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Joined: Jul 2003
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didier Offline OP
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My mom is coming up on two years post treatment in November. Thankfully her scans have been clear, but there have been many issues stemming from treatment side effects; depression, neuropathy, stenosis of the throat, inability to eat orally, etc. I have taken her from doctor to doctor, ERs two to three times a week, psychiatrists, psychologists, neurologists, oncologists, pain clinics, nutritionists, interinists, and survivor groups. The problem is that she is so depressed, she doesn't seem to want to get better or do ANYTHING. One doctor suggested that 90% of her problems are in her head, yet he dopes her up on all sorts of narcotics to combat the neuropathy that she's stoned all day. She lays in bed with the covers pulled over her head, slurs her words, and has no motivation. She generally doesn't know what day it is, what time it is and she refuses to be self sufficient even though the psychiatric nurse tells her there's nothing stopping her from moving forward with her life. I'm at a total loss. I don't know what to do. I am burning the candle from both ends trying to keep an eye on her and trying to maintain a shred of my own life. Hell, I've been so whacked out from the pain of fighting cancer that bombarded both of my parents that I haven't been physical with my wife in two years. I'm at a cracking point. I have done all I can do, the doctors have done all they can do and have told my mom that her recovery has been in her hands since November, 2003 yet she hasn't shown much interest in moving forward. For a short period of time she returned to work, was driving and seemed to be moving on. Perhaps my dad's death affected her, although they've been divorced for about ten years and had not seen or spoken once throughout that period of time. She neglects her pets, doesn't take care of herself as far as eating or cleaning and just seems to be giving up. I told her that she should consider assisted living if this is her chosen path. She told me she would kill herself before doing that. I absolutely don't know what to do anymore. I can't afford to hire someone to stay with her 24 hours a day, and furthermore the doctors don't encourage it because they think mom will just take advantage of the situation. Again, I don't know what to think. She isn't eating because she says the liquid nutrition tastes so bad even though she pours it through her tube. Her nutrition and weight are going to hell, she isn't staying hydrated...although she will eat if my sister coddles her. There are so many doctors involved that it's hard to keep everyone on the same page, that doesn't help matters. She is so fortunate to have beaten cancer, yet all of these other hurdles have stopped her in her tracks. She seems to prefer being medicated and in a state of mind where she doesn't have to deal with anything.
I tell her how fortunate she is, granted the side effects and psychological issues haven't been pleasant, but it is possible to move forward...isn't it? Granted, life probably won't be the same as it was prior to having to cancer, but life can still be enjoyed...can't it? I have met so many wonderful people who have lost their battle with cancer, it's such a shame to see my mom not embrace life post treatment. Maybe I would feel differently if I went through treatment, I don't know. Perhaps I would feel the same as she. I just don't know. I have met other stage IV survivors who went through the same treatment who have moved forward and are making the best out of their lives. What am I missing? What can I do differently to try to change her perspective? My dad, forever the pessimist, fought til the very end. I really think he would have loved to beat cancer. What's different with my mom? Perhaps there are more deeply rooted issues that I am unaware of. She seems to thrive at the hospital, but as soon as she gets home she complains about pain and nausea and this and that. I so don't know what to do anymore.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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Goodness! My dear man, you are really going through too much. I have no medical training at all, so am not qualified to say anything, but it sounds so much like dealing with a child that I think I would be tempted to do just that.....I think I'd have the potency of any drugs cut if the docs agree...or put placebos in the bottles if you think she is taking meds for the sympathy.
I don't know how old she is or how difficult her life has been. I know my father-in-law just seemed to decide one day that fighting illness was too much effort, and he just quit. It was hard to watch, but there was no interfering with his 'death-wish.'
It would seem that she is craving the attention. I have to say that at times I was aware that during recovery, my husband was milking as much attention and sympathy as he could from whomever he could. During the rough parts of treatment and the initial recovery, I was at his beck and call and 100% of my attention was on him. As I saw him getting better, I began to back off.....and boy, did I see him suddenly be "unwell" or "weak" or whatever.......and I realized he was just so used to being the center of attention that he was having withdrawal pains! It made me think of raising the kids and I definitely had to wean him away from 'being needy' 24/7. It was not easy, but he surely did need the kick in the pants. The other REALLY BIG kick in the butt came when I was so very tired of his constant complaints about the eating issue. He wanted the feeding tube out, but he just wouldn't really WORK on eating enough to make that happen. Nothing I said, of course, was encouraging enough. The really nice girl at the nutrition center, however, told him the same things I did, and VOILA!, he began doing JUST WHAT I'D BENN SAYING, and within 3 weeks, the tube was OUT and he's been doing well ever since. He admits he needed the Kick from her (mine was just the nagging wife input! smile )..and perhaps that is what your mom needs....someone ELSE to tell her she is on her own.
The 'thriving at the hospital' comment makes me feel that that is exactly what is happening. She is loving all the attention as is afraid that if she is well, she won't have it.

Didier, I'll be thinking of you and your family during prayers....what a hard place to be in. Hope things improve soon.
God love you.
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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Didier, I wish you could reread your post from a totally unbiased, objective viewpoint. The answers to your questions are there already. It seems to me that the bottom line is: Do you want to live YOUR life or hers? Her life is HER responsibility unless her mental faculities are gone. Tough decision-yes- but it sounds like you have given it your best shot. You can't make her well. Hope this isn't too harsh, I don't mean it that way. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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I would say when she is in the hospital for one she feels secure and for two she gets tons of attention.
I know its your mother but you are going to have a melt down, lose your wife and your entire life trying to please someone who can't be pleased.

I would tell her either she gets up and gets on with it or I am commiting her to a home. I know that sounds harsh but sometimes tough love is the only way to go when all else fails. Once she knows you are really serious she may get a move on who knows.

I wish you strength,
Barb~


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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Didier,
I pray you won't be offended by anything I am going to say.
Reading your post only one word kept coming to mind, and that word was "selfish". Your mom isn't the first person in her situation to do this and certainly won't be the last. She's been through alot and in some people it's the natural reaction. What will change it is the reaction she gets from others. She isn't going to change it on her own, that's pretty obvious. You are enabling her, you and all the doctors. She is healthy enough that if left to her own doing for a week or so she will survive and be fine. Make her do for herself, stop treating her as if she is still sick. Many of us that are two years out and went through surgeries tougher then anything she experienced are self sufficient and she should be also. Only you can end the cycle she is living. She won't do it because she likes it this way, likes being taken care of. Appeal to her motherly feelings, tell her how this is affecting YOUR life. Your mom is not going to lay in that bed and waste away if she is left to take care of herself for a change. Give it a try. Most it can do is make her angry and that's some energy so it's worth it!
I wish you much luck with this.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Didier,

You are really caught between a rock and a hard place. I think you have received excellent advice from the above posters. I really don't have anything to add, but I heartily second their advice. You need to step back for awhile and make your mom do it on her own, painful as that may be for you. It sounds like tough love is needed. I wish you the best and I hope this situation gets resolved soon.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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didier Offline OP
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Thanks, you guys. I agree. I have adopted the tough love approach. I have. It's in her hands, and there's nothing more I can do. I'm not discounting the severity of the disease, or the aggressive regimen, but I have met others that went through the same treatment that have survived and moved on. The place where she was treated is known for having a very aggressive protocol, but even her doctors have basically said she needs a good kick in the butt. Tonight I met some friends for dinner whom I haven't seen since my parents got sick. The first thing out of one of their mouths was that I didn't have gray hair the last time they saw me. I don't know if stress has anything to do with it, but it was another nudge that suggests I should start to live and enjoy a life for myself and let her try to do the same. Thanks again.
Dave


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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Posts: 497
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Good for you. Now go out there Dave and enjoy your life and when the time comes please do not have any regrets. You gave 100%. You did good.

Blessings,
Barb~


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran

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