Why is my mom in so much pain/weak?

maccupiccu

I dont' know what's going on with her since her labs minus the increased acid in her bone cancer, are showing ok.

 She was released from the hospital the first week of Feb for severe pneumonia and has been off of chemo/zometa for almost 2 months now. She said her muscles/back (where she has 4 tumors in her spine) hurt so bad and she's so weak she can't get out of the bed.

 Her oncologist said labs look stable/fine and just take some Tylenol. I just think this is more than a Tylenol thing.

 Why is she so weak in pain? Doc won't even talk about hospice since nothing has advanced.

Kaara

If she is recovering from pneumonia and was coughing a lot, that can cause pain in the back muscles where she was straining to cough.  Also, pneumonia does make you weak.  How is her appetite?  If she isn't eating well, make sure she is getting a nutritious drink three times daily like Ensure, or she won't get her strength back.  Probably a good idea for her to try and walk around the house three or four times a day to slowly get back her strength.  She's also probably depressed, because this kind of illness on top of cancer can be quite traumatic.  I've been getting over a little flu bug, and believe me, I'm not nearly as tolerant as I would have been before bc.

If you have a nice blender, make her some veggie and fruit smoothies with protein powder.  That reallly helps to build energy quickly.  I have one every morning and it works.

Hope this helps.  Sending you prayers and hugs!  You're a good daughter to worry about our Mom so much! 

maccupiccu

She is lactose intolerant, hardly eats (I can barely get her to drink the Gatorade), has sever diarrhea (living on Immodium). She said she tries to walk around but they feel like lead weights so she doesn't.

 Thanks for the tips. I just worry so much that this isn't a pneumonia recovery but things being worse. She's definately depressed.

JustJudi

I know when I had a severe case of the flu last year that coughing caused a lot of pain in my ribs and spine, even now if I cough I try and hold myself rigid so I don,t jerk my spine, I am stable and have been for two years but I have pain twenty-four hours a day, because the cancer was heavily involved in the spine.  Your mother may take a while to recover her strength, she is not going to bounce back as fast as you think she should.  Let her ease back into walking around the house, even if it is to walk from the bedroom to the coach. She should be using a good pain control medication to help her with the back pain, because when pain gets out of hand, it can also cause depression, and who wants to move when it causes pain.  The doctor should be offering her pain control, tylenol sometimes does not do it, so speak to him.,  But tell her things will get better, but she needs to have time to recover.   Judi

maccupiccu

She keeps asking me when is she going to feel better. She won't take the "it takes time" route. The oncologist won't prescribe her meds beyong Tylenol.

I'm just so tired of this.

Kaara

maccupaccu:  I can't stress enough how important it is to get nutrients into your mother, or she is going to become so malnourished that she will not be able to recover and live any kind of QOL.  This happened to a friend of mine who was taking chemo.  She wouldn't eat and she got weaker and weaker until there was nothing more they could do for her.  If you can't get food or nourishment into her, then see if she can get a feeding tube until she gets her strength and appetite back.  I suggested the smoothies and juicing because they can be tolerated very well, particularly the juices.  Smoothies can be made with almond milk which has no lactose.  Get an appointment with a nutritionist to go over this with her, and get a diet plan.  The cancer center or hospital should have one.

Even though your mother has mets, it sounds like she is stable which is why she is off the chemo.  

Allowing your mother to make the decisions regarding her QOL right now will not work, because she will take the path of least resistance if she is in pain and depressed.  I agree with JustJudi...get her some stronger pain meds, so she can begin her journey to recovery.  If her MO doesn't agree, then it is time to get a second opinion.

This is a tough challenge...we're here for you if you need help and comfort. 

ma111

Pneumonia takes a while to get over, especially when the body was weakened by chemo.

MJLToday

Maccu you mom needs some more supportive care not just oncology care.  I agree, talk with a nutritionist, a different oncologist, oncology nurse or social worker, palliative care specialist (not necessarily a hospice person), something to help her get her strength back.  She's not just a cancer patient, she is a whole person who needs to be wholly treated. 

learnin

Re severe diarrhea - I assume she was on antibiotics with the pneumonia. Can put a person at risk of a bowel infection called C. Difficille. If her stool are watery, she should have stool samples checked for that if not already done.

I hope one of the many good suggestions you are receiving helps

33skidoo

If your mother says she is in pain, her doctor should believe her.  If she isn't taking anything for her pain it is probably reasonable to try tylenol or an NSAID first and if those don't do the trick to ask for something stronger.  If her doctor won't listen find another one.

3monstmama

miccupiccu

I'm sorry about your mom.  I agree with 33skiddo--if your mom's doctor isn't listening then perhaps he needs replacing.

My mother is Stage IV with ovarian cancer and actively in chemo.  Like your mother, she feels like hell and wonders when she will feel better.  She is not in a lot of pain but she does have some mega depression issues.  She has ended up in hospital twice and both times was released to skilled nursing for a chunk of time.  She did much better at skilled nursing than she did on her own--while she wouldn't drink enough or move enough on her own, she would do what they told her in skilled nursing.  On liquid we have gotten her the nuun tablets to flavor her water and that has helped keep her drinking.  She did not like gatorade because between chemo and age, it tasted too sweet.

The other problem we have faced is depression.  Can you get your mom in to see a therapist who specializes in oncology?  They can prescribe antidepressants for your mom and boy have we found those to be helpful.

On the eatting part, my mom has lost about 20 pounds since she started chemo.  On the bright side, At the time she was diagnosied she was actually a bit overweight so the weight loss hasn't hurt her.  We are buying her ensure for when she just doesn't feel like eatting.  If your mom doesn't like ensure try different brands.  Apparently the flavors are pretty different and some people like one brand more than another.  The skilled nursing place where my mother was had a different type which was just not working for my mom so we bought the ensure ourselves.

Good luck.  Hope she improves.

CoolBreeze

If your mom has severe diarrhea she could have c-diff.  This is a bowel infection that can lead to sepsis and possibly losing her bowel.  I know because I had it and I spent a long time in the hospital because of it.  I came withiin an inch of them removing my intestine and I almost died.  C-Diff has a bad smell to it, so if she's got an abnormal smell to her diarrhea, she should get a stool test immediately, or better yet, bebtaken to the ER.  Even if she doesn't have an abnormal smell, it needs to be checked for c-diff.

C-diff can cause loss of appetite and weight loss, as can mets to the liver.  The dehydration can cause an irregular heartbeat and her blood pressure can drop to dangerous levels.   

As for the pain, she needs another oncologist.  I have body pain and back pain and I am on oxycontin and dialaudid.  There is no reason why tylenol should be the only drug prescribed to a Stage IV cancer patient - it is simply not strong enough.  She is not getting good care which I think you know.   Get her to sign medical power of attorney to you and then get cracking to find somebody who will treat her properly.

Edit: I want to add that if she does have C-Diff, one of the worst things she can do is take immodium.  She should stop that immediately until she gets a stool test.  That can slow down the bowel so much that the toxins overrun it.  She can have pepto bismol. 

scoutmm56

I was in huge unrelenting pain and the palliative care nurse said it was probably because I had switched from ibuprofen to tylenol.  I switched back to the ibuprofen with almost instant relief.  She said if the pain was coming from my bones I probably needed the anti-inflammatory that was in the ibuprofen. 

maccupiccu

She's negative for c-diff. We had her tested. She has pre-existing IBS/colitis so she's always had issues but the chemo and pneumonia meds just tore her up.

 I'm seeing her this week. I'm getting so worn out/depressed myself going through all of this that I'm barely hanging on. Being an adult just sucks.

 For antidepressants/talking with someone, she won't. 1) she reads the fair balance packet inserts and freaks out about side effects of all drugs 2) she believes that they make you "nuts" and suicidal (um...mom, you're already suicidal) 3) she was give xanax, she refused to take them 4) she thinks that she'll wind up in "the nut house" if she talks with someone. I let it all hang out at the hospital talking with social workers/docs. She was beyond angry at me for mentioning how she feels and her relationship with my father (highly abusive). She asks for help and then doesn't take the options people are offering her.

steelrose

This is so difficult for both you and your Mom. It sounds like she's completely overwhelmed and depressed about all of the health issues combined. It's mental as much as it is physical. Is she still on Zometa? If the oncologist stopped this treatment, I would ask why. I've had Zometa, and now Xgeva, for my bones ever since my diagnosis two years ago. It protects the bones and may help with her pain.

Re. nutrition... My Dad had cancer and had trouble with this too. He took Ensure for a long time and it seemed to give him the boost he needed. As others have said, smoothies and shakes are well tolerated... the lack of nutrients is affecting her mental state too!

I'm sorry that your Mom doesn't feel comfortable talking to someone about her problems. It's amazing how much relief comes from opening up. Is there anyone that she trusts besides you? The anti-depressants should help... maybe a doctor could convince her that it's mandatory?

