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Old 05-04-2012, 01:57 PM   #1
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Heartbroken Daughter.

Hello everyone. I am new to this board and I need to understand what just happened in my life. Yesterday, I just buried my mom. She was 83 and I am her only child. This will be a long post , but I am hoping that someone can relate to my experience. 4 weeks ago my moms fiancé of 30 years called me to tell me that my mom was acting strangely. They have lived together for over 30 years. I went to the house and she was very agitated. We noticed smoke in th kitchen and her fiancé said that mom had set cups on the stove to warm milk instead of th microwave. We took her to the EMergency room and her blood pressure was 210/105. They did blood work, cat scan and uti test and every test was negative. They released her with a follow up to her doctor in 2 days. I picked her yup for the appt. and she could barely navigate. The doctor admitted her for an MRI and more blood work. The day we admitted her she was fine. But that night she got really confused. I came in that morning and she couldn't put 2 words together that made sense. If she wouldnt have been completely normal and I mean driving, cooking, talking, etc. 3 weeks prior to this I might have understood what happened, but she was my normal functioning best mom in the world and now she is dead. Please tell me what happened? After 3 days in the hospital, we had to move her to a continuing care facility because of cognivtive problems and her ability to walk. The MRI showed no sign of stroke nor rumors, however, it did show a minor nph. We admitted her to the nursing home on April 6, and she passed away April 29. From the time she was admitted she declined. She became apraxia, could not comprehend what physical therapy wanted her to do, her walking went to a shuffling gate, she started spelling letters that made no sense, stopped feeding herself, stopped talking, was leaning to the right a lot, her one eye closed and my nightmare just continued. The doctor, physcologist, physchiatrist all said she exhibited symptoms of stroke, however, the MRI did not show it. She was referred to a neurologist that thought she suffered from mild dementia brought on by severe sleep deprivation. My mother had not been sleeping well for over a year, I found out from her fiancé. She was taking Ativan, neurontin, and Vicodin on a regular basis. She had had shingles that had went internal for years and had constant pain in her side. She also was very antsy about laying flat on her back for any period of time. These drugs were not given to her since April 3, however in the nursing home she took Seroquel for a week until the staff doctor stopped it because he felt that her sleepiness and lethargy was a side effect. After she saw the neurologist, she prescribed risperdal and again that was stopped because of the same side effects. On Saturday, April 28 I believe she went into a coma because her breathing was labored and through her mouth and she passed away in the morning of April 29. Everything I have read about dementia and Alzheimer's say that this a slow progression. This took 3 weeks and she is gone. I don't understand and even the doctor on staff has no answers. I am waiting on all copies of medical records from the nursing home. I was hoping this message board could help me as my heart is broken and I am so devastated by this. If anyone has experience this in this quick of a time, please answer my post. I feel so guilty because I had her going to cleveland clinic on Tuesday and she died on Sunday. What would have happened if I would have called the clinic sooner. But, I had two well respected neurogists, md and professionals that I entrusted my mom with and now she is gone.

 
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Old 05-04-2012, 02:20 PM   #2
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Re: Heartbroken Daughter.

I'm so sorry for your (shocking) loss; it's hard enough when we expect it and have had time to get used to the idea. Just throwing out ideas, but is it possible your mom could've had a SLOW bleed that wouldn't have been apparently on the initial CT scan? Either from hypertension (hemmhoragic stroke) or perhaps a fall or "jarring" of the blood vessels in the brain? These can be very friable in the elderly who already have some normal degree of brain atrophy. Often the first CT won't show any activity, but one taken weeks or months later will show blood in the brain; this happened to my mother. It took three months after she hit her head HARD in a fall to get the second/follow-up CT showing bilateral hematomas; in the meantime, we had been to three neurologists -- one was 'the best' -- all of whom dismissed it as AD w/o running more tests. I'm not sure of the timing of the MRI she subsequently had. Did they not think the NPH could've been to blame? Also, there ARE forms of dementia (some genetic and some actually due to infection of sorts) that are very rapidly progressive; Jacobson-Crutchen (forgive mangled spelling; something like that) is related to "mad cow disease" and comes to mind, among others. I'm assuming there was no autopsy done; that could have shed more light. As much as I hate the idea of an autopsy, I think I would like to know EXACTLY what went wrong in my own mom's case, too. Again, my heart goes out to yours; please try not to blame yourself, as you sound like a good daughter.

Last edited by all4mom; 05-04-2012 at 02:32 PM.

 
Old 05-04-2012, 02:34 PM   #3
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Re: Heartbroken Daughter.

The ct scan was not repeated.. Maybe it should have been. No an autopsy was not done. Originally I was going to but was discouraged by the head nurse. My kids did not want to put grandma through that also. As to the fall. She did fall a couple of times the day we took her to the emergency room.. But again nothing showed up.

 
Old 05-04-2012, 03:59 PM   #4
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Re: Heartbroken Daughter.

