team is to help the patient & family through this difficult time. It is a time when all should come together, hold each other close and take next steps in the direction all can agree was the one the patient would have wanted if able to express it for themselves. It saddens me & the care team to see family members exchange words that are difficult to take back -or- the experience create a wedge between them-something we are pretty sure that the patient would not have wanted.

In summary, it is my passion to help change the culture/belief- that this conversation is too scary, too early or too busy to start now. The reality is that we will all eventually need to have it and how awesome (one of my favorite words) would it be if we were left a “recipe book” from our loved one that reinforces those conversations had and contained wishes, wants and not wants. I also hope to change the thinking that conversations and documents are not just for end-of-life; while it is a primary goal, anyone at any time in their life, can have an unexpected life altering event that may leave you without the ability to express your own wishes…How awesome to have something in place for the just in case.

I have enjoyed conversing with everyone and hopeful we can continue- lots of work to be done; asking you to share and encourage others to jump in!

Jump to this post

@susanruddymaysonet Thank you for giving us your background, and showing us the examples you have! It is great to have your experience from the halls and bedsides of nursing reaching across the Mayo Clinic Connect community like this.
Ginger

REPLY
@susanruddymaysonet

@colleenyoung, I apologize- have been off-line a bit; had an unexpected hospitalization of a family member. thank you for your question. Believe I was motivated by both, but no single experience. I come from a large multigenerational family; predominantly on my mother's side- my Latino side which is what I most closely relate with in my faith, family, culture, cooking & music; I remember loss as far back as my memory will take me, not always part of those tough conversations (younger years) and when an adult and chose nursing- became the one everyone called. In my extended family having these conversations has and continues to be a work in progress to date. With my immediate family members, it’s a conversation that gets revisited whenever we have a family member/friend going through a difficult time with illness/loss or may have been a story in the news or a movie/program of an individual or family battling to exercise their right to choose. I take those opportunities to share & update my wishes verbally, so far only having to update my document once. One thing that hasn’t changed is that I want a celebration of life; a gathering of as many as can come (or zoom or face time!), with great food and music😊… and a little tequila wouldn’t hurt (my favorite).

As a nurse, I have experienced patient loss over the years and felt the pain of those near and dear to them. What saddens my heart most is a family brought together for an ill family member who are unable to start the difficult conversation with the patient or amongst themselves (in the case where a patient is unable to participate in the conversation-“the elephant in the room”) -or- seeing family members at the bedside or just outside the patient room arguing over next steps. Our goal as nurses and those of your care team is to help the patient & family through this difficult time. It is a time when all should come together, hold each other close and take next steps in the direction all can agree was the one the patient would have wanted if able to express it for themselves. It saddens me & the care team to see family members exchange words that are difficult to take back -or- the experience create a wedge between them-something we are pretty sure that the patient would not have wanted.

In summary, it is my passion to help change the culture/belief- that this conversation is too scary, too early or too busy to start now. The reality is that we will all eventually need to have it and how awesome (one of my favorite words) would it be if we were left a “recipe book” from our loved one that reinforces those conversations had and contained wishes, wants and not wants. I also hope to change the thinking that conversations and documents are not just for end-of-life; while it is a primary goal, anyone at any time in their life, can have an unexpected life altering event that may leave you without the ability to express your own wishes…How awesome to have something in place for the just in case.

I have enjoyed conversing with everyone and hopeful we can continue- lots of work to be done; asking you to share and encourage others to jump in!

Jump to this post

First, I want to extend my thanks for this important topic. This is something I need to have in place for myself as I live alone. So how does one get started as I need a some guidance (more like hand holding on this)?

Secondly, on a more personal level was trying to help my now 90 yr old mom with this but she abruptly deemed my brother in law to handle such affairs without her children’s knowledge but being totally dismissed and no follow up on this matter. Needless to say feeling a bit lost and the aftermath .

REPLY

In psychiatry they talk about family roles. This is mine. I have always had the advance directives and care plan of every family member in my file cabinet. It is a difficult thing to be that person. Made more difficult if a family member does not want to have that conversation. I had to tell my Dad that if he wanted me to make decisions for him, he needed to give me position to defend. Now I approach it that way. I tell them “your job is to make all the choices”, my job is to fiercely defend those choices, if you cannot. This job takes a toll on a person, but it leaves gifts as well.

