Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: lurkernomore on May 31, 2010, 05:05:25 PM

Title: My father just died-now my body is rebelling
Post by: lurkernomore on May 31, 2010, 05:05:25 PM
On May 13th, my 77 year old father was helping my brother put a new roof on brother's garage. My father fell and broke his neck. For the next twelve days, I stood and watched as my father slowly died. I knew he was paralyzed from the chest down and on a vent, but it took me a few days to realize that he was still suffering and it was only machines keeping him alive.

After dad had gotten sepsis, C-Diff and his dialysis failed, my brother and I knew that we had to let him go. It was so heart-wrenching and yes, I am still wondering if I made the right decision or not. In my soul, I know I did, but my heart still wonders, you know?

The morning after my father died, I awoke from a sound sleep with really strong chest pains. I thought it was the costochondritis that I had battled before. But after taking a round of anti-inflammatories and getting no relief, I knew I needed to get to the doctor because I had funeral arrangements to make and well-just a million things to do.

I got to the doctor and he order an EKG and x-rays of my chest. He told me that my EKG showed that my SVT was a bit worse and my BP was sky-high, very unusual for me. He told me to take three Advil every 8 hours and he upped my Cardizem to 180 mgs.  It seems to have helped, but there is still a nagging soreness in my chest and back.

Could this be a flare caused by stress? Everything else seems to be a bit achy, so I am thinking flare. I did go twelve days with...possibly a total of six hours sleep, not able to eat and in the ICU room with my dad-freezing. It was very, very cold in there. The strange thing is that, until after dad died, I felt very little pain. Not even as I stood by his bedside for seven hours straight. It was as if God knew that I needed to be there, so I was just sort of numb. Now everything hurts and I miss my dad so very, very much. What do you guys think? Sjogren's flare or heart?
Title: Re: My father just died-now my body is rebelling
Post by: Autoimmunity on May 31, 2010, 05:16:41 PM
I just wanted to say I am so sorry for your loss.  :'(
Title: Re: My father just died-now my body is rebelling
Post by: Joe S. on May 31, 2010, 05:18:39 PM
I think your flair is stress related. A few months ago I went through some thing similar to this when my mother passed. It took almost a month for the effects to disappear. I am still working through the other reprocussions of her death. The best advice I can give is to take time to take care of you.
Title: Re: My father just died-now my body is rebelling
Post by: lynnmarie219 on May 31, 2010, 05:25:35 PM
First of all I want to say I am so sorry for the loss of your dear dad and am sending lots of gentle (((((Hugs))))) to you.

I cant say if its your heart or a flare....only your doctor can do that...but I can say that during periods of stress (emotional and physical and you have been through so much of both) that our bodies can definitely rebel and go into a flare. You were strong when you needed to be there for your dad and now your body has sort of just collapsed into a flare out of sheer exhaustion and sadness...its understandable.

Please try to take care of yourself as best as you can through the next few days through all of the arrangements. Allow yourself to mourn and allow your body to rest as well as you can.

Again...I'm very sorry for your loss...we are here for us if you need a shoulder to cry on....you and your brother are in my thoughts and prayers.
Title: Re: My father just died-now my body is rebelling
Post by: inga on May 31, 2010, 05:30:30 PM
I'm sorry for your loss.
Title: Re: My father just died-now my body is rebelling
Post by: Navigator on May 31, 2010, 05:44:25 PM
Oh I am so sorry for your loss. Take some time to take care of yourself. ...and yes I find that serious emotional upset brings on a flare but what it is in your case ...as said. .only a doctor can tell. 

Title: Re: My father just died-now my body is rebelling
Post by: COLLYGIRL on May 31, 2010, 06:21:57 PM
I am so sorry for your loss. Take care of yourself.

Colleen
Title: Re: My father just died-now my body is rebelling
Post by: magistramarla on May 31, 2010, 07:29:50 PM
I am also sorry to hear about your loss.
 I went through the same sort of stress when my dear mother-in-law passed.  My own mother had been abusive, so my MIL was the Mom in my life.  It was about seven months after her death that I was dx'd with the AI issues.  My hubby and I are sure that I was having mild symptoms for years before that, but that it was the stress of his mother passing that caused me to flare and to finally have enough symptoms to be dx'd.
 Take care of yourself, and know that you are on the minds of many of us here.
Gentle Hugs,
Marla
Title: Re: My father just died-now my body is rebelling
Post by: season on May 31, 2010, 08:31:29 PM
Did your doctor say anything about your lungs possibly causing the soreness in your chest or back. Could you have walking pnuemonia?

The reason i ask, I stayed with my mother in the hospital for two weeks and the air was so different in the hospital than being at home. I came home exhausted and my husband took me to the hospital the next day and i had pnuemonia. I hurt really bad in my chest and back and had no idea what was going on until the doctor examined me. It took two months for my chest and back to feel better.
Title: Re: My father just died-now my body is rebelling
Post by: Bucky on May 31, 2010, 08:42:15 PM
Sending you heartfelt sympathy in the loss of your father.  

I agree with Lynnmarie that the emotional and physical stress in a situation like yours, where you are holding a bedside vigil can and does takes it toll on someones health.   I hope the medicine the doctor recommended to you is helping.  I know from experience all the necessary arrangements that need to be made for a funeral, notifying people, etc.  Please remember to take care of yourself too . . . if you need to get away and get a nap, do so.  Especially since you have been doing without sleep . . . your body needs the rest.

May the love of family and friends comfort you in the days ahead.

Bucky

Title: Re: My father just died-now my body is rebelling
Post by: irish on May 31, 2010, 09:37:38 PM
There is, without a doubt, a huge amount of stress that goes with the injury, illness and death of a close relative. Even when we are healthy our body just falls apart for awhile. Takes some time to get back to normal.

For those of us with autoimmune disease the suffering we endure can be much worse. Obviously all the aches and pains of autoimmune disease can be jump started with this kind of stress. The heart thing is something else. No doubt stress can make this worse, but I would make sure to go for rechecks to make sure your heart and BP are settling down.

