Great. Now parents blame me for how she feels

maccupiccu

As some have read. My mom got horrible pneumonia the end of January. Thus she had to stop treatment. But ever since then, she's felt horrible, weak, and in pain. All because someone at the SNF said "maybe you didn't have pneumonia" now they're hell bent on she never had it, her stopping chemo for three months, and her not being able to walk, etc. is ALL my fault. She's blaming me. My dad is blaming me.

I'm so friggen fed up with them. She gets abused, neglected by him. He refused to let her go to the doctor. I call her and she sounds like she's on death's door with her cough. Her lungs are in pain. There is fluid built up. They put her on vancamycin, azithromyacin, and zostra. She's obviously sick as a dog. She cries that she doesn't want to ever go home to go to the SNF. Then I get a call at 5am to pick her up and get her out of the SNF. She was never the same. Her legs are giving out, she's weak and in pain and now they are both blaming me. Ever since she went to the ER her life went to pot and it's all my fault.

 How does other caregivers deal with the difficult and anger directed at them when all they are trying to do is help?

 Yes deep down inside I know this isn't my fault. It was die of pneumonia or die of her cancer. The bottom line is after 6 years, her cancer is advancing. The oncologist won't do squat except blood tests and routine visits. No pain meds. Nothing. Her primary gave her water pills to get the leg swelling. If it doesn't go down, how about saying that either her cancer is causing this and PET scan her or check her heart for congestive heart failure. SOMEONE speak up beyond me and solidify that she is dying because quite frankly, two parents blaming their daughter is just getting beyond words ridiculous.

Now they aren't talking to me unless they yell. Just like when I brought my son to the ER for severe RSV. All of the docs and specialists said he was going to die that good thing we brought him in. My parents? No, the kid isn't sick and it's my fault wasting everyone's time and money.

Unbelievable. 

GottaloveNED

Hang in there. It's easy to be discouraged when our families seemingly turn on us. It's easy to say "take it with a grain of salt" but not so easy when it's directed at you. Take a break, take a breath, concentrate on how you have done what you could, even if they can't see it right now. Perhaps someone with more experience in caregiving can offer more specific advice. All I know from dealing with my family is, let them get it out, forgive and forget to the best of your ability, and move on. I'm getting better at realizing when I need to step back and get perspective before I dive back in. I sometimes can handle people better by responding in my head, even if I feel I can't say it out loud. Edited to add: sounds like you also have your hands full with your son. Don't let the issues with your parents cloud your judgement with him. Always do what you think is right with your kids and ignore what they say.

Kicks

Seems like it's time to get an Elder Advocate for her or at least a visiting nurse/home health care nurse in to help your Mom (and Dad). You live in a large town so if you look there should be organizations that can advocate for her. Doesn't the facility she goes to have a BC Navigator who can help? A second opinion would be in order too probably IF her Dr is not trying to manage pain for QOL. If they (or you) have a religious home, there can often be help there. Are there other relatives?



I lost Mom over 30 yrs ago to Aneorxia and Daddy and I were united (along with my Hubby) in doing everything we could to make her time as quality as we could.



Wish I had something I could say that would make everything great but I don't - you and yours will be in my prayers.

maccupiccu

Thanks for listening. The main issue is they have always been in denial with her disease. Both of them. She thinks that cancer as it advances and you die is going to be go to bed and just not wake up. She has no idea the pain bone cancer, liver failure, etc. feels. I do (pharma ad copywriter). Dad hates doctors/illness so anger/denial are his defense mechanisms. Her not being able to cook, walk, go shopping, etc. --- basically be a functional housewife--- just urks him. He's anger by the minute because to him, she's useless and he's helpless. So that' why I step in. She clearly had pneumonia when I took her to the ER. The ER/hospital would have not admitted her/treated her if she didn't have it. They just don't get it. She's been off of chemo three months now. She was denied chemo even before she had pneumonia because her white cell count was off. But they see it as quick cause and effect--she was walking before the hospital--now that she's out--she can't walk anymore.