REPLY

So wanted to share and do this for my mom but no so. What a blessing you are to your family. You have a special gift.

REPLY
@auntieoakley

In psychiatry they talk about family roles. This is mine. I have always had the advance directives and care plan of every family member in my file cabinet. It is a difficult thing to be that person. Made more difficult if a family member does not want to have that conversation. I had to tell my Dad that if he wanted me to make decisions for him, he needed to give me position to defend. Now I approach it that way. I tell them “your job is to make all the choices”, my job is to fiercely defend those choices, if you cannot. This job takes a toll on a person, but it leaves gifts as well.

Jump to this post

@auntieoakley That's a great way to express it to someone who may be reluctant to start the needed conversations and paperwork. I'd wager we have both seen what can happen when nothing was put onto paper! It took me a long while to get my husband to do his paperwork, and I just revamped mine. His thought was, "well, I've told you, so that's enough. And my kids know what they get." I have current originals in my file cabinet, plus an encrypted memory stick with my bonus son in his safe, with everything scanned onto it, as a backup.

I am included in my sister's care plan as well, and her file is with me.
Ginger

REPLY
@marjou

First, I want to extend my thanks for this important topic. This is something I need to have in place for myself as I live alone. So how does one get started as I need a some guidance (more like hand holding on this)?

Secondly, on a more personal level was trying to help my now 90 yr old mom with this but she abruptly deemed my brother in law to handle such affairs without her children’s knowledge but being totally dismissed and no follow up on this matter. Needless to say feeling a bit lost and the aftermath .

Jump to this post

@marjou Living alone does not mean you cannot have a careplan in place. My sister lives alone. She has a binder on her kitchen counter with names of people to contact, and I know I am in there with her careplan and executor of estate. She also keeps her latest utility bill and bank account references, etc. there.

If you do not have family nearby you can still have a careplan naming them. My first step was to decide what I wanted to have in place. As that got finished, I considered who would most likely to follow through without any fuss or muss. Sometimes it is a sibling, sometimes a cousin, sometimes a good friend. You want to approach them and ask if they are comfortable acting on your behalf. For example, my husband wanted my good friend to also be named [she is a good friend of mine before being a lawyer for us] as a decision maker in medical concerns, so he could have someone to talk to.

I hope this conversation opens the way for you to start your care plans. Please feel free to ask more questions!

Does your BIL have durable and medical powers of attorney, plus care plans information? You might want to inquire of him. Do you think your mom was avoiding answering your questions?
Ginger

REPLY
@marjou

First, I want to extend my thanks for this important topic. This is something I need to have in place for myself as I live alone. So how does one get started as I need a some guidance (more like hand holding on this)?

Secondly, on a more personal level was trying to help my now 90 yr old mom with this but she abruptly deemed my brother in law to handle such affairs without her children’s knowledge but being totally dismissed and no follow up on this matter. Needless to say feeling a bit lost and the aftermath .

Jump to this post

There is a lot you can do to prepare for the inevitable and NOT to leave a mess for someone else to have to face. Amazon and AARP have several books/workbooks to choose from to guide you through getting everything in order and laid out for that next person, whether a family member, friend, or attorney.
If you expect to eventually pass in the community you now live in, make an appointment with a local funeral home and do the prepaid planning. The staff person will lead you through all the important questions of what you want and when the time comes, whether you are in the hospital, at home, in a facility- they will be called and will come and everything will be done as you planned. This takes a HUGE burden off the someone who will be stepping up.
Google Elder Law attorneys and make an appointment. If you don’t have a will, make one. If you do, review it and update as needed.
Call the customer service numbers of your assets (IRAs, CDs,401Ks, brokerage accounts) and put everything you can as POD (payable upon death) or TOD (transfer on death) to the beneficiaries of your choice. This way these assets don’t go into probate.
Commit to just one hour each day to clean closets, clean the attic, clean the basement. Take clothes you never wear, small appliances you never use, and tchotchkes to Goodwill. Give old tools away, etc, etc
If you own your home, make a plan for getting the house as ready as possible for eventual sale- gutters falling down? Furnace or a/c needs to be replaced? It’s been years since the rooms have been painted? Look around with a critical eye, ask a local realtor to view the house and make recommendations, start with what you can afford but don’t stop!
Finally, I hear your hurt that your mom has chosen your brother-in-law to handle her affairs, but of course, it’s her choice. If you see what you think is elder financial, emotional, or physical abuse, you can anonymously report this to your county Area Agency on Aging and they will investigate.
It is also understandable that in a situation like this for a person to have uncomfortable thoughts of “what about me?”. For your own mental well-being, concentrate on Judge Judy’s dictum- “Don’t be addicted to OPM”, say it quickly- sounds like opium, but stands for “Other People’s Money”. I am the younger sister of a much-favored older brother. Keeping this in mind really helped me keep a positive, cheerful attitude, “Que sera, sera”!

