Don't know how to respond or how to even feel about this one!

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camul
camul Member Posts: 2,537
Now a hard one, I really have been feeling really bad, am I wrong to let my son help me! A very good friend and I were talking about my long range plan, ie. hospice/ nursing home. I said no to nursing home and that I have set the hospice in motion for when the time comes. Not an easy subject to begin with. She then asked again about a nursing home and I said that was not an option unless I would break a hip and needed rehab while it was healing, that my family and I decided that a nursing home was not an option. She told me that I was being extremely selfish to do this to my boys. That my younger son is giving up so much by living at home to help me that he should be out living his own life, he is 26. They both graduated in May, but my older son is married and "he does not have to give up his life" to take care of me.

This was a couple of weeks before Christmas and I have been struggling with it ever since. I didn't ask him to live at home he insists that this is what HE WANTS to do. He says it is special that he is able to do this and when or if he needs a break, his brother and/or sister-in-law will come and stay which they did last summer when he went to Greece and Italy for 3 weeks. He goes out with friends, travels, he subs part-time until he starts a full-time national credential program in Sept for 2 years, then he is off to teach in Europe, hopefully for an English Prep School.

Both my sons, as well as wife and long-time girlfriend will be going back to Europe in March for 10 days. My ex lives within a mile and he will come and help out with chemo and stay while they are gone if I need help. I am still driving, walking, go out with friends when I can, cook and enjoy life as much as possible. I have many friends who come/go and spend time with me. I still do some of what I always did, just not as often and I choose easier outings. But believe me I am still living a full life, especially for my condition.

As the end comes closer, I have 4 sisters, 1 will come for the duration (to help with personal matters) once hospice is in place and the others will rotate if my sons need them or to just visit. I did not ask, they all got together and decided to do this I was feeling so blesses. I also have friends who take turns taking me to chemo / tests (they don't get to help as much as they like because the boys are not good at sharing this part with friends) and we make a day of it with lunch and with the wheelchair will sometimes shop after if I am up to it. I enjoy these lunches and time with my boys and my friends as it gives me time to catch up on what I am missing by not being available on a daily basis as I was when I was working.

However, since our conversation, I have been feeling awful. Now I am wondering if I am just being selfish. Am I expecting too much of my family and friends? Are they just being polite and don't really expect me to say yes sometimes? I came home after we talked and just went in my room, closed the door, climbed under the covers and cried. I am in a position I never thought I would be in at 54 years old, I know the pressure and how hard this process has been on both of my sons, especially the one who lives with me as he is struggling with his own illness. But I also feel how hard it is for my older son, 27, who is married and feels that he is not doing enough to help his brother or spending enough time with me. He works full-time, lives almost an hour away, is married with 3 step daughters, and has a house to maintain. I don't expect them be here everyday. I still cook when I feel like it, or send out, do laundry, clean, half the grocery shopping, and have fun.

I took care of my mom when she had a stroke a month after my divorce was final. I know how hard it was, yet I wouldn't trade the experience or the time that I was given with her for anything in the world. Even my boys say how special it was to have Grams live with us after her stroke. When she had a second massive that left her in a nursing home they said at that time I would never be in one if they could help it, but they knew that I had no choice when she had the 2nd massive. I had just been diagnosed with bc, she was paralyzed on her right side, fell, broke a hip and couldn't walk. She knew I couldn't do she and was ok with the home, even though she wanted to be with us.

But am I expecting too much? Normally this would keep me up all night, but not now, I sleep and wake up and it is still on my mind! Thanks for letting me rant on this one! Trying to decide if changes need to be made. But I love having him home!
~Carol
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Comments

  • Nana C.
    Nana C. Member Posts: 108
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    Hold you head high and be proud!
    Dear Carol,
    It is very evident thay you have raised 2 wonderful Men. Being the mother of 2 boys myself, with one in the Marines, I too depend on my oldest son. Just like you I took care of my Mom and my Grandma when they needed it, Isn't that what families do? Even when I was in recovery and the nurse was getting ready to show us how to empty the drain, I told my son he should leave the room and he said No, I need to know this. The nurse did a great job leaving what needed to be covered covered. My son also has a wife and 2 kids, his wife told me later that she was so proud of him, that she knew without a doubt if she ever needed him he would be there. The worse thing anybody has to deal with is regret, so please don't leave your son out, you do not want him to ever feel like he didn't get to do what he wanted to do. You are very smart in arrangeing for yur sister to come, as I never would want one of my boys to have to do personal things for me. Enjoy the time with your children, And don't let anyone second guess the plans that they have made. They will be the ones that matter! As you can tell I feel very strong about this, but what is more important that Your Children and your faith!God Bless you and your wonderful family.

    Hugs and prayers
    Nana
  • SIROD
    SIROD Member Posts: 2,194 Member
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    Without the support of family, friends this journey would be a very bleak one. There are many women in the same boat, I included. I intend to do the same things you are. Allowing your sons to be there is not selfish at all. My plans are done too.

    Wishing you the best on this awful journey. Sending positive vibes and great hopes the MRI will show only an excellent brain.

    Doris
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
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    SIROD said:

    Without the support of family, friends this journey would be a very bleak one. There are many women in the same boat, I included. I intend to do the same things you are. Allowing your sons to be there is not selfish at all. My plans are done too.

    Wishing you the best on this awful journey. Sending positive vibes and great hopes the MRI will show only an excellent brain.

    Doris

    Dear Carol,
    I have asked all

    Dear Carol,
    I have asked all 3 of my daughters to please not put me in a nursing home and have Hospice come in. I did this for my dad and I hope they will as well.
    I didn't know that you could set this up with Hospice ahead of time. Can you PM me on how to do that.
    Don't feel guilty, we all have a right to our own medical needs when the end is near.
    God Bless and big hugs,
    Wanda
  • Kylez
    Kylez Member Posts: 3,761 Member
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    Big hugs to you Carol!

    Big hugs to you Carol!
  • aisling8
    aisling8 Member Posts: 1,627 Member
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    Kylez said:

    Big hugs to you Carol!

    Big hugs to you Carol!

    Follow your heart
    on this one.

    Number one, why is a good friend telling you that you are selfish? A good friend asks questions so that you can discover these things for yourself.

    Number two, you clearly have a loving family who make it abundantly clear they want to be involved in your daily life. I say let them do so.

    Number three, I, too, have grown sons and I've learned they are most comfortable expressing love through action. Taking care of you is all they know to do. Again, let them. They will feel good about it and so will you.

    Hmmm. I'm telling you what to do, aren't I, just like your good friend. Oops:)

    Just follow your heart. It won't lead you astray.

    xoxo
    Victoria
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
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    I don't think you are
    I don't think you are expecting too much at all!!!! I look back now when my grandpa died of some type of colorectal cancer when I was about 12. I never remember my mom going to help my grandma out, let alone have us grandkids go to help out with housework, etc. Years ago when my great-granparents were alive, I remember hearing stories of how everyone helped each other out in the family. That is the way I think families should be!!

    We have a lot of Hmong families around the city next to us. They are very close knit!! The parents live with the children. And it is the responsibility of the children to take care of the parents. I worked in a nursing home for a few years. I only saw one Hmong lady in a nursing home and it was only because her mental illness was too severe for her to be safe in the community.

    Be proud that you have children that will take care of you! Shame on your friend for making you feel bad!! I think she is confused about giving. Your family is not giving up their lives, they are giving TO the family as a whole.
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
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    Not being selfish,i too live
    Not being selfish,i too live with my daughter and Grandchildren when my Daughter and i bought this house it was with the understanding that i would not be put in a nursing home that all my children, i had six would take care off me when the time came.Then in May 2010 i was diagnosed with breast cancer and had a bilateral mastectomy my youngest son and daughter in law moved in with us to help my daughter take care of me, my son was not working at the time so he went to all my Dr.appointments with me, emptied my drains,cooked for me till the girls came home to take over to help with personal things.This was there decision not mine.My Grandchildren who were 9 & 12 did the house work for me which was the hardest thing to let go and have them do it for me.My son and daughter in law moved out couple of months ago but will move back in when the need arises.I forgot to add my son is 40 and daughter 37.I an cancer free for now and doing well and hope too for many more years, i am 69.
    so do what your heart tells you and not what some one else says only you and your children know what is best for you.Your son seems to be doing fine and is not going with out what he wants to do.Strength,Courage and love.Hugs Frankie
  • mamolady
    mamolady Member Posts: 796 Member
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    Carol,
    You are not, I repeat

