how to support parents from a distance?

K_ann1015
K_ann1015 Member Posts: 500
edited March 2014 in Esophageal Cancer #1
Hi all. I feel I am getting to know you all through this website. God Bless you all for helping & supporting each other and for those fighting this cancer--know that you are in our prayers. My dad is a "young" active, (otherwise) healthy 70 year old. The doctors were surprised at his general health. He is at Duke in his 2nd week of a clinical trial of chemo-radiation combo with what we believe to be a stage 3 adenocarcioma at the e-g junction. The reason I say believe is that there was a questionable lymph node near the liver that could not be biopsied but did not look suspicious on a PET scan.

I was able to be with them at the initial appts at Duke,which was wonderful to be able to support them. They are reluctant to accept help and private people, but was glad I was there. I am about a 8 hour drive away-- I wish I was closer! My dad is doing great so far. I set up a caring bridge website for them which they really enjoy. They are staying close to Duke (3 1/2 hours from their home). I am in contact with them frequently as are my brother & sister.

I have offered to come anytime "just let me know"... but I know they want to "save" that for when they really need the help. I know at a minimum I'd like to be there when he gets the results on the re staging--to support and help interpret (I have a medical-but not cancer background). I also could help if he gets really sick with treatment.

As family members and patients--is it obvious when and how far to reach out to help?
THANKS so much--sorry so long of entry--still emotional about this--and there is so much more to the story.

Comments

  • kitten0385
    kitten0385 Member Posts: 248
    #2
    As a patient....
    I am a 24 year old, stubborn patient. I have a hard time letting people help me. I just had surgery for a colon blockage a week ago and am already home by myself, taking care of the dogs...mostly laying in bed, but getting along on my own. I know as a patient it's hard to say "I need help." Just being there for your family, the phone calls, being there at the important appointments if you can be is what is important. My husband never misses anything, and one of my parents or his parents are always with us for the doctor's appointments so we have great family support. Being there during results would be great I think, it's always good to have an extra ear to listen, I think receiving news that about cancer is always overwhelming and many times different individuals hear things differently. It is great that you set up a website for them, and that your siblings are also always in contact. Be there as much as you can, but also give him space...I know as a patient I also need time to myself like I always had before, that way I still feel "normal." I know I probably didn't offer much insight to anything, but post here anytime!! We are all here to help if we can.

    Cathy
  • K_ann1015
    K_ann1015 Member Posts: 500
    #3
    kitten0385 said:

    As a patient....
    I am a 24 year old, stubborn patient. I have a hard time letting people help me. I just had surgery for a colon blockage a week ago and am already home by myself, taking care of the dogs...mostly laying in bed, but getting along on my own. I know as a patient it's hard to say "I need help." Just being there for your family, the phone calls, being there at the important appointments if you can be is what is important. My husband never misses anything, and one of my parents or his parents are always with us for the doctor's appointments so we have great family support. Being there during results would be great I think, it's always good to have an extra ear to listen, I think receiving news that about cancer is always overwhelming and many times different individuals hear things differently. It is great that you set up a website for them, and that your siblings are also always in contact. Be there as much as you can, but also give him space...I know as a patient I also need time to myself like I always had before, that way I still feel "normal." I know I probably didn't offer much insight to anything, but post here anytime!! We are all here to help if we can.

    Cathy

    thanks so much---if I was
    thanks so much---if I was the patient I know I would be just like you are!--your thoughts re-affirm what I feel. It's hard to balance the desire to be there a lot (with my parents) with knowing they need their own space... They have been so healthy, we all don't have experience with this.. I have read many of your posts and appreciate what a honest and positive person you are...it helps those of us worried about loved ones stay positive too. I am only beginning to understand how to use this site---thanks again and Congrats on doing so well!
    Kim
  • WildGoose7
    WildGoose7 Member Posts: 31
    #4
    Distance Family Support
    K-ann

    In my provincial and newly experienced view on this topic, I'm faced with much the same situation, only I'm the patient.

