coping when your loved one gives up hope

cancerhater

coping when your loved one gives up hope

cancerhater

my family has had its share of hardship and battles with cancer.  my two aunts were diagnosed with breast cancer, my father died of pancreatic cancer, my mother had cervical cancer.  she fought it and put it into remission, but only after chemo and several radiation treatment that now she is suffering from the side effects 7 years later, she is continuing to lose her organs and her health is continuing to fail.  my grandmother was diagnosed with breast cancer, she had the surgery where she had her breast removed, but unfortunately now, she has uterine cancer.  it is at a stage 4c.  doctors said radiation may not help and chemo may slow it down but there is not much we can do now except make her comfortable.  my grandmother is a woman of faith. i know there are miracles everyday, if you seek them.  she is refusing any and all types of treatments.  she is in pain now and can not sleep at night, but she does not want pain meds, or sleeping aides.  she says she does not want chemo, because when she dies she wants to have her hair, she does not want a wig.  i want to respect her wishes, because we just celebrated her 82nd birthday last weekend.  she has lived her life.  but call me selfish i guess.  she is attacted to my daughter, my daughter seeks her almost on a daily basis.  how do i explain that to her?  how is she going to handle the painful passing of my grandmother?  she does not want to have anybody take care of her.  she has lived alone for almost 40yrs and she does not want that to change.  this is very hard to handle, because i worry so much about her.  what if something happens when she is alone, if she falls, or hurts herself, or just something bad and she needs help?  what can i do to try and allow her to let me help her?  she is a very proud woman and does not like asking for help and she usually turns away help if she feels that the person is just taking pitty on her.  my mom has always said that i was her favorite until my daughter came along.  my grandmother knows i love her.  but is want to help.  i am scared and feel alone, because i feel no one understands how i feel.  i am scared to death of cancer.  i hate it.  but around my family i can not show emotion, so i wait until my kids are asleep or i take a long shower and then i cry.  everyone thinks i am the rock of the family.  so they depend on me to take care of them, or deal with the docs.for them, and handle everything else.  at the same time i have my own problems, but i can't turn them away.  i just "fake a smile".  please help somebody!!! i just need someone who understands what i am feeling/going through.  it is so hard.

maddie103

she has lived alone for almost 40yrs and she does not want that to change.  this is very hard to handle, because i worry so much about her.  what if something happens when she is alone, if she falls, or hurts herself, or just something bad and she needs help?  what can i do to try and allow her to let me help her?  she is a very proud woman and does not like asking for help and she usually turns away help if she feels that the person is just taking pitty on her. 

So sorry you are going through this.  All you can do is continue to try to reach out to her and let her know you love her and want to help.  I can relate to what you are going through somewhat.  My mother-in-law is 69 years old and has stage 4 bc to mets (dx with that in May 2007).  She has lived herself for many years as she has been divorced from her hubby for mor than 20 years.

She is very stubborn and while she doesn't outright refuse help from her son (my hubby) and her daughter, she doesn't make it easy either.  Her daughter takes her to her medical appointments and she at least takes pain meds and has tried chemotherapy but had to stop it (her body didn't tolerate it very well).  She has wasted down to about 65 pounds (was always a very small petite woman but never that underweight) and is nauseous all the time.  Her family regularly wants to check on her but most times she won't answer our calls and you can't even make a surprise visit because she lives in an affordable housing senior high-rise that's a secure building and if she doesn't buzz you in, you won't get in.  She will ignore the buzzing and say she was sleeping.  Sure that excuse may work once in a while, but you can't be sleeping each and every time someone wants to visit you.  We have tried to set-up visiting nurses for her, but she won't let them in either and says "What good are they, all they do is check my vitals?".  She is a very stubborn woman.

It stinks but we keep the lines of communication open and continue to help when and if we can.  I hope your mother opens up and allows you to help (at least with pain management, there's no reason she should have to suffer by not taking any pain meds).

My heart goes out to you.  Good luck.

Linda - PA

Shirlann

Honey, this is so hard for you.  But the kindest thing you can do now, in my opinion, and this is just my opinion, is help her do what she wants in her own way.

Respect that she knows all the options and has chosen her own path.  I am 72, and when the time comes, I sure hope my family will do this.  Let me live my last months, as I choose.

And I would tell your daughter, grandma does not want any more treatment, tell her, she has fought the long, hard battle, and now, just wants peace and time to do what she wants to do.

