overwhelmed…….living a nightmare

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  • #48129
    marions
    Moderator

    Mom’sDaughter….Lainy also had a bad experience with Hospice. Have you had a chance to share your experience with her?
    All my best wishes,
    Marion

    #48128
    momsdaughter
    Participant

    Dear Roni,

    You are in such a difficult situation. One parent is tough enough, but two is just an impossible roller coaster. I know you have a terrific supportive family which will get you through this.

    Keep your happy disposition I see on facebook and know it will all work out, whether we like the results or not. Hospice did not help my Mom much, in fact, they left when she was dying and I had to call them back. But, I hope that was an isolated incidence. People say they are so helpful, just keep vigilant.

    You are very special, take care of yourself! :)

    #48127
    ronidinkes
    Member

    Thank you to everyone for you being there, listening to me, and for your generous support, I am a very lucky lady to have found this group, I am forever thankful.

    #48126
    gavin
    Moderator

    Hi Roni,

    I can’t really add anything to what has already been said to you, but I just wanted to let you know that I am thinking of you and am sorry that you are having to go through this. I know what it is like to be a carer to parents and it is not easy at all. I was my dads carer during his fight with CC and at the same time I was my mums carer and still am. Please keep coming back here as we are all here for you and no, you are NOT blabbering at all.

    Thinking of you.

    Gavin

    #48125
    cherbourg
    Participant

    Hi Ronidinkes,

    I think Wendy’s letter to you covers it all. It’s so hard to have to “parent” a parent. I also agree with Lainy about the anticipatory grief. I know from experience how horrible it can be. You almost have to turn off that part of your brain and learn to live in the moment. It’s so very hard to do when faced with the prospect of losing a loved one.

    I agree you have to respect your Mom’s wishes. The most insidious thing cancer does is take away a patient’s control over everything…even their body has betrayed them.

    You are doing everything right. I would advise you to get Hospice involved. They can be a godsend to you. That said, you have to take care of yourself (THE CAREGIVER). I know right now you are exhausted mentally, physically and emotionallly. Giving yourself as little as 20 minutes for a walk or a bath can help immensely.

    I lost my Mom to this disease almost 2 years ago and I still can be blindsided by the tears….so I’m still not sure how many there can be…

    I’m sending hugs, prayers for strength and love.

    Rest assured you are NOT blabbering….come back often…we are all here for you!

    Hugs,
    Pam

    #48124
    lainy
    Participant

    Dear ronidinkes, I cannot add much more to Wendy’s beautiful letter to you.
    Knowing what is to come perhaps you are experiencing your pre-grieving which is very normal, not to mention what you have been through being the Care Giver. I do believe it would be a good idea to have the Doctor call Hospice in at this time. They will be a big help to your parents as well as give you some physical and emotionall relief. It is beyond me how you have managed this far. Sending some big hugs to you and some strength as well.

    #48123
    ronidinkes
    Member

    thank you for listening and taking the time to respond. i sincerely appreciate it… :)
    today is “new day” i will start it out with a smile!

    #48122
    slittle1127
    Member

    Dear Roni – I am so sorry that you are going through all of this. My prayer for you is that you find some peace in honoring each parent the best you can. Be nice to yourself. Take some time to care for you. M heart is with you. Blessings, Susan

    #48121
    marions
    Moderator

    Roni….In addition to Wendy’s great response you might also want to contact our Dr. Giles. You can find him: top bar, patient support, and scroll down to: Ask Dr. Giles.
    We expect our parents to be just that…our parents whereas at times they can become our children in a strange sort of way. Each of them must be carrying a wide range of emotions some of which you may never fully understand.
    All my love,
    Marion

    #48120
    hughesdewy
    Member

    Hi Ronidinkes,

    I’m so sorry you are caught in the middle of parents who are suffering from different horrible, life-threatening conditions, I’m not surprised you don’t know where to run. Illness and fear and despair can sometimes brings out the worst in people (they are clearly feeling comfortable enough to voice their opinions about one another in front of you), and perhaps when you are not there with your parents, they do manage to find some middle ground and some enjoyment or even comfort in one another which is the bit you mind not see when you leave (After all, they have clearly elected to stay together in spite of “hating” one another haven’t they?).

    It sounds like your mum is finally taking control of her cholangiocarcinoma – the one thing i have noticed with my own mum is that she loses a lot of ‘herself’ when she is being dictated to by us (who care and want the best for her), the doctors or by the disease itself which sometimes makes her feel worse or weaker without warning. I guess you have to respect your mum’s wishes to finally take back some control, and admire her for actually being so strong and deciding enough is enough. My mum also refused chemo and radiation for the same reasons and defied a 6-9 month prognosis by keeping up her mental fight for the last 2 years, so medical treatment doesn’t count for everything!

    If it were me in your shoes, I think its time that I would want to begin to be the child in all this again, and I think you are right to refer them to the medics and hospices, as after all they are geared up to properly counsell and nurse your mum and help her through this and manage her condition and her end of life.

    I think we have to let our parents (continue) to make their own decisions even though they are weak and vulnerable and we feel we want to wrap them up in cotton wool. (For example, I would hate it if someone decided what i should do with my life). But I’m sure they really value you helping to guide them too, supporting them, loving them and respecting them and above all, enjoying all the good things about them that make you love them and want to care for them. At the end of the day, they are your mum and dad and not the other way around.

    Please don’t cry anymore Ronidinkes. My heart goes out to you for what you are going through and the difficulty and fear you are facing because you are scared of the consequences of your parents making the wrong decisions. They have a whole lifetime of experience under their belts, so I’m sure their choices are very wise.

    Take care, and please take some time for yourself too. To me, you sound like an amazing, caring and such a thoughtful daughter who just wants the best for her parents.

    Wendy

    #4789
    ronidinkes
    Member

    my mother has had chemo/ radiation for 5 days and she has given up. she did not want any chemo or radiation, and after 5 days she is throwing in the towel.

    she feels no one can tell her if any of this treatment is even going to work, so why waste her days….left with this kind of lifestyle….

    ….. she had a whipple in august and is in the low 100 if 100 pounds… i am trying to be a supportive daughter and told her i love her, and if she wishes to stop, i respect it. i did mention she should get hospice involved as i have no idea how aggressive this disease is, but from what i have read it is nasty and moves fast.

    my father is dying also with PAH and heart failure, he is retaining fluid at an increasing rate…..he was just in the hospital for 5+ weeks.

    my parents hate one another for reasons i cannot post, but they are still marrried for reasons i will never understand…… i was just visiting them, and it was an emotional roller coaster for me. all i do is cry, who knew a human had so many tears????????

    please guide me, support me, and tell me what to do. i am sincerely a lost person at this time.

    thanks for listening to my blabbering…

    -r

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