 I am very realistic about what is going on as well as their feelings and outbursts towards me. I am letting it go but at the same time, it hurts and makes me angry because he does nothing for her care. She was late stage breast cancer from the start because he wouldn't let her go to the doctor even though she had symptoms for two years prior. By the time she got to the doc the doc by looking at her breast she had cancer. It was that bad and for too long. I step in because he is unable to make a logical move. And then she begs me for help--I give it--then she turns around and blames it's all my fault.

It's hard. You love them, they are human, you don't want to see anyone suffer at all. They're your parents. And then all they do is put roadblocks. I don't want it to end with him denying her care that she needs (hospice, a nurse, whatever), her suffering to the very end, and both of them blaming me. I think it's to the point where he won't let me talk with her and the last time I did talk with her she was crying/saying she wants to die because of the way he is with her yet then turned around and said it's all my fault. I have a feeling I'll just get denied phone calls until one day he tells me she died. They did this when they put my dog down too. They didn't even call me to tell me they were going to do it. When I called to come over all I got was an angry "She's dead!" I just don't get the strong irrational behavior.

 For my son, he's ok now. He was very sick the first year and we almost lost him. Now he has minor things like chronic ear infections and viruses. Even with that I get backlash that I don't know what I'm doing.

 Anyway. I don't think there will ever be a right answer. It's just a shame that it's going to end on strained relationships and blame.

leggo

I personally, don't know how you do it. ANYBODY in my life that treats me with disrespect gets kicked to the curb. I know it's your mother and anyone with a good moral compass would lead them to do anything for their mother, but blaming you for the illness, the dog thing, not caring that their grandson was sick (that would be a deal-breaker if someone said something like that to me about my child). I think I might seriously consider just walking away. Frankly, and sorry if I offend, your dad sounds like a very nasty person. If your mother chooses his abuse over your care do you really still want to help? A parent's job is to make their child's life easier, not to throw their child's life into turmoil. Sounds like that's what they've done to you. 

dlb823

maccupiccu, I'm so sorry you and your parents, especially your Mom, are going through this.  I haven't been following your story and not up on your earlier posts, but what jumped out at me and what I don't understand in this thread is the "no pain meds" if your Mom is dealing with metastatic disease.  I'm not sure who that decision is coming from -- your Mom, your Dad or your Mom's MO? -- but it just doesn't sound realistic for her situation.

Again, without knowing your whole story, would Hospice possibly be a comfort for your Mom and a buffer for you at this point?    Deanna 

maccupiccu

I fully agree with you DLB and have talked with her oncologist about putting her in hospice. Onc said "she's stable so we're not there yet."

 I'm at a loss for words with her oncologist. At first I thought it was just my mom being difficult and misinterpreting things because trust me, she is the worse patient a doc could have (difficult, doesn't believe what she's told, fights docs, etc). But the more contact I have with the doc (who has asked "um you do know a lot, are you a nurse? So to me, she knows she can talk clear, sane, logical and honest with me to interpret back to my mom) the doc is just not doing what needs to be done beyond flowchart care. By flowchart care I mean the typical triage of "if patient fails abraxene, go to xyz". Beyond that, I get no solid answers except "labs are stable so we wait and see."

 If a patient is losing their lower limb function and they have a history of bone metastisis and spinal tumors, why not a PET or MRI?

 If she's in pain, advising her to go to the ER seems like poor disease management and cost control. What are they going to do? IV her with morphine and then send her home?

 If she's end stage anyway for 4 years way past any life expectancy (they deemed her to be alive 2 years; she's been alive for 6 years; last year she was supposed to only live 6 months), then to me, she DOES qualify for hospice care and according to anything I read in Medicare, hospice is for terminal illness with life span of 6 mo or less. And all that is covered even if they go beyond the 6 months. Doc just has to recertifiy the need for hospice.