Your acceptance of this wish is so important for your grandmother, so she can know you understand and respect her wishes.

This is just my opinion, and what I will want for myself.  Others may have much better ideas, but I know exactly how she feels.

Gentle hugs, Shirlann 

cancerhater

thank you for your comfort.  for people who do not understand the hardship of cancer, not only on the patient but for family members, it seems they can not relate or do not even know what to say.  the fact is...our families are batteling for their lives.  some may succeed and same may fail.  with the technology of today, we are able to prepare ourselfs and families when the doctors say that the battle will come to an end, and the cancer will win.  it is an awful thing to say, but it is reality. i feel it is important to find people who can understand the situation and relate to you and is not afraid to talk about it.  truly from my heart, thank you

iodine

I feel for you.  I know the pain of watching someone go downhill and being able to do nothing to stop it.  I, however had the different problem of having to fight the medical system years ago, before they woke up and listened to people's wishes to die as they wanted.  I had to fight the system and my brother for my mother's wishes to be let alone and not be treated with everything available to medical science when she was beyond treatment.  She was put thru painful tests, treatment, and more because they could, not that it would help her, but just because they could. Oh, and Medicare would pay for it.

I beat my head against the wall for weeks for them to let her alone, I was her only advocate, even tho I had a signed living will, it was not accepted.  This was many years ago.

So, we have different problems, but please know, you have an opportunity to give your grandmother the rest of her life the way she wants to live it.  Please do this with a full heart.  She has made her wishes known to you.  Let her know you that you respect her wishes and will fulfull those with love and kindness and help her in any way she chooses. 

I tried so hard to do that for my mother, I was just not allowed to do so.

roseg

I could be more accepting of an 82 y/o who didn't want to undergo treatments for cancer. But a 69 y/o isn't that old, it would be much harder for me to live with that.

Still, it's their life and you have to be respectful. The whole cycle of treatments and illness can be a huge drain on a good life. If you can help your Grandmother live out a good life, doing whatever you can to help, then I think you can feel that you've done enough. 

cancerhater

thank you everyone.  let me just give a quick update.  i made dinner for my grandmother the other night.  when i mentioned to my daughter that we were going to visit, she was just so excited.  well when my grandmother saw my daughter, her face lit up like a child in a toy store.  she had a smile from ear to ear.  i am afraid of explaining the situation to my 8 yr old daughter.  i do not know how hard she will take it.  they are not only great grandmother and grandaughter, they are like best friends.  any suggestions?

Shirlann

Well, I have been on these boards a long time and I think the best thing is to gently explain pretty much the truth, not over her head, but tell her grandma is pretty sick with cancer (do not hesitate to use that word) and that she wants to do her own thing.  Children are a whole lot stronger than we give them credit for.  And while she doesn't need to know the minute details, she does need to understand that things are not good, the family is worrying and that her grandmother loves her so so much.  Emphasis the love, that she doesn't want to leave the family, but it might be time pretty soon.

A little preparation now is good.  You have to be careful, of course, not to overload your daughter.  I would tell the school, and her teacher, sometimes this can help a whole lot.

In the old days, people did not tell the children anything.  Sometimes beloved family members just disappeared.  It hurt the children a lot worse than the truth.  I have a friend right now whose mother died when she was 7, and no one EVER told her anything, nor was she taken to the funeral.  These decisions need to be made carefully, as you don't want to scare her or scar her.  But she is a member of the family and as such should be included in the bad with the good.

At least this is my opinion.

I am so sorry, Shirlann 

cancerhater

thank you again. i think i am dealing with the situation ok.  i know that this is going to sound a little crazy, but i would like to keep contact through this site.  i believe that everyone here understands the everyday struggle.  i really don't try to talk to my friends because i know they don't understand, and i don't want to feel like everytime i am around them, i set a gloomy mood.  i think my friends are a little afraid of saying something that would emotionally upset me.  if that is ok, with everyone i would like to post my feelings and my grandmothers status, maybe even my daughter. i believe this site has actually helped me a lot with dealing with everything.

iodine

No problem!  We're all fighting the beast and if a warrior needs a bit of help from a friend, we're here for you.  Believe it.  We all need a safe place to vent, whine, and not be judged.  You've found it, Sweetie.

Hugs.

