I found this site tonight after an incident where my father become violent for the first time last night upon returning to the nursing home for rehab. On Dec. 8th, three days after his 84th birthday, my father, who has never been sick or hospitalized, walked two miles a day and was thought by all to be in his mid-sixties, fell down the steps It was in that fall that our world changed.
Upon admittance to the hospital, he became agitated within 24 hours. My stepmom had mentioned that my father drank beer every night after dinner This immediately changed their course of treatment. Instead of treating him for the sub-arachnoid hemorrhage and the subdural hematoma and broken skull - which can cause agitation, he become drugged to no end because they said it was the DT's.
My father was breathing on his own, but due to the drugs, they had to vent him. This too caused many problems. I have read and heard stories from hospital staff that venting can cause delirium and so can the heavy narcotics my father was being given.
FIVE weeks in ICU. Five weeks... and then the finally decide to kick him out. Straight into a nursing home. No stepping down... just out. I believe this is because we ordered them to stop the Morphine and Ativan cocktail that was making him completely out of it. He was originally on Versed and another drug.
Now my father is out of it. He makes no sense and because of the venting, his voice is raspy and weak, and we can't understand him. One minute he is having dinner with the Chinese who need to pick up the tab this time and the next he is doing inventory. He is GONE. We don't know if he is suffering from delirium from the ICU, from the narcotics, from the vent... or if it is permanent dementia from the traumatic brain injury. There is no one out there who knows. And if I have to hear one more doctor say, "We just don't know," I am going to lose it.
He knows who I am. He knows the time when he sees a clock. He knows how to even add numbers strangely enough. But he is not making any sense. The nurse told me last night (after picking me up off the floor in in tears following my father's continual smacks to my head) that he had seen patients just snap out of it once the medications kick in. But what medications I wonder? The only drug they have my father on just started a couple days ago and it is Seroquel - a bipolar medication that the doctor at the hospital (my dad returned after just two days at rehab for falling out of his bed several times).
He is all over the bed. We can't keep him in it. The home refuses side rails because of new laws saying they are restrictive. He fell out twice last night in just the hour he had been back. We arrived to find him securely in a bed/chair by the nurses station.
I know you have no answers... I know no one does. I don't even know what good typing this in here will do. I feel like I am playing some kind of watch and wait game. I read your stories of playing along with the dementia and several other articles... but at this point, I don't even know if it IS dementia. What if my father is in there thinking, "Why is she playing with me like this?" I saw how angry he can get. He was ready to start punching me last night just as the nurse walked in with the tube feeding and diverted his attention. He was mad because he wanted me to move out of his way. (I was there to keep him in the bed). He kept saying he had to pee (but had a catheter). He was livid. In all my life - I had never seen my father so angry... and I know it wasn't his fault, and I know I shouldn't take it personally - but it hurt so much... emotionally.
You say your father was like this for TEN years? I can't imagine that. I can't. I pray every night that God takes my father into heaven if He isn't going to give him his life back. My father is not living. My father would have never in a million years wanted this. I feel like I have let him down because I promised I would never let this happen.
Everyone keeps saying to have hope. Hope hurts. Hope for what? Hope that he can feed and bathe himself? Hope that he can eat food and drink liquids again? Hope that he can maybe walk again? What good is that if my father's brain is gone? That man... looks like my father, but I can't help but wonder if it is. I can't help but wonder if his soul left and all we are experiencing are residual memories stored in his hard drive.
Sorry... I just feel so helpless.
I am crying as I read this and answer you, for you and I share such a similar story. Yes - he lived like that for ten years. Please do not feel guilty if you pray for his death. His misery, your feelings of loss - all of it - are nearly unbearable. I know because I've been there.
All of these medical reactions, when they are opposed to what we know, are like a kick in the stomach. Doctors aren't always right, and I understand their dilemmas. But situations like your dad's and my dad's - leaving us stunned by the immediate change in our once healthy loved ones - it's too much for words. And when we can't get any answers, it's worse. With my dad, well, they kept telling me he was like that before surgery. It was a lie and they knew it, but they were afraid of being sued. I didn't want to sue. I wanted them to tell the truth. There are now some laws in some states that let doctors tell the truth, and when they do, fewer are sued.
All I can say is that I really do understand and God bless you. Your misery is so real and raw. I rarely mention my book on this site, but my dad is on the cover. His story is "What Happened to Brad?" The book is Minding Our Elders and it's on Amazon. I don't know if it would help you, but it might give you some comfort.
Carol
Hi Carol,
Thank you so much for responding. I am sorry I made you sad. I will definitely check out your book. It is comforting to not feel alone right now. I am the type of person who must make 2+2 equal 4. This situation is breaking me apart as there seems to not be a calculator on the face of the earth to solve this equation.
They say to take it day by day. I have found that not taking it day by day is more or less trying to predict the future. If I were to wager what type of car would drive by my home in six minutes, it would be crazy to even try - yet for some reason I feel this need to predict what tomorrow will bring for my father's health. I research the internet for hours at a time trying to find answers for tomorrow when I don't even understand today.
