My Mom and what I should/can do.

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chipdog3
chipdog3 Member Posts: 65
edited June 2014 in Caring for Someone with Breast cancer

This has been a bumpy road. Long story short my mom was diagnosed with breast cancer in July 2008. At that time they discovered it had spread to her lung. She was put on a chemo drug that stopped working shortly after. She had the original breast tumor removed about one year after diagnosis. She then was put on hormone therapy. She has been on several different types of meds that stopped working. During one of the scans they found it had spread to her lymph nodes. She went on hormone shots that stopped controlling the growth. On June 16th my mom went into the hospital because of breathing issues.She said 2 weeks before she was affraid to go to the hospital because she would never get to come home. She was in the hospital for 11 days. They decided she needed to go to a nursing home for rehab.  She was in the nursing home for 5 days when she developed very bad cellulitis in both of her legs. After fighting with the nursing home we finally got  them to take her to the er for evaluation. They admitted her and kept her for 6 days. When the cellulits was under control they sent her to a second nursing home. After 17 days of re-hab she wanted to go home. She lives with us and has for the past 9 or so years. So we do all the cooking, cleaning etc. So I figured it would be no different than before. She has been home for 8 days and I am really concerned. She is only awake for about 3 hours at a time. a couple times a day. She sleeps with her bi-pap machine on for about 18 hours a day. She eats one meal a day and her breathing isn't very good. I make sure she takes her meds and try to encourage her to do her breathing treatments. She is not happy using the oxygen but did call and order it herself on her second day home. She is currently taking tamoxofin because she wanted some sort of treatment option. The onc seemed unconvinced that it would help. I have asked her if she would like to call hospice and she said she is not ready. We had hospice for my stepdad in our home and it was a very positive experience. I guess maybe she is not to the point that she is willing to stop treatment. But, she has said she will not do IV chemo. I used to ask the onc all sorts of questions at the begining of treatment but lately have followed my moms lead and wait for her to ask. We usually leave the oncs office with no questions being asked. It is hard for me to see her quality of life decline. I try to engage her is conversation but all she does is get a fake smile on her face and look at me. She trys to convince me that she is okay but, I am not convinced. I feel I should do more for her but it seems she just wants to, I don't know. I don't think it is denial I think she is just avoiding conversation about it. We have never been really touchy feely so when I say I love her she says.OK. I am 42 years old and she is 67. I am worried she will not say if or when she needs to go back to the hospital. She has not made a follow up appointment with our family doc and her next Onc appointment ins't until October 5th. Any suggestions on how I handle this. I need to talk about things almost to a fault. And obviously my mom does not. Any ideas on how I can handle my feelings without sharing them with my mom???

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2010

    chipdog3, I'm so sorry about your Mom.  I'm not a doctor and it's hard to tell what's going on for sure from your post, but the excessive sleeping could be one of two things -- depression, or it may be that her body is starting to shut down.  I'm so sorry to be the one to suggest that to you, but if that is what's happening, you need to know.  Have you reported what you have explained here to her onc?  I think I would do that (in a phone call tomorrow) and see what he suggests.  Perhaps there is something else that could be done to make her more comfortable and alert.

    As far as the need to talk, I think you just have to follow her lead, as hard as that may be, and perhaps use BCO, as you have here, to talk about things you haven't been able to talk to her about.  If you are truly worried that you might not get to say things to her, then maybe a beautiful letter expressing your love and gratitude would be easier for her to accept than conversation, and maybe even open the door to talking.

    I hope this bit of input will bump your thread and get you some better wisdom from others who have been through what you're going through now.  God bless ~  Deanna

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  • MrsNice
    MrsNice Member Posts: 258
    edited September 2010

    Deanna, your words of concern are so graciously written. 

    Chipdog, I too am sorry you are going through this with your mom.  It is a difficult road.  And if she is not expressing herself, well, it's not likely she can be forced to do so.  I do agree with Deanna as far as the possibility that your mom's either depressed, or her body is at least in some way preparing to shut down.  Having gone through this with your stepdad, you are likely already familiar with the process.  I was not until my mother's "end days" 10 years ago.  When your mom was in the 17 days of rehab, did they have her doing any physical activity?  Just curious, as I would imagine if she was doing it there she could be doing so at home too.  If not, then maybe she wanted to come home to rest instead of doing it there?  I don't know.  I sure wish I had more answers for you.  I will pray for peace and comfort for you and your mom, and the rest of your family too.  Keep us posted on how she's doing.

