[RavenSong]

How do you do it? How do you deal with an elderly parent who is seriously ill or disabled, a parent who was both physically and emotionally abusive to you when you were a child? A parent who is most likely emotionally disturbed or mentally ill, yet eluded psychiatric diagnosis her entire life (as far as I know).

My mother had a "probable" stroke this afternoon. The paramedics called me from Tulsa, OK. But the docs, nurses, even unit secretaries won't tell me one single thing. They'll only verify that she's alive and that she's not currently in ICU or CCU; rather, she's on the Cardiac floor. It is a good sign that she's not in the Unit...

I am so ticked off at her. I've been begging her for over 4 years to comply with her diabetes treatment plan. I have cajoled her, pleaded with her, yelled at her, stopped talking to her, and finally just gave up. I've warned her for years that she's going to stroke out or have a major heart attack. She's totally noncompliant with any plan her doctor comes up with...I don't think she's even seen him for at least a year. Her blood glucose level was 340 today in the ER...outrageous.

Thank God that the paramedics called me and let me in on that much, plus the stroke info; the hospital staff won't even talk to me; they say they can't verify who I am. Don't they have any contingency plan in place in Oklahoma for out-of-state next-of-kin? All they keep saying is "HIPAA this, and HIPAA that". I am assuming they'll give me the courtesy of letting me know if my mom dies in their hospital. Hopefully that won't be a HIPAA violation.

I have not seen my mom in person in over 17 years now, although we talk every single Sunday afternoon on the telephone. Then I just go on my merry way, thinking that my duty is done for the week. I never forget her birthday, Christmas, Mother's Day (except this year, long story...). She never forgets me on those days either. She tells me she loves me...and I believe that she does to the best of her capability. But we cannot be in the same room together for more than 5 minutes before the walls come tumbling down...I am talking World War III.

I am dreading the call from the hospital social worker...I know that it's coming. I do not want to take care of my mother, no way. I do not even want to go to Tulsa at all, even just to sit by her hospital bed. I am so torn up inside.

My very favorite aunt by marriage (my maternal uncle's wife) died about 5 weeks ago, on June 26th. She was everything to me, and she was also one of the very few people in my family who was totally unafraid of my mother. She was my mom's nemesis; they were only a few months apart in age. When she died, she was surrounded during the last week by her loved ones: my uncle, my cousins, the grandchildren, and a great-granddaughter. And I'm scared to death about how I can possibly tell my uncle, my mother's brother who loves her very much, that I don't want to go to Tulsa. Why can't I find it in myself to do what my cousins did only five weeks ago for their mom? I just don't know how to handle this.

Thanks for letting me vent. I'm going to bed now, I think...

[djvj]

raven, you can't "find it in yourself" to do what your cousins just did because your mother was not like your aunt; you describe them in fact as polar opposites. and your relationship to your mother was a very different one than your cousins had with their mother. as a person who has had to sever all contact with my own mother, i understand the guilt you feel. but if this is not about a healthy mother/daughter relationship, and she is toxic to you (and possibly you to her), there are times that you have to draw a line and say "no - i choose my own sanity". only you can decide if that line needs to be drawn/kept, but DO NOT BEAT YOURSELF UP for your decision. as much as i know about you, you seem like an incredible human who has been through a great deal and come out of it with head and heart intact -- and on top of that, you find the strength to help others benefit from your experiences. as adult survivors who have had to place strong boundries on our parents, it can be sooooo easy to get sucked back into the "why can't we/she/i..." and that fantasy of resolution that we all carry...and this has got to be the tests of all tests!!!!! i im'd you as well, but just know i believe you have all the answers in your heart; that you will do what is best; and that no one can decide what that is but you.

BLESSINGS, my new friend. my heart is with you
vj

[xxsurroundedbyxy]

Raven~

I am so sorry that the infamous "daughter guilt" has made its way into your world. I'm going to say a prayer that your mother recovers without needing family care. Could you arrange for home-healthcare people to come tend to her needs until she recovers fully? How is she financially?

Don't feel alone. Brandy recently posted a thread that sounds so much like yours (elderly mom is ill, lives far away, bad relationship, and not the type of person to make you WANT to travel to care for). Here's the thread:
Elder Care...I need to vent.

Read it. There was good advice and you could always PM Brandy if you needed a shoulder to lean on as she has been/is in your shoes.

You'll be in my thoughts and prayers,
Kim

[Tazer]

I am so sorry for your recent loss as well as the issues you are dealing with concerning your Mom. I can't relate simply b/c I have a wonderful relationship with my Mom and she is in excellent health. However, I feel your pain and wanted to say you're in my thoughts. Tracy

[JustPeachy]

Raven, I could have written your post, though my mom is not (yet) in need of caretaking at the level your mom is. I dread the day she does, though, and feel it is coming soon. I don't think I can do it.

I wish I had answers for you, but I don't other than to say you are not obligated to care for your mom and really logistically, you can't. Also, it seems she requires a level of care that only a professional should be providing (medical and/or mental health-wise). Even if you were there for her, it probably would never be enough in her eyes, and she would find a way to sabotage the care you would give her anyway. THAT is why you cannot do what your cousins did for your aunt. In addition, your aunt had healthy loving relationships with them. I know how it is to lose such an aunt. I had one myself and she was really my mom to me.

I'm sorry you are going through this. I can totally relate, and know how hard it is.

[dpen6]

Raven,

How are you measuring being a good daughter? If you can't go sit with her and it sounds like you have some VERY good reasons to feel the way you do, then try to do what you can do from afar. Call in the local elder services, set up what ever you can and only do what you really can only do.

You will be judged by anyone and everyone that has an opinion(kinda like adoption) so you need to do only what you can do to protect yourself.

If finances are not a problem you could hire a case manager that can do a lot of the "daughterly thing...setting up md appoinments, checking meds ect.

Do you have a sibs that can help out?

[RavenSong]

I just want to thank you all for caring. When I'm tempted to think that I'm all alone with my problems and thoughts, I come here to the forums....and I know I'm not alone.

VJ, you spoke of the fantasy that we carry as adult survivors of child abuse. And you are so right... When we were kids, we thought it was our fault, that if we changed something, got better grades, said the right thing, were better human beings, then maybe Mommy or Daddy wouldn't have to be so mean. And then we grow up and find that we still somehow think that if we were just better people, made more money, had a better career, achieved greater goals, then maybe Mom or Dad would give us their approval. Boy, it never ends, does it?

I set boundaries with my mom, very strong boundaries. I never hesitate to say "no" to her, and I say it often. When she is being hurtful or mean, I put her in "time out" and refuse to play the game. And then something happens when I see her vulnerabilities, her fears, her needs, her pain, and I absolutely melt into a pile of Jello. It's like I'm that 4-year-old kid once again, crawling up onto her bed with a box of Kleenex to dry her tears. "Don't worry Mommy, I'll protect you. We'll be okay. I won't let anybody hurt you."

And that is exactly what happened today when I talked to her on the phone. My heart crumbled and broke with the pain and love I felt for her. I wanted at that moment more than anything else in the whole world to be by her bedside with a box of Kleenex. (I'll post about my day's experience in a bit on this thread. I have to take a short rest first, though.)

Kim, "daughter guilt" is a good description. I think a lot of the guilt I feel right now is probably pretty universal among all women in our society. We're the caregivers, the nurturers, the nursemaids, the daughters.

Thanks for the link to Brandy's thread. I am going to go read thru it in a bit. I had forgotten how she is dealing with the same problem...thanks for reminding me!

Tracy, you are blessed to have such a wonderful relationship with your mom. Thank you so much for your encouragement!

JustPeachy, what you write touches me. I have been dreading this day for years now. What's strange to me is I thought beforehand I would know exactly what to do when it arrived. I had it all planned out in my head, what I would say and what I would do. And now that it's happening, I'm having really unexpected feelings about the whole thing.