I hope you are taking care of yourself as best you can during this. I went through it myself with my Dad and I agree, being an adult SUCKS.

Love to you...

Rose. 

scuttlers

I am sorry about your Mom, as are many who have tried to give you suggestions.  Each suggestion has come back with excuses as to why you have tried it already, or Mom won't do it, etc.  Which is making me wonder if you are just needing some support for yourself.  

For Caregivers, Family, Friends and Supporters

Here is a place to share your struggles on supporting and caring for a person you love, whether just diagnosed, or in end stage. It is never easy, but you are not alone.   http://community.breastcancer.org/forum/16

Take care of yourself and your family.  Best wishes to ALL. 

Kaara

Do you have a Power of Attorney to take care of her health needs in case she can no longer make those decsions?  If not, you need one, because she will soon be reaching that point if she doesn't make some positive decisions to help herself get better.  It is tough to be an adult, and I'm so sorry that your initiation came in such a tragic way and so personal.  Please, as scuttlers above said, get some help and support for yourself, and from that you will gain strength to make the right decisions regarding your Mom.

Prayers and hugs! 

maccupiccu

Thanks. Not sure what I"m looking for. All I know is that the woman is in pain, I'm trying everything to help her, and she's not taking any of it. So now what?

Kaara

You say you have a father...what is his take on this?  I would hope that he is taking some responsibility for her health choices.  You shouldn't have to go this all on your own.  If you've done all you can, and she still won't respond, then you just have to let go and let God.  This is why someone needs to have a Power of Attorney for her health choices...if she keeps going downhill, she will reach a point where she can no longer make decisions and someone will need to make them for her.  It would be good to have that in place, and maybe it already is and can be exercised at the appropriate time.

Keep the faith! 

3monstmama

maccupiccu  I'm so sorry.  As  a daughter I know how hard this is.  f she doesn't want help and won't do what needs to be done, then regretably you can't really do anything.  Time to take care of you.

Since her diagnosis at Thanksgiving, my mother is floating down the river of D'Nile.  She says she has no thoughts whatsoever about her stage IV ovarian cancer.  Not a one.  In fact anytime anyone mentions it, she comes up with millions of health issues that she believes are the real problem, from hypoglycima to IGA.

I have tried to get her to talk--to me, to a social worker, to a support group. No luck.  Because of course, she has no thoughts.  Yet she is not stopping the chemo (onco has her on lowest dose and gave her the option)

Finally I am coming to accept that there is nothing I can do if she doesn't want to do anything. It is her decision.

I would encourage you to find some support for yourself.  Personally I have gone back to the therapist I saw during my treatment.  It helps a lot.

maccupiccu

Thank you everyone and sorry if I sounded defensive.

Here is the bottom line of the issue. She's been abused by my dad for 50 years and now that she's sick, it's getting bad. He refuses to take her to the doctor. He refuses to help her unless he has a say and yell/force her to do things. She's miserable. He can't take her stubborness and anger (gee, wonder why she's angry). But I will admit knowing her, she can be an extremely difficult person. So I'm in the middle of this domestic AND cancer AND heart issue (my dad's) where I"m either playing medical triage for the both of them, therapist for the both of them, police for the both of them (stepping in and telling my dad to lay off of her), all while trying to stay sane and even protect myself through this. I had a very abusive upbringing leaving home as an adult to the point of not speaking to them for 3 years when I was younger (in my 20s, I'm 40 now) was the only way to deal. Now that they are sick and I will admit they did do a lot for me (pay for school, etc). I feel obligated to help them but at the same time, I'm being dragged into this cycle toxicity.

I have a husband, a job, and a three year old to talke care of and I"m trying to maintain that life as happy as can be. I dread every call with them (there, I said it) but they are also human so I feel horrible that they are going through this all while being so utterly crappy to each other.

 I agree I should take on therapy but honestly, I'm therapied out. I dealt with therapists so long for other life issues/past childhood things that I"m just done.

I just need to manage a way to keep them at a distance while caring and doing the best I can all at the same time detaching because this is getting to be too much on me. I can't fix 50 years of THEIR marriage problems. I can't be the husband, daughter, wife, doctor, police, therapist, driver, bill payer to my parents. It's just hard when you feel guilty/obligated as well as empathetic because in the end, these are two old people who are just scared of being old/dying and dealing with crappy illnesses.

 It just sucks, ya know?

Kaara

It does suck and I can see why you can't rely on your father for help.  He would be useless.  Maybe your mother would be better off in an assisted living facility until she can care for herself again.  Are there social workers out there that you can talk to about this?  Does she have an long term care for something like that?

I don't see that you can do much more than you've already done with regard to trying to help.  If help is refused, you must take the next step or back off completely.  

So sorry for the situation you are in. 

CoolBreeze

I'm sorry if this sounds rude, and I am sorry for you, but what do you want us to do about this situation?  

You are posting this in the Stage IV section, where every one of us is dealing with our own illness and impending death.  We've given you advice, all of which you have turned away as undoable, and now you are just complaining about something unfixable.

I'm genuinely curious - why do you think that we are the ones who you should unload your family problems on?  

Don't you think we have enough to deal with?

When a family member is asking a question about health and treatment for their Stage IV family member, as happened at the beginning, it makes some sense to post here with questions.  But, when it devolves into complaining about dysfunctional relationships and problems with somebody's life that are completely unsolvable, (as it has in three threads)  in my mind, it ends up being insensitive to us. We are the dying ones here. 

Do we have nowhere to go where WE can be the supported ones?

You already have a thread in the caregivers section, so you know it exists.  There is also a section called "Relationships, Emotional Crises, Anxiety, and Depression" that might be the best place for you.

I'm just trying to figure out why so many people think this is the place to go to get emotional help with their sick family member, as it seems like lately half the threads here have been questions from family or friends asking us to support and help them.  Why not ask your Stage IV family member the questions you are asking us instead? If one can say to us "how can I support my friend" why the heck can't they say that to their actual friend?

I don't mind helping people, in fact, I have 2,000 posts that are mostly helping others or at least trying to give helpful advice and responding to questions.  And, I know people make errors and post incorrectly.  Sure seems to me like it's taking over this forum though.  

Maybe I'm channelling ElaineD or maybe I'm just a complete bitch or maybe I'm more upset about my bad scan than I thought -  but it seems like in this one little corner of the internet, this should be the place that WE can come for help and support and maybe a little fun without hearing how hard it is for somebody else. 

/flamesuit donned 

And I really AM sorry for the OP but honey, nobody can change your family.  So, do what you can and forget the rest.   

Frankly, I'm just drained.   

Kaara

CoolBreeze:  I'm so sorry to hear that you had a bad scan today and my heart goes out to you.  Please try and get some rest tonight so you will be in a better position to deal with this latest challenge tomorrow.

Mine is certainly nowhere near as serious, but I learned today that in addition to my bc, my macular degeneration is advancing quickly and I have to get treatment or face going blind.  Not happy, but it is what it is, and all I can do is move forward.  That's all any of us can do.

Sending you prayers and positive energy! 

CoolBreeze

You know, I always worried about getting macular degeneration as I got older.  I love to read so much.  I guess that's one good thing about having a terminal illness at a young age, I won't have to worry about loss of eyesight. 

Don't worry, my scan results were yesterday and I slept well.  

Sorry you are experiencing eye problems, it must be difficult for you. 

steelrose

maccupiccu...

I do think the problem with your Mom would best be addressed by a social worker who could perhaps help you sort through this very complicated situation. You need an outside party to intervene because the problem is not just the Stage IV cancer but some serious abuse issues. Wishing you and your family the best...

Rose.

scuttlers

Thank you Coolbreeze for putting into words what my thoughts have been. And exactly what I was trying to get across to the OP in an earlier post on this thread. This is not the place (meaning Stage IV forum) to get the help she needs. We have enough to deal with! We are NOT therapists. We are trying to live day to day with our own terminal issues.

maccupiccu

My apologies for causing problems on the board. It was not meant that way. Good luck on your journey.

K-Lo

How consistent is this policy of helping /not helping caregivers?

Chickadee

Like I suggested on the other thread, Adult Protective Services could be useful here. If only to ensure her access to medical care b

scuttlers

K Lo, it isn't a "policy" of not helping caregivers. If you read the entire thread, you should be able to tell the OP is not seeking help with the care for her mother. She is seeking help with herself dealing with this situation. (all suggestions to help her mother have been negated by the OP).



How can WE help the caregiver with her own frustrations/emotions? We barely can help our own caregivers understand what we are going through. (that is why we come to the boards - to communicate with those who DO understand what we are going through).



A caregiver who is honestly seeking help with PROVIDING care to the loved one is always welcome! And many have become very supportive and very loved members of this group. (You all know who you are.). Those caregivers have benefited because they were looking for help to specific issues and they were willing to utilize suggestions in their care.