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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...
Well, my latest update is rather frustrating. My mom has been refusing to take her blood-pressure medicine the past several days. I cannot for the life of me get her to understand that a BP of 170/90 is NOT normal. I am so frustrated. She keeps saying 170/90 is what's "normal" for her. I've tried explaining that her "normal" BP is actually hypertension. And that it was the untreated hypertension that led to the atrial fibrillation that led to the embolic stroke in her brain. She isn't having any of it....
She tells me that her treatment plan now has the goal of returning her to independent living in her own apartment in two weeks. They're trying to transition her from a walker to a cane. I guess the admissions director from the nice SNF stopped by again and told her that if independent living doesn't work out to give them a call, and they'll try to find her a bed.
She tells me she cannot deal with anything at all right now, that she can't handle it. Well, I guess if she's going to stop taking her meds, she won't have to worry about dealing with anything much longer.... Can you tell that I'm spinning my wheels here?? :arrow:
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Raven,
I have no words of advice. This has got to be wearing on you and so frustrating. I hope that you are taking time to take care of you. Have other family members been any help at all in trying to get her to take her meds? It sounds almost like she doesn't WANT to get better.
Raven,
Have you said that to her? Remember it is her choice and she has to deal with the consequences. Hold the course, my dear. When she talks about not being able to handle more, ask her if she's taking her meds. If she is not, say, I'm sorry I can't help you and change the subject. It sounds harsh, but she needs to be accountable. (You might ask which funeral home she wants you to call!)
Hang in there and take care of Raven! Remember that she has made/is making a choice; that is her prerogative. She then needs to live with the results.
I have not responded to this, because my parents were not abusive -- they were wonderful. My father died of a sudden heart attack at the age of 84, leaving my mother, age 88. I retired early to take care of her. When my father died my mother was physically weak but alert. She used a cane and was insistent that she be taken to the hairdresser every week and the nail salon once a month. She dressed for breakfast and was always ready to receive visitors and reminisce about the past. After my father died, she stopped living. She was still alive, but she wasn't living. She stopped walking and let herself be pushed in a wheelchair. She "forgot" her medicine and "didn't feel well enough" for hair and nail appointments. Then, she stopped eating. She just stopped. She didn't eat anything, no matter what we tried to tempt her with. She lingered nine days (with hospice care at home) and went to join Dad.
What I am trying to say is maybe your mom knows that hypertension could kill her and doesn't care. Maybe she thinks she is ready to leave. If that is the way she feels, there is not much you can do.
AH Raven.....This is all so common. Trust me you are not alone!
I suggest you lay it on the line.....in a nice way. Like kathy said. You explain her options to her and tell her that of course she can make her own decsions.....But in order for her to make a decsion she has to know all of the facts. She has to understand the consquences of her decisions.
Don't take meds...this will happen and the decsion of where she will go will be taken out of her hands....because A. She will be dead, and yes if thats what she wants its ok...but the proper servrices need to be put in place for that, or B. She will stroke again and maybe be paralyzed and agin the decsion will be taken out of her hands because you can't live alone paralyzed. Or another stroke will affect her speech and cognitive abilities and agin the decsion will be taken out of her hands. That no, you can not go live with her, thats not an option. Ask her if she see's it any other way. If she is coherant and able to make her own decsions then so be it......its what she wants. If she is not able to, any question about her ability to make sound decsions then you have another whole host of problems in terms of activatiing her health care proxy and to do that you have to prove she is not able to make safe decsions for herself.
Discuss it in an open way, really listen to what she is saying and if in fact she knows and understands the risks she is taking and wants to do it anyway then ther is nothing you can do.
Just make sure she is told the truth, the whole truth, the brutal truth before she makes the decsion not to take her meds, live alone ect.
Also, sometimes when its not a family member telling the whole truth they sometimes listen better because the baggageof family is not brought into it. some SW and medical personal really don't know how to do it...I do it often in my job. sometimes it works, sometimes it doesn't.
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I thought I would give everyone an update about what's going on with my mom. She was discharged this morning from the Skilled Nursing Facility to her own apartment. I called her this afternoon, and she sounded really happy to be home.
She's getting around pretty good on a walker these days. The right-sided weakness is improving, as is her speech. She still has problems finding the words she wants to use in a sentence, but she's found ways to compensate. The last time I asked her she was only refusing to take three of her medications, out of a total of nine. Time will tell, though, if she continues to take those six meds. I really doubt it, but that will be her choice, and I'm not going to push her about it anymore. She knows what the probable consequences will be of making such a decision.
I'm glad she's back in her home, although I'm a bit worried about her getting lonely. She's interacted with so many people in the past few weeks. But all in all, I think she's glad to be out...
Thank you so much for all your wonderful, loving posts and support. You guys will never realize how much you've helped me in this situation. You're the best!! :cheer:
Dear Raven,
Just wanted to say that I'm glad your mom is doing better, is home.
And I'm glad that you were able to make it through everything! Whew!! What a ride, huh?!!!
You're one of the good ones, bud!!
Janey
Thanks, Janey. Yep, it's been quite a ride these past few weeks. Ups and downs...
Mom has cut out another of her meds, a statin (cholesterol med), I believe. So now we're down to 5 out of 9 meds. She's absolutely refusing to test her blood glucose levels, and I imagine the oral diabetes meds will be next to go. I'm learning to accept that her noncompliance is out of my hands, that she's a capable adult who has the right to make her own decisions.
But accept it, I must....
Hang in there.... You're doing fine. You might ask her how she plans to die? The biggest problem is that having a stroke or heart attack does not guarantee that she will die. She might end up much worse than she is now, but still alive. Does she have a living will, is she DNR? (BTW, My dad warns us not to call 911 until we're sure he can't be resuscitated.
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kakuehl
Hang in there.... You're doing fine. You might ask her how she plans to die? The biggest problem is that having a stroke or heart attack does not guarantee that she will die. She might end up much worse than she is now, but still alive. Does she have a living will, is she DNR? (BTW, My dad warns us not to call 911 until we're sure he can't be resuscitated.
Kathy, thanks for the vote of confidence...it means a lot to me.
No, I haven't brought this subject up with my mom yet. To be honest, I don't know if I will or not. Because...I have tried it so many times before in the past few years, ever since she was diagnosed with diabetes and hypertension. Up until the time of her stroke, she had refused to take any of the medications her doctor prescribed. And I have gotten into so many arguments with her over her noncompliance. It just isn't worth all the stress and hard feelings right now.. Either that, or I'm just a total coward. I mean, what if I bring the subject up, she gets ticked off at me for the hundredth time, I hang up the phone with hard feelings, and then she dies?? That's my childish fear right now...
When she was in the cardiac unit at the hospital a few weeks ago, her doctor told me that her noncompliance with her treatment plan had been documented. He talked with her then about signing a DNR if she wasn't going to follow his instructions. She refused to talk to him about it. But the doctor told me that if she has a future massive stroke or coronary and ends up in a comatose state, then the DNR or "no code" decision will be left up to me. I understand that both of my phone numbers have been placed on the front of her hospital chart, so I can be called immediately if she ever codes.
I get so confused sometimes about it all. My mom doesn't want to deal with the possibility of dying, yet she won't take the meds that will enable her to continue living.
I get so frustrated. It was so different when my dad was dying back in 1992. He and I sat down and went over his final wishes. He made sure I understood exactly what he wanted to happen in the event he became incapacitated. He signed a health care proxy, durable power of attorney, and living will. And when he entered a coma from a massive stroke (he was in the last stages of terminal lung cancer, but the stroke is what actually killed him), I was able to follow his wishes down to the letter. I am so grateful to him for that...it made the responsibility on me a lot more bearable.
That does put you in a very difficult situation and I understand your unwillingness to bring up the subject. I know what I would do in the same situation, but my views are formed by my own experiences and beliefs. I would recommend you ask the doctors what the quality of life is likely to be if a resuscitation is attempted. I'm not sure living on a vent, being fed through a tube and unresponsive it really "living" but I've seen families insist on it because somehow they can't let the parent "go." And of course, my dad has made his wishes very plain. (You're right it does make it easier.)
Hey Kathy and Raven!
You guys are absolutely right about people needing to be clear and specific in what they want/don't want as far as dying goes.
It is a shame that more people can't discuss these things. I am the guardian of my mother's estate and am the one who will be making her health decisions should she be unable to communicate. It is easier knowing what our loved ones want. So many times people just expect us to know.
Raven
Either that, or I'm just a total coward. I mean, what if I bring the subject up, she gets ticked off at me for the hundredth time, I hang up the phone with hard feelings, and then she dies?? That's my childish fear right now...
I don't see this as you being childish; I see it as your mom not being able to face her death. And I know that's easy to say when we're not in the same situation but I would hope that I would not put my children through that kind of emotional pain and struggle.
But I think you're right not to confront her. Like you say, it just brings you more grief.
This is definately one of those "wait and see" situations that's so hard to deal with because there's so much "grey area" in it.
Praying for you,
Janey
Raven
You could bring up the DNR question very gently..as in " I understand the doctor told you about the DNR option, Iam NOT telling you what to do but want to make sure YOU underestand" If she starts to get uptight, drop the subject..tell her its ok the ball is in her court and she can do this anyway she wants. Just wanted to make sure she understood all thats going on with her health and you KNOW she is capable of doing what she thinks iis best.(haha)
Lots of times we tend to lecture the elders..."YOU NEED TO DO such and such"....YOU WILL DIE if you don't do such and such and what happens they shut down. It becomes a big control issue and the orginal reason for the convo is gone.