    Carol,
    You are not, I repeat not, expecting too much from your family. I watched my mother die in the ICU of a very nice, small hospital. She spent three months there, it was tough even though the staff was wonderful. My sister was going through chemo at the time and could not visit my mom because she was in the hospital and her onc did not want her to get sick. Her last moments were spent with me, my dad and my little sister.
    I watched my best friend spend her last 2 weeks in a county hospital. They did very little for her. Her mom spent most of the day there just sitting and waiting. Her last day was spent with a room full of people holding hands so that part was nice but awkward because of the surroundings.
    My older sister spent the last part of her life in my home. From my perspective, the way my sister spent the last part of her life was the, well I don't know the right word.
    The night she passed she was with me, our little sister and her best friend. Her room had fairies on the walls, lavender lace curtains and her own things around her. She had lived with us when the mets became more serious. It ended up being several years, which was truly a blessing. We did things together like go to London, the beach and have tea parties. When she couldn't do much, we had coffee every morning. I would not have wanted her to be anywhere else.
    I don't think many people realize that it is not a burden to the people helping. It is gift. Keep that in mind, it was truly a gift to be there with her. It is never a burden to allow people to be part of this very special and important part of your life. Yes there are challenges, yes somethings get set aside, but in the grand scheme of things, this is what is important to your sons and the rest of your family. It may mean more to them than it will to you.
    As far as hospice, the nurses that came into our home to take care of my sister and then my step mom were amazing women. They were not an intrusion they were very respectful and compassionate people.

    I hope this gives you some perspective from the other side of things.

    Cindy
  • roseann4
    roseann4 Member Posts: 992 Member
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    mamolady said:

    Carol,
    You are not, I repeat

    Carol,
    You are not, I repeat not, expecting too much from your family. I watched my mother die in the ICU of a very nice, small hospital. She spent three months there, it was tough even though the staff was wonderful. My sister was going through chemo at the time and could not visit my mom because she was in the hospital and her onc did not want her to get sick. Her last moments were spent with me, my dad and my little sister.
    I watched my best friend spend her last 2 weeks in a county hospital. They did very little for her. Her mom spent most of the day there just sitting and waiting. Her last day was spent with a room full of people holding hands so that part was nice but awkward because of the surroundings.
    My older sister spent the last part of her life in my home. From my perspective, the way my sister spent the last part of her life was the, well I don't know the right word.
    The night she passed she was with me, our little sister and her best friend. Her room had fairies on the walls, lavender lace curtains and her own things around her. She had lived with us when the mets became more serious. It ended up being several years, which was truly a blessing. We did things together like go to London, the beach and have tea parties. When she couldn't do much, we had coffee every morning. I would not have wanted her to be anywhere else.
    I don't think many people realize that it is not a burden to the people helping. It is gift. Keep that in mind, it was truly a gift to be there with her. It is never a burden to allow people to be part of this very special and important part of your life. Yes there are challenges, yes somethings get set aside, but in the grand scheme of things, this is what is important to your sons and the rest of your family. It may mean more to them than it will to you.
    As far as hospice, the nurses that came into our home to take care of my sister and then my step mom were amazing women. They were not an intrusion they were very respectful and compassionate people.

    I hope this gives you some perspective from the other side of things.

    Cindy

    I recently read
    "Where there is love, there are no burdens." Not all input is valid. This is a decision for you and your sons to make. By the way, please don't waste today worrying about what may happen tomorrow. I would keep my plans out of discussions with others who are not directly involved with your care. It is not their business. Hugs!

    Roseann
  • jnl
    jnl Member Posts: 3,869 Member
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    aisling8 said:

    Follow your heart
    on this one.

    Number one, why is a good friend telling you that you are selfish? A good friend asks questions so that you can discover these things for yourself.

    Number two, you clearly have a loving family who make it abundantly clear they want to be involved in your daily life. I say let them do so.

    Number three, I, too, have grown sons and I've learned they are most comfortable expressing love through action. Taking care of you is all they know to do. Again, let them. They will feel good about it and so will you.

    Hmmm. I'm telling you what to do, aren't I, just like your good friend. Oops:)

    Just follow your heart. It won't lead you astray.

    xoxo
    Victoria

    You have a great family
    You have a great family Carol and are so blessed in that way. Let them do what they want for you. They do it because they love you.

    Love, Leeza
  • fauxma
    fauxma Member Posts: 3,577 Member
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    Not sure how good of friend
    Not sure how good of friend she is. I would simply tell her that you have discussed this with your entire family and you have a plan in place that works for all of you. I will share with you my personal experience with my mom. She was diagnosed with a cancer of unknown primary in late December of 2002. It was in her brain, lungs, bones, and growing fast. My sister and I decided to bring her home and have hospice come. My sister lived at home and I moved over to help out. We got a hospital bed and put it beside her bed. I slept there by her side. We did everything for her. We both took time off from our jobs and shared in her care. She passed away on January 13th of the following year with us by her side. I can speak from experience that I wouldn't have changed a thing. It was a joy to have her with us. To have the other members of the family be able to come and see her in her home with her things around her. Your sons will never, never regret this decision and trust me, it will be a comfort to them that they did this for you.
    Again, tell your friend that you have made her plans for the future and that you would appreciate it if she would not be negative about what is after all a very personal, family decision. I think you are so right to have talked about this with your family. They sound wonderfully supportive and loving. You are in good hands.
    Prayers and blessings to you.
    Stef
  • New Flower
    New Flower Member Posts: 4,294
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    fauxma said:

    Not sure how good of friend
    Not sure how good of friend she is. I would simply tell her that you have discussed this with your entire family and you have a plan in place that works for all of you. I will share with you my personal experience with my mom. She was diagnosed with a cancer of unknown primary in late December of 2002. It was in her brain, lungs, bones, and growing fast. My sister and I decided to bring her home and have hospice come. My sister lived at home and I moved over to help out. We got a hospital bed and put it beside her bed. I slept there by her side. We did everything for her. We both took time off from our jobs and shared in her care. She passed away on January 13th of the following year with us by her side. I can speak from experience that I wouldn't have changed a thing. It was a joy to have her with us. To have the other members of the family be able to come and see her in her home with her things around her. Your sons will never, never regret this decision and trust me, it will be a comfort to them that they did this for you.
    Again, tell your friend that you have made her plans for the future and that you would appreciate it if she would not be negative about what is after all a very personal, family decision. I think you are so right to have talked about this with your family. They sound wonderfully supportive and loving. You are in good hands.
    Prayers and blessings to you.
    Stef

    That woman is wrong please do not go out with her
    I am surprised how insensitive she was
    Please follow your instincts do not listen to stupid remarks
    It seems as a very well planned approach to move forward
    You have a very good family be proud please
    Both You and you son are benefitting financially too since he does not have a full time job
    Hugs
  • camul
    camul Member Posts: 2,537
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    Thank you for the input.
    I learned really quickly that she is not who I would call for help. We are longtime friends, but apparently our outlook on life and death are so different. She is also the one who was mortified that I did not wear my wig when we went to a concert. I wore a great hat, but she felt I was just calling attention the the fact that I have cancer. I have mets on my scalp and the pressure from the wig plain hurts. As time has gone by, and other not so subtle comments, I am learning she is uncomfortable with what I am going through.

    I think some of the changes that I have to make is in facing that some people just can't deal with loss. I just hope that when it is her turn, as all of us will face death at some point, that her son and daughter are able to show more compassion with her than she was able to with her parents and friends.

    On to the question on setting up hospice in advance. My cancer has been very aggressive since the recurrence and the cancer center that I go to has a pain doctor who is really good at working with meds to find a combination that works with keeping the pain at a lower consistency where I am still able to function with minimal pain. He is also the Dr. who goes to the patients homes when they are on hospice and unable to get to all doctor appointments, so he works with and on behalf of my oncologist. I have the blue paper taped to the fridge so that if 911 was called by accident, the emt's will not be required to work to get me going, I have all the paperwork taken care of as far as dnr etc....

    So when hospice is needed, at this point it will be a very smooth transition for my family and they were all apprised on what to do and what to expect, where to find all the paper work, who to call etc. So my doctors, along with my attorney, priest and funeral home have really done everything to make this as easy as possible for my children and it is being done the way I want, so they don't have to make any of the gut-wrenching decisions.

    This is all good if it happens this year or 5 years down the road!

    But thanks you all for your input, it is really helping ease my mind. I have felt so much pressure thinking that I was not doing the right thing here.

    Love and prayers,
    Carol
  • camul
    camul Member Posts: 2,537
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    That woman is wrong please do not go out with her
    I am surprised how insensitive she was
    Please follow your instincts do not listen to stupid remarks
    It seems as a very well planned approach to move forward
    You have a very good family be proud please
    Both You and you son are benefitting financially too since he does not have a full time job
    Hugs

    You are right, New Flower
    I think we are both benefiting financially from this arrangement, as there have been many times when I would have needed someone here 24/7 with some of the se from the different chemo's. And either son, dil, sons girlfriend, or my ex have stayed overnight, or until a sister could fly in. I would rather pay my own children if they needed help than pay a stranger to come into my home who do not know me. They put up with my warped sense of humor, and we really do enjoy laughing and spending time together. I am so blessed in so many ways.