I just don't get any of this. It's too late to change oncologist and parents wont' do that anyway. They are so angry with me, they won't let me talk with her (plus she can't come to the phone) so I don't even know if she made it to her last appt for blood work. The last I heard, she said what for, she can't get out of the house so she'll just skip it.

With her symptoms/condition, I firmly believe the oncologist should interviene with a hospice directive, nursing care, or social worker coming to the house. If they want to remain angry/hate me, fine. But get the woman some care.

 I don't know what to do.

elimar86861

I think there realy needs to be some outside intervention, if he is standing in the way of her getting pain meds.  Ask the hospital social worker how best to proceed.  Also, if you are able to get counselling as you go through this, get some, because they are throwing a lot of guilt your way and it would be a shame if any of it actually stuck.  Continue to do your best.  That is all you can do.

maccupiccu

@Gracie,

I totally understand and trust me, I hear it from everyone including therapists to let them go. But I just can't. I try to set boundaries by just telling them firmly "well I'll just let you go then" when my dad immediately started to scream that this was all my fault. I don't need to hear it like I used to when I lived with them. I think after 40 years and therapy and just seeing it over and over again, I know how illogical, insane, etc. they are. Blow off what I can. Don't internalize it. Yet I can be honest by saying how utterly shocked I am at their abuse and putting me through this. I"m not looking for a pity party. I think if anything I would love ONCE to fully get a logical reason why they are like this. It's like a car accident you can't look away from. I have been through a LOT in my life with them and it just saddens me they constantly view me as this POS person. I've never got into trouble (got a BA/MA), got good grades, never did drugs, married late, got my son late, worked hard, had good friends to hang with....never a problem. Yet they treat me like I"m some idiot, skeeving, harmful person. They have zero friends (dad wouldnt' allow it). Zero family now (mom hasn't talked with her brother since my grandpa died. He doesnt' even know she has cancer/is dying. Dad dissolved all his relationships since my aunt died). I am the only person they have so you would think they would treat me a little better when I care. I really do.

But I just want this over and all I wanted was for them to die with some dignity, peace, and as pain-free as possible. I"m angry for the way they parented. Appreciate the sacrifices they did do for me (I had it financially pretty easy; not rich; just they paid for my school and if I ever needed help). But you know, if this is the payment, I rather have last words be kind, loving, and go in peace. It hurts for me to realize it's going to end like this.

I know in the end, they've missed out on a lot with me. I tried to bring joy in their life but with their hate, anger, etc. I've excluded my son from now visiting with them. At least I know 100% that I'm a way better parent than they ever were.

 Sorry for babbling. Just needed some support/someone to talk with about them being totally illogical, delusional, and hateful. I know that when parents get old/incapacitated/near death, this is a common issue but I just don't think many have it this bad.

Shame.

maccupiccu

@elimar, thank you.

Curious, would hospice counseling for myself be a good choice? I've been through regular therapy and it got to the point where I truly felt the therapist didn't get the situation and I just hear the typical responses that you can read in a  Codependent No More Book.

I also would like someone to tell me what is going on with her body. Oncologist and her "take her to the ER" is such b.s. I want someone to explain medically what is going on. I'm reading end stage symptoms but this whole legs giving out and edema just baffles me. Part of my coping mechanism (due to being in heatlhcare way too long) is to be factually prepared.

leggo

Don't waste any time trying to find a logical reason. People are what they are. I tried to find an explanation for my mother-in-law's behaviour. I couldn't ...she was just a horrible person....B*tch almost ruined my marriage and got even uglier when she was dying. At that point, I just told my husband "her or me". Thank gawd he picked me...don't know what I'd do without him, but seriously, all she ever did was complain about how the whole world was to blame for her problems and bitch and moan about how she was all alone. I was so proud of my husband for finally telling her straight to her face that there was a reason for that. I know it hurt him to say that but when all was said and done, she treated him horribly throughout his life, was barely a mother and he finally had enough. The fact that it happened towards the end of her life is sad indeed, but ultimately, you reap what you sow. If nothing else, at least they made you realize what kind of parent you want to be/are....your son is lucky to have you and I'm happy to read that you aren't subjecting him to their abuse. Well done.