REPLY
@gingerw

@marjou Living alone does not mean you cannot have a careplan in place. My sister lives alone. She has a binder on her kitchen counter with names of people to contact, and I know I am in there with her careplan and executor of estate. She also keeps her latest utility bill and bank account references, etc. there.

If you do not have family nearby you can still have a careplan naming them. My first step was to decide what I wanted to have in place. As that got finished, I considered who would most likely to follow through without any fuss or muss. Sometimes it is a sibling, sometimes a cousin, sometimes a good friend. You want to approach them and ask if they are comfortable acting on your behalf. For example, my husband wanted my good friend to also be named [she is a good friend of mine before being a lawyer for us] as a decision maker in medical concerns, so he could have someone to talk to.

I hope this conversation opens the way for you to start your care plans. Please feel free to ask more questions!

Does your BIL have durable and medical powers of attorney, plus care plans information? You might want to inquire of him. Do you think your mom was avoiding answering your questions?
Ginger

Jump to this post

My brother in law will not provide any of her children with this information and is not understanding. It’s a very complicated, sensitive issue and she originally asked for my assistance which I was honored to help but without rhyme or reason quickly changed. Leaves us her children in a difficult situation. As the eldest child all I want to do is fulfill my mother’s wishes which would help in grieving process.

REPLY
@centre

There is a lot you can do to prepare for the inevitable and NOT to leave a mess for someone else to have to face. Amazon and AARP have several books/workbooks to choose from to guide you through getting everything in order and laid out for that next person, whether a family member, friend, or attorney.
If you expect to eventually pass in the community you now live in, make an appointment with a local funeral home and do the prepaid planning. The staff person will lead you through all the important questions of what you want and when the time comes, whether you are in the hospital, at home, in a facility- they will be called and will come and everything will be done as you planned. This takes a HUGE burden off the someone who will be stepping up.
Google Elder Law attorneys and make an appointment. If you don’t have a will, make one. If you do, review it and update as needed.
Call the customer service numbers of your assets (IRAs, CDs,401Ks, brokerage accounts) and put everything you can as POD (payable upon death) or TOD (transfer on death) to the beneficiaries of your choice. This way these assets don’t go into probate.
Commit to just one hour each day to clean closets, clean the attic, clean the basement. Take clothes you never wear, small appliances you never use, and tchotchkes to Goodwill. Give old tools away, etc, etc
If you own your home, make a plan for getting the house as ready as possible for eventual sale- gutters falling down? Furnace or a/c needs to be replaced? It’s been years since the rooms have been painted? Look around with a critical eye, ask a local realtor to view the house and make recommendations, start with what you can afford but don’t stop!
Finally, I hear your hurt that your mom has chosen your brother-in-law to handle her affairs, but of course, it’s her choice. If you see what you think is elder financial, emotional, or physical abuse, you can anonymously report this to your county Area Agency on Aging and they will investigate.
It is also understandable that in a situation like this for a person to have uncomfortable thoughts of “what about me?”. For your own mental well-being, concentrate on Judge Judy’s dictum- “Don’t be addicted to OPM”, say it quickly- sounds like opium, but stands for “Other People’s Money”. I am the younger sister of a much-favored older brother. Keeping this in mind really helped me keep a positive, cheerful attitude, “Que sera, sera”!

Jump to this post

@centre Appreciate your info and helpfulness. It would be helpful if my brother in law kept us in the loop or even provide us, her children, with copies of her wishes. He is not a kind or understanding person and my sister, his wife, just defers all decisions to him. A very complicated situation.

REPLY
Please sign in or register to post a reply.