Donna, as usual, you have such wise and rational advise. A huge part of the problem I'm having is the lack of financial resources. It's all I can do to hold onto my house right now. And all the government cuts in social programs (especially Medicaid and SSI) that have taken place the past few years are really going to affect this situation. My mom is on Social Security retirement benefits, and the social worker today said that a fixed income of $1000 per month is too much to qualify for Medicaid. I have a feeling there are going to be a few struggles with red tape and social workers before solutions are found.

Anyway, just wanted to thank you all. I'll be back in a little while and post about my day.

[dpen6]

Raven,

Don't just go by what the SW says in the hospital. Call the local elder services in her community, they may be able to give you other options. Its like everything else, you can get someone who will go the extra mile for you or you can get someone that is just filling time.

I don't know where you live but in my state they have a program called elder foster care or something like that(can't remember the actual name.hey I am 51 now!) that will admit someone into an assisted living and use their SS benefits.

Their is also adult Day care if its needed.

Good luck and keep us posted.

Donna

[Jackiejdajda]

Raven.. I am so sorry..

I could not go near my mom when she was near the end.. I did but got out of there fast..
My dad was much more difficult tho as he was in a home for years..

I hope and pray you can work your way through this without having to give more than you can give..

We do the best we can.. no blame..

Jackie

[djvj]

raven,
i know exactly what you mean when you talk about seeing mom vulnerable and disolving into a puddle of love...it is the same for me. it took me 13 years of therapy to see my mother as a very sick person and get past my anger and grief to access my empathy and love for her, as it seems you have for your mother. as mother's ourselves, we know that it is simply not possible to NOT love your baby on some level, but it seems in both of our cases, our mothers simply are incapable of not being toxic to us. this doesn't mean our need for them or original love for them go away, which is why a situation like this is so hard.

the last time i relented and went across the country to see her (7 years ago) she tried to talk me into killing myself with her assistence - her reasoning was that i am so damaged and that it was painful for her to see me suffer for the rest of my life -- and she said something like "i brought you into this world and i will help you to leave it for your own good". she later physically attacted me (i was 33 years and froze, unable to defend myself) and the police had to be called by my sister to get me out of her house safely and with my belongings i had brought. I was bleeding and covered with bruises and it took me months to even function again...

in my case, i simply have NO CHOICE but to sever all contact. but i still dread the day i get a call like the one you got -- because i know that despite everything, a huge part of me will want to go. like you, i love my mother and always will, even though i also have alot of anger and sadness about what she has done to me both as a child and an adult. and while my head knows things will never change, my heart will never stop aching for her and wanting my "mommy".

i don't know what i will do when the time comes that you are now facing. i hope i will make a decision that is in my best interest that also takes into account my need for closure. your situation touches me more than i can say, i have been and will continue to think of you and send you my prayers. if there is ANYTHING i can do to help, including but also beyond emotional support, please let me know.

[paigeturner]

Raven,

My thoughts have been with you. It's hard under any circumstances to have our parents age. But to add all the guilt feelings into it...

You've been given some good suggestions here and I don't have much to add, but I wanted you to know that I've been thinking of you and sending good, peaceful thoughts your way.

[JustPeachy]

I think it's only natural that we still feel love for our moms, even if they are toxic to be in relationships with. I don't like to see my mom hurting, or in pain. When she is being abusive, I have to draw the line and set limits, but that doesn't mean I can't feel compassion for her and still find some love for the person underneath all the drama, sickness, lashing out, etc. I'm sure my mom lashes out because she herself is in such deep emotional turmoil and does not have the capacity to look inside and correct it. Therefore, she projects it out to others. Being her daughter, I get the brunt of it, but anyone close to her does too. I can get very upset and angry with her but I know there is also caring and love there. It's just that in order to protect myself, I have to keep a healthy distance. You can still love your mom and "be there for her" without actually having to be physically there. She may not see that you do really care, but you could probably be there 24/7 and she still wouldn't see it. Try not to let the "daughter guilt" get to you. You can only do what you are comfortable with. Anything beyond that is not good for your well being and won't do her any good in the long run anyway.

[djvj]

i also want to add that a HUGE part of my healing process has been learning how to be my own mother. therefore, when faced with an emotionally laden decision about relationships/boundries/life choices, i ask myself "if MY DAUGHTER was in this situation, what would my advice be to her be?"

for some reason, i seem to be able to access more self compassion and healthy boundries when i present things to myself in this scenario. it can help to look at a photo of yourself as a child when doing this.

and if this all sounds too crazy, i apologise, because i'm kind of a california hippie girl at this stage in life.

[kakuehl]

Raven, any updates? Do you have siblings? Are you listed as your mom's POA (That would probably allow them to talk to you under HIPAA)

I suspect that your family knows your mother very well and understand why you can't do what was done for your aunt. When the social worker calls, consider her a resource and gather as much information as you can; seek as many alternatives as possible so that you can make an informed decision.

[RavenSong]

I'm sorry that I've left you all in the dark about how my mom is doing and what's going on. I'll try to give you a rundown:

Thursday -- Mom calls ORU Prayer Tower, saying she doesn't feel well and asking for prayer. ORU calls Tulsa EMS when Mom's speech suddenly becomes slurred and she suddenly stops talking. EMS transports her to hospital as a "probable" stroke victim.

CAT scan shows embolic (ischemic) stroke in left hemisphere of Mom's brain. She loses all fine-motor control on right side of body and face. Speech becomes garbled, and Mom has "expressive aphasia", which means she knows what she wants to say but cannot find the word she's looking for ~ this is really frustrating for stroke patients. Mom is transferred from ER to Cardiac floor.

Friday -- After spending a fruitless night trying to get any information at all on Mom's condition from medical staff, they finally authorize me to receive medical information, and my mom okays the HIPAA release form. (I *think* I have durable power of attorney, but I need to remember to ask that specifically tomorrow when I talk to the doc.) For the first time, the hospital contacts me. Of course, it was the hospital social worker, wanting to jump the gun about discharge planning (after Mom being there for about 16 hours!)

Social worker probably thought I was totally insane. I was not in a good frame of mind after being denied any medical information since Mom was admitted. I admit I kind of let loose on the poor woman. I disclosed a lot of things I wish I had not disclosed. (I later called and asked that nothing I revealed be entered into the hospital record...she says it won't be.)

I called head nurse and was informed of all the specifics. She tells me that Mom is refusing all medications, except for a couple intravenous heart meds. They tell me she is being totally noncompliant (which turned out to not be true...they weren't taking the time to explain things carefully in a way she would understand, and they didn't take the time to listen to what she was trying to say.)

I finally get the courage to call Mom's room. When I heard her garbled voice, I became a pile of Jello. And then something weird started happening. She was trying to talk to me, but she couldn't find the words she wanted to say. And suddenly I felt like I was doing some kind of ESP with her. I knew what she was trying to say before she said it, and I could follow her line of thought. And she was SO relieved when I would ask her if she meant this or that. Her voice became that of a little girl, and she just gushed out, "YES, YES, YES!" And then I realized that we have always had this connection, as long as I can remember. I know that probably sounds weird to some of you... Anyway, I tried to get her to take her meds, but she wanted to hold off until she saw the doctor in the morning.

Saturday -- I am awakened by a phone call from her doctor. He sounds frustrated, and is already complaining about wasting his time and the hospital's resources on a noncompliant patient (only 36 hours have elapsed since she was taken to ER). He tells me she is refusing anticoagulants and insulin. Her blood glucose is hovering around 310.