Piper, I am so, so sorry! You said there were blood tests. Were the electrolyte numbers ok? Specifically, i am talking about sodium and potassium.

 
Old 05-04-2012, 04:57 PM   #5
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Re: Heartbroken Daughter.

In the hospital the tests were ok.

 
Old 05-04-2012, 05:02 PM   #6
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Re: Heartbroken Daughter.

In the hospital the tests were ok.

 
Old 05-04-2012, 07:35 PM   #7
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Re: Heartbroken Daughter.

Piper, health care is not an exactly science and sometimes things happen that are no understood. There may be no answer to your question "Why?" except "It is!". You did all you could do for your Mom. If there was more you would have done it. Iffing yourself into guilt after the fact is not going to do any good. You stated you had competent staff caring for your Mom. You did the best you could with the information you had and the services available. That is what you need to remember.

I have no idea what could have gone so wrong but there are many things that could have gone so wrong. Please don't beat yourself up. You are heart broken at the quick loss of your Mom and my heart goes out to you. Be kind to yourself....

Love, deb

 
Old 05-04-2012, 08:08 PM   #8
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Re: Heartbroken Daughter.

Piper, sounds like your Mom had many health problems and she appeared to have dementia-like symptoms as in late stage. Somewhere something went wrong suddenly in her body and she could not take the trauma so she passed away.
Don't beat yourself like that. If her fiance was with her, then you alone are not to blame and you are not 100% responsible since you don't live with her and would not know. Many factors and reasons. She had some health issues for some time... Sometimes maybe we overlook something in our health issues and etc. because it is not obvious.
Don't beat yourself up. It is not your fault. It is the way it is. I hope your Mom rests in peace.

Take care,
Nina

Last edited by ninamarc; 05-04-2012 at 08:10 PM.

 
Old 05-05-2012, 12:24 PM   #9
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Re: Heartbroken Daughter.

Hey Piper -

I don't have any answers for you, but did want to reach out and let you know how very sorry I am for your loss. As the others have posted before me, puleeze don't beat yourself up!! You did everything you possibly could. Sometimes.....things happen this way.

Be kind to yourself as you go through the grieving process. It's so darn hard to live with unknowns, but sometimes.....we have to. Take very good care of yourself and know you are welcome to reach out to us here on the board. There are many people who truly care and understand. I hope that helps you in some small way. I lost my stepdad 4 months ago to a form of dementia, and although I knew I would lose him (he had been diagnosed in 2008), the end seemed to come quickly. There's just never enough time.........my thoughts and prayers are with you!

 
Old 05-06-2012, 07:37 AM   #10
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Re: Heartbroken Daughter.

Well first of all you have my deep and sincere condolences for this loss.
I am so sorry for your and your family,

Second, a few thoughts.

It definitely sounds like she had some unusual type of neurological problem, maybe slow bleeding in the brain that did not show up on the first MRI, or may a rare condition such as creutzfeldt-jakob disease or one of the related diseases such as fatal familial insomnia. Lack of sleep is one of the markers of the fatal familial insomnia and you mentioned she had that. It could also sound like a sudden onset MS but that might have shown upon on the MRI -- but you mention shingles and so I wonder if she did have a silent case of MS that was there for years and then maybe with age something triggered it and it ran rampant, killing her quickly.

Many neurologically related diseases like that have dementia or cognitive problems as a symptom, and can progress quickly as opposed to the long steady decline of dementia when it is the main culprit. In other words, they demonstrate dementia, but the dementia may be caused by something else.

I am totally not a doctor and only speaking anecdotally. I knew of someone whose relative had one of the above related diseases and their case sounded similar. At first they looked for and treated stroke, but within a month or two it just got worse and worse, and they were dead. They suspected it was one of those families of diseases but they could never pin it down exactly. I also heard of someone with MS that went rampant and killed her in several weeks. Both of these sound somewhat similar to your mother. Again, not a doctor but knew of these cases that rang a bell.

The thing is - there are so many syndromes or diseases that are little known, hard to recognize and impossible to treat. The study of neurological disease still has a long way to go. If in fact she had been stricken by one of them it is possible they never would have really figured it out or, if they had, been able to treat it effectively. Her doctors could have been excellent and still they may not have been able to understand her condition or help her. It is a terrible thing but there is nothing for you to feel guilty about. Absolutely nothing. You got her the best help available but sometimes even the best cannot save our loved ones.

You may want to consult further with neurologists you might have some interest from those who are in the investigational arena. Maybe her practicing neurologists could refer you. I can understand the need for understanding but I think you have to look in a different place and even then you might never get a decisive answer.

I also think that you need to take some time to grieve your unexpected loss.

Sincerely,

SUZY






Quote:
Originally Posted by Piper39 View Post
Hello everyone. I am new to this board and I need to understand what just happened in my life. Yesterday, I just buried my mom. She was 83 and I am her only child. This will be a long post , but I am hoping that someone can relate to my experience. 4 weeks ago my moms fiancé of 30 years called me to tell me that my mom was acting strangely. They have lived together for over 30 years. I went to the house and she was very agitated. We noticed smoke in th kitchen and her fiancé said that mom had set cups on the stove to warm milk instead of th microwave. We took her to the EMergency room and her blood pressure was 210/105. They did blood work, cat scan and uti test and every test was negative. They released her with a follow up to her doctor in 2 days. I picked her yup for the appt. and she could barely navigate. The doctor admitted her for an MRI and more blood work. The day we admitted her she was fine. But that night she got really confused. I came in that morning and she couldn't put 2 words together that made sense. If she wouldnt have been completely normal and I mean driving, cooking, talking, etc. 3 weeks prior to this I might have understood what happened, but she was my normal functioning best mom in the world and now she is dead. Please tell me what happened? After 3 days in the hospital, we had to move her to a continuing care facility because of cognivtive problems and her ability to walk. The MRI showed no sign of stroke nor rumors, however, it did show a minor nph. We admitted her to the nursing home on April 6, and she passed away April 29. From the time she was admitted she declined. She became apraxia, could not comprehend what physical therapy wanted her to do, her walking went to a shuffling gate, she started spelling letters that made no sense, stopped feeding herself, stopped talking, was leaning to the right a lot, her one eye closed and my nightmare just continued. The doctor, physcologist, physchiatrist all said she exhibited symptoms of stroke, however, the MRI did not show it. She was referred to a neurologist that thought she suffered from mild dementia brought on by severe sleep deprivation. My mother had not been sleeping well for over a year, I found out from her fiancé. She was taking Ativan, neurontin, and Vicodin on a regular basis. She had had shingles that had went internal for years and had constant pain in her side. She also was very antsy about laying flat on her back for any period of time. These drugs were not given to her since April 3, however in the nursing home she took Seroquel for a week until the staff doctor stopped it because he felt that her sleepiness and lethargy was a side effect. After she saw the neurologist, she prescribed risperdal and again that was stopped because of the same side effects. On Saturday, April 28 I believe she went into a coma because her breathing was labored and through her mouth and she passed away in the morning of April 29. Everything I have read about dementia and Alzheimer's say that this a slow progression. This took 3 weeks and she is gone. I don't understand and even the doctor on staff has no answers. I am waiting on all copies of medical records from the nursing home. I was hoping this message board could help me as my heart is broken and I am so devastated by this. If anyone has experience this in this quick of a time, please answer my post. I feel so guilty because I had her going to cleveland clinic on Tuesday and she died on Sunday. What would have happened if I would have called the clinic sooner. But, I had two well respected neurogists, md and professionals that I entrusted my mom with and now she is gone.

 
Old 05-15-2012, 12:06 PM   #11
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Re: Heartbroken Daughter.

I don't know if you're still following this thread (?), but I thought I'd quote you something now that I have the ACTUAL correct spelling of this rare disorder...

Creutzfeldt-Jacob Disease (Mad Cow Disease)

Extremely rare (occurs in one in every million people per year) and invariably fatal brain disorder caused by a prion, which is a protein particle. Symptoms include a failing memory, changes in behavior, lack of coordination (the falling), pronounced mental deterioration, involuntary movements, possible blindness, weakness in the arms and legs, eventual coma and death.

You'll never know for sure without an autopsy, but it certainly seems like a possibility.

I hope you're finding peace with it and realizing that you did the best you could; hugs...

 
Old 05-15-2012, 05:40 PM   #12
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Re: Heartbroken Daughter.

so sorry to hear about your loss. hugs to you

 
Old 05-15-2012, 05:57 PM   #13
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Re: Heartbroken Daughter.

Thank you everyone that has replied to my mothers bizarre passing. I wish I could say it makes me feel better but it doesn't relieve the guilt that I feel for not moving her sooner. I talked to the neurologist today and she also mentioned tis rare disorder. She did say that if that is what it was there was nothing I could have done. I miss my mom so much and I feel that I let her down. This moved so quickly I didn't have a chance.

 
Old 05-15-2012, 06:43 PM   #14
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Re: Heartbroken Daughter.

Please read your last statement.... "This move so quickly that I didn't have a chance"... please so not beat up on yourself for something that you could not control. It very well may have been a situation where there was nothing you could have done. I know you miss your Mom terribly but please know you did all you could!

Love, deb

 
Old 05-16-2012, 08:02 AM   #15
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Re: Heartbroken Daughter.

hello piper, wow that was very sudden, I am so sorry for your loss, those words seem so in-addaquit don't they! I lost my mom just a few months ago from alz. it was a very slow long process, I have often wondered since then how people who lost their loved onces so quickly handle it.I am still heartbroken..I have nothing to add but just wanted you to know that I understand your pain, you did everything you could have for your mom with what you had, your mom would have been very proud of you.

hugs..judy
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