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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.  

My Mom has been on countless drugs that supposedly will “help”.  Risperdal is one I know she has been on and I just read an article in newspaper that says Johnson & Johnson has to pay $2 Billion in false marketing of this product – they targeted elderly, disabled and young children.  They generated worldwide sales of $24.2 billion from 2003-2010.  The US Gov has been probing Risperdal sales practices since 2004, including allegations the company marketed the drug for unapproved uses.  The FDA approved the drug for “the management of the manifestations of psychotic disorders”.  Since that market is limited, J&J sought to sell Risperdal for Bipolar Disorder, Dementia, modd and anxiety disorders.  Then in 2006 they added marketing to children.  J&J will plead guilty to a misdