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I received a call from Nursing home yesterday saying my Mom needs to see an oncologist that her Doctor thinks she has Thrombocytopenia.  I looked it up in Google and found on Mayo Clinic it usually means patient has Leukemia, immune system disorder or medication side effect and is due to a low platelet count.  They want me to go with my Mom to a hospital pretty far away for tests.  What tests I do not know. This is really all the info I have and I do not like it.  My Mom is sick enough and I am not looking forward to stressing her out with this visit or listening if they say she needs chemo.  I am trying to get more information on what they plan to test, why we must go to a hospital far away, etc.  

I picked up a book Brain on Fire at airport about a girl in her 20’s who all of sudden is acting very odd, like she has dementia, schizophrenia, psychosis, bipolar disorder…it turns out she had ovarian cancer that was cured previously and it led to a spike in her white blood cells and it took quite some time for Doctors to figure this out.  She was also having seizures.  Reading her actions reminded me of my Mom and while not the same scenario this author did the make the point of saying if her parents had not kept pressing doctors she could have ended up in mental illness facility or nursing home.  It made me think this could happen to others, and that is pretty scary as many don’t have a lot of money or great health care.  The author was at very good hospitals in New York and they could not figure this out for longest time.  It is scary to think some could be institutionalized that could actually be cured.  It made me sad too, I don’t think a lot of testing was done on my Mom but I really don’t know…I would suggest everyone keep very good notes of all lab work done with results in case a case like this could ever come up – especially with a younger person being diagnosed with dementia.

My husband and I were talking about Thanksgiving and realized this will be the first year we cannot take my Mom out of the nursing home.  She is dead weight, and with dementia thrown into legs that no longer work it is simply unsafe to try to transport her. We are not equipped with a handicapped bathroom and most restaurants are not either.  Besides, if she did have to use the washroom I cannot change her by myself as she will fall down suddenly so that would not work in a public place (if my Husband had to come help). We also don’t have a lift on our van.

It is a sad realization.  We will spend our holidays at the nursing home and visit with her for a couple hours.  

Reading an article on alzheimers and it says African Americans are disproportionately affected by Alzheimer’s, possibly because they have high rates of blood pressure and high cholesterol, which are risk factors.  Well, I am Caucasion, and have high blood pressure so I would assume I am also a risk factor – that and the fact my Mom has frontal temporal dementia, my Grandfather had Alzheimers and my Grandmother had ALS.  

Wow — I am hoping for a quick death when older, like the 80+ year old who ran the NY Marathon then died soon after.  What a way to go, you have a feeling of accomplishment and no long term suffering.

this is the first summer i cannot take my mom out of the nursing home.  i cannot take her to my house to sit around outside with us in the backyard.  this stinks.  i did not realize how hard it would be until the realization set in that she simply cannot come to my house anymore.  the nursing home needs a lift to change her, she cannot stand at all and it is too difficult to do this even with 2 people sometimes.  i cannot risk having her fall and not be able to lift her back up.  last summer and all the summers prior she was with us every weekend almost.  i miss those times now, even when they were hard and she was always asking me for more and more I miss my mom.  

My Mom was acting out a lot at nursing home, very emotional and at times combative, and so we decided to raise the dosage of Seroquel back to 100mg from 50mg.  I was against the drug but at the same time I know I cannot have my Mom causing issues every day.  She was also more confused and disoriented I cannot say for sure but maybe it was effect of coming off the drug.  We will see how this increase goes, the staff knows I don’t want her “zombified” and will call later in the week to give me an update.  

I finally was able to get, by court order, some of my Mom’s possession’s from her previous marriage. When she became really sick in 2006 the husband (not my Dad) had locked us out and wanted nothing to do with her and remarried and moved a new women in to their house.  It was hard and now 7 years later I finally reclaimed a few personal effects.  I was very anxious to go there, I did NOT want to see him as I think he is very evil and a bad person but at the same time it is the point it was her belongings not his and a little piece of her from happier times I could have as a memory.  We went there without incident and although he didn’t give me everything I guess something is better than nothing.

I am sure anyone who has a loved one suffering from dementia has experienced this…you see someone who looks alike your loved one, doing something they used to enjoy, and become nostalgic.

I was at a White Sox game in Chicago yesterday and rows ahead of me I saw a lady with hair like my Mom used to have in a baseball cap having a good time. I thought, my Mom would have loved to be here in the old days before she became sick.

Does anyone have a story to share about their experience with something like this?

I just read this article and it is saying (i picked out pieces from FierceBiotechResearch.com)

Scientists have mapped brain pathway that produces abnormal proteins to pinpoint how oligomers–the toxic species that spread easily around the brain to cause the death of neurons–are formed.

Right now there aren’t any modifying therapies for dementia, only limited treatment for symptoms.  They are working to solve what happens with molecules before they progress.

If they can find out how to stop the progression this could lead to treatment for dementia!!!  I love reading articles like this, it shows some signs of hope.

Here is a link to the article:  

http://www.fiercebiotechresearch.com/story/cambridge-scientists-find-molecular-catalyst-behind-alzheimers/2013-05-21?utm_medium=nl&utm_source=internal

I went yesterday (wednesday) evening around 5:30 to pick up my Mom to take her to my cousin’s wake.  I called earlier told the morning nurse to have her ready…I guess the message was not passed to the afternoon shift.  The nurse was very surprised to see me, and my Mom was at the dinner table finishing her meal.  She barely recognized me and I had my 6 year old daughter with me, with my Husband and 2 boys in the car waiting.  I wheeled her over by nurse, asked when she had last been changed, nobody knew so they sent someone to help me in bathroom.  My Mom was so out of it, it was just heartbreaking.  They had been bugging me to sign a consent for a psychotropic drug, which I did not want to do, but I know my Mom can be a handful so I did about a month ago.  She was so drugged she was leaning over toilet ready to fall on her face.  The CNA who must be slow was like come on Connie, you have to help..sorry but you cannot help when you are ready to fall asleep from drugging lady.  It was apparent this was a bad idea to try to take my Mom out, the whole bathroom scene alone took a long time, they needed extra help since my Mom could barely move and wasn’t coherent, and I started to get upset but did not want to cry so pushed the feeling back.  My daughter started to get upset and then I felt worse.  My Mom seemed unaware of surroundings and time, I took her downstairs and told my husband to go to McDonalds to get her a sundae but by the time he came back she was slumped in her chair sleeping.  I took her back upstairs and asked the nurse what she had been given.  Seroquel at 4pm.  There is a care conference Tuesday and I am going to revoke my consent for this drug.  I am sad, frustrated, sickened by the system of institutional care.  

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