Stage 1V BC in 90 year old

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CKek
CKek Member Posts: 3

Where to start. In Dec 2013 my 90 year old mother was diagnosed with stage 1V BC bone mets. Since then, she has had 5 days of radiation, hormone inhibitor drug, and is now up to 240 mg of hydromorphone daily. She has haldol (?) for nausea and extreme anxiety. I live 1 hour away, work full time, and have a teenage. It is now 8 months later and she is in a nursing home in palliative care...my sister and I looked after her for 4 months full time, until she decided to go into care. My problem now is very selfish. Several times the nurses and doctor say she is close to death. I want to be there for her, but I am suffering from depression. About every 3rd day is all I can do. She begs me not to leave, begs me to sleep over, talks about her fear all the time. She does not accept the cancer. She chants 'help me help me '.  She rallies again and again. I can no longer 'hope', as the rallying is not fun. When she is close, my 3 siblings and I rally to her, spend tons of round the clock time with her, then she gets stronger again for a bit. Doctor today says maybe 2 weeks. Well 8 months ago, he said maybe 2 months. Doctor has taken off all non essential meds, i.e. blood pressure, digoxin.

I am soooo messed up. I have days where I cry and cry. And days where I busy myself. My husband makes keeping me sane a project. lol

She was my mother and my father, as he died when I was a child. She will not say goodbye. I have done so as much as she would 'allow'. She told me not to tell her about her disease, and she only wants to know it's all fine. So she is attempting to stop me from grieving. Once, in her room, I sniffled, and she told me that I was not to cry about any of this. I cannot fall asleep anymore without .5 of a sleeping pill, or .5 of lorazepam, no matter how tired I am. I want to be with her, but when I am there, I want to be home. I teach, and if she is still here in September, have no idea how I can manage work with this going on. I hate this so much. She should have died in her sleep, like her parents did. I feel so guilty, but I am trying not to slide into a deep depression. I have used meds before and they are horrible. I am not suicidal. I am seeing a therapist, but not enough.

Thoughts anyone? 

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2014

    Dear CKek

    Welcome to the BCO community.

    You have joined a terrific group of supportive and
    knowledgeable people who can offer wisdom, information and their own
    experiences. Many members have lost family and friendfs to this problem. It is not easy and each case is different. We appreciate how difficult it is to be there enough for your mother but still have time yourself. Please don't feel guilty as you are doing your best.

    While you are waiting for some responses please
    know that we are sending along warm thoughts and hugs. You may wish to search
    our main site for more information on being a caregiver.

    Many here will acknowledge how hard the worry is
    when you are waiting for someone to pass. We hope that your membership here will help
    with that. Often just having someone to interact with who understands, but is not actually involved, can help.

    We send hugs to you and your mother.

    The Mods

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited July 2014

    CKek - Please understand that these are only my personal opinions and experiences. They may not have meaning for you.

    Your post hits home for me for several reasons.... I had my mom in nursing care for more than ten years; the last three in a skilled nursing facility.

    She had end-stage Parkinson's, and some Parkinson's-related dementia.

    I was working 60 hours a week, yet felt I had to be at the nursing home every single day, so I would zoom down there on my lunch hour and zoom back to my desk. If I'd had a family then, I don't know how I would have done it.

    Over the years I got so many calls that she had been taken to the hospital, near death, and every time, she would rally. That kind of emotional roller coaster is so draining. I finally started asking the staff: is this it? Is this the end? And they always said the same thing: "No one knows."

    I made sure that whenever I DID see her, I would tell her how much I loved her, and what a great mom and role model she had been for me. That way, if she did pass and I weren't there, I would have no unfinished business.

    I'm glad you are seeing a therapist. You need an outlet for so many emotions that we go through at times like this. If you are not able to see your therapist as often as you want, you might try writing your thoughts down in a journal. Sometimes getting them out of your brain and onto paper allows you to relax and let go of them.

    We know at age 90, your mom won't probably won't get better, and with Palliative Care, it really is just a matter of time. But no one has a crystal ball. What I CAN tell you is that once the patient stops taking in any food and water, it is usually a matter of days. I went through that with my mom when she passed in 2009, and I just went through that with my MIL when she passed in January of this year. She was 93.

    I think I would try to talk to the Director of the Palliative Care service (or the Social Worker) at your mom's facility and relate some of what you have posted here. Trust me, they have heard it many times before. 

    Also, you should have access to Hospice counselors, even if Mom is not officially under Hospice care. They are there to deal with family members, not just the patient.

    Find out if Mom's pain is under control. Find out if there are different drugs she can take that do not exacerbate her anxiety and depression. She may need a different approach to treatment. (For example, Haldol can increase anxiety... there are other drugs for nausea.) Ask why she is taking the drugs she is taking.

    Could some of her crying out be from dementia made worse by her cancer and her drugs? 

    If so, that may not be directed at you, and taking it personally is just hurting you.  Mom may just be confused and frightened. The staff should know exactly how to calm her down.

    Find out what their plan is for Comfort Care... in other words, is there a point where they will they stop administering food and water?

    It sounds like you have been a wonderful daughter, yet still feel the need to make things better, somehow. I think by getting Mom into Palliative Care, you can unload some of your guilt by knowing that she is in the hands of professionals who can care for her and make her comfortable. (As long as they know how upset she is, and that they need to work harder to find a way to make her feel comfortable.)

    As for your being with her until the very end, that's a hard call. If each visit leaves you more and more depressed, then maybe it's time to cut back. You can remember and honor your mother in your own way without being in the same room with her. Not everyone handles a parent's final days in the same way.

    But I think that if you want to be there at her passing, that is something that the staff CAN tell you... when it comes down to a matter of hours.

    I think that we would all like is for our parents to simply go quietly in their sleep. Unfortunately, that isn't the case. It's a sad thing to watch, but personally, I have a strong faith that has always gotten me through. That hasn't been the case for my brothers and sisters. We all responded differently, as did my DH's siblings with their mother.

    I am so sorry... this is a tough time. But you have done the right thing, and are not one bit selfish to be thinking of your own mental health at a time like this.

    Sending you big hugs....

  • CKek
    CKek Member Posts: 3
    edited August 2014

    Blessings 2011, 

    Thank you for your thoughts. So good of you to share your similar experiences and advice. 

    After a tough day, she is more settled. She is on a pump and it is helping.  I will act on some of your ideas, and I really appreciate the support. Tomorrow I can spend time with her, which I am working to prepare myself for, psychologically. I have been spending a bit of time depersonalizing the chanting/comments, as I believe it is from the drugs and the illness. Re: the food and water, she has stopped several times for 3-4 days, then starts again. She has a friend who visits daily and convinces her to eat a bit. Left to her own, she would not eat. She will eat from me, as well, but quantities have been minimal for a long while. She is under 100 lbs, having started out at 150.

    I spent the day after my last day with her in the company of friends doing some outdoor activities. That helped a lot, but it really just postponed my sadness. I am not asking not to be sad sometimes, I just don't want it all the time, as I need to function in all my other roles. Boy, does this ever make you re-evaluate your life, job, etc....changes your view and your priorities. My faith has been sorely tested, but I think it is still there. 

    I know I have been a 'good daughter', but my mother has always been very painfully independent, not permitting much closeness. She refused to 'impose' herself on me as an adult, relying instead on friends for doctors, errands, etc. Always claiming she would never want her daughters to have to look after her. She has also been a woman who has had a difficult life, and expressed a lot of herself through anger, when I was younger. Now her illness makes her demand this, and I do treasure the opportunities for this. It allows for a level of showing love that was never acceptable, but I wish to God it could have been earlier.  Bittersweet. 

  • CKek
    CKek Member Posts: 3
    edited August 2014

    My mom has died. I am bereft, but I know I was there enough. God I miss her like crazy, but it would be wrong if she continued suffering.

    She died after my sister and I left, but she was with a good friend.

    Unfortunately, she died in a tsunami of myclonic jerking, in a coma like state. She was aware. So, it is terrible that she died in what I think

    was likely a lot of agony, but thank God she is not suffering anymore.

    All this has been like being thrown down a set of stairs, but nothing changes the weird fact that there was a gift...we had 8 months to talk, laugh, cry, and really show our love for each other. Not everyone gets that. 

    An idea I was given, that I did not follow, was to record her story telling times. I did not do that, but one day I taped my visit. It was less that 2 weeks before she died. At the end of the recording, I get ready to leave and I tell her that I love her. She tells me "I love you too, you know that". I now have that precious precious sound in my cell phone. Will save more permanently soon. In the middle of a crying spell, I played it and I thought my face would break with the smile it brought me. So, for some of you, this might be a good thing to do. 

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