I am hoping you get over the guilt that you are suffering from. It is good when people have a living will or health declaration cause then the relatives don't have to go through the suffering and guilt associated with having to take someone off a vent or withholding fluids, antibiotics, etc. Most people are very slow to address the living will issues, but it is probably one of the best gifts a person can give their family.

You did the best you could with the hand that was dealt you. I would bet that if your dad could have talked to you he would have told you to do just what you did. Please stop agonizing over this and concentrate on getting your health stabilized. This is what your dad would want you to do I would bet. Good luck and my sympathy to your and your family. Irish
Title: Re: My father just died-now my body is rebelling
Post by: LeoLady on May 31, 2010, 10:55:02 PM
Losing a parent or in-law is so difficult.  Remember to let yourself grieve.  Whatever it takes: tears, screaming, meditation, whatever.  I've lost my parents and in-laws.  My dad passed suddenly 6 years ago and I still miss him terribly.  Strangest thing... I'm an avid reader and for 6 months after I lost him I couldn't read at all.  I lost all concentration.  With my brother, I had anxiety attacks for months.  With Mom, I wrote poetry for 2 years.  Grief, like death, is something most people don't think about or talk about.  Just whatever you need to do to get through, know that it's alright.  Grieving takes an awful toll on healthy folks so it's doubly so for us.  Remember that pain (emotional and physical) is inevitable.  Despair is optional.  Our prayers are with you and yours.
Title: Re: My father just died-now my body is rebelling
Post by: Patze on June 01, 2010, 04:36:16 AM
Hi Lurkernomore,

I'm so sorry for the loss of your father, and am also sending you some gentle ( ( ( ( ( H U G S ) ) ) ) ) my friend.

Oh yes, stress can aggravate any medical condition and I'm glad to hear that your doctor is on top of things for you.  

I hope that you feel better soon and take care of yourself -

Patze
Title: Re: My father just died-now my body is rebelling
Post by: lori on June 01, 2010, 04:51:24 AM
  I am so sorry for your loss, praying for comfort adn peace and for you to get feeling better too.

Lori
Title: Re: My father just died-now my body is rebelling
Post by: Reanne on June 01, 2010, 05:29:31 AM
I am sorry for your loss.  It's very sad to say goodbye to a parent, no matter what the age.  Now it's time to take care of yourself.  Did the doctor give you a deadline that you should be feeling by better?  If not, maybe you should give his office a call and let them know you still have soreness after following his directions.  Keep us posted. 
Title: Re: My father just died-now my body is rebelling
Post by: Seeker on June 01, 2010, 06:02:30 AM
I am sorry for your loss.  My wife lost her father in January of this year.  She is still going through the grieving process.  The stress of her loss has affected her health also.  I hope you are getting the suppport you need from your family.  May you have better days in the future.

Seeker
Title: Re: My father just died-now my body is rebelling
Post by: Cheryl on June 01, 2010, 07:02:09 AM
In addition to your grief, you are carrying a heavy weight that you need to release.   There were no options for you when you and your brother made the decision to let your dad stop suffering.
 
I'm so sorry for what you have been through the past few weeks (and the toll it is taking on your health).   I know the pain of losing parents, and you have my sympathy.  Please allow yourself to grieve without guilt. 

You are in my prayers.
Cheryl
Title: Re: My father just died-now my body is rebelling
Post by: Cricket on June 01, 2010, 07:08:56 AM
I am very sorry for your loss.   I lost my dad last year  and from the stress started to get migraines, one so bad I was hospitalized for 3 days.  The week before the 1 yr. annv. of his death got another migraine for 4 days.  So the effects of grieving last a very long time, I wonder if it ever ends.

Gentle Hugs,
Cricket
Title: Re: My father just died-now my body is rebelling
Post by: genko_b on June 01, 2010, 07:56:39 AM
Dear Lurkernomore:

So sorry to hear about your father's passing. You've gotten plenty of good advice here, not necessary to repeat, about dealing with your father's death and also your body's reaction. Please take all the time you need to grieve and to care for yourself at this time.

As I read your post I was struck by the circumstances of your Dad's fall, and how amazing it is that at 77 years old he could be active like that, helping your brother with the house. What a blessing his life unfolded in a way that made that possible. Since we all have to go sometime, if I could choose a way to go, that would be very high on my list. I'm sure he felt blessed to have you and your brother in his life, and over time his love, which continues, will sustain you.

Genko
Title: Re: My father just died-now my body is rebelling
Post by: harrigan on June 01, 2010, 08:44:11 AM
Lurker, just wanted to say how very sorry I am to hear of your loss.  What an awful shock and stressful time you have had.  No wonder you are suffering now.  I am so glad you remained well enough to get through all you had to manage at the time, but not surprised you are dealing with the aftermath. Thoughts are with you - take care XX Ailsa
Title: Re: My father just died-now my body is rebelling
Post by: Sweetgirl on June 01, 2010, 09:33:42 AM

I am so very sorry for the loss of your father.  The fact that it was a traumatic accident that led to his death surely played a role in upping your stress levels quickly, which would result in increased symptoms. 

No words can make things right again, but hopefully the support you are getting from this forum, family and friends will help you through it.

My sympathy to you and yours.

Kristine
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on June 01, 2010, 01:29:47 PM
I just want to say how very thankful and blessed I feel for this board and for all the loving, compassionate responses and replies. Thank you all so very, very much.

I do believe the doctor was right and that he made the right call. He upped my Cardizem (heart meds) to 180 mgs. and it seems to be keeping my tachycardia slowed down. I think that my heart had just been racing for a good while and that is what led to the soreness all the way through to my back. It has been a while, but I remember now that I have had racing of the heart before and then the soreness followed.

I also believe I am in a bigtime flare. My joints act all angry and irritated and pretty much everything on my body aches and/or throbs. I think it is just a delayed reaction to all that has been going on. My body knew when it had to be strong and it allowed me to go and do what I needed to do. Now it is letting me know that I need to slow down and rest it and I am doing just that.

Yesterday and today, I have sort of screened my phone calls and stayed at home and allowed myself to be lazy, to mourn and just remind myself to take some deep, cleansing breaths. I wonder now if I even drew a deep breath the entire time I was staying at the hospital with dad.

As a person with both fibro and Sjogren's, I am all too aware of how painful a simple hug can be for us. We tend to avoid the hug. But I want to say this and it is just my feelings right now. I never, ever knew just how precious a hug could be until I saw my father lying in that hospital bed, paralyzed and it hit me that, even if he lived, I would never be able to hug him again and have him feel it or have him hug me back. So if you can, go ahead, take a pain pill if need be, but grab someone near you and hug them. Hug them right now, while they are there with you and they can feel it and they can return that hug. Because we just never know how precious something is until it is no longer there. Lord, how I miss you dad.
Title: Re: My father just died-now my body is rebelling
Post by: Nans on June 01, 2010, 02:50:15 PM
"The Lord is close to those whose hearts are breaking."  Ps 34:18     He is hugging you now.  God bless.
Title: Re: My father just died-now my body is rebelling
Post by: sleeeepy on June 01, 2010, 03:37:26 PM
I agree that the stress can make our pain a whole lot worse. I was 27 when my mother passed away(she was 65) and when she passed,  I felt a weird electrical sensation that ran from the top of my head down to my feet, as if my BODY was being damaged by the shock and sadness.  My body has never been without pain since. At the time, I also had a newborn baby so, add stress on the body from pregnancy, raising the baby, and death of a parent all with in a short period of time and it doesn't equal anything good. i then lost my dad a few years later...sigh.  Try to take extra good care of yourself over the next couple of weeks and try to get out of the house....even if you just sit outside to enjoy nature. Hopefully your body will calm down with some rest.  Take care....Mary
Title: Re: My father just died-now my body is rebelling
Post by: navydad on June 01, 2010, 04:54:23 PM
I still miss my dad,,, and I do believe what you are feeling is a major flare,,, how can it not be after watching it build up for 10 days,,, sorry about your dad,,, its a horrible thing to go through
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on July 29, 2010, 11:09:06 PM
I want to thank you all for your wonderful, compassionate replies. I am afraid that things just continue to get worse here. Two days after we buried my father, my mother had herself delivered to the hospital via ambulance. We figured she would do something like this, because as unbelievable as it sounds, she has always resented anytime we spent with my father, (I think I mentioned they have been divorced for 19 years) Since he lived twelve days after his fall, my husband and I knew she would be very..upset, to say the least.

She suffers from end stage emphysema, CHF and an enlarged heart and she sat there the whole time we were at the hospital with dad, did not use her oxygen, chain smoked and did not take her heart meds. And voila! She wound up nearly killing herself this time around. They gave us the option, upon her hospital discharge, to send her to a hospital rehab for two weeks, because otherwise, we would have to move in with her and give her 24 hour care, She refused to consent, so for the following month, I was there with her, night and day.

She finally got well enough for me to return home, but by that time, my nerves were shot. My supraventricular tachycardia was out of control, as were my blood sugar levels and, for the first time in my life, my blood pressure is high now. I am just at a loss, because my doctor has told me that if I do not get some help with her, she is going to outlive me. But I am all she has, so I do not know what to do. She refuses help from anyone other than me and she has needs that I just cannot meet anymore,

Basically, she just sits in a chair all day long. She cannot carry out her own garbage, go to the mailbox, fix herself any meals, let alone drive herself to any of the many, many doctor's appointments she has now. I mentioned to her that there IS help and how much it would take off of me. Such as Meals on Wheels, which she poo-pooed by saying she heard the food was crappy. I told her about an organization called Ethra, who provides many services, anything from light housekeeping, cooking, even delivering her to her doctor's appointments and she refused, saying she would not ride with a bunch of strangers. She just demands I do it all and well..I simply cannot do it anymore. I know she is old (75) and I know she needs help, but she refuses to allow anyone but me do anything for her.

Even picking up her scripts, which could be done by delivery if she would simply change to the pharmacy right at the bottom of the hill from where she lives is not something she will consider. My doctor says she is manipulating me and I believe he is right. At this point, she really needs to be in a nursing home. But in my state, if a patient is still considered "of sound mind" they have to consent and that will never, ever happen. So please, if you are the praying kind, remember me in your prayers.

I still do not feel that I have had the proper opportunity to mourn my father's death. Plus I am now in charge of taking care of his dog, who has seizures. It is just all beginning to be too much and she really refuses to believe there is anything at all wrong with me. I have an appointment with my doctor a week from today and he is very upset, as he has had to put me on yet a third pill, just to try and get my heart rate below 100. My hope is that he will be upset enough that maybe is I ask him to, he will contact my mother's doctor and just let her know that other arrangements have simply got to be made. I am beyond physically tired and aching. I am tired all the way down to my soul and I see no relief in sight. So sorry for the vent. I just feel so alone and overwhelmed right now and it doesn't help knowing that really, my mother never really cared about me, still does not and yet she expects me to give up everything, move in with her and I just cannot and will not do that. Any suggestions at all for me? I need help so very badly.
Title: Re: My father just died-now my body is rebelling
Post by: Gerty on July 29, 2010, 11:32:42 PM
so sorry to hear about your loss take care of yourself  :'(
Title: Re: My father just died-now my body is rebelling
Post by: susanep on July 30, 2010, 03:19:34 AM
So sorry to hear about your loss, and all the things you are going through. My husband was very quiet this past Mother's Day, and it has been 3 years since his mom died. I have prayed for you.

susanep
Title: Re: My father just died-now my body is rebelling
Post by: Rhonda on July 30, 2010, 06:02:35 AM
I am so very sorry to hear about the loss of your father.  I know what a heart-wrenching experience that is.  Keeping you and your family in my thoughts and prayers.
Title: Re: My father just died-now my body is rebelling
Post by: ohiolady on July 30, 2010, 06:13:57 AM
You have to make some difficult decisions and let your mom know that you are too ill to be her caregiver.  You sound like the type that has always taken care of everyone else and now you must take care of yourself.

My thoughts and prayers are with you.

Anna
Title: Re: My father just died-now my body is rebelling
Post by: Sheltiemom on July 30, 2010, 07:07:29 AM
Dear lurkernomore,

First of all, sending you condolences on the unexpected and devastating loss of your dear dad.  That kind of situation can be extra-stressful, and hoping that you can find a bit of comfort in good memories of times spent with him.

As to the chest/back pain and soaring BP, one of the replies to your post suggested the possibility of a pneumonia, and checking this out might be a good idea just in case.

Another suggestion is, having worked for cardiologists in Biometrics (cardiac testings), it wouldn't hurt to get a repeat EKG and either an echocardiogram or stress echo done - just in case.

Best wishes and please keep us posted as to your health status.

Sheltiemom
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on July 30, 2010, 08:11:46 AM
Good morning everyone. Thank you for all the caring replies as well as the helpful suggestions. Right now I have no signs of pneumonia, not even a cough or anything of that nature. I am puzzled as to why, when my G.P. has added yet *another* pill to my arsenal that I have already been taking (such as Digoxin and Cardizem) he does not seem to feel the need to just send me on to a cardiologist.

 He knows that I have supraventricular tachycardia, and yet I have never had any other tests done on my heart, other than the EKG's he does right there in his office. I think that when I see him this Thursday I will ask him about this. I just don't feel that it should require three different pills...especially when 100 beats per minute is as low as he can seem to get my heart rate to. I know that the heart is a muscle and, as he explained it, as hard and fast as mine is working and pumping out the blood, it will just wear itself out at this rate.

As for the pain, I have practically always had some type of chest pain. Because when your heart is beating out of control, it will cause pain and soreness. Sometimes, after a bout of really fast beating, the soreness radiates clear through to my back and I am left weak as a kitten.

Add to that, the fact that while I was staying in the Surgical Critical Care Unit of the hospital, where dad was, they kept it so very, very cold in there, that I began experiencing joint pain in my right elbow. I know, it's just an elbow, but it is on my dominant hand and most of the time now, it is puffed up, red and hot to the touch. I am thinking it is Sjogren's-related arthritis. Now THIS, my mother can see! But when I mention it to her or show it to her, she just goes "eh," and ignores it too. I asked her to read just a short magazine article regarding Sjogren's when I was staying there with her and she just said "you know, I just cannot make myself get interested in this stuff, with all that I have wrong with me." Really, I swear she said that.

All I know is that this is a woman that my husband and I have cared for, nursed her through thyroid cancer, delivered her to her radiation treatments, stayed with her after her surgery, then two mini-strokes, heart block and several emphysema-related hospitalizations and it is clear to me now that she does not now, most likely never has, had any feelings for me, other than relying on me to bend over backwards to make every single thing in her life right again. She will intentionally make herself sick and then it is my job to fix it, to make her well again. I just can.not.do.this.anymore-and yet without me, she has absolutely no one else. Because she has been so mean and selfish throughout her entire life that she does not even have a friend to call and check on her on a daily basis. That too, is my job. I feel as if I am going to just collapse under the weight of it all if something does not give. Any suggestions at all...anyone? I really am to the point of desperation right now.
Title: Re: My father just died-now my body is rebelling
Post by: Suzy on July 30, 2010, 08:43:40 AM
Hi There,

I am so sorry you are going through this. You are living the nightmare that I am afraid I will encounter one day...except it's my father and not my mother who is the selfish, narcissistic person who will probably end up old and alone. I can only imagine how you feel.

With my father I have learned that I MUST stand my ground and do what's best for me and my family. There's no confrontation involved - I tell him what I am going to do and that's that. I just ignore his attempts at manipulation and ploys for sympathy. I have taken this approach long enough now that it works pretty well.

Don't bother to try to get a narcissist to have empathy - it's a waste of time. If you stand tall and tell her in no uncertain terms that you cannot do it all, then follow through, she will be forced to accept outside help. It doesn't have to be a fight. You are a grown woman and can tell her "No." She can't spank you or send you to your room anymore. ;)

Take care of yourself...
Suzy
Title: Re: My father just died-now my body is rebelling
Post by: genko_b on July 30, 2010, 11:06:30 AM
Dear Lurkernomore:

You are under a huge burden and no wonder your body is still rebelling. Our mother also refused to have any help other than family, except for a cleaning woman who came in twice a month and her handyman. My sister ended up living with her the last three years of her life, and giving 24-hour care. Our mother was a sweetheart, and my sister is strong as an ox and wanted to be there, but still it was a huge responsibility and took its toll on her. So I can only imagine how you must be feeling.

Suzy is right that you need to set boundaries and take care of yourself. Your mother has the right to make choices about her own life, but then she must live with those consequences. She does not have the right to make choices about your life - that is yours alone.

You may have hit on something when you said perhaps your doctor could talk to your mother's doctor. Perhaps she will hear what she needs to hear better from the medical folks. Your doctor sounds very supportive of you. Please recruit him to help you with this.

Write some notes to yourself and hang them on the mirror affirming your right to take care of yourself. Schedule time for yourself and when your mother insists you come over at those times, tell her you have something scheduled that cannot be rearranged. Which is true - you need that time to yourself.

Take care and keep in touch - we all care about you and will be sending supportive thoughts and prayers your way.

Genko
Title: Re: My father just died-now my body is rebelling
Post by: navydad on July 30, 2010, 01:34:22 PM
If you dont take care of yourself FIRST  you will be no good to anyone and your gonna be in worse shape then you are now,,, resting heart rate of 100 is a bit high for me,,, but of course I never went to med school,,,
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on July 30, 2010, 05:50:31 PM
Hi Suzy,
You are thinking right when it comes to your dad, it is a nightmare. Truthfully, I have been trying to take care of my mother off and on since I was 17. That was the time when she and my father began separating. She would stop eating, stay up for days and not take her heart meds and be hospitalized. And it worked, my dad would go home. Until the one time when he'd had enough and after 38 years of trying to please her, he left, moved three states away and they divorced. I feel as if I have had to "parent" her most all my life. It has gotten to the point that it's all I can remember.

But I have gone for three days now and not called her. I am not happy or comfortable with doing this. I did call the one and only friend she has left this evening though and she has spoken with her and she is as good as she ever will be. I guess I am just hoping that a light bulb will come on and she will realize that she is driving me away with her total noncompliance and refusal to do one thing that may take a bit of the load off of me.

But after reading your reply tonight, you are right. She is not only a narcissist, but a sociopathic one at that. When she wants to, she can charm anyone and this is how she gets around her doctors. Unfortunately, she has nothing to gain by trying to be nice to me, so she does not hide the nasty. But if I can just wrap my head around the reality, maybe I can learn that I am not helping her by encouraging this selfishness. And I have every intention of keeping that doctor's appointment on Thursday and going for it by telling him how much worse she is behaving. Hopefully he will speak with her doctor. If he won't I suppose I will just call her doctor myself. If the only caregiver she has is unable to take care of all her needs, then her doctor will have to do something, won't she?
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on July 30, 2010, 05:58:38 PM
Hi Genko,
I like the idea of the notes and the self-affirmation. I have been "parenting" my mother now for so long that I probably cannot think of anything positive to tell myself...but I can try and I need to try. I have a husband and sons and I would like to be around and still sane when and if I have grandchildren someday.

I will keep my doctor's appointment this Wednesday. If he does not see it necessary to call her doctor, then I will call her doctor and tell her the latest. And no one is saying (except for my mom, of course) that I cannot call this organization and get help with her transportation. I just wanted to get her permission/blessing/agreement and allow her some dignity and input when it comes to her care.

But now? She has pushed too far and too hard and I will call around and get whatever help is out there and available to me. I am over fighting this fight (and that is what this all boils down to is a fight) alone anymore. I want to try and see what life is like without constantly worrying and torn up. In other words..I want to see what happiness and joy feels like, at some point, before I die.
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on July 30, 2010, 06:03:29 PM
Hi Navydad.
Yes, I know you are right...in my head I know that I have to take care of myself first. I have just been raised and made to feel as if taking care of mom is what I needed to do...even when I had small children, she'd pull these stunts.

But I have gone three days and not called her. I needed the break and even though I have worried and it felt...wrong, to not check on her, I know she knows how to call an ambulance if need be. Lord knows she has done it before.

So I am thinking that my "caregiving" days, especially to someone who has never really been capable of caring or feeling anything for me, are drawing to a close. I am going to spend this week doing whatever I can to get some help lined up for her. Then I am going to try and take care of myself, my husband and enjoy or now-grown sons.
Title: Re: My father just died-now my body is rebelling
Post by: irish on July 30, 2010, 09:29:40 PM
This is a defining moment for you. It is time for you to say "no" enough, I will not be doing this anymore. I think the doctor was very honest in telling you what will happen if your lifestyle doesn't change.

I know that people who have met me and who read my posts probably think I am very hard core. I am hard core but it came with a lifetime of experiences that finally made me realize that I could not be "everything to everybody". For those of us who think that we must do things just a certain way or suffer the wraith of those around us life can be very tough.

The times comes when one has to rise up and say "I love you" (or whatever you need to say or do) but I cannot do this anymore. Your mother is being extremely selfish in her old age and I would guess that she had a lot of younger years in which she practiced being selfish. It is not your job to sit by her side to the bitter end. Oddly enough, we always feel like we will live with guilt forever if we don't do what a relative wants. The good thing is that there are places that relatives can go to get care. I hope that you can tell her that this isi now the time for her to move on. She cannot expect you to keep her life the way it has been all of her life. She will need to make some changes.

I don't know why some people are so demanding and selfish but I do know that we must treat them with tough love. So many times when we admit a relative to a nursing home, etc. they do so much better than we expected they would. They do not die and or linger in misery.. Usually they have been so lonesome that having people around and activities to go to makes their life worth living again.

Please, please, please get together with your brother and have him help you make a decision about the care of your mother. It is time for you to take care of yourself. Also, I would consider asking your brother to take your dad's dog to the vets to be put to sleep. Hard to do but again, one of those tough love decisions. Your health cannot take all this stress. Imagine the stress it is also putting on your hubby. Take care of yourself and live longer and better. Good luck. Irish ;D
Title: Re: My father just died-now my body is rebelling
Post by: Suzy on July 31, 2010, 01:02:57 PM
Lurkernomore,

I just read all of your new posts nodding my head the whole time. Sociopath and narcissit DO often go hand in had. I would say I definitely have that going on in my situation as well.

I am so glad you are doing what's best for you (AND your mom, if you really think about it). In my dad's case, "you reap what you sow," and you can't reap the rewards of having a relationship with your grown children if you didn't sow the seeds when they were growing up. I am just saying this in case you feel any twinges of guilt... ;)

On another note, how are you feeling? I hope you've been able to relax and take care of yourself so that you can enjoy your family. :)

Suzy
Title: Re: My father just died-now my body is rebelling
Post by: Joe S. on July 31, 2010, 01:20:24 PM
Give yourself some time. Everyone is different in how much they need. Be kind to yourself and take care of yourself.

My mother died in April and the flair that came after her death is just now starting to subside.
Title: Re: My father just died-now my body is rebelling
Post by: harlin on July 31, 2010, 01:29:51 PM
I am so sorry for the loss of your father. I too lost my father and let me tell you it is one of the worse things you can go thru.
Yes, I am sure stress is the cause of your flair.

God bless and many hugs for you, harlin
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on July 31, 2010, 08:10:30 PM
Update to all-I have had a quieter week, although I won't lie and say that I have "enjoyed myself." I have been so "trained" to check in on mom every.single.day that it has plagued me with guilt. My poor husband tried taking me out to eat to a really nice restaurant tonight and I wound up being nauseous and barely eating. Maybe, as some of my friends have suggested, I am doing this to myself, and no doubt, it may take years of therapy to undo what has been done but the immediate problem is what do I do with her right now?

After my husband and I got home, we were sitting and trying to wind down for the night, when mom called...at nine thirty. She said she was calling to check on me because I had not called her in three days (actually, today was day four, but who is counting, right?:)  I don't know why I bothered, but I told her I am not doing so great, explained to her about the blood pressure rising and the rapid heartbeat and next thing you know, she turned the subject back around to HER rapid heartbeat and how horrible she felt when hers acted up. I guess she forgot that we have exactly the same heart problems...the difference is that I really want mine to slow down and she accelerated hers by drinking black coffee and chain smoking.

Somehow, she got off on the subject of not having her scripts tonight because no one was picking them up for her. Yes, she called earlier today but I was on the phone with an old friend, so I did not take her call. I told her that in a case such as this, it would be handy to switch her scripts to the pharmacy just down the hill from where she lives, as they deliver. Cue her excuses as to why she will not change pharmacies.

She went on to whine about having to find a ride to her four different doctor's appointments this month and I brought up an organization who will transport elderly patients to their doctor's appointments. Cue excuses as to why this was not a good enough arrangement for her.

She went on to whine about her doctor's office telling her that she needs more protein in her diet and how she is not able to stand long enough to prepare her own meals. I suggest a program called Meals on Wheels and she went berserk, screaming into the phone for me to just stop trying to micromanage her life for her and WHAT IS MY PROBLEM?!!

By this point, I was in tears and telling her that I could not do this with her anymore. She says "what on earth are you talking about? You are doing NOTHING for me, except sit on the phone, trying to bully me into doing things and I do NOT need any help, I am making it just fine! By then, my heart is pounding, my fingers tingling, as well as the area around my mouth, I am sure from hyperventilating. We ended the conversation with her telling me that I need to get to the doctor, get myself some nerve pills and stop getting myself worked up over nothing. Then she tells me that she will call and check on me tomorrow.

My husband is getting out his BP cufff at this point, and checking my BP and heart rate and the pills must be working a bit, because it was not as bad as I expected, 143/72 qnd heart rate of 115 beats per minute. But still, the top number of the BP is too high and considering I am on three different pills to slow my heart rate down, 115 just is not acceptable. So Thursday, when I go to see my doctor, my husband is taking me and going back with me to explain to my doctor what a simple phone call from my mother is capable of doing to me.

I feel so dadgum angry and stupid for letting her get to me like this. I was only trying to think of some ways, and I told her this, to help her and make it so that I can get better too. She may not want to live any longer, but dang it-I do!!  Oh and as for her talking to me tomorrow, ain't gonna happen! She cannot hurt me unless I allow her to by answering the phone and right now, I am thinking that won't be until at least until after I have seen my doctor on Thursday. Please, if you are the praying kind of person, pray that I will be able to rest tonight and that I will learn how to ignore her attempts at making me feel so obligated and beholden to her. It is like drinking poison and then being surprised when it kills you. I have got to stop this and I know I do. I just do not know how to stop a lifetime of feeling responsible for her, even if it means shortening my lifespan. Has to stop, I know. I just really do not know how to turn off the guilt button.

Title: Re: My father just died-now my body is rebelling
Post by: irish on July 31, 2010, 08:11:32 PM
pardon me lurker, but I missed the one post before mine. I see now there were 2 in a row.

Good for you on making the change. You have a good start on asserting your independence and taking care of your health and your family. Sometimes we just do what we have to do---we can't win all the battles. Good luck and hope that blood pressure gets back down. Enjoy your family. Irish ;D
Title: Re: My father just died-now my body is rebelling
Post by: irish on July 31, 2010, 08:21:16 PM
lurker, Now I have to post you again cause I just read your new post. Man, you are really getting good in the way your are handling her. She sounds like a first class manipulator and a narcassist to boot. You are doing very well. Just think how much you did take charge of in that conversation before you got the screw driver lodged in your chest. You did good.

Every time you interact with her you will become more cagy and more able to round her off at the pass. She is mad now because you arne't conforming to her way of doing things. Good job. And you have got a very nice hubby ---he is looking out for you. God Bless him!!! Take care now and take deep breaths. Irish ;D
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on July 31, 2010, 08:37:03 PM
Hi Irish,
Thank you so much for replying. I think it was Suzy who confirmed for me that my mother is a sociopathic narcissist and it has never been more clear to me than tonight as I sit her. In fact, as I reflect over my life, I am able to recognize now that she probably loves me as much as she is capable of loving anyone. Which sadly, means not at all.

The anger and vitriol towards me comes, I believe, as a result of her jealousy of the closeness I had with my father. I know I am no therapist but it does seem to be coming in a lot more clearly now. I cannot do a thing for someone who has sat down and given up on life but I can kill myself trying. And I have not even had grandchildren yet, so I am nowhere near ready to go anywhere yet!
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on August 06, 2010, 09:12:28 AM
Well, the latest news is that I saw my doctor yesterday. He entered the room and we spoke briefly. Then he told me that he wanted his nurse to do an EKG to see if the latest and third medication he had put me on was helping lower my heartbeat and get the tachycardia under control.

She did the test and he came back in and said "FINALLY," with a big grin on his face! I thought it must be great news and that maybe my heart rate was lower, closer to the perfect 70. Then he told me that with the new medication, we had been able to get my resting heart rate down to 100 beats per-minute. Ummm, that may be better, but even I know that a resting heart rate, when a patient is taking three different meds to lower it, should be better than 100.

I told him that it was most likely "down to 100 BPM because I had not spoken with my mother now in about a week and I was sure that if I had, it would be right back up to at least 150 BPM again. He asked me why and I told him as much as I could, how erratic and unreasonable my mother's behavior seems to be getting and how, even now, mom expects me to continue doing everything for her, refusing help from anyone, organization or private individual, but me.

He told me exactly what I expected to hear. That is that I am in no shape, physically, emotionally or otherwise to care for her. But when I asked him if he would contact mom's doctor, with him being MY doctor, and speak to her about the situation, he more or less shrugged me off. He won't do it. He told me that what I need to do now is to call my mother's GP and fill her in on how much worse my mother is getting physically and mentally. He suggested that if mom's doctor contacted him, then he would be willing to back me up by letting her know then, that I cannot continue dealing with my mother's unreasonable requests and mom's doctor needs to get with her and let her know that, in no uncertain terms, she definitely has to be willing to accept help and let me go or go into a nursing home facility.

Sooooo, that is it. My last hope, my own doctor has let me down and just like everyone else, has thrown it all back into my lap. I am so tired of being "The one and only" when it comes to my mother, a woman who has no feelings of love toward me whatsoever, to make sure that all her needs are met. So I guess that this coming week I will phone her doctor and attempt, one more time, to get through to her just how dire the situation is and hope that if the doctor has any doubts, she will call MY doctor and that he will, indeed, let her know that my days of care-giving are over and that I cannot do it anymore. Otherwise, we go back to things being as they were before and me resigning myself to the fact that I just have to push myself until I keel over, or the woman sits up there and dies a long, smothering and excruciating death. No stress or pressure here at all! :(
Title: Re: My father just died-now my body is rebelling
Post by: irish on August 06, 2010, 11:49:56 AM
lurker, I am glad to hear that you heart rate is lower. One hundred is better than 150 and I am sure your body can tell the difference also. It sounds like your doc is doing the best he can for you. I would assume that there are always different meds to be used if needed.

I will add that I don't feel that your doc is throwing you under the bus. I guess this comes down to you. I hate to be so blunt, but it is your responsibility to call your mom's doc and tell him/her what is going on. You know that your mom is going to fill her doc's ear with a less than accurate story. Your own doctor could get himself in a big load of trouble my stepping in here. The legal laws now days are such that he won't tread where he is not needed---at least for the time being.

It really is hard to deal with a manipulative, controlling parent. These type of people (parent or not) are really playing a big game with all people they interact with. The reason they act like this is because of some type of need that is unfullfilled in their life and they get gratification by making everyone else jump. Now, stop and think about this, how many years have people been jumping to your mother's tune??? Does she have anything to do with people who don't jump when she tells them to. I doubt it. She most likely surrounds herself with people who just cave in and do what she wants. Does this make her happy? I bet not! I bet that if people had started confronting her when she was a toddler she would not have become this bad. When people find that they can "run the show" without getting stomped on they will continue to do it. Most people get so they don't want anything to do with your mom and this in turn makes her feel more isolated and unfullfilled which in turn makes her demanding behavior even worse. It is a never ending cycle and someone, sometime has to say "no" for some reason and your "name" came up.

I guess if it was me I would write a letter to her and tell her you love her but tell her you can't take care of her, etc. Tell her that you had to write as the conversations ,whether in person or on the phone,  always end up being loud, long, etc. Tell her your health isn't good and you need to take time for yourself. Tell her all things kindly and tell her that if she wants to talk about it she can wait until you are feeling better. Leave a door open for a down the road confrontation. She will probably stew and fret and feel sorry for herself and she may end up calling her doctor. If her doctor calls your doctor then he will say something. Until then his hands are tied as it is pretty much a family issue that has to be dealt with by you.

I really do feel for you as I had a parent who was very hard to deal with---I think we have all had a touch of this in our lives. It is hard to deal with the guilt. However, you have health issues and a family and your family comes before your mother. Even Dr. Laura would say that. Good luck and I hope that you get feeling rested and guiltless. Irish
Title: Re: My father just died-now my body is rebelling
Post by: Cactus on August 06, 2010, 12:43:09 PM
Hello lurkernomore

I just had to reply to your post as the very same situation was happening to me 2 years ago. I was becoming so stressed and ill I had to approach my mothers doctor to let him know the situation. I had put up with it for far too long and I just know how emotionally draining the guilt can be. I was the only relative she had left and she refused all other help. She died last year just as her doctor was going to assess her needs. I don't know if I am still in mourning or going through post traumatic stress, but I really sympathise with you.

I do hope your health improves soon and please see your mums doctor a.s.a.p. You have done your best.

Lots of (((((hugs)))))).
Title: Re: My father just died-now my body is rebelling
Post by: lighthouse33 on August 06, 2010, 01:36:29 PM
The problem is with the laws.  We found this out when one of our relatives was in the hospital.  We told the nurses that we were in no condition to care for this person if they came home in the state they were.  The nurse indicated that even if the doctor sent him to a nursing home to recover that Medicare would just kick him out after a couple of days.  And besides that unless the pateint gives his CONSENT to go there, the doctor cannot put him there.  I was dumfounded!  So, I wonder if the patient were incoherent if the doctor could sign the paperwork then?  I can guarantee you that this person will never give his consent.  So we are heading down the same road. 
Title: Re: My father just died-now my body is rebelling
Post by: irish on August 06, 2010, 10:09:34 PM
I worked in long term nursing for 25 years and when someone needs to be in a nursing home for care there are legal means to see that this gets done. First of all, each hospital, county and nursing home has a social worker and her job is to help see that a patient is given the appropriate care.

There are criteria that has to be met in order to get into a nursing home and criteria that is assessed to make sure that people stay in if necessary. Sometimes the family has to get a guardianship in order to make the legal decisions for the appropriate care. If the family can't do it because of health reason, etc then the court appoints someone to be a guardian. Most counties have people who do guardianships for others almost as a job. Other times there are neighbors, friends, relatives or even lawyers who take over the guardianship as appointed by the courts.

If someone is in really bad condition physically and mentally there is usually help as soon as legally possibly. If people are borderline and can get along at home with the help of health care workers through the county this can be done. If the person starts to get worse the country is able to help get thim into a facility but with the input of relatives. Not everyone in a family is happy about how these things turn out and the thing to remember is that what needs to be done needs to be done.

If some member of a family doesn't think that "grandma" needs to be in a nursing home when she really does than that family member had better be prepared to move in with grandma. Elderly people who are left in their home when they are in dire need of help often have greedy relatives who don't want to spend the money. These relatives had better pay heed because with the laws now days they stand a chance of being reported to social services for abuse/neglect. There is a pretty stiff fine that goes with thiis if the family is tried and found guilty.

