Caregivers, can you give me some advice?

Donna Faye
Donna Faye Member Posts: 427 Member
in Caregivers #1

Dear Caregivers, whatever would we do without you? So, I am heading down the road for needing care, not right away, but by the middle or end of 2020. As I think about how to do this, let me say I am a cancer warrior since 1997. My children were in their 20's then, and I managed to not need any care except during and after surgery. Then I surprised everyone and was cancer free for 22 years. Then came 2017 and now after 3 recurrences, I am facing the end of the battle. At 80, that is not much of a surprise. However, my children are now in 50's and all 3 have busy lives and families.As I plan for end of life, I want to make it as easy on them as I can. SO, would you mind sharing with me all the advice you wish someone had shared with you. How can I make this final curtain easy for all of us? I have all the paperwork done and have flexibility to move if best. One son is an RN and will talk to all 3 together after the holidays so we can all make plans. Thank you for being those who care for us when we cannot. Peace for this holiday season.

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #2
    Faye, my friend.  I am going

    Faye, my friend.  I am going to PM you.

  • k8
    k8 Member Posts: 33 Member
    #3
    Hope this helps

    Lost my mom May of this year. She lived with me for the past 10 years. I have 3 other siblings but I already knew I would be the one to care for her til the end. All of your children most likely have busy lives and families of their own at this point. Of all my other siblings I have the most compassion and when caring for a loved one especially a mother you need to be able to provide and meet all of their needs. I took a job working from home for flexibility to take her to her doctors appointments etc. Hospice came to our home twice a week for about an hour to advice when to increase morphine or administer other meds. They were wonderful but the responsibilty will lie with with the child you are living with. My mom was 85. You may Or may not want to have a funeral. I chose The Neptune Society and paid for their services long before I knew my mom would be requiring these services, she was cremated. Due to my brothers and sister residing in different states this was the choice I made. I don't mean to sound blunt here but when you are nearing the end of your life your loved ones will want you to be pain free with no suffering. My mom passed away in our home as I just could not stand the idea of her being in a hospital by herself or people stopping by to say their last goodbyes. Have your affairs in order both personally and financially. Depending on how rapidly your cancer is spreading once you begin morphine, within the first week your mind will not be as sharp as it used to be and it does not get any better from this point until the end. Something to consider is which one of your children are you closest to as I believe this is the one you would want caring for you, also which one has flexibility to take time off work if their still working. If you are going to live with one of your children you will need a hospital bed with mattress that inflates so your muscles do not get neuropathy or bed sores. Your child who is RN will know about that. Hope this helps you. Enjoy the life you still have. Prayers and best wishes on your journey. Happy Holidays!!! Kate

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #4
    NoTimeForCancer said:

    Faye, my friend.  I am going

    Faye, my friend.  I am going to PM you.

    Thank you

    You are the best!

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #5
    What I want to hear!

    Thanks, Kate. I hope I hear from more caregivers like you as everyone can help me prepare a tad better than before. You have some excellent advice and I will take it to heart. At this point I do not know what the prognosis is for the cancer growth but am going to get the doc to give me best estimate come Dec. 17. I am flying to Fl. in Jan. to talk with RN son and maybe a second opinion at Moffitt. Then will talk with all 3 and we'll decide the best course of action. You are correct that at some point, one person does assume the greatest load of care. Love the picture!! You will always be glad you were there for your mom - she was lucky to have you. Hugs.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #6
    Donna Faye said:

    What I want to hear!

    Thanks, Kate. I hope I hear from more caregivers like you as everyone can help me prepare a tad better than before. You have some excellent advice and I will take it to heart. At this point I do not know what the prognosis is for the cancer growth but am going to get the doc to give me best estimate come Dec. 17. I am flying to Fl. in Jan. to talk with RN son and maybe a second opinion at Moffitt. Then will talk with all 3 and we'll decide the best course of action. You are correct that at some point, one person does assume the greatest load of care. Love the picture!! You will always be glad you were there for your mom - she was lucky to have you. Hugs.

    Call hospice sooner rather than later

    It is a valuable resource.

    Do not tolerate being in pain. It hurts your loved ones to see you in pain. So what if you drowsy your way out of here?

    Express your faith openly, whatever it may be.

    Expect and allow tears. Yours and other's.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited December 2019 #7
    Noellesmom said:

    Call hospice sooner rather than later

    It is a valuable resource.

    Do not tolerate being in pain. It hurts your loved ones to see you in pain. So what if you drowsy your way out of here?

    Express your faith openly, whatever it may be.

    Expect and allow tears. Yours and other's.

    Thank you!

    I talked to the hospice manager last week to learn what they offer. I agree with you. I want to say my goodbyes while I am not in pain and then let me dream away. The tears will come I am sure and they are how we cleanse our pain. Again, thank you for sharing with me.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #8
    Donna Faye, you sound like

    Donna Faye, you sound like such a lovely and caring person.  I honestly think the fact that you are looking ahead, willing to hear opinions, and trying to make realistic plans is exceptional.  

    My first bit of advice is to "have your affairs in order".  You say that you already do.  Take a second look at that.  Secondly, its your life and I truly believe you need to figure out what you want prior to speaking with the kids.  Dont find yourself pushed prematurely into anything they happen to think is best for you.  Ive seen this happen too many times.   My mother was adamant about not giving up her home, even though none of the kids were very close to where she lived.  She loved her home and her friends, her church, her community, and she wasnt giving it up.  All us kids made sure she had every resource available to her.  

    When you have discussions with your kids, its best to include their spouses or partners in the same meetings.  It certainly impacts their life too.

    Someone else mentioned hospice and I think that is an excellent idea.  There are also assisted living communities that you can check out.  Personally, thats what i would want.  I had my kids late in life and they are all boys.  I do not want them doing personal care for me.  Im going to hang on to my dignity for as long as i can.   I think you have alot of options.  What you want is most important.

    Clearly communicate your health care beliefs to the individual that would make medical decisions for you.  Make sure all the kids know what you want so that there is agreement and understanding between them.

    I greatly admire you posting this discussion.  I wish you many more years of enjoying life.  

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #9
    a_oaklee said:

    Donna Faye, you sound like

    Donna Faye, you sound like such a lovely and caring person.  I honestly think the fact that you are looking ahead, willing to hear opinions, and trying to make realistic plans is exceptional.  

    My first bit of advice is to "have your affairs in order".  You say that you already do.  Take a second look at that.  Secondly, its your life and I truly believe you need to figure out what you want prior to speaking with the kids.  Dont find yourself pushed prematurely into anything they happen to think is best for you.  Ive seen this happen too many times.   My mother was adamant about not giving up her home, even though none of the kids were very close to where she lived.  She loved her home and her friends, her church, her community, and she wasnt giving it up.  All us kids made sure she had every resource available to her.  

    When you have discussions with your kids, its best to include their spouses or partners in the same meetings.  It certainly impacts their life too.

    Someone else mentioned hospice and I think that is an excellent idea.  There are also assisted living communities that you can check out.  Personally, thats what i would want.  I had my kids late in life and they are all boys.  I do not want them doing personal care for me.  Im going to hang on to my dignity for as long as i can.   I think you have alot of options.  What you want is most important.

    Clearly communicate your health care beliefs to the individual that would make medical decisions for you.  Make sure all the kids know what you want so that there is agreement and understanding between them.

    I greatly admire you posting this discussion.  I wish you many more years of enjoying life.  

     

    Thanks

    Every tip is appreciated. I am meeting with the kids and mates in late January as I am now pretty sure of what I want. I am preparing to meet with an attorney after that.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #10
    For those who are reading

    For those who are reading this in the future, I will say when it came to my mother and hospice, there are a lot out there and for us it was like a group of vultures circling since hospice is covered under Medicare.  We were given a list, and some did some things and others did others, but the nurse stood there an pressured us to "pick one". (we did not fold to their pressure)  I will say my families experience for both my dad and mother in hospice was not good.  Just be aware of this as you go forward.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #11
    NoTimeForCancer said:

    For those who are reading

    For those who are reading this in the future, I will say when it came to my mother and hospice, there are a lot out there and for us it was like a group of vultures circling since hospice is covered under Medicare.  We were given a list, and some did some things and others did others, but the nurse stood there an pressured us to "pick one". (we did not fold to their pressure)  I will say my families experience for both my dad and mother in hospice was not good.  Just be aware of this as you go forward.

    I have no experience with

    I have no experience with hospice, but ive been on 2 different sites and the caregivers recommend non-profit hospices.  

