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Please know this is not a question, more of a follow-up to a post I made a while back in regards to my Mother, and I hope this may help someone out there who may experience the same thing.


My mother was a 77 year old type 2 diabetic suffering from Stage 3 renal failure. I took her to the doctor's office regularly. I listened intensively to everything I was told, researched everything for hours on end, called people in the medical profession whom were friends. An instance happened where I noticed a sharp change in her memory/behavior and mobility. I kept detailed records of everything I saw and informed the Doctor. They assumed it to be dementia, and based off their reasoning, I agreed.


But shortly her symptoms started to evolve which did not seem like dementia to me. After watching her, and considered her history of heart failures and slight blockage in her carotid artery, I alerted the doctor that I suspect her to be suffering TIA's. (Repeated mini-strokes) and the only way to definitively find out, would be to have an MRI of the brain. Unfortunately, even with the symptoms and detailed history of heart problems my Mom had, the Doctor didn't think it was necessary, and I was dismissed.


Shortly after this her condition declined to such a rate where I couldn't understand her, she couldn't walk, lost function on left side of body. We rushed her to the emergency room where they gave her a CT and found a massive brain tumor on her right frontal lobe. 17 days later, she died. The point in all of this is to tell anyone who is a family member, if you know something is not right, if you're with this person daily and you know them better than anyone else, and you notice something off...do not back down.


Unfortunately I did not live by my own advice and I backed off and listened to the Doctors, since they know so much more than I do. But had of I been a little more tenacious and insufferable toward the Doctor, maybe there would have been a chance we could have bought ourselves more time.

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I'm so sorry to hear about your mom
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PS... Now that I think about it, I beat myself up every about all the things I should have done differently... It's a heavy burden to carry... This is why we need to be grounded by those of us who have gone through these things... How fortunate our parents, loved ones are to have someone who cared for them with such sacrifice and love. This is something I know I will never have in my later years.
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Thank you for sharing, and I'm sorry for your loss. Things become so complex and uncertain when the process of aging collides with multiple health issues. You did your best and like most of us you took the lead of medical professionals. Hugs to you.
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Please don't feel as if you failed your Mother. I also had experience with doctors who would not help my husband. (And this was at Sloan,in New York no the less). He will be dead about 12 weeks by 28th of Oct. 2017. The doctor went as far as rolling his eyes at me. Long story. Point is the doctors are not holistic and they just specialize on one organ! Very deadly thing to do. So sorry.
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My heart felt condolences for loosing your dear mother. What caregiver's wrote here is so true... something only caregiver would understand... You give so much unselfishly and people we trust with our loved ones (like doctors, etc) can fail us ((I know also, as I've met many who... concerning my mother... were far from perfect or professional... (One, I reported through the State... of course, the State sided with him, because they weren't there... long story). In any case, your mother was Blessed to have you... try not to beat yourself up, even though I know I'd feel the same way, if I were in your position... This is why caregiver's have to be so careful not to get sick themself. Sending you and your family prayers and love. Take care of yourself.
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I don't know about tenacious and insufferable, but you have effectively sent a message to others to speak up if things aren't making sense, and thank you for that.

An MRI doesn't usually catch TIAs in the act, so that makes sense. But it does surprise me that a PCP suspecting dementia didn't get a CT scan done. Whether or not that would have made any difference in the long run I suspect is much harder to say than those surgeons - who tend to be on the gung-ho side - would have you believe.

You did a tremendous amount to help and support your mother, and she must have felt very much loved and cared for. No regrets! - you did the very best you could. Wishing her peace and you comfort.
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May God give you peace in this difficult time. May your mother be always at peace.
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I'm so sorry for your loss, you were a wonderful daughter, and as you said, "just ran out of time".

These sorts of things sometimes Get taken out of our hands and God felt it was her time to go, or possibly have to endure a long and painful drawn out end for her, and you know that you wouldn't have wanted that for her. Again, I'm so sorry, but your Mom is in a better place. You take care of yourself. Stacey B
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Desertorchid, my deepest sympathy. And thank you for sharing. I, too, misread some of my mom’s aberrations. And I was not pushy enough.

I struggle with it — but there were many forces at play. And I am only human. As are you. 

We all lose our parents sooner or later. The where/when/how sucks for everyone. The nagging details are not so universal; we all have our own “tape” that we replay over and over. 

Go easy on yourself. You were loving and caring. You did nothing wrong. 

Most of us have less-than-ideal final memories of our parents. Why? Because aging is cruel and relentless. It’s the dragon that we “super kids” cannot slay. 