LANEF

First of all, let me start off by saying I am sorry you are going through this.  It sounds like you have had a horrible past with cancer in your family and again I am sorry.  But you have come to a wonderful place to get help and just have people listen to you.  I am not sure what I would have done if I had not found this place.  So many wonderful people are here.  It just feels safe.  Like you said about your friends not really understanding.  People her do understand and you are not alone.

     As far as your daughter goes, you said she is 8 didn't you?  My kids are 7 and 8 and my mom is stage IV.  They too are also very close to Grandma.  She took care of them alot while I worked and they spent many nights with her.  Her house is like their second home.  We have come close to losing her a few times battling this awful disease.  They are old enough to know she is sick.  They are old enough now to know when she starts to feel better and then when she starts treatments again and get's sick they know.  I try to tell them what I feel they need to know.  If my mom starts to get really bad and it gets to the point it looks like she isn't going to pull through (this has happened a few times), I just tell them that the Doctors have tried to make Gram feel better but they can't always make her better.  I let them know that she doesn't want to leave them, but she just get's tired and doesn't want to be sick anymore.  I re assure them about how much she loves them.  I also make sure that they know it is ok to be sad, it is ok to be scared and it is ok to cry.  I let them know I do too sometimes.  I let them know sometimes I am scared and sad.  But most important I tell them that if they have any questions at all, they can ask me and I will try my best to answer those questions as honestly as I can.  I feel it is important for them to be informed to some extent. Because then they can have time to sort out their feelings too.  And if they know that mom has the same feelings, that seems to help too.

     I hope this helps a little.  Praying for you and your daughter and your Grandmother.  Hugs

Lanef

LisaSDCA

You know what, you really still are her favorite, and she sees some of the child she loved in you once again in your young daughter. No wonder she was overcome with joy to have you bring over a meal to share as a family. I'm sure the innocent, open acceptance of her great-grandaughter is a tonic for her. She likely feels your concern for her, your wish that she might choose otherwise. But you are wise to respect your grandmother's final decision for her own life - it is an act of love on your part.

I imagine your daughter knows her dear great-grandma is old and fragile. Answer her questions honestly, but I don't think, personally, that you need to have a serious sit-down with her. Let the two of them have as much tme together as possible. As Shirlann said, children are a lot stronger - and more perceptive - than we give them credit for. Their simple acceptance of "you get old and then you die and go to heaven" is so much less angst-driven than some of the complex, fantasy explanations some adults try to feed to them as "here's what happened and you don't need to go to the funeral it would be traumatic". arrrgh

Please continue to feel welcome to share your journey here.

All the best to you and your family.

Lisa

cancerhater

hello everyone. thank you for your kind and loving words. i hope everyone had a safe halloween.  After i picked my kids up from work, we went straight to great grandma's house, so they can change into their costumes ( they go to a private school that didn't allow them to dress up).  i wanted my grandmother to see my kids (especially my daughter) in their costumes.  She looked tired and run down.  She did complain a little bit of being in some pain. she did not want to tell me too much, but she let a little info slip out.

When i had spoke to my boss about my grandmother, she started to tell me about the stages of pain that my grandmother is going to go through.  I don't know if she was trying to be funny or not, but i was kinda offended.  My boss told me that when her ex mother in law died of cancer, she had refused to take pain meds. like my grandmother.  but the day that she died she was in sooo much pain that when she died, she died with her mouth open like she was screaming in pain, and with her arms raised to her head.  she made a face trying to imitate her ex mother in law, and it freaked me out.  she said she was serious.  my boss does tend to over exaggerate on occassions.  but could this really be what my grandmother has to look forward to.  my boss said that when they buried the poor lady, that could not have an open casket.  this is really scary and creepy.  i don't want my grandmother to experience such pain as what was described.  can someone give some insight?  will she get to the point when she will just be screaming out in agonizing pain?  i pray to god that will not happen.  i pray that her passing will be peaceful and painless. 

iodine

Well, I have a few unlovely words for your boss, and I'll just leave them out of this post and to your imagination! 

That description was TOATLLY not necessary and in very bad taste.  What is it with people!  Like we really want to hear, let alone SEE, this crap?

I would hope that your gram would allow you to contact a hospice and let them talk with her about pain control that would allow her to keep her faculties about her and not put her into a "coma" which is my guess that she wants to avoid.  There are all sorts of pain control now that are slow time release like patches and such that she could use.  You can even get lollypops made up that she can lick till she gets just the right amount of pain relief and no more than she wants.

May I suggest YOU talk with a Hospice and see what they may offer you for suggestions and let us know what they say. OK?