Dad in denial. Mom in end stage.

maccupiccu

Hi,

The short of it is my mom has been battling breast cancer for 6 years now. She was diagnosed with stage IV metastatic (bone/spine, liver, spleen) in 2005 and even then docs figured two years max. Well she surpassed all of their predictions including a year and a half ago's diagnoses of "no more options, you have 6 months to live." Well they put her on navelbine and zometa (she's been on zometa for a while) and everything was going great. Tumor markers down, tumors in liver shrinking.

 Then in Jan 2012 she acquired pneumonia. My dad in short, is abusive, controlling, and well in denial. I would contact her weekly and while she had a cough, it wasn't until the end of the month when I KNEW she had pneumonia. My dad didn't take her to the doc/hospital....NOTHING. I'm the one who rushed over there to see a weak, frail, disoriented woman with dyspenea, cachexia, hollowed out face, and just sick to the point of near death. I rushed her to the ER and got her treatment. During which, I did reveal to the staff that she's been abused by my dad for 50 years and this is it. She's not going home. Well that caused a bigger mess. They put her in rehab facility to give her a break (even with my support/encouragement) and it was the worse thing for her. She hated it. So I got her out in 3 days and she went back home. She couldn't live with me (she can be abusive too and refused to stay with me) and at 75 years old she knew she had no options.

 Well the fact of the matter is I firmly believe she needs to stop chemo and talk about hospice. I have NEVER seen her so frail/weak/sick in my life. She said she is too tired, weak, in pain, and finished to even think about chemo. My dad has been in such denial of her diagnosis that he is no help meaning anytime she's tried to get him to a lawyer for advanced directives and estate planning, he's put it off. Well now here we are with a 1971 will, no DNR/medical wishes, no estate planning, nothing. He's in denial. Her primary care doc is all "oh see me in 10-14 days". She's been off of chemo now for a month. She looks like hell, can't eat/doesn't eat in a week. I ran and got her Gatorade so she would drink something nutritious. She's a bit out of it (doesn't remember what I'm saying), nauseous (I called primary care to get her meds for it). And her oncologist has been out of town for a month.

 I'm not getting any help with answers on what to do. My dad is in denial so telling him the blatent truth of I think she's dying and we should get hospice involved is falling on deaf ears.

 The primary doc is all "oh well with pneumonia she's going to be sick." Hello, this is more than just a person recovering from pneumonia.

 Her oncologist to me isn't worth much. She's out of town and the backups didn't read her file enough to make a decision. And since my mom has been a difficult patient, the doc just dismisses her. All of her chemo has been pallative. I thought if I talk with the doc when she gets back, maybe I can get an idea on what to do next. Do I bring her in for a tumor marker test? She's too sick with chemo and hasn't had it in a month. How long can she be like this? Will someone assess her and tell us the @#$# truth that she's going downhill and she NEEDS hospice?

And through this all, all I want is for her to die with dignity, grace, peace, and painless. She's had a horrible life because of my dad. I want to give her some peacefulness and take over since he's useless for her.

 But no one makes a move--not my dad. Not her beyond "how long am I going to feel like this" (and in my mind I"m thinking she feels like that because this is it!). Not her docs. And I'm sitting here feeling helpless and like I"m pushing her to die.

 I don't know what to do.

angelsister

Hi maccupichu, sounds like things are really tough right now. I'm so sorry. Your mum has to decide to stop chemo when she's ready and her onc has to refer her to hospice. What does your mum want to do?

maccupiccu

She doesn't know. She's afraid. She knows she's tried and too sick to restart chemo. She's also tired of being alive with my dad. But she's afraid to die.

1Athena1

So sorry to read about what you are going through, maccupiccu. Have no words of wisdom.

angelsister

Does she have an appointment with her onc scheduled that you can go with her? Pneumonia is very difficult to get over for many people. As far as I know, hospice can only start when her onc refers after deciding to stop treatment. The main aims of hospice care are to sort out pain relief and help patients and families manage day to day. They can also provide in hospice care when people can no longer cope at home. But...it cant happen til your mum and her onc make the decision and referral. I really hope you can get your mum into a situation in which she can discuss her options with her onc. Very best wishes Steph x

Blessings2011

maccupiccu - I'm so sorry to hear this. I know it must be tearing you up inside. Unfortunately, there are things over which we have no control.

My mom was end-stage Parkinsons...and it was so hard for me to assess whether or not it was "her time" each time she went downhill. I watched her die a slow death, and it broke my heart. I couldn't change her condition. Fortunately, she was in a care facility, and had round-the-clock "comfort care" (palliative), and she did die with dignity.

Have you talked personally to someone in Hospice? A counselor? A social worker? Surely they have seen situations like yours many times before, and may have suggestions. Have you spoken to anyone in Adult Protective Services?

You are brave to try to step in and take over, but it sounds like the family dynamics have not been good for a very long time, and things don't change overnight.

Are you able to have any meaningful conversation with your mom about why she is afraid to die? Again, I would see if Hospice has anyone available to help you deal with not only your mom's issues, but your feelings of helplessness.

So sorry this is going on, and I SO I wish I had better advice for you...

Prayers for a peaceful passing for your mom, and for peace in your heart when the time comes.

elimar86861

Hi, mac.  I see you already found the caregiver's forum that I mentioned.  Will BUMP this, and hope some more jump in with info. & support for you.

leggo

Is there a social worker or patient advocate at the cancer center? They can be very helpful in situations like this.