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No one will listen to me

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

My mom has barely eaten what would even be considered a small meal in the past 5 days (consisting mostly of a little baby food, creme caramel, and a little broth). This is due to continued pain, soreness and swelling in her mouth and throat. She is so weak that she can barely get out of bed and she mostly sleeps all day. I'm not sure she's drinking nearly enough, although when I'm able to be with her on th weekends or evenings she makes a big show of downing lots of Gatorade. My dad, her primary caretaker, is hesitant to push her to do anything she doesn't want to/refuses to do. Every time I talk to her on the phone she sounds like a wreck, and when I called her oncologist on Tuesday in despair, she recommended that my mom come in for rehydration and an assessment of her condition, and mentioned that maybe her mouth/throat problems are the result of toxicity from the chemo. My mom made excuses that she was feeling better and didn't need the hospital on Tuesday, and then yesterday she was apparently a wreck again and was considering going to the hospital today. But this morning she's saying again that she's better and doesn't need to go to the hospital after all. Even though I'm 29 years old my parents both still mostly regard me as a child who needs to be "protected" and or can't be taken too seriously when I give advice. My mom is used to being very assertive, even to the point of being domineering at times, and even now she's not about to take orders from anyone, except sometimes her doctors.

I have begged, I have pleaded, I have used emotional blackmail, I've sent my husband to help my mom, I've taken charge of the cat's medical care to give my parents one less thing to worry about (on top of everything else my mom's beloved cat apparently has bladder stone issues). NOTHING is working. I know my parents are "adults" who ultimately are resonsible for themselves, but when they're not doing the responsible thing, what else can I do to get them to go to the hospital or call the doctor or eat/drink more or...ANYTHING?

Lovekitties's picture
Lovekitties
Posts: 3099
Joined: Jan 2010

You are definately in a tough situation, and it seems like you have done all you can do.

Unfortunately, you cannot make your mother do what she doesn't want to do.

You can only tell her and your father that without adequate nutrition and hydration she will not be able to continue treatments (which is true) and that she will only get worse. 

You might also be very blunt with them about your concerns and remind them you are very upset about the situation.

It may be that they have made some decisions that they need to share with you.

Wishing you and them the best,

Marie who loves kitties

Nana b's picture
Nana b
Posts: 3048
Joined: May 2009

Sorry you are going through this, short of picking her up and taking her, not much you can do.  She isn't fighting and that of course is not good.  They can work with the meds, but she needs to go in. She may ot even be able to make her own decsions, once you stop eating and drinking for a long time, your mind does strange things. 

 

fatbob2010's picture
fatbob2010
Posts: 466
Joined: May 2012

I agree with Nana. Once one stops hydrating and nourishing the body the mind can do odd things.  

You may have to be  a little more asertive with her as you expain your concerns.  

Big help if her husband on your side of the argument.

Helen321's picture
Helen321
Posts: 1051
Joined: May 2012

Personally, my mom doesn't have to like it.  I'm picking her up under false pretenses and bringing her to the ER and telling them that dehydration has her confused and she is not caring for herself.  She'll get over it if you have a good relationship.  I'd be mad as hell that my kids did it but they're my kids and I'd get over it.  The alternative is death.  I think mad wins.  How old are your parents?  You need to tell your dad it's time to act, period.  He's probably just used to your mom running the show.  My family is.

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

It's really a great source of comfort to me to know that I can come to this forum for advice and sympathy with my mom's condition.

My mother has always run the show, Helen. I think that's why this is so hard for all of us, especially my dad. As the primary caregiver he's exhausted physically, but emotionally this is beyond anything he ever imagined; their whole married life, it was my mom attending to and taking care of him and all his needs. He has never taken care of ANYONE like he is doing with my mom now, not even himself, so he's been pretty out of it too. I begged him to take her to the hospital too, but whether out of deference to her wishes or just his own limits, he wasn't going for it. 

My fear is that maybe Marie is right, that they have had serious, consequential conversations that I have not been privy too. Perhaps not even aloud, but an unspoken understanding. I'm going to be honest; it kills me to see my mom suffer, and whenever she is the way she is right now, I know that she is only hanging on and fighting for my father, my brother and me. I know this because she told me herself. But I also know that she is fighting most for me, because no one else loves her as fiercely as I do, as I always have. It will hurt more than anything else I'll ever experience to lose her. But I'm afraid too to make her feel she has to suffer more and longer for my sake. It's a fragile line. She claims that she was feeling a lot better and drinking more today...but still no food. Even if she really is drinking enough (not that my parents would tell me the truth if she wasn't) the lack of nutrients still troubles me.

LindaK.
Posts: 417
Joined: Apr 2013

I can give you a little perspective from "the other side"  My husband has stage IV colon cancer which is now in his lymph nodes.  Our daughter is a nurse and is very close to her dad.  They speak several times a day on the phone.  Sometimes I hear these conversations and sometimes I don't.  My husband tends to become a sick child when he's talking to her, almost moaning and whining on the phone.  I look at him like "Where is this coming from?"  I go to all his appointments, chemo, keeps his meds straight, follow up with doctors, keep the notebook, etc.  I am on top of his care and keep a close eye on him.  While we are all concerned with giving him the best care possible, sometimes I feel she oversteps her bounds.  She has accused me of giving him a "fatty" meal like baked ham, potatoes and carrots (with no butter) and then she brings him Burger King.  He is also a diabetic and one evening (After I went to bed) he messed up his insulin with his bedtime dose.  He called her since she was working nights.  The next day she said to me "You need to keep a better eye on him" as if I was ignoring his needs.  I have been able to brush these comments off as just her way of concern about his care.  Sometimes my husband is his own worst enemy, he will not drink or take certain pills unless I hand them to him.  He will complain all day while I'm at work, but won't take anything until I get home and his pain or nausea is very bad.  I cannot force him to do things and I cannot be there with him all the time.  He has also made hurtful comments to me when I do get on his case about drinking, eating, meds.  so you see, I also feel like I can't win.  In the end, the patient is in control of his care and we as caregivers can only do so much.  I think you have good friends who are telling you to prepare for the worst, because that is reality.  I do not like it either, but it's better to prepare than fall apart when you need to be the strongest.  I have told the doctors and nurses things he doesn't like me saying, but it's in his best interest.  He tends to listen to them more than me or our daughter. 

I think you should just show and verbalize your support and care and let your parents take it from there.  My husband and I have had difficult conversations, but they are between a husband and wife.  Like you said, your parents may have had the same.  All you can do is tell your mom how much you love her and that you want to help her, she will hopefully let you.  Best wishes

Linda

Steph19877
Posts: 20
Joined: Jun 2014

I am in the same situation as you aKroger with my mum. She's refusing to eat saying she feels too sick she's been in twice on drips because she won't drink... My dad is struggling also as he's never seen her so ill and he's breaking down. I have found being stern with my mum has worked. I say to her "if you don't eat and drink u will die, think of your grandchildren" we've had numerous rows about it, she's lost a stone in weight in a couple of weeks. She's now fully admitted in hospital since last night where she's so weak so you just need to stress to your mum that she has to break through that barrier and drink or she's goes in on a drip. 

Nana b's picture
Nana b
Posts: 3048
Joined: May 2009

Maybe hospice can help...  At least get some fluid in her.  

Annabelle41415's picture
Annabelle41415
Posts: 4534
Joined: Feb 2009

You are such in a difficult situation and although you want to help, you sometimes are just not going to get anywhere.  You sound like a lovely daughter just trying to help but if she and dad won't let you, it's going to be a no win situation.  I'm hoping that they give somewhere and maybe talking to her will help.  Please get help as you can't do it alone.  Hope she listens to you if you keep trying.

Kim

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

I'm sorry I couldn't get to the boards sooner, this has been a crazy weekend with my mom, and we're hoping to get her in to see her oncologist tomorrow to deal with her lack of nutrition as well as her symptoms. It turns out it's almost definitely oral thrush that she's suffering from; the way she described it, never mentioning anything about the whiteness or white cheesy-looking coating, I just thought they were mouth sores/ulcers! I had no idea, and I wish she'd been clearer sooner so that maybe her doctor could have provided something to help her next week. She has at least stayed very hydrated on a lot of water and Gatorade. Yesterday and today when I visited Imade her juice of canataloupe and watermelon and she was able to drink those too, but otherwise she's very weak. I hope I'll have better news to report tomorrow. Thanks for all of your concern and advice through this, it's been really unpleasant and will hopefully be resolved soon.

Trubrit's picture
Trubrit
Posts: 2024
Joined: Jan 2013

I had oral Thursh throughout treatment. It completly destroyed my sense of tast for that time. 

Sadly, one year out from treatment, my tongue is still white and the back it coated with a thick film. It looks bad, but I can taste my food and the Doctor's don't seem to be overly concerned. 

I was on two seperate meds, both of which worked briefly. 

Good luck in getting your mum treated, and hopefully, when they get it under control, her appittie will return. 

LOUSWIFT
Posts: 372
Joined: Aug 2006

I have been ill on and off for the last 11 years with cancer; diabetes; cirrhosis; pain ; cronic diarrehia; and for get walking beyond 30 yards or uses stairs. My kids who love their Dad and grand dad have tried to manage my situation(s). There are many times I wish I had died being as sick as I was and am or had the courage to take what is left of my life. I know they think they understand my medical problems and what I have had to endure to become what is left of what I was once. Love doesn't give them the right to decide what is best for me. There were times when chemo made me so sick that I slept on the toilet at night with a bucket in my lap not knowing which edifice would cause me the greatest pain. I don't want to offend you and I have no doubt you love and want to protect your mom as she did you. But recognize she has prepared you to be the person you have become and you must respect her deicisions even when you disagree. I know my family thought they were doing what was best for me but it was not. Sure I'm still alive but there is a thing called quality of life. I have severe nerve pain in my legs so bad that I must take powerful pain pills. Not only did the chemo damage my nerves in my legs; feet; and hands it also damged my liver giving me chemo-induced cirrhosis; damage to my pancreas which has deteriorated makng me a diabetic; My kidneys were also damaged but they have somewhat recovered and although they may fail. Oh and the benefit of two different chemo treatments for months and years apart were NONE. The cancer spread from my rectum to my colon then to my liver. My feet have had to have two toes ambutated due to infection from injuries to my feet that I did not know existed. I can't feel most of my feet. The greatest outcome from the chemo/surgery resulted in a lost of so much colon that I am teathered to a toilet. Adult diapers and every possible prescription for the chronic diarrehia. Nothng works and I hope you can imagine being a prisoner of your own problems. I can't go to parties; grand kid events; family get-togethers; time with friends; ball games; have a job; the list continues. There is no stopping it and sometimes I never know it has occurred until the ordor alerts me and everyone around me. I'm not saying your mom wants to die; or it isn't possible dehyration has effected her decisions but I am saying if she decides to be with God that is her decision. I'm not even sure there is a God with what good people have had to endure and the little ones....I was a cop for 30 years and my faith was tested all the time. I'm sick of always being sick and not being able to enjoy life. The good news for me is I have two leisons on my liver again. One oncolongist thinks cancer one thinks no cancer. I am going to do nothing if it's cancer. I've learned over the years and the never ending suply of doctors is not to trust them. My kids and grandkids will in time understand. I know "you're giving up being a quitter". Maybe but this decision will be for me and mabe for the first time in almost 12 years believing in God and Heaven maybe I'm due a chance to feel well again. Don't forget what your mom is fighting and the cost to her. you must balance if it is worth it. Forgive my rudness developed through experience. Take Care God Bless Lou swift

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

I appreciate your honesty. I don't come to this forum for the reassurance that "it's going to be ok," because it isn't, and I want the honesty and information to figure out how best to handle things, literally and figuratively. I am so deeply sorry for the distress and suffering that you are going through. I will be blunt; I wouldn't be trying to prolong my mother's life with the goal of getting her to a state where she is contstantly ailing and miserable. I don't believe she has anything anywhere close to 11 years left, but whatever time she does have I want to be supportive of.

Up to this point at least, she has resolved to fight as much as she can, and I am trying to support her as best I can for that. Sometimes that means fussing over her and taking her to her doctors and coaxing her to do what's best for her health, because she is the kind of person who needs that reassurance, that pushing, to be convinced to do what is best for herself. She never took care of her health before her diagnosis, and even now she isn't in the habit of clearly communicating what she needs or what she is feeling, so it's often hand-pulling as much as it is hand-holding. That was exactly how she was with me when she was raising me, and sometimes tries to be still. If she makes it clear that she can't fight anymore, or if her doctors are skeptical about the ability of her body to weather through much more impact from the chemo, I will be griefstricken, but I will not try to fight this kind of decision. What I refuse to do is to let her just waste away because she is being too stubborn to listen to reason (my mom showed that kind of behavior well before she ever got sick too). In the past few months she has had some really good days, and I'm not convinced that she doesn't have even more good days ahead of her. For that I will fight as much as I can. That's a promise I made to her that I can't break.

Trubrit's picture
Trubrit
Posts: 2024
Joined: Jan 2013

I don't want to hijack this thread, but I do want to send you a cyber hug.  I too will not fight beyond my ability, though I certainly feel I don't 'deserve' death. 

I think your post would make for a very informative thread. 

Blessings!

SUE/TRU

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