    Since this, I have pretty much left contact to a couple of short phone calls, and keep away from any personal subjects.

    I guess I learn about people the hard way.

    Thanks a billion everyone.
  • camul
    camul Member Posts: 2,537
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    aisling8 said:

    Follow your heart
    on this one.

    Number one, why is a good friend telling you that you are selfish? A good friend asks questions so that you can discover these things for yourself.

    Number two, you clearly have a loving family who make it abundantly clear they want to be involved in your daily life. I say let them do so.

    Number three, I, too, have grown sons and I've learned they are most comfortable expressing love through action. Taking care of you is all they know to do. Again, let them. They will feel good about it and so will you.

    Hmmm. I'm telling you what to do, aren't I, just like your good friend. Oops:)

    Just follow your heart. It won't lead you astray.

    xoxo
    Victoria

    Victoria
    I have no problem with advise, that is why I brought this up here, I have really been struggling with it. You always give pretty good advice, and you throw in humor which is what keeps me sane. I love when you and Traci get going! And you are from my home, and favorite area of the country, who could ask for more!

    Thanks for all you do,

    Hugs and prayers,
    Carol
  • robang13
    robang13 Member Posts: 333
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    Carol, If it is your son's
    Carol, If it is your son's choice to be there for you, then let him. Don't deny him this time to be with you. It's no-one else's business but yours and your son's what goes on. This may be his way of expressing his love to you. You raised a great boy who loves you very much. Let him do as he wishes! My son is 25 and he helped me through my surgery and rads. I saw nothing wrong with it and he was happy to help. Hugs~~

    Angela
  • missrenee
    missrenee Member Posts: 2,136 Member
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    robang13 said:

    Carol, If it is your son's
    Carol, If it is your son's choice to be there for you, then let him. Don't deny him this time to be with you. It's no-one else's business but yours and your son's what goes on. This may be his way of expressing his love to you. You raised a great boy who loves you very much. Let him do as he wishes! My son is 25 and he helped me through my surgery and rads. I saw nothing wrong with it and he was happy to help. Hugs~~

    Angela

    You've gotten some good advice, Carol
    I have one son (age 31) who is the light of my life (besides my husband). We are very close. I know how you feel about putting too much on your kids, but if I needed my son in that way, ever, I would ask him and I know he would do everything he could to help me. I've always, always been there for him and he would be there for me. Sounds just like your situation with your kids.

    Maybe you're a little like me--I love helping others, but I hate asking for anything from others. I always feel like I'm imposing or it just feels plain uncomfortable for me. When I was first diagnosed back in Nov. '09, I realized, the people who really love me were really wanting to help in any way they could. It made them feel valid and important to me. So, gradually, I let it happen and it was wonderful.

    Carol, you've been such a comfort to me in the last week since my bad news. I am here for you as well. You sound like a truly sweet, caring person.

    Hugs, Renee
  • sbmly53
    sbmly53 Member Posts: 1,522
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    You're giving your sons an opportunity I'm sure they would not
    want to miss - to be able to do all they can and spend as much time with you as they can. The person that said this to you - repeatedly - is a jerk.

    The responses to your post have been so positive and supportive, real and true.

    Sue
  • MAJW
    MAJW Member Posts: 2,510 Member
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    sbmly53 said:

    You're giving your sons an opportunity I'm sure they would not
    want to miss - to be able to do all they can and spend as much time with you as they can. The person that said this to you - repeatedly - is a jerk.

    The responses to your post have been so positive and supportive, real and true.

    Sue

    You're..
    You're not being selfish, Carol...end of story! You've made plans that most of us haven't even thought of...and a " friend " that calls you selfish....isn't a real friend, in my opinion....
    Hugs to you..
    Nancy
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
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    Hugs
    Carol... your "friend" was wrong to burden you with such notions of being "extremely selfish". You are in NO WAY selfish. Your sons, daugther-in-law, ex, siblings, and friends all want to be there by your side to help. They love you dearly and want to help in any way possible.

    Your sons have lives and are living as are you. Don't take to heart what this insensitive person said. You are truly blessed to have such wonderful sons, family, and friends who are loyal, kind, and giving. Take care of yourself. If someone is planting negative thoughts in your head, it might be best to keep them at arms length. Peace of mind and heart are important.

    Bear hugs to you dear one.