    I live in Kansas, my only children, all adult, life on Long Island and my 92 year old Mom lives in Iowa. Due to a nasty divorce many years ago, I've had a roller coaster relationship with my kids. 2 of them want to help me, and the other is somewhat bitter towards me. My mom can't come to visit, as she is pretty much homebound and my guest room is still full of moving boxes.

    I, too, have been and remain an independent person. The best tools I have for distant family support are the telephone and the computer. Every situation is different, just like every cancer. Speak frequently with your parents and try to determine the support limit line, is the best I can say right now.

    I wish you all the best.

    Mike
  • MOE58
    MOE58 Member Posts: 589 Member
    #5
    Space sometimes is best
    Kann

    If we didn't have this site for each other we would all be in the funny farm. Its very nice to meet you.. I am sure its very hard for you to deal with this with your parents being so far away. My husband too likes his space and he is the one with cancer, except he is cancer free right now. As long as they think they can do it by themselves let them, they still want their independency, but someday when they cant handle anymore they will ask for your help. I know I have been there and done that, but know we are here if you need anything. I wish you the best.

    Lori aka MOE
  • emg09
    emg09 Member Posts: 228
    #6
    MOE58 said:

    Space sometimes is best
    Kann

    If we didn't have this site for each other we would all be in the funny farm. Its very nice to meet you.. I am sure its very hard for you to deal with this with your parents being so far away. My husband too likes his space and he is the one with cancer, except he is cancer free right now. As long as they think they can do it by themselves let them, they still want their independency, but someday when they cant handle anymore they will ask for your help. I know I have been there and done that, but know we are here if you need anything. I wish you the best.

    Lori aka MOE

    Hi Kim
    Hi Kim,

    You and I sound like we are on the same boat. My dad is also 70, will be 71 on 2/23. He was also a healthy young 70 until this horrible cancer took over. My parents and I live in Maryland, I live about 25 mins. for their house. As of right now my dad is in a clinical study in Pittsburgh, PA. I don't get to go with them, only been there once when he was to have his surgery. I have to sons that I can't leave for that long. My parents also fly to PA. through a volunteer pilot program which has been wonderful. When he was 1st diagnosed we thought he was a T3N1M0, which turned out to be wrong, we just found out that he's a T4N1M1b and that should have been his original staging. Anyway, I know how you feel about wanting to help but not being able to be there for everything. When they go to PA they are there for 10 days, so I can only call and check on my dad. It's very difficult to be far away and the only advice I can offer is to send your mom a list of questions to add to their own questions take with them to the Dr. My poor dad has been very sick and it's heart breaking. I think providing support over the phone is helpful on both sides. Anyway, sorry to meet you this way. Please keep us posted on your dad's progress!!

    Erika
  • K_ann1015
    K_ann1015 Member Posts: 500
    #7
    emg09 said:

    Hi Kim
    Hi Kim,

    You and I sound like we are on the same boat. My dad is also 70, will be 71 on 2/23. He was also a healthy young 70 until this horrible cancer took over. My parents and I live in Maryland, I live about 25 mins. for their house. As of right now my dad is in a clinical study in Pittsburgh, PA. I don't get to go with them, only been there once when he was to have his surgery. I have to sons that I can't leave for that long. My parents also fly to PA. through a volunteer pilot program which has been wonderful. When he was 1st diagnosed we thought he was a T3N1M0, which turned out to be wrong, we just found out that he's a T4N1M1b and that should have been his original staging. Anyway, I know how you feel about wanting to help but not being able to be there for everything. When they go to PA they are there for 10 days, so I can only call and check on my dad. It's very difficult to be far away and the only advice I can offer is to send your mom a list of questions to add to their own questions take with them to the Dr. My poor dad has been very sick and it's heart breaking. I think providing support over the phone is helpful on both sides. Anyway, sorry to meet you this way. Please keep us posted on your dad's progress!!

