Getrting mom to share

ago · New User Joined: 24 Jun 2005 Posts: 5

Hello,

My mom (60-year-old) was diagnosed with stage 3b lung cancer 2 weeks ago and has started chemo last Monday. She is a very strong-willed ("stubborn"!) who raised her two kids on her own and is single at the time.

She has resisted in telling even her relatively clsoe siblings about the diagnosis and is so far refusing to tell any of her frineds, even the close ones. I fear that her trying to cope on her own is going to be pretty hard, especially since she does not particularly want to discuss much with us (2 daughters); we try to get her to talk but get mostly one-word answers. We will continue to be there for her but are worried she needs another outlet. A psychologist (advised by the doctor) did not crack her and she is unwilling to join local cancer-support groups.

Any ideas on how to get her out of her shell, to share with close friends?

TIA,

Ago

UpSetDaughter · New User Joined: 24 Jun 2005 Posts: 3 Location: Louisiana

I'm going through 'sort of' the same thing with my mom. Here's a little history about us:
Twenty- three years ago, my mom was suddenly diagnosed with breast cancer; had a radical mastectomy; failed implants which caused gangrene, and she SWORE that this disease wouldn't 'control her' and vowed NEVER to take chemo/radiation, etc.
She's a very strong-willed (stubborn), faithful, loving mom who, unselfishly, put her worries aside and continued caring for my dad and my 4 siblings.
Everything went well, until 3 years ago, when the damn cancer re-appeared via tumors on her torso. Ever since then, it's been an uphill battle as the cancer continues to spread. My mom is now 72 years old, all of my siblings live out of town (except me), and fortunately, my dad (74 y.o.) and she are still happily married. She has one sister with whom she is very close, and many dear friends who she doesn't even care to talk to anymore.
When the cancer re-appeared, she started on Tamoxifen which was working until recently. Late last year, she had colon surgery and they found a malignant tumor near her cecum (the beginning of the large intestine); luckily the tumor was removed without the need for a colosttomy. She recently underwent more colon surgery and a malignant tumor removed from under her right eye.
Her doctor wants to start her on Xeloda since the Tamoxifen isn't working anymore, but she can't drink fluids, doesn't eat much, and tells me she's 'ready to die'. The Xeloda will cause her many ill side-effects and I don't think she'll be able to handle it.
I am a nurse and know how rapidly this cancer can spread and I also know not eating or drinking isn't good either.
I ask her time after time what her doctors say, but she tells me she doesn't want to talk about it. I'm sure my dad knows, but she's asked him to keep silent.
Unfortunately, I have to work (wish I had Paris Hilton's money!), but I go see my mom almost every day after work and on the weekend. She's hardly got any energy and wants to stay on the sofa all day. Here's the frustrating part - I see her in pain - and she won't take anything for it, except 1/2 Tylenol every other day or so.
I'm worried about my dad and HATE to see them suffering like this, but at the same time, I feel like I'm starting to lose my mind. It's very frustrating being a nurse and not being able to help a patient, especially your own mom.
I'm sure so many emotions are running through her head, but I think she needs to be able to vent and get some of those feelings out. She's already abandoned her friends, refuses to go see other doctors, doesn't want hospice and what really scares me is that she doesn't want to see her grandchildren whom she loves with all of her heart.
She refuses to inform me of her medical reports, which she has every right to do, but when I visit, she asks me such things like, "If I stop eating, how long will I live?"
I'm really getting confused and spoke with a friend of mine yesterday to try and get some answers. My friend is a psychiatrist who is also fighting her own battle with breast cancer.
If someone has the 'magical' answer on how to get a cancer patient to 'open up', please share it.
My mom has already picked out the clothes she wants me to wear to her funeral, bought my son a new suit for the funeral, has her will in order, her own clothes picked out, etc. The actual 'death' stuff has already been discussed with me, but I feel stupid when she asks me pertinent questions about the disease, but I can't answer because she won't even tell me what the doctors have said. I don't want to scare her and tell her too much in case she's not really that close to the end.
I do believe she will die within the next month or two, but what do you do in the meantime? All we're doing now is visiting, encouraging her to eat, drink, talk, get mad, laugh - whatever she wants - but she's really clamming up tighter.
HELP!!! This is a terrible thing for patients and family member to have to go through and I do hope there's a better form of treatment or a cure right around the corner.

loftus75 · Posted: Fri Jul 08, 2005 9:43 am Post subject: Re: Getrting mom to share

I am a 55 yr old male with stage 3b NSC lung cancer with an added complication of heart failure. I'm told I have 12-18 months to live. My wife is a nurse and has been the anchor in my life throughout our 37yrs together. I have prefaced my response to UpSetDaughter's and ago's posting so that they might get some insight to their mothers state of mind through someone else who is also terminally ill.

First I do understand that both have very deep emotional connections to their Mother and would no doubt move heaven and earth if it would help their mother. Sometimes we love a person so much that this love can blind us to the needs of the person the love is directed at. Sometimes we 'project' our fears and anxieties onto our loved ones. The problem then becomes one of the harder you try the worse the problem seems to become.

You both seem to feel that you mother's behaviour would improve if they would just talk, get in touch with their emotional side and express this. But who is this really for, is it because you believe it would make you feel better and by default it would follow you mother's would feel/be better? The help you talk about is defined by what you believe would help rather than what your mother's would define as help. It seems in both cases the mother's do not want help to be imposed, but would prefer to make their own choices, even if those choices are painful for the people that surround them.