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #12
    Why this is importenat to ask

    See how much we learn when we  share our knowledge and experiences. I was given a list of all hospices in my area and was told one can switch if unhappy. It is sad that one has to hear that some hospices are more money driven than care driven. That was not what the plan was when designed.  I do want to add here that I feel better every day as I formalize my plans. Thank you all for your honesty.

  • GingerMay
    GingerMay Member Posts: 134
    #13
    Blessings to you

    Donna Faye, many blessings to you. Wow, I am so touched by your generosity toward your children as you take responsibility for making plans now that must be difficult, but will ultimately be easier for those around you. You have been given good advice here, and you seem very wise so I know you will make great choices. I do not have much to add other than to let you know you will be in my prayers. I do think it is important for caregivers to know your wishes in regard to IV fluids, pain relief, and feeding tube if it ever may be asked by the care team. It sounds like you know what you want, so the meeting planned with your kids and their mates in January will likely be very productive. You have planned well. My last unrelated comment is to have peace with your plans and know you have done well for children. Be sure to take a few moments each day as you can to enjoy the fresh air and the small pleasures that are around.    

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #14
    GingerMay said:

    Blessings to you

    Donna Faye, many blessings to you. Wow, I am so touched by your generosity toward your children as you take responsibility for making plans now that must be difficult, but will ultimately be easier for those around you. You have been given good advice here, and you seem very wise so I know you will make great choices. I do not have much to add other than to let you know you will be in my prayers. I do think it is important for caregivers to know your wishes in regard to IV fluids, pain relief, and feeding tube if it ever may be asked by the care team. It sounds like you know what you want, so the meeting planned with your kids and their mates in January will likely be very productive. You have planned well. My last unrelated comment is to have peace with your plans and know you have done well for children. Be sure to take a few moments each day as you can to enjoy the fresh air and the small pleasures that are around.    

    So much out there for us

    I am enjoying learning about all that is out there for those who seek. I was a college debater and a language arts teacher for 30 years, so I find reading a great way to learn. My doctor's notes from my last visit informed me better than her words. When I meet with her on the 17th, I will ask for her best estimate of time left before I began to weaken. I have questions about palliative care and/or hospice. I am fortunate that I can sell my home or stay - whatever the children think will be best for them. I am going to post a reading list on my About Me page as so many caregivers and doctors have written about dying and what one can do to make it as easy as death can be. I wrote this while journaling this morning: A good death is when the patient and the family are ready - the goodbyes have been said- the hugs given - the tears shed - the plans done.

    Thank you for your kind words.

  • daphneje
    daphneje Member Posts: 5
    edited July 2020 #15
    new support giver

    I'm a new caregiver. My 30 year old son has stage 4 sarcoma. Right now he's an inpatient, receiving a 4 day chemo infusion. I'm devastated. I don't know what to expect when he comes home, what to do, what resources I have, anything. I could really use some guidance.

    My son had lived in CA for the last 8 years. We live on the east coast. He wanted to come home for our support, so we brought him home. He has a few friends here, but no large support group. How do we get help with this with COVID19?

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited August 2020 #16
    daphneje said:

    new support giver

    I'm a new caregiver. My 30 year old son has stage 4 sarcoma. Right now he's an inpatient, receiving a 4 day chemo infusion. I'm devastated. I don't know what to expect when he comes home, what to do, what resources I have, anything. I could really use some guidance.

    My son had lived in CA for the last 8 years. We live on the east coast. He wanted to come home for our support, so we brought him home. He has a few friends here, but no large support group. How do we get help with this with COVID19?

     

    Hope this helps!

    I am sure your son's doctor/hospital can point you to a support group for you and/or your son. Believe me, I can only imagine how heartbreaking this is to have your son ill. I am 80, have had 3 cancer battles and last March moved into my son's home. Let me share how they have supported me and give you some ideas. First, we talked about my wishes at end of life and they know where the papers are when they are needed. We could laugh about some of my crazy wishes, but it helped me so much to have them listen and gave me such peace. Now we never mention it.

    Secondly, the treatments today are so much improved, and one can live quite comfortably on the meds. So be an optimist and help him to be as well. Have him connect with his cancer specific group on this site. I LOVE my girls on our site and boy have they kept my spirits up.

    Last but not least, share your down moments, and I know there will be some, with a good friend or a counselor.  My family had the support of so many because we let them in. I will think of you in the coming days and hope it will be so much easier than you thought.

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