    Erika

    thanks for all the feedback
    thanks for all the feedback guys!!
    ...I am still learning how to use this website--so don't know how to thank you all-unless I send you all separate messages? Anyway Kitten, Lori aka MOE (and the big girl panties I read about!!), wildgoose & Erika---each of your responses held a different nugget of wisdom for me ---thanks for taking the time to respond. It's good that I have a very supportive husband that can/will help out with the kids when I go visit/help my parents. Ironically he has a little more time lately because of a layoff. He is paid until the end of the year...but of course it is still a little stressful... I may need to vent here in the future, but my dad always said "No matter how tough you think you have it----someone else out there has it worse!"
    Kim (K_ann1015)
  • mumphy
    mumphy Member Posts: 440
    #8
    K_ann1015 said:

    thanks for all the feedback
    thanks for all the feedback guys!!
    ...I am still learning how to use this website--so don't know how to thank you all-unless I send you all separate messages? Anyway Kitten, Lori aka MOE (and the big girl panties I read about!!), wildgoose & Erika---each of your responses held a different nugget of wisdom for me ---thanks for taking the time to respond. It's good that I have a very supportive husband that can/will help out with the kids when I go visit/help my parents. Ironically he has a little more time lately because of a layoff. He is paid until the end of the year...but of course it is still a little stressful... I may need to vent here in the future, but my dad always said "No matter how tough you think you have it----someone else out there has it worse!"
    Kim (K_ann1015)

    Hi Kim
    Sorry we haven't met yet I've been a little distracted lately. My husban Al is 61 and has stage IV EC operable now and we are just waiting for the go ahead in the mean time he has to gain weight & strength.

    Al's children live in N.C and are not able to be here with him when they would like.
    We keep in touch via e-mail almost daily and thank God for the world wide web because if we didn't have e-mail our phone bill would be well unbelievable. We do have alot of family
    here in Pittsburgh but it not the same.

    In the meantime I have the wonderful people on this site to keep me sain and to help with
    bad days and answer questions and to just be here for me. We really do understand what each other is going through. As a direct caregiver it is nice to know that I have these people to come to and they have always been here for me. I can not list everyones name because there are so many people here that will help when you need it.

    I'm glad that your husband is there to support you so that you can support your parents.
    Glad to meet you.

    God Bless
    Kathy
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #9
    from a caregivers point of view
    Hi Kim,
    Like Kathy, I have been a bit distracted too.......my husband (57)was dx in March with stage iv ec. Surgery not an option.....but he is responding very well to chemo. He is in remission. We have another PET scan on Monday to determine if it still is in remission.
    We retired to FL 2 years ago. My parents are in Charleston...8 hours away...and I have a brother on the west coast of FL...about 3 hours away. The rest of my family and my husbands family are in NJ.....so there really isn't anyone that is close. When he was first dx, everyone wanted to come right away....we asked them to wait...we needed time to digest what was going on. Since then we have had people visiting on and off since then. My 2 sisters were the last ones here....they stayed with me when my husband had his last round of chemo (in the hospital) in July. After that, many people have offered to come but we have asked them to wait. We really needed the time to ourselves. It is comforting to know they would be here in a minute if we needed them. I think most people feel they need to do something and coming here to keep me company is about the only thing they can do. It is hard to convince them that I am OK alone...well actually not alone...we have a huge support system here....have made lot's of friends since moving here and they have been amazing. Of course your situation is different...this is your dad and I know when something is going on with my mom or dad, I feel like I need to be there so they fully understand what the dr is telling them. I think you will know when you should go.

    CaringBridge is a wonderful site. I have one set up for my husband. We have such a big family and there was no way I could keep everyone informed as to my husbands progress...and they last thing I wanted to do after spending a day at the hospital or after a day of caring for him at home, was pick up the phone. It has been a lifesaver.
    Not sure if I helped....will pray for your dad....and stay strong.
    Jane

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