I don't know if everybody knows this, but we are all reporters mandated by the state. I would check this out for the state that you live in, but I would guess that much of this is state and federal laws in the USA. This means that if any of us see an elderly or disabled person being abused either physically or verbally we are to  call the social services in the county in which the event took place. We are not required to tell them our name. They only want the names of the people involved in this event and for us to explain what we saw. After that it is out of our hands and it is totally in the hands of the social worker to investigate the charges and conditions of the patient, etc to see what is going on. It is a fairly good way to do things and gets attention drawn to incidents that need to be addressed. The people who reports the incident usually never hears a word about what happens which is good. Sort of reinforces the anonymity of the situation. Irish

Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on August 07, 2010, 10:03:48 AM
I called my mom last night. She was really sullen and made it obvious that she was upset with me because I have put an end to my daily calling to check in on her. She did finally get around to asking me if I had a doctor's appointment yesterday, did I go and what did he have to say? I think that she was hoping that this third pill would magically "fix it all" and things would just go back as they were before. What she was not happy to hear was that my doctor pretty much told me that I am not "out of the woods" yet and that basically, what my body was experiencing was a combo of shock and exhaustion...like the "old-timey" exhaustion that they use to hospitalize people for. Now, they just tell people to go home, rest whenever and however they can and not be committing themselves to anything or anyone until they felt they had more strength and energy to do so. She followed that up by asking me "so how long do you think that will take?" Oh....DER!!!!!

Anyway, my doctor did do some blood-work yesterday and I am not sure what that was for. When I told mom that, she just blew that off. It was as if she were saying, "okay, enough about you-now back to me," LOL!

But right now, my main concern is what you were telling me regarding the possibility that a social worker could just randomly decide that I have been neglectful of my mother and possibly even file charges against me? I cannot even begin to tell you how upsetting the possibility of this happening is to me! I honestly do not know how or what else I can do at this point, other than to call my mother's doctor and report to her regarding my mother's most recent behavior and failure to comply, whether it be with what the doctors are telling her, or with what my husband and I try to do for her.

The sad part about all this is that she has no respect or concern for the impact that her poor choices have on my or my family's lives. That she would sit on the phone with me and boast about the fact that she has been sitting there for the past two hours, not using the oxygen, which her doctors have told her to use 24 hours a day, because, in her words, she does not want to become dependent upon it. Her lungs are shot, she is in end-stage emphysema, and yet-she does not want to become dependent about the one thing which just may extend her life-span? What am I suppose to do with such information? Especially when telling me such things, and all for the joy that she gets from watching me literally gasp, because I am so worried, so upset and that is what she is counting on. This is what makes her life worth living.

I literally do not know what to do or where to turn now. Finally, I am beginning to try and find some peace and happiness. Finally, I have reconciled, in my mind, that nothing I do or say to her is going to change who she is or what she is. And for that...some social worker could have the authority to report me and say that I have been neglectful where my mother is concerned? Man....I really am just dumbfounded here. Just...I do not even know how I am supposed to feel about that.
Title: Re: My father just died-now my body is rebelling
Post by: Katybarstool on August 07, 2010, 03:17:52 PM
Lurker

I hear what is being said about Social Workers, but if it's the same as in the UK, Social Workers have to assess the carers needs, if relevant. So, as someone who is struggling herself, and has her own health/care needs,  I imagine it would be hard for them to make a case of negligence against you

Kathyx
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on August 07, 2010, 05:58:32 PM
Thank you for that. I realize now that I most likely overreacted to that news. I am just so tired and my emotions are so raw feeling right know, you know? I just don't know how I could possibly do anymore than what I have tried to do. And whatever I have tried to do for her has just never been enough.

We are at the stage now that I really see no other way than for mom to have a complete mental evaluation done and let her doctor take it from there. Of course, I tried getting her doctor to do this before and she wouldn't do one. So I just don't know what else I can do.
Title: Re: My father just died-now my body is rebelling
Post by: irish on August 07, 2010, 09:49:32 PM
lurker, I was in no way-non-nada-whatsoever referring to you about negligence. I was just adding some information about the laws, etc for lighthouse---and I was not insinuating that she was negligent. Often relatives are so overwrought with all that falls on their shoulders during grandma and grandpa nursing home or hospital stay that things can get pretty hard to sort out.

It is really hard to get the nursing staff and the families to meet in the middle for the good of the patient. There are so darn many laws and regulations that sometimes seem beyond reason. The truth of the matter is that many of these laws and rules have had to be made because somewhere, somebody did something one too many times and the government decided enough of that.

Just remember that it is ok to report to the social service department in the form of an anonymous complaint. Sometimes things happen that the kids are not aware of and often these concerned friends or neighbors save a life or prevent injury.

I just read over the post I did above on nursing homes/caregivers/family, etc. I will apologize if I insulted anyone, but the intent was to do a little educating about the ins and ours of nursing homes and how they work and how some of the laws apply. This was an in-general post with information that is what I would consider to be in the nice-to-know and need-to know category. Irish
Title: Re: My father just died-now my body is rebelling
Post by: lurkernomore on August 08, 2010, 07:30:34 PM
No Irish, I was the one who did the overreacting to your attempt to reply and for that I owe you a huge apology! You have been nothing but kind, understanding and more than willing to listen to all my babbling ever since I began this thread. So please accept my apology, I am the one who was in the wrong.

I am sure that one way or another, this situation will work it's way out. And I do thank you for the listening ear and the shoulder to cry on, from everyone. It has meant more to me than words can express.
Title: Re: My father just died-now my body is rebelling
Post by: irish on August 08, 2010, 07:59:03 PM
lurker, Everything is ok so hang in there and you will get through this bloody mess. Everyone of us have something that bogs us down and when we can get through it and still add 2 + 2 we can have a feeling of accomplishment. Keep it up girl---you are on the right tracik. Irish ;D