Caring for terminally ill mother

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Hello,

I hope you can help me. My mother, who has up until a month ago been living an independent life has been diagnosed with nasopharyngeal tumor and progressive bulbar palsy. She has been in a hospital for the last month and underwent tracheotomy to enable breathing and is currently being fed through a tube. She has lost almost all hearing due to her condition and we communicate with her by reading her lips and by writing either on paper or on the phone. 
She is mentally alert and deeply affected by her illness. Recent symptoms that started to make lip reading difficult and may be connected to her condition but then again may be a result of a mini stroke is paralysis of facial muscles.
She is severely depressed, and because of her inability to speak (she did try to cover the tube and speak but it makes her cough violently and her speach is gurgle and hard to understand) and hear she is withdrawing.

My sister and I visit her every day but we are struggling with engaging her in any sort of communication. Looking at pictures of her great grandchildren is a very momentary and short lived, almost mechanical distraction. She doesn’t want to talk about the past, look at pictures from the past or reminiscence. She gets impatient if we ask about her pain and her condition. Is there anything we can do to maintain communication with her and lift her spirits even a tiny bit? I end up sitting there holding her hand and she finds even that at times irritating. I am planning to talk to the doctor about antidepressants but I am wondering if there is a way I can communicate with her without causing her to be irotated, frustrated or sad.

Any help would be greatly appreciated

Thanks,

Judith

  • Hello Judith and thank you for contacting the Macmillan Online Community.

     

    It’s difficult to suggest what you could say to your mum without knowing her. I appreciate this is complicated by her communication issues as well. You might just have to see when she’s ready to talk if she’s not there yet. You may be able to sense if your mum wants to talk at some point. Listen to her carefully and if she tells you something about the cancer, ask her if she wants to talk about it more. But let her decide if and when she wants to have that conversation. If you are not sure, you can always ask, ‘Do you feel like talking?’ If your mum does want to talk to you about cancer, you may find it helpful to find out:

     

    • what topics are okay to talk about

     

    • how she will let you know if she does not want to talk

     

    • what support you can offer that would be helpful. Sometimes people do not want to talk about cancer or their feelings. This may be because they do not feel it will be helpful for them or that they want a break from thinking about it. You can still help by listening and paying attention when she does choose to talk.

     

    Our publication Talking with someone who has cancer has been written to help people talk with and support a family member, friend, or partner with cancer. It includes suggestions on how to be a good listener, how to talk about cancer and how to offer practical help while looking after yourself. It also has details of how to get support. 

    I’m so sorry to hear about your mum Judith, it’s hard to imagine how you must be feeling just now. How do you feel you’re managing? We’re here for you if you’d like to discuss this further or if you have any further questions. You can call in on 0808 808 00 00 (7 days a week, 8am – 8pm), web chat or email if you’d prefer.

     

    Take care.

    Alex, Information and Support Adviser

    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.