The one thing that I have learned while working with the geriatric popualtion is that often being the humans we are we look at the white hair, glasses, and walker and forget about the person that is really on thie inside. Many tend to patronize(not saying you do) , forgetting that these folks may be able to teach us a thing or two about life. I am currently working with a person that was very successful in is life but is now confused, weak and helpless. I have noticed that when the aides or nurses treat him as the confused, helpless elder he is is he acts out.big time. Combative ext. Give him the time to exspress, ignore the jiberish and attempt to REALLY listen you will HEAR what he is saying...He calms right down and is compliant again. He is a very sweet inteeligant man but he will tell you after a while...in a very difficult way ..don't trreat me like a baby..
Anyway, I went off on a tangent..I know thats not the case with your mother...but my point is to try NOT to succumb to her efforts to argue, understand that it may not be you personally she is being argumentive about.but her own issues. Seperate her non compliance from you....With the stroke and age she probaly is NOT the same women she was when you were a child..but still has the basic feelings of wanting control. Give it to her as much as you can.
Did I make sense???:prop:
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kakuehl
I know what I would do in the same situation, but my views are formed by my own experiences and beliefs. I would recommend you ask the doctors what the quality of life is likely to be if a resuscitation is attempted. I'm not sure living on a vent, being fed through a tube and unresponsive it really "living" but I've seen families insist on it because somehow they can't let the parent "go."
Kathy, I think you and I probably share similar views on this. That's why the doctors put my phone numbers on the front of her chart, so they can get a "no code" authorization from me in the event she isn't responsive. The doctor already made it very clear to me what her quality of life would be like in the event of another stroke (which most likely will be a catastrophic one.)
I haven't done patient care in many years now, but I still remember all too clearly my patients who were in extended comatose states or vegetative states. Believe me, I have no problem with authorizing a DNR order if that happens to my mom. I'm just afraid to bring it up to her right now because I think she's kind of afraid that if she even thinks about it, it will "jinx" her in some way.
She has deep spiritual beliefs, as do I, about the afterlife. When I was 21 years old, I had a full-fledged near-death experience when I went into cardiac arrest. And I've noticed this past year that my mom has been bringing up that experience from time to time when we're talking on the phone. It seems to bring her some type of peace to be able to talk to me about it. I think she's doing a lot of thinking and sorting things out in her mind. Hopefully, we'll be able to openly talk about it one day soon...
dpen6
Lots of times we tend to lecture the elders..."YOU NEED TO DO such and such"....YOU WILL DIE if you don't do such and such and what happens they shut down. It becomes a big control issue and the orginal reason for the convo is gone.
Donna, as usual your advice is filled with wisdom and is so down-to-earth. I thank you for that...
You've hit the nail on the head. In the past, I think I've patronized my mom when talking to her about following doctor's orders and taking her meds. And you are so right, it then turns into a huge control issue between us.
I am currently working with a person that was very successful in his life but is now confused, weak and helpless. I have noticed that when the aides or nurses treat him as the confused, helpless elder he is is he acts out big time. Combative ext. Give him the time to express, ignore the jiberish and attempt to REALLY listen you will HEAR what he is saying...He calms right down and is compliant again. He is a very sweet intelligent man but he will tell you after a while...in a very difficult way ..don't treat me like a baby..
This is exactly what I discovered when my mom was in the hospital last month. There were a couple nurses that couldn't stand her, and one of them even threatened her and yelled at her. They soon discovered that if I could talk to her on the phone about whatever test or procedure they wanted her to have, that she would calm down and comply with them. It soon became really apparent to me that the problems the nurses were having with her were mainly due to the way they were communicating with her. They weren't taking the time to listen to her...they were just treating her like a little kid who was throwing a tantrum. She was having a hard enough time finding the words she wanted to use (expressive aphasia), and when the nurses would get impatient with her, Mom would get really frustrated and angry. I remember calling her room once, and hearing a nurse raising her voice like my mom was deaf. I later called the nurses' station and told them her hearing was fine, that she's super sensitive to noise and loud voices (she's a musician), and that all that was happening when they raised their voices to her is that she quit listening. I don't know if I was able to make my point or not to the nursing staff...I hope so. At least they were nice to me and didn't hang up the phone, lol...
Separate her noncompliance from you....With the stroke and age she probably is NOT the same women she was when you were a child..but still has the basic feelings of wanting control. Give it to her as much as you can.
Did I make sense???:prop:
Very wise advice here, Donna. Thank you again. I agree with you...my mom is not a child just because she's old and sick. She still needs to have as much control as she can muster now. And I don't think I should take that away from her. I think it will probably be best to encourage her to be as independent as she can be, at least for the time being. And, yes, you make perfect sense... :loveyou: