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    • #24900
      Sita
      Participant

      My mother is 71 years old. She was diagnosed with IPF in 2015. She is taking 2g of Cellcept and 20 mg of prednisone. She is on 4L of supplemental oxygen 24/7. She is able to get off the bed, use the bathroom, shower and do things on her own as of now. I was on a call with her pulmonologist this week and he told me that I have start thinking about hospice care. He said he will prescribe a low dose of morphine to keep her comfortable.

      I do not know what to do. I dont want to discuss this with my mom now? Is it okay to wait to decide? are there any benefits of going to hospice? any advice is appreciated.

       

      Sita

    • #24901
      Mark Koziol
      Keymaster

      Hello Sita, I’m sorry to hear about your mother. This disease is devastating to patients and caregivers alike. I think you should speak to a social worker who specializes in hospice care. Many hospitals or clinics do have a social worker on staff to help guide you through the process. They might even discuss palliative care with with the both of you. Again, I’m sorry you are both suffering from the effects of this horrible disease. Take care, Mark.

    • #24902
      Sita
      Participant

      Thank you Mark. It is devastating for sure. I will try to find out about the option of a social worker. Are they associated with hospitals or with doctor’s office too? I am sorry, I am quite ignorant in this whole process.

    • #24903
      Mark Koziol
      Keymaster

      I know most hospital groups do have social workers on staff. For doctors offices it probably depends on the doctors group as many are affiliated to cut down on overhead. I would ask your mom’s doctor first and he may have suggestions but if you are not comfortable with him you can always get second opinion as well. Best wishes, Mark

    • #24904
      Wendy Dirks
      Participant

      Has your mother’s physician spoken to her? I’m somewhat shocked to think he has had this conversation with you without telling her. I personally would be very upset if my doctor spoke to my husband about hospice care and other end of life issues without speaking to me first. I’m 67, not much younger than your mother. The principle of informed consent is so important and for him to discuss this with you rather than with her strikes me as very odd. It is up to her, at the end of the day, to make these decisions, not for family members.

    • #24905
      Susan Howitt
      Participant

      I am 74 on my own with four progressive lung diseases including PF, on 20 prednisone,  3lts O2 24/7, and need 6lts or more when I go out, I force myself to exercise and try and walk at least 2kms a day, don’t always make it though.

      I was horrified to read that the pulmonologist was talking about hospice care, I personally, speaking as one that has been told I will not live past the three years, given one to three years life expectancy, now nearly through the third year, still here, it really does depend on your mothers fighting spirit as to how she would react, I know I am going down hill fast but will not give in, I will fight to the bitter end and would not have any one tell me I needed to go into a hospice, not that there are such things here, I would know when my time is up, don’t need to be told. My reaction may not be the same as your mothers, you know here better than any one. My pulmonologist calls me stubborn, stubborn is keeping me going !!!

      So sorry for you and your mother,  damaged lungs are a terrible thing.

       

      • This reply was modified 1 month ago by Charlene Marshall. Reason: removed duplication at member request
    • #24906
      Susan Howitt
      Participant

      Sorry can some one eradicate the repeat at the bottom of my reply, don’t know how it got there.

    • #24914
      JillT
      Participant

      Totally agree with Wendy. Unless your mother is incapable of making decisions about her own medical care, the doctor should be discussing it with her first, not you. I would ask your mother what the doctor has told her about her own situation. Seems very odd to me too that he would approach you and not her.

    • #24917
      Sita
      Participant

      Thank you all for your responses. I understand your shock. My mother is set up a bit differently than most people who live here in America. My mother lives with our family in the same house. I am her caregiver. After my dad passed away, she moved in with us. I take care of all her needs and she doesn’t want any responsibility. I take her to the appointments and I keep in touch with the physicians. The term hospice is not used in my birth country- India. My mom speaks and understands English but she will not understand the medical terms used in this country. Hence she asks me to talk to the doctors. It is not easy for me and I will not decide anything without her consent.

      This is why I love this forum as I can read all your opinions and make sense with it. Thank you for sharing your thoughts. I have not reached any conclusions yet. My mom is doing fine in her new normal. She is on oxygen 24/7, she stays in her room most of the day, climbs down the stairs end of the day and sits in the deck with me. I’ll take this for now. I’ll hold onto her as much as longer as I can.

       

    • #24918
      Mark Koziol
      Keymaster

      Hello Sita, you didn’t owe anyone an explanation. Every household is set up different and for that I commend you for taking care of your mother. Thank you again for being a caring caregiver, Mark.

    • #24920
      Susan Howitt
      Participant

      Hi Sita

      Wonderful that you can and are willing to look after your mother.  Personally, and it is only my opinion going by what your mother can do and what I can do, it doesn’t look to me that it is time to discuss hospice care, if she can get up and down stairs without too much problem, this is good , I can’t , and I think I am far from needing respite care, keep her moving as much as you can.

      Thank you for being a devoted daughter must bring such comfort to your Mum.

    • #24922
      Sita
      Participant

      Susan,

      Thank you for your kind words. I appreciate your feedback and I was thinking the same. I am sending some prayers and positive thoughts your way too.

       

    • #24943
      Wendy Dirks
      Participant

      Dear Sita,

      You are a very kind and loving person to care for your mother that way. What you say makes a lot of sense and I understand now. I’m sure a social worker can help you all make the appropriate decisions especially if you find one that is aware of the cultural differences. But I agree with Susan Howitt – it doesn’t sound as if she needs hospice care yet. Here in the UK we have palliative care, which can be accessed years before the end of life and I’ve considered discussing that option with my consultant. I don’t know if you have that sort of option but you might look into it.

      Best wishes,

      Wendy

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