As for the leg edema....it's not all that uncommon in the end stages. When the liver and kidneys are no longer working at optimum capacity..it happens. I also worked in the health care industry and a lot of patients I saw in palliative care had a swollen leg/legs. Some even to the point where their skin was splitting. A diuretic might (a big might)  help and as far as pain management goes, truly, it does sound like her onc has dropped the ball. I'd take her to your family physician instead (if you can get her there). The blood work will not always give a true picture of what's going on. My blood work has always been good...even with liver mets and a dead kidney. Good luck to you and you do have my sympathy for enduring all this chaos.

maccupiccu

Thank you Gracie. Until one has been through it, most don't understand (the craziness of people). Thank you for the answer for the edema. Most answer I've been receiving in 3 months.

And thank you for commenting on my parenting. That's the one thing I am overly mindful of---how I treat him. I just take me back on how horrible I felt as a little kid and what I wanted from parents and I make damn sure he is treated how I wanted to be. Sure I make mistakes but even if/when I do, he gets an apology and retold how much I love him. Even at 3, he deserves that.

kayfh

We can't go back and be mothered and fathered the way we should have been.  We can only love and mother (and father) the children we are given.  Your son is blessed to have you.  The anger and pain your parents have caused you will recede, they will not live forever.  Kay

elimar86861

maccupiccu,  Once you are able to get your mom into hospice, you can take advantage of the couseling services for family members.  Most of what they do is see people in your situation, with an end stage partent, and hopefully they can help you thru' your particular difficulties.  I just felt like you would benefit from someone right there telling you everything IS NOT your fault, you know?

But seriously, if your dad is denying your mom pain medications, that is neglect and abuse and HE may need to be removed from the situation.  If he is truly that sadistic to allow your mom to be in continual pain, who cares what he thinks.  Try and get him out of there, by law or thru' social services.  Your mom deserves the peace of being pain-free and some dignity at the end, even if she put up with him all those years.  I hope you are able to give her that AND I hope she is able to appreciate your efforts.  

People reading this may think that she would want your dad to be with her for the final days, but his decision making abilities seem to be very messed up, so unfortunately that may not be the best for her.  She needs help and HE is not taking care of it.

Kicks

As far as what her Dr can legally tell you is governed by rather or not she (or her legal guardian) has given consent. Court can grant it or get the info. I have papes on file with all my Drs so that Hubby and Sons can call and get any info they feel they need or don't understand how I explained it to them. All my DRS offices are very emphatic that no info will be given to anyone who I have not approved unless court ordered.



There are Elder Advocacy groups all over - some times you have to hunt harder to find the right one but your parent do need help. About 10 yrs ago, I was helping out with an older lady through my Church. I finally had to go to legal sources to get her the help she needed. She was not abused in the sense of being hit but neglect/emotial is still abuse.

3monstmama

Hey maccupiccu

sending hugs your way.  My mother thinks the same goofiness about her cancer, ie that if we weren't "making" her do all the stupid treatment--chemo, surgery etc--, she would feel great and it would be sunshine and roses until one day she just fell asleep.  sigh. 

If you are on her paperwork as someone the doctors can talk to, you should be able to squeeze some information out of them.  I will say, if we had not gotten mother to authorize DH and I and my godbrother to talk to her doctors, we would be CLUELESS as she rewrites everything that is said to something she likes better.  We know this because DH went to her first appointments with her and when she told me what "happened" at the appointment his head started to spin it was so different than what had actually happened.  When she was first diagnoised I was furious at how she had gotten to Stage IV ovarian cancer without anyone figuring it out. Then after a few weeks of appointments I realized I will never know what she was told before the official diagnosis because she rewrites everything.  I can't remember--have you been to all the appointments with your mom so you can be sure what the oncologist has told her?  

No good advice other than to say that since you have a son who needs you, you must put yourself and your son first and let your parents do what they are going to do.  The stress isn't good for your son or you. 

 In the 4 months I've been dealing with my mother on her cancer, I have learned there is just not too much I can do to impact her view of the world or how she feels when she doesn't want anything to change.  What I have found that has helped me cope is: 1) setting up boundaries--no answering the phone when she calls after 9pm, not dropping everything to go over to her at assisted living, 2) finding a place to vent (another on-line group), 3) regular appointments with my therapist 4) rewarding myself with treats (dark chocolate! yarn!) and 5) lots of hugs from my kids.  

The one thing "good" out of this is that I have been smacked in the face with reminders of how she was as a parent and how not to be towards my kids.

Lots of hugs.

maccupiccu

Thanks. I am on all of their HIPAA forms for communication with docs. I agree, it's the ony way I can get the truth but honestly, I'm not a fan of the oncologist. I think my mom being a difficult patient has caused some difficulties. I find it a little hard to believe that all I can receive is nebulous "don't know". I mean, the woman is losing her mobility. WHY? At least say the possibilities--spine tumor, liver tumor, edema causing legs to be heavy. SOMETHING.

I talked with my mom on Sunday. Dad isn't talking with me (let the phone ring 8 times for her to get up and get it;  they don't have a cordless phone). She said she feels miserable. She sounds weak. Her cough is still there and she even left the hospital the first week of Feb with  fluid in her lungs. The leg edema isn't changing. She's living on Robitussin (dad's making her take it; I give up). She just says she feels horrible .She didn't go for her blood test to see what's up because she can't get out of the house/walk down the stairs. Do they ask me? No. Dad won't let me help now and refuses to allow me to take her to the doc. Instead--they're waiting for the neighbor kid to help. Nice.  Really nice. So frustrated with them. All I care is that they are taking advantage of whatever care is available. Can't get out of the house? Maybe get a nurse in, maybe she can draw blood from the house? Who knows. I just worry that if her mobility declines and she can't get out of bed then how will she go to the bathroom, bed sore care, etc? It's just @#$# ridiculous what is going on. I signed up for FMLA to help (I am allowed one day a week) but they refuse. I have it on "back order" in case I need it. If it's going to be recurrent leave then I have to resign for it. 

Yes, trust me, I have my outlets---the internet, some quiet time (if I can get it. With a 3 year old, that's hard to come by), asking my DH to do more including understanding if I get quiet (it's how I deal sometimes), and once in a while a cosmo martini. I'm just trying to make peace with their horrible decisions and do what I can when I can. I will always be there for them but it hurts they aren't taking me up on it in a reasonable manner. Now my dad's heart is going downhill so if it's not her, it's him. Just a mess, ya know?

Thanks for listening and offering advice. I'm still thinking of what I need to do with the rest of my life after they go. It's been a rollercoaster 40 years with them and now my life has changed for the better with my son. I want to spend the rest of my 40+ years happier and more fufilling than they could ever be. I feel just sad for them. They never lived a good life with each other or for themselves. What a waste. 

Kaara

maccupiccu: I discussed this with you before I think, but hospice is probably the answer for your mother right now.  They will ease her suffering and pain and give you the much needed break that you must have to cope with this.  Barring their willlingness to accept that help, then your only answer is to let go and let God.  Detatch from the problem and let it take its course.  Be available if they need or want you, but otherwise go on with your life.  Someone posted this quote on my facebook the other day and I thought it had real signifigance.  "You don't have to attend every argument or crisis that you're invited to".

maccupiccu

@Kaara. Best advice/saying ever. And you're right, my internal mode is always to fix things, especially them. (codpendence much?). And I've backed off. It has helped. I'm still sad overall but more for them than anything. I can't help them if they don't want the right/sane help.

Thank you all for listening and offering advice.