    Kathy

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  • chipdog3
    chipdog3 Member Posts: 65
    edited September 2010

    Thanks for your kind words of encouragement. I have an appointment with our family Dr. tomorrow we see the same one. I am hoping after taking care of my issues, I can get some advice from him about my mom. I am on her list to receive her medical information and have been at every appointment with her for the past 5 years at least. I am unsure if the Onc's office would talk with me about her? I have been to every appointment she has had with him so maybe they would. As far as physical activity they had her do minimal walking like 100 feet daily and did some arm and leg exercises. She is in poor physical health even without the cancer. She is very overweight and has COPD, sleep apnea and has not been physically active for 6-7 years. I was hopping  if it was depression that being home would help to lift her spirits but that does not seem to be the case. I also have written her several letters over the past 2 years most of which highlighted the fun we had as a family. I tried to highlight the times she took my kids fishing and camping, funny stories from my childhood and other things that influenced who I am today. It was easier at the begining when she really had no symptoms to express things. Now it is like telling someone something they already know which seems redundent. I think maybe she just wants things to be normal so she doesn't have to think about the inevitable. Again thanks again for your thoughts and well wishes. I will take all of your advice and see if I can find some comfort for myself. Thanks again, Sandy AKA chipdog3

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited September 2010

    Chipdog3,

    Bless your heart, caring for our parents is not easy.  I had a few thoughts if I may share.  I know another poster said Hospice accepted her husband while he was receiving chemo.  I'm wondering if that is something you can check out?  Also, there is another arm to chemo called palliative care, that offers pain management and medications management for people with chronic illnesses.  (at least here in DC)  Perhaps your mom might be more receptive if it was under the Palliative Care instead of "Hospice."

    Another idea would be to see if you can get a Geriatric Specialist or your family MD to address your mom's withdrawal and excessive sleep.  I have seen meds used with this population that really perked them up and allowed much more interaction with family/therapists.  I know your mom is 67, but I like the fact that they are so good with managing multiple illnesses. They (your Primary Care or Onc) should also be aware of the excessive sleepiness, and your mom's increased reliance on her Bi-Pap.  Perhaps something needs to be tweeked, or take a look at how she is oxygenating....

    so those are just a few thoughts, and I see you are going to your family MD tomorrow, so I will wish you the best and lots of good answers for your very valid questions.  It is hard to be a caregiver for our parents...remember, you are doing a wonderful job.  You honor your mother everyday, and she know it.

    P.S. Sometimes a family meeting with the MD, Social Worker, Nurses can also get everyone on the same page. 

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  • chipdog3
    chipdog3 Member Posts: 65
    edited September 2010

    Thank you for your response and wonderful suggestions. I will hopefully get some answers or at least suggestions today. I am doing the best I can but sometimes it feels like it isn't enough. I will write more later if I get any news. Thank you so much for your caring words. Sandy

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited September 2010

    Take Care Sandy and good luck!

    traci

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  • chipdog3
    chipdog3 Member Posts: 65
    edited September 2010

    Well the trip to the Dr. was unproductive. As you guys figured out before I feels she is mostly depressed and said I should try to engage her more in conversation and activity. So I guess I have a new job added to my list. I wll try to spend more quality time instead of allowing her to  have time to herself. Wish me luck. Sandy

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited September 2010

    Sandy,

    Hum. I guess I am concerned that you are putting a lot on yourself? Please excuse if I am overreaching here...but one person cannot take all of the responsibility for another's depression/outlook.  Not sure if your mom would ever be receptive to counseling, or going to a support group?  There is a generational divide I have found with parents and acceptance of the value of counseling.  Also not sure how difficult mobility is for her and you as far as getting out.  does she have any hobbies you could foster (knitting, drawing, crosswords) that she could immerse herself in?  Is mom religious and would she benefit from home visits with church outreach/pastor?

    I still firmly believe that anti-depressants can be remarkable for people suffering from depression. There are still options!  do the best you can, but please take care of yourself.  The tragedy would be for you to crumple in the midst of this all.  Are you getting the support You need?

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited September 2010

    First off, I am so sorry you are having to go through this.  I know parents seem to "choose" who is going to be their caregiver when they become older.  You must be it.  It is a difficult road since roles become reversed and you are really the parental role.

    I agree that call to her onco may help give you insights.  As far as I'm concerned HIPPA-schmippa!  Most doctors will tell you information when they know the situation.  If you don't have a medical power of attorney, you might want to get one, if nothing else, to help communicate on your mom's behalf legally if you get a stickler for the rules.