We all have our own unique way of dealing with death and terminal illness. I believe dying is not just about me, while others believe it is exclusively about them. Neither view is the correct view, there is no 'correct' view, we simply deal with our circumstances the best we can. However having others impose their beliefs or solutions, no matter what the relationship is, does not always make things easier.

If you mother/s have come to a point where they feel they have had enough and no longer want to go on, then as hard as this is to face, it should be accepted.

I love my wife and have done since I was a boy of 17, she also loves me and has stood beside me through life's up and downs. We both know we don't have much time left together and we both know that we can talk about anything we want to at any time. However, I have dark moments when I withdraw and become insular, my wife allows me to deal with these times on my own terms but remains available and supportive should I need her. Sometimes doing nothing is the right thing to do. Perhaps in this case, giving your mothers the space they need to move through their dark moments would be the best thing you could do for them, be available but do not impose.

I know this is very hard, there is nothing nice about dying, it not easy for anyone concerned, by all means find a place of peace for yourself, this is vital if you are to ease you own pain, but you must allow other's the space they need to deal with their circumstances on their own terms.

I hope both of you can find some peace while you travel down this very difficult path.

UpSetDaughter · New User Joined: 24 Jun 2005 Posts: 3 Location: Louisiana

Loftus, thank you so much for sharing your own personal story; I will keep you and your wife in my prayers. Also, thanks for the 'enlightening' response.
Since my last post, a couple of things have changed. I (with my mother's permission) called her MD and spoke to him about her situation from a nurses point of view, as well as a daughter's point of view. He said it helped him tremendously understand the 'big picture' a little better and he would discuss other 'options' with her on her next visit.
I informed my mother of the conversation and told her to be prepared to start facing some cold, hard facts next time she went to the MD. She thanked me and hung up the phone.
I gave her the 'space' she needed over the weekend; and although I felt guilty as hell for going out of town for the weekend - I did.
After her appt. on Monday, she called to tell me what her MD said; she also added that he didn't seem as 'nice' as he usually is. He started her on Megace for her appetite (she's now eating everything in site), Darvocet for pain (though mild, this med works for her), and she started taking the (already) prescribed Xeloda.
She invited the entire family (grandchildren included) to her house that Friday for dinner and a slumber party! The kids played and we all watched a slideshow of family events of the past. It was GREAT! We allowed her to wander off at times and cry without following her (I can't imagine her feelings - how sad she must feel) and we all laughed and cried (happy tears) together at different times.
We realized how wonderful our family is and what a SPECIAL mom we have; she's taught us how to live, and unfortunately right now, she's teaching us how to die.
I guess I'm just a wimp - I care so much for people and the tragedies they must face - it's hard for me to 'step-back' and not try to help in some way. My Grandfather noticed this characteristic in me years ago when I'd complain to him about the treatment I've seen towards patients in nursing homes, home health, etc. I graduated nursing school over 20 years ago, and thought I'd be able to take care of everyone, but what he told me was, "You might as well wear slippers because you can't carpet the world."
I know it's God's place to take care of His people and I must learn to hold on to the belief that He will.
Meanwhile, we're taking this damn cancer one day at a time.
Again, thanks for posting and know that you're in my prayers; if I can help you in any way, please e-mail me (see, here I go again! LOL).

mssue · Posted: Fri Jul 08, 2005 11:12 am Post subject: Re:Getting Mom to share

Hello Everyone,

This is such a difficult time for all of You,I wish I had the magical wisdom to give answers that would cure all,but this subject is sooo deep. You are all so strong and courageous.God Bless You All! Many would hope to have people like You in their lives-Your families are so fortunate. Keep Your Faith,do what You know is right and live everyday as if it were the last and tell the those You care about that You Love them-often.Along the way remember to stop and smell the roses,everyday is a beautiful blessing!

((Hugs))
_________________
Sue
Age-44
DX-8/29/2003
Stage 1 - ER/PR-,HER2-NU+
Infilterating Ductal Carcinoma
Modified Radical Mastectomy/Left-side
4 Rounds of A/C-completed 1/2004

UpSetDaughter · New User Joined: 24 Jun 2005 Posts: 3 Location: Louisiana

GO SUE!!! Hugs, prayers and well-wishes are being sent to you this very moment.
I can't imagine what cancer victims must go through - the doctors and hospitals are one thing, but the mental anguish must be the worst!!!
I love being a nurse, would never do anything outside of my realm of knowledge, and have vowed to always give 110% to my patients whether they have cancer or not. I'm not a nurse for the money it pays, but for a sincere apppreciation and concern for all the sick people I come into contact with. I only wish I could do more...
If you want to answer - how are you feeling now? I respect your decision if you don't want to share and thank you for responding.
God Bless!

ago · New User Joined: 24 Jun 2005 Posts: 5

Loftus, I want to thank you for your response.

I also have had some time to deal with these issues and have talked with my mom about her sharing (or not). We see each other 2-3 times a week, and all I do is open the door to a discussion and change the subject when she doesn't feel like talking. We have had some very frank discussions about outcomes, treatments, arrangements, living will, etc.

The thing I get the most from her is that she desperately wants our lives (and her own, for as long as possible) to remain happy & normal. So we honor her by going to our kids' soccer games, having friends over and enjoying ourselves even though we are heartsick with this horrible predicament.

Good luck to all, you will be in our thoughts as well. Again than you Loftus for sharing. That is a very courageous thing to do.

Ago

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