I wish you the peace you deserve in the days ahead. (((big hugs)))
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Dear Desertochid,

I'm so sorry to hear about your mother's passing and the substandard care she received from the doctor. We are the voices for the elderly and their advocates. I work in a hospital. I have worked in the ER many times. Someone who has a TIA (even though they usually resolve before you get the a hospital) or has any new neurological changes GETS a CT/MRI. It's pretty much a standard protocol. It doesn't matter if she had heart disease, Diabetes, or advanced renal failure. Was this a primary care physician that made this decision on not ordering or performing the test? He/she should have referred her to a neurologist or sent her to the ER. If anyone feels something is not right and you are being brushed off. Get LOUDER! And don't stop until you get what your parent needs. BTW, I am a RN. 14 years critical care, 4 years in Preop and PACU recover, and 3 years in Cardiac Cath Electrophysiology (Performing Ablations for Afib, Ventricular tachycardia/fibrillation, SVT, Atrial Flutter, cardioversions, plus inserting pacemakers, defibrillators, Watchmans, Mems, Micra leadless pacemakers, Lariats, and Loop recorders.
Every hospital has a Patient relations department and a Medical Director you can contact with concerns. Don't ever be quiet when it comes to your family member. It can easily cost them their life.

Again my condolences for the loss of your mother. You were a great advocate for her. May she rest in peace after all the unnecessary suffering she went through towards the end.
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Thank you for sharing your story. I am so sad to hear about your loss.
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Yes
Thank you for sharing

May you find some peaceful rest in the days ahead
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Sorry for your loss & the frustration you went through. Thank you for taking the time to share your story & I will remember this going forward on this journey to give me strength when I need to be more aggressive.
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I'm so sorry to hear about your mothers passing.
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Desertorchid, thank you taking the time to warn others. I am sorry for your loss and in hopes you will find comfort from helping others. Peace be with you.
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Sorry for your loss.
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Dear desertorchid,

My deepest condolences and sympathies. I'm very sorry for your loss. I know you did everything possible for your mom. It is hard.

Thank you for sharing your story with us during this difficult time. In my own case, I too failed to see my dad was declining and should have known something wasn't right. He died of heart failure. I regret this deeply in hindsight.

I agree with you 100% everyone has the right to question the doctor and nurses. And should go for a second and third opinion if they feel something is not right. It is a lesson I hope to keep with me.
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I wish we had a sad emoji, instead of clicking the like sign. I don't like what you had to go through, desertorchid. It is sad. Sometimes I think we would be more peaceful if we didn't know these things. What I hope for your mother is she had a good life until she got ill and that she is at peace now. I hope you can also find that peace. I know you would have liked to had more time with her.
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Such a sad story, and so painful for you. You're very kind and thoughtful to share that with us during your time of grieving. I hope that your memories of your mother comfort you in the days ahead.
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To JessieBelle - According to the surgical team at the hospital, they explained they would like to perform an awake craniotomy on my Mom. They went on to say the procedure is on the same level of a colonoscopy. With her being awake there would not have been any anesthesia, which according to them wouldn't make her heart work harder than normal, would be less stressful to make the body regulate blood-pressure. Out of all the specialists we spoke to, the only people who gave even a glimmer of hope was the surgical team, and went on to say they did this procedure 6 times this week, and saw a case very similar to my Mom's and reduced it by 90% . In terms of location, it was located in a relatively easily accessible place on-top of the brain, rather than deep inside.

Ultimately it was my Mother's decision, which she struggled with and then we ran out of time since she developed pneumonia at the hospital and grew even weaker, and we both knew we just ran out of time.
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Desertorchid,
I'm so sorry you lost your Mother.She was lucky to have you and your care.It seems like the Doctors Assumed wrong,not you.YOU tried to tell them.You did try your best.
I know it hurts.I lost my dear Mother too.Take good care in the days ahead and again,I'm so sorry.
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desertorchid, I am so sorry to hear about your mother. You are right that doctors don't tend to follow through on what could be causing dementia in an older person. I wonder how often it is something like a brain tumor or normopressure hydrocephalus that is missed. Do you think they could have operated if there was time? or was it in a difficult place? I am sorry they missed what was causing the problems. I am sorry the doctor didn't listen to you.
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I'm so sorry about the loss of your mother. I do appreciate your words of wisdom. I hope you don't have regrets though, since, there could have been factors that were out of your control. Would she have even been a good candidate for surgery, under the circumstances. I hope you can find peace in the care you did provide.
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