caring for elderly mother - finished chemo and radiation but...

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tkrokz
tkrokz Member Posts: 8
edited June 2014 in Caring for Someone with Breast cancer

she is having excruciating pain in her side and back. I had to take off work again last Tuesday to get her to the ER because she wouldn't call 911 before I got there.

ER Dr. on Tuesday, primary doctor on Wednesday, Chemo Dr on Thursday - was taking care of her all weekend again and still no better on the pain, saw her radiation dr yesterday and no explanation on what is causing the pain.

She was declared cancer free from triple negative BC 3 weeks ago,

I have been reading on here about chostocondritis, but the radiologist ruled that out - help! I need information before i go completely crazy. it has been such a long and hard year getting her through this but i am afraid i am teetering on the edge of total burn out and exhaustion.

thanks in advance

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2013

    We're so sorry for you and your mom! It sounds like she needs even another opinion. Maybe start with her internist?

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  • tkrokz
    tkrokz Member Posts: 8
    edited May 2013

    we are trying to find out - calling her drs again this morning to see if they have looked at the latest  xrays and ct scans from last week.

    I got home exhausted from work yesterday, I called to check in on her to see if she needed me to come by again, she said no, but now she is coughing up a lot of foamy white phlegm, the ER said they ruled out pneumonia, but now i am not so sure.

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  • Margi1959
    Margi1959 Member Posts: 178
    edited May 2013

    get her in for a bone scan FAST.  That's what led us to find out that my mom had Stage IV, pain in her ribs!

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  • tkrokz
    tkrokz Member Posts: 8
    edited May 2013

    after much barking at her doctors, I got her an appointment with the oncologist on Monday morning. I was hoping for today, but they leave at 2pm on Fridays. Frown It's gonna be a long hard weekend again. Hopefully we can have some answers on Monday.

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  • tkrokz
    tkrokz Member Posts: 8
    edited June 2013

    Just an update - the Friday I posted the above marked a bad weekend. Mom started having falling episodes again Saturday night/Sunday morning - fell on the way to the bedroom and hit her head on the dresser, then again once she made it to the bathroom. She didn't have the strength to get herself up on the toilet and messed her self. I only found out about it after I insisted on coming over after a morning phone call check and her not sounding "right". I got over there and found the mess in the bathroom. So another Sunday of cleaning her bedroom/bathroom, sitting with her to make sure she is ok. After I made her dinner, I went home to go to bed to go to work the next morning. Got a phone call at 3:30am from her, she had fallen again. Grab what ever clean clothes from the laundry basket, baseball cap and out the door. Found her barley in bed, blood all over her pajama top, her nose was busted and a couple of goose eggs on her head. Blood on the floor where she fell.

    I took her to the ER after talking to the on call PA at her oncologist office ( I had been on the phone daily with the a$$hole trying to convince them this was more than a side effect) and finally convinced him that she needed to go to the hospital NOW. I got her there and they started in with the questions. Long story short, after the xrays, CT scans and another MRI, they thought she had a broken neck and arranged for transport to another hospital that had a spine and neck specialist. Thankfully it was just a severely sprained neck, BUT....

    Fluid in the lungs, fluid around the heart, enlarged heart, and atrial fib heart beat - Congestive Heart Failure from one of the chemo's she received.

    The cardiologist finally got it under control - there was a couple of nights I didn't think she was going to make it, and now has her fitted with a defibrulator vest and she was discharged to a rehab center. She has been there 2 weeks as of tomorrow. She is getting a little better, but is now being stubborn about doing Physical Therapy and is complaining about her muscles hurting from the work outs.

    I have to keep telling her that if she doesn't show improvement the insurance company won't continue to pay for the rehab.

    I know she is depressed, she won't eat in the dining room with the other people, she stays in her room and watches tv and sleeps except for PT.

    I am at the end of my rope. I feel I am running on empty again.

    Thanks for letting me vent.

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  • meghar
    meghar Member Posts: 38
    edited June 2013

    Hi Tkrokz

    Its a roller coaster. I might have missed it, but I was wondering how old is your mother? I am taking care of my 86 year old mom who has breast cancer that spread to the ribs/spine.  Will get an update on her status tomorrow.

    Can you bring a wheelchair to the rehab and will they allow you to take her out into the outdoors, fresh air? Changing the scenery can help. Even different hallways.  I found that bringing a "normal" blanket and some other household mundane things to the rehab center was helpful when my Dad was in there. In fact I have brought the "normal" blanket (a NEW throw size, cheerful fleece or cotton, so it won't hit the floor) to a couple of rehab patients and they really liked it. Makes you feel normal, human, not just a patient. Also an audio book on tape can "transport" a person to another place and help elevate the mood better than television.  It is kind of passive if you just put earphones on, so even a reluctant listener might get pulled in. If the other people in the dining room are in bad shape, it might be too depressing for her -- it can be hard. My mom did well in rehab after she started going to the "lounge" at night and chatting with the staff more than other patients. Everyone is different. You said she is getting a little better - I will keep her and you in my prayers.  