    A pallitive care option might work for your mom and she may agree to that.  If you approach it that you need assistance to have someone come in....afterall, you are still her "baby" even if she is not well, and I'm sure she wants what is best for you no matter what.

    I wish you the best.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2010

    Sandy, you've also been on my mind today.  I think squidwitch has brought up an excellent point, and I wanted to throw out another idea.  Do you think it might help to either ask your Mom if there's something she'd like to do (to get out of the house and change the scene), or maybe even try to plan some little excursions you think she'd enjoy?  I'm just trying to relate to the situation, and I'm wondering if you might lift her spirits by doing something with her she would look forward to doing  -- whether that's an outing to an ice cream parlor, or a drive to see an old friend.  You get the idea... just a break from the same old-same old, and something to look forward to.    

    Thinking of you ~   Deanna

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  • chipdog3
    chipdog3 Member Posts: 65
    edited September 2010

    Thanks  for your fine suggestions. My mom only leaves the house to go to the doctor. Ever since my pops (step-dad) died and about year before that she rarely leaves the house. We did get her a computer so she can be on facebook and talk to family far and near. She also loves to play cards and word games on her favorite gaming network. My son is away at college at central michigan and my husband and I went up to see him on monday. we offered to take her along and would stop at the indian casino which is her favorite thing to do and she declined. I am her only child and my step sisters have not been around since pops died which has been 5 years. Oh sure they call her up when they need money but other than that we have a forced meeting for Christmas. My grandma is in a nursing home about 15 minutes from here and I visit her everyday. However my mom and her only talk when I bring grandma over to the house for special meals. In fact before we were forced to get her care in jan. of this year my mother would wonder why I called her daily when she only talked with her once every 3 months. She also has one brother who currently lives 8 hours away. He doesn't care about anyone but himself. We pay for my grandma to have a phone in her room at the nursing home so he can call her which he manages to do about once a month.So needless to say he doesn't bother to call my mother either. She does a special family friend honestly the only people that make her smile. I did call on them when she was in the nursing home and they came weekly. They are wonderful people who lift the spirits of everyone around them. She doesn't believe in a religion. Ever since she has divorced my Dad which was mind you 38 years ago she feels she is no longer welcome by her church. We have tried to convence her that is not so but she is stubborn as they come. She does take an antidepressant as needed she will not put them in with her daily meds so I have no idea how often she takes them. I believe they are every 8 hours but, again no idea how often she takes them. If she doesn't take them she tends to scratch open sores on her arms and actually those are doing pretty well. Which makes me think she is using the meds. Oh trust me I understand I am the "baby". At the top of 6 stairs I am the mom at the bottom I am the child. When you hit the last step you have a total conformation and become  the yes mom robot. I am trying to pull out all the stops for her but she will or doesn't feel well enough to go or do anything. Last summer she did take my kids and go to vegas. Gambling is her favorite thing and when my son was home on her good days he would take her. This past summer she did not go one time. She said she didn't feel up to it. So if she won't get up to go gambling I don't know what else would work. Well my husband will be home soon and if he finds me on the computer in the middle of the night instead of in bed he will not be happy. Also I have to be to work in 3 hours. So I shall stop my random babbling and go to bed. Thank you all for your care, concern and suggestions. If there is anything I can do for you don't hesitate to let me know. Thanks again, Sandy

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  • lauri
    lauri Member Posts: 267
    edited September 2010

    Maybe you could have your mother check out BCO for a few laughs? My favorite thread is "you know you're a breast cancer patient when..." on the Stage III board.

    Does the onc know all the meds she's on ?  Maybe there's an interaction that's causing the sleepiness.  (Just a suggestion)  After all, she's a YOUNG woman (I just turned 66 this week, so 67 doesn't seem old to me.)

    You're a great daughter, Sandy.  Hope you and your husband can get some time to do something for yourselves while taking care of your mother.

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  • chipdog3
    chipdog3 Member Posts: 65
    edited September 2010

    Just to let you all know. My mom passed away on Sunday Sept. 26th. Thank you for your thoughts, prayers and suggestions. I really did appreciate your thoughtfulness. Sandy

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  • BrokenHeart
    BrokenHeart Member Posts: 241
    edited September 2010

    Sandy, please accept my deepest condolances.  I am so very sorry for your loss. Hugs, Zeana

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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited September 2010

    Sandy, please accept my hearfelt condolences.  What a wonderful, caring daughter she had in you.  It must have made her feel so loved.

    You did a beautiful thing, sweetie and you cared so much.

    xoxoxoxo

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