I don't want these to be the memories I have of him. I want to hold onto the romanticized version of my father - yet now whenever I close my eyes, I see his contempt for me that night, the trembling fists that were about to hit me. Oddly, I wanted him to hit me. I wanted him to beat me up. I wanted to hate him because hating him would be so much easier than loving him. Being hurt from his punches would not hurt as bad as my heart hurts from watching this once vibrant, healthy man lose all that he was in one second of a missed footstep on some stairs.
I am going through stages of grief - and yet he is still alive. But some part of me is grieving the loss of what was my father. The hardest part is that tomorrow - he could be fine. He could sit up and be back to my same old Dad. That kind of hope is hardest of all. I wish someone would tell me that this is it. That it doesn't get any better. That my dad will be like this until God takes him. Because then... then I could start to accept things and work within the situation instead of hoping that tomorrow it is all better.
When this first happened, I could have sworn I felt my father's presence with me in the house. I felt as if he passed on. I heard him talking of past, present and future things. I heard him loud and clear. I was resigned to believing he had moved on and it was just his body here with us. But then he came back awake - and we could see glimpses of him in there.
The hardest part of all Carol is the flickering of his "light". What I mean is, one minute I look at him and see my father as he always was and a few minutes later, he looks old and decrepit - near death. It is as if his soul is flickering. I can only describe it as a hologram that periodicallly fades out to show the real man beneath the illusion. He is truly a candle in a gentle breeze. It is frightening and mystifyingly beautiful at the same time.
Life is funny. They say what doesn't kill us, makes us stronger. If that is true - God help us all.
Hugs,
Candy
Hi Candy,
In my book's epilogue, I write about Dad's death in my arms - ten years later. That's when I truly got him back. But, he had these moments of clarity during those ten years. He came "out of it" one time and said, "My universe has gotten so small." His eyes were normal and he looked right at me. That was so Dad. Then he went back into dementia hell.
You didn't make me sad, except sad for you. I was teary because I did know your pain and it's awful. Simply unbelievable. As you say, there is this hope. I eventually saw that the hope of any recovery was not there, but for your dad it could be different, and as you say, the hope almost makes it worse.
You are in my thoughts and prayers. There is no way you can know the future, as you say. You have to let it go and live one moment at a time, because that is all you can handle.
I've written about working my way back to how my dad was before the surgery. I had to hang onto that. I felt, when he died, that I got him back in spirit, as he was before - for the first time in ten years.
Hang on. This life can be very hard. You will help others one day, whatever the outcome for your dad at this time.
Carol
I know someone who was in the hospital for a hysterectomy and went home a few days later only to develop severe stomach pains, vomiting and diarrhea. She was brought to the emergency room where they said a pre-existing hernia was now causing a blockage which they felt was causing her symtons. Another surgery was performed to fix the blockage. After that it has all been down hill. They discovered when she was in recovery, that she had contracted C-diff. She has been on heavy dosage of flagel for the past 2 1/2 weeks and is in ICU. She cannot swallow, can hardly talk, is very weak, and her mental state is crazy. Most of the time she is not lucid. She has times when she curses uncontrollable, talks dirty, and makes no sense. She has had many incidents where her whole body stiffens up, resembling a seizure but EKG's and other tests say there is nothing abnormal going on in her brain. Sometimes she shakes uncontrollable, and sticks her tongue in and out. She can barely hold a pen and when she writes on a pad, it is not readable. WE are all very concerned about her mental state. At one point , the doctor gave her haldol, but they have since stopped that. The other day they put in a feeding tube. She still has diarrhea about 5x/day although her white blood cell count has been going down. Help...we are so confused. The doctors act like they have never seen this kind of behavior. Now they have mits restraints on her hands as she has tried to pull out her tubes. Yesterday they inserted a breathing tube cause they thought she was chocking on a scap from a bad cold sore she has had on her mouth. Then they thought she had an infection in her lung but that is negative and they said they might remove the breathing tube tomorrow. In the meantime, they have her sedated while the breathing tube is in her. What is going on??? My friend is 65 and was very "with it", totally sane and normal 3 weeks ago.
Any input about this horrible situation would be greatly appreciated.
There have been studies which show that some anesthetics can push an older person over the edge into dementia. That is what I believe happened to my dad.
The sad part is that there is often no "going back." It's not as uncommon as the doctors imply. Most are afraid of a lawsuit, so aren't always forthcoming. You may want to type "anesthetic and dementia" into your browser and see what you come up with. There are studies done on this.
Of course, current medications need to be considered, but it looks like that already has been examined. I'm so sad for you and your friend. This is common enough that I will not want any surgery that isn't absolutely necessary (now that I'm older).
Blessings to you. You are a good person to be so concerned.
Carol
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Delirium is a medical diagnosis with many of the same symptoms as dementia, but the cause is illness. The toxins from MRSA, for example, will causes signs of dementia, perhaps even taking away the ability to speak. Sepsis causes delirium. UTI's and pneumonia can make a person delirius, or out of it, but they're not demented, just sick and the diagnosis should be delirium.
A diagnosis of dementia is a terrible label, especially if the person is suffering from an undiagnosed infection, because it means care will be denied and the person will be covertly urged to die. They're written as off as better off dead. I know. It happened to my father who died. Almost happened to my mother. And yes, it was infection, MRSA in one and C.Diff in the other.
Good points, all. That is why medical people need to look at every possible cause, before diagnosing dementia. You have obviously been a wonderful advocate for your parents.
Carol