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  • tkrokz
    tkrokz Member Posts: 8
    edited June 2013

    Hi Meghar, thanks for the encouraging words. Mom is 75.

    I have tried to get her to let us (me and her friends) take her to the recreation room to eat lunch/play cards/watch a movie etc. She doesn't want to do it. She has her iphone so she can text me and her friends. I loaded netflix on it so she can watch a movie or a tv show. Going outside is not an option here as we live in Phoenix, AZ and the temps are in the 110+ range right now.

    Another litle fun fact I found out is that the staff was only giving her half of the prescribed heart meds and she started having chest pains and her resting rate skyrocketed. The staff called her cardiologist and told him what was going on and that is how he discovered the weren't administering the correct dose.

    she has blankets and such from home. I bought her some new tshirts to hopefully get her to get dressed and not live in pajamas like she has for the last year.

    I'm just so tired.....

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  • tkrokz
    tkrokz Member Posts: 8
    edited July 2013

    Update,

    wow has another month been lost?

    Mom was released from rehab on June 29th. Got her home and settled, she was doing great. Set up her follow up appointments for doctors etc.

    I was absolutely exhaused by July 3rd and slept almost 20 hours. I missed my friend's 4th of July party, I slept the entire day. When I finally awoke I did the usual, check the phones for calls/texts - nothing. Gave mom a phone call check in, no answer, called the cell, no answer, texted no response. I was ready to jump in the truck and head over there when she finally responded to the text. Said she was tired and didn't feel right. Said she was ok and was going to take a nap.

    I made dinner and went back to bed to go to work the next day, and had to leave work again because she was having chest pains. I told her to call the cardiologist and he wanted her back at the ER. Off we went.

    They wanted to do a cat scan but her blood tests showed her kidneys were shutting down, and was admitted to the hospital. Heart meds were causing the kidneys to start shutting down, kidneys shutting down caused a hormone used to tell the bone marrow to make new red blood cells not to work, which then turned her anemic again. Blood transfusions, iron infusions, magnesium infusions,  lasix on and on and on.

    My friend and I busted our butts Saturday and Sunday picking up around the house, fixing patio doors and screens, grocery shopping, cleaning out pantrys, cooking food etc.

    I am really hoping she will start to recover from all the damage the chemo has caused. Seems if the cancer doesn't take you down, the cure will.

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited July 2013

    I am so sad for both you and your Mom. I can relate to her because I'm 77 and also to you because I went thru a lot with my Mom before she passed away.

    I had no idea chemo could damage the heart.  Luckily I didn't need it, but if I ever do I think I'll pass. All these issues your Mom has sound very frightening.

    Sending positive thoughts and prayers to you both.

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  • tkrokz
    tkrokz Member Posts: 8
    edited July 2013

    Update, mom got home from the hospital on July 19th and all was well until  Wednesday the 24. She decided not to eat and was noticibly weaker. Thursday I had to leave work again and take her to her primary who said she was fine and just take deep breaths bla bla bla. I got a phone call Friday morning at 4:30 am, she couldn't breathe. Off I went, my friend that flew out got her to the couch to sit up straight, but that wasn't helping.

    Had to call 911 again, so she is back in the hospital again with fluid in her chest cavity.

    i just don't know what to do anymore, every other week this happens.

    :(

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited July 2013

    Have you considered assisted living? What about an emergency call button she can use if she falls.



    Whatever way you can spread the work you should. Are your eligible for FMLA at work? That might help keep your job secure.



    The reality of caring for an elderly parent is that we just can't do it all. after 3 years of tending to my mothers needs(she is 88)she is now in assisted living near my brother. She didnt like it but it was our only solution.

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  • tkrokz
    tkrokz Member Posts: 8
    edited July 2013

    Hi Chickadee, I have been looking into assisted living and I have the emergency ADT fall button ordered for her. Unfortunately, my brother and dad are dead and it is only me. Her one brother died 2 years ago and the other is a POS who would rob her blind if I allowed him to move in with her.

    I work for a small company so no FMLA for me :(  Good or bad there hasn't been that much work in house at my job the last few weeks, but my busy time is approching with books, programs and other publications so I have to figure something out soon.

    My friend that flew out to help me for a few weeks will probably be leaving in a couple of more weeks, so I'll have to find another solution.

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited July 2013

    We had to put my Mom into Assisted Living because the part-time caregiver that her insuran ce sent was ordered to take out the thrash and do other housekeeping chores so she quit. I don't blame her. Then another caregiver told us it was not safe to leave my Mom alone during the day. Since we both worked full-time we had no choice.

    She was furious at first, but got to like it there and lived for another year.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    I believe you need a higher level of care than assisted living. Assisted living is basically for well people who just need a little help. They are not intended to deal with intensive medical needs and won't accept people who have them.



    You should ask to talk to a social worker at the hospital. They can assist with situations like your mom's.

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