He informs me that the stroke has been caused by sustained atrial fibrillation and atrial flutter...she has rapid ventricular response, a very dangerous heart condition. The blood clots (emboli) formed most likely in the atrium and traveled to the brain. Her EKG patterns are not good, and she stands a good chance of having a "catastrophic" stroke within weeks or even days.

He informs me that she is alert, her mental status is great. Therefore, he cannot force her to take the meds. If she is not going to comply with his treatment plan, he wants her to authorize a "No Code" or "Do Not Resuscitate (DNR)" order. He tells her what that means. She refuses to sign...she is scared out of her wits...she is frustrated, and she cannot get the right words to come out of her mouth. And nobody will take the time to be gentle with her, to be kind to her.

Doctor hangs up, and I call Mom. I carefully and slowly explain to her what is going on. And that's when I discover that the communications between her, the nurses, and the doctor are ALL messed up. When I tell her she needs to take the anticoagulant, she says that she IS taking it thru her IV. When I tell her that the staff think that she is refusing blood thinners, she becomes horrified...she WANTS the blood thinners, she thought she WAS getting them...she starts to cry. I go thru all the drugs with her, one by one. She agrees to take them all except for insulin. She is scared of insulin because of something some doctor told her last year. She will take an oral diabetes medication, however.

I call the nurse's station and talk to her nurse...who has an attitude right off with me. She tries to lecture me about my filial responsibilities, how we all must take care of our parents the same way they took care of us as children. (BTW, I kept my mouth shut when she said that.) I told her I wasn't interested in defending myself or my actions with her, that I wanted to discuss my mother's condition. I tell her that Mom has agreed to take ALL of the medications. And I begin to notice how the story of Mom's noncompliance is starting to change, according to who is telling the story. I now have five different stories that are varying quite a bit: one from the doctor, one from the head nurse, one from Mom's nurse, one from the social worker, and one from Mom. And I'm starting to wonder if these people at this hospital EVER try to get their stories straight, which starts my normal paranoia wondering what, if anything, is getting covered up here. Nurse hangs up, and immediately gives Mom all of her meds.

Saturday evening, I telephone Mom to say good-night and tell her I love her. And she tells me that her latest blood glucose level has come down 60 points!! She has taken ALL of her meds that day, and she has even allowed the physical therapist and nurse to get her up to walk around the room (with a walker). She's still resisting getting out of bed much, but she did let them walk her around a bit.

Sunday -- Phone rings...it's the nurse from yesterday...the one with an attitude who didn't like me. And she's being really, really nice to me, even laughing a little. She tells me that Mom's glucose levels have come down even further...that her response to the diabetes meds is really good. Her heart has been in sinus rhythm now since yesterday, which is great. However, they want Mom to undergo an MRI today...no way she wants that done for some reason. Nurse says that Mom's emotions are all over the place, changing minute to minute. She says it's like dealing with two different people, multiple personalities. Welcome to my world...

I'm transferred over to Mom's phone. The amazing thing I notice is her speech sounds a hundred percent better than last night. It's clearer, less garbled, and she seems to be using longer sentences. I talk to her about the MRI...she refuses to have it done. She had one the other day and does not want to go into that loud machine again. I don't push the issue...I can hear her voice rising. I do not want her to stop taking her meds, and if she gets ticked off at me, she just might dig her heels in. The MRI is a "no go".

Sunday night: I call Mom to say good-night and tell her I love her. Her speech still sounds improved, although she sounds a lot more tired than this morning. She's still taking all of her meds, but the good news is that the doctor decided she didn't have to have the MRI. She actually talks to me about the rehab facility that is in her near future. She tells me that she'll be there for three months or so. And then she starts talking about recovery and getting better. I think she's starting to associate the fact that she's feeling better with the fact that she's taking her medications...I keep emphasizing that to her in a positive way. There is a case conference tomorrow...I'm hoping the social worker, who thinks I'm insane, will talk to me afterwards. I'll let you know...

PS: William, if you are lurking here and reading my posts, you really need to call me. If you don't want to talk to me, would you please call Mom? She's asking for you....