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New Here - Plum Tuckered Out  
Started by Sam I Am
15 Oct 2016, 3:00 PM
I am resubmitting this post as I may have posted earlier in the wrong area - I am a newbie in so many areas)

Stumbled upon this great site, today, and am so glad I did ! 

I simply don't know where to begin.  So, I will begin with saying Thank You - Thank you to all who have made this forum possible and to all of you who share with open hearts. 

I hope to muster up the energy to untangle my thoughts/concerns and ask for guidance, tips, support to help me navigate the troubled and exhausting journey of trying to help care for my substance abusing, grief stricken, widowed mother with advancing, stage four metastatic breast cancer (bones, liver). 

In the meantime, I am grateful to read, and learn from, the posts you all share. 

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Reply by KathCull_admin
16 Oct 2016, 11:19 AM
Welcome Sam I Am. I am glad you found our community and have found it helpful. It's amazingly powerful isn't it to read the words of others who so 'get' how we feel. And to be able to speak honestly and openly knowing that the people here care and are shoulders to lean on.  

Are you your mothers primary caregiver? What supports do you have?

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Reply by Sam I Am
17 Oct 2016, 1:08 PM
Thanks kindly, Katherine, for your thoughtful reply. I am my widowed mother's only family in town, her eldest daughter, (2 out of province sisters unable "to handle" Mom's current situation), and her designated POA.
   Less than 1 year ago, after a 4 month hospitalization, (major alcohol abuse, several falls, and malnutrition, all due to debilitating, unadressed grief), and a relapse hospitalization, Mom was returned twice, to her subsidized apartment, with the condition she allow 3x 15 minute daily Personal Support Worker visits (to ensure safety, medication supervision, quick shower, food prep).
   Once again, PSWs are reporting daily concerns re the same unsafe behaviours from last year.        Visiting nurses, palliative doctors, social worker, case worker, have been re-informed, (as per last year), but continue to insist Mom is fit (seen with 2 blackened eyes, bump on forehead, and small wrist fracture), "to make her own decisions" and remain in her buggy apartment.
   Even after a fearful, elderly building resident called in a report (Mom was found in the shared kitchen/lounge area, inebriated first thing in the morning, trying to light a cigarette with a lit stove element and a paper napkin), the palliative doctor commented it was something "the building's management could address", and insisted Mom was fine "to make her own decisions".
   I've been told, by the visiting doctors, nurses, and various workers, to expect Mom "will likely fall and suffer a brain bleed", and that she is fully accepting of these high risk consequences (exact same circumstances that caused her husband's death 4 years ago). 
   I don't know how to peacefully accept this probable outcome (unavoidable as I see it, with doctors's support), but feel circumstances won't likely change. It has been a four year nightmare for those who love Mom. 
   I support Mom in her decision to cease Hercepton treatment (nor resume chemo) Due to her exhaustion. Others wish she'd "do it for" them or her daughters, etc. 
I don't know what to expect without treatment, though. Her oncologist is skirting details as he appears frustrated by her repeat inebriated visits. She is currently experiencing stabilized bone mets, increasing liver mets (right lobe only), abdominal swelling, neuropathy in hands, feet, legs, and possible cirrhosis. 
   I cannot afford private counseling and my caregiver support group is, but once a month.
   I am reaching out in here, in hopes of finding some words of comfort or insight. 
   Thank you for reading. 
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Reply by Carlyn
19 Oct 2016, 3:26 PM
Hi Sam I Am,

I'm joining Katherine in welcoming you. The information and support here is a much needed buffer zone at times like this in life.

In the interim, this may help to understand what your Mom may be facing now that treatment is over; this page has lots of subsections, just click on each. 
Symptoms and Health Concerns (hope i've done that link correctly, if not I will post it in it's own post below this one) These are geared to end of life but I know your concern is cancer. This is a starting point.

Breast cancer is not something I have experienced as a caregiver but my Mom had gallbladder cancer with mets to liver. Abdominal swelling was there too. Ascites maybe (fluid buildup).  Liver cancer, even tho it was not the primary cancer, gave my Mom a peaceful ending. It may be helpful, if you think, that your Mom has anti itch lotions and some antihistamines on hand to help relieve the itching. That comes with liver cancer for some. 

This is very overwhelming to have on your shoulders alone. I agree with you though that you need to know what to expect, especially because you are primary for your Mom with POA. I would suggest contacting her Oncologist's office and asking for direction. Also ask about palliative care at home for her or better would be hospice care but given her addiction i'm unsure if that's an option. PSWs are good but a home nurse at this point also or some kind of medical care at home... is there any program in your area for that? With more people opting to die at home, there is sometimes doctors and nurses who will come to your Mom now at her home but the Oncologist has to put that in motion I think? Or even just ask a nurse, or a PSW, any of them, what next steps might be and what more supports there are in your area?

Minimize anything that adds to what is already on you and your Mom unless it's a priority to care for her at end of life and ensure you are well informed for your legal capacity too. It's ok to ask questions. I know doctors get frustrated with some patients (i am a patient, have been a caregiver for each parent too) but shift his perspective to this - you need him to focus on you and your questions and you will mediate between him and your Mom, in a sense.  That's just an idea. You need info to understand and care properly for her and how to coordinate additional supports and what exactly are the additional supports available? You won't fully know unless the Oncologist speaks with you alone. Your Mom does not have to be part of these conversations as you have her POA and given her state of health, it seems reasonable for you to step in more.

My Mom had an array of emotions at the end. She was not addicted to anything, she was a good Mom, but it's hard being at end of life for most people. The emotions alone.... so I didn't tell Mom everything unless I knew she needed to know it. Especially once all treatment was pulled as there was no success with any of it. My Mom did not care to know either, she just wanted good care, comfort, distraction from what she was dealing with at times (colouring books, soothing music, meditation videos on Youtube just for examples if this helps)... I didn't want her stressed so unless she had to know, I didn't tell her unless she asked specifically about anything. And then the priority was be truthful but not to upsetting extent, be calm, soothing at all times, and most of all - preserve her dignity. Dignity is different for people it seems so just do what you think is right. 

It sounds like you love your Mom despite all that's a part of this and her life and you are a wonderful daughter. I'm very sorry for what your Mom has gone through. Grief is a beast.

Please come here anytime to vent as your caregiver group doesn't meet often. There are so very many wonderful people here and I know you will have lots more support and excellent answers. Very experienced loving survivors who lost family members here, as well as professionals in health and palliative care.

Sending encouragement to you. You're doing excellent for your Mom. (I am sorry this was winded and long....!)

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Reply by Sam I Am
20 Oct 2016, 4:37 PM
   Thank you, Carlyn, for sharing with me.  Thanks also (to yourself and K), for encouraging me to reach out, "vent", and feel supported here.
   This past Monday, was another ER visit by ambulance (PSW called paramedics when Mom was discovered, early morning, dangerously intoxicated and experiencing life threatening, medication withdrawal). As per last time, after receiving hours of ER care, Mom was deemed "fit" and returned home. 
   Unless Mom finally becomes able to accept help (professionals are offering all kinds), or she is deemed not competent (to make her own decisions, including financial ones), then her dangerous lifestyle choices will continue.... until they don't.  Sadly, I need to accept this likely scenario. 

   Since she is "capable", I cannot utilize her bank card to better assist her monthly banking and budgetting. The bank will not issue me a POA card while she still has hers (either, or, but not 2 cards). Though she is in considerable debt, her small monthly budget provides for her food, laundry, toiletries, and such (bills are covered). She has been spending most of her monthly money on alcohol which understandably upsets my sisters, greatly. They don't understand (out of province and showing little interaction with Mom - lifelong family dysfunction), that, though her cupboards are stocked, she hasn't had an appetite in months. 
   We meet with her oncologist next week when we'll ask him what to expect with termination of treatment.   

Thanks for any insights you care to share. 

Best to all. 
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Reply by Carlyn
20 Oct 2016, 6:48 PM
Hi Sam I Am,

My heart goes out to you. The multiple ER visits, with ambulance in particular, are not comfortable to experience. 

I understand more what you're dealing with.... with my Dad, very similar.

It's good your Mom's budget is taking care of her needs. Try not to worry about the debts as it doesn't sound like it's a priority (eg. a mortgage going unpaid, car payment needed for transport).  You have a lot on you already. As you said, there isn't anything you can do about the rest. It will be ok though. You don't need to yet. 

Even though you are her daughter, you are still immediate relative and next of kin. You can communicate with your Mom's doctors and nurses on your own. Especially given your Mom's state, nobody would question your right to do that or that it's the best decision to help care for your Mom. So don't hesitate in that regard. I understand the banking thing (professional background here), let it sit, it sounds fine as is.

Your siblings might find it helpful to read the forums here to help them understand. That takes the burden of explaining off you and may help you all support each other during this time. 

I'm keeping you and your Mom in my thoughts. No reply needed, I just wanted to add the above in case it helps. Keep priority for care on you and your Mom. 

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Reply by KathCull_admin
03 Nov 2016, 10:43 PM

I wonder if you might find the article Guilt, Regret, Forgiveness, Reconciliation helpful? 

It's a tough road Sam I Am. 

Another thread started by janey49 talks a bit more about what you have talked about too Care giver stress, feeling lost! 

How did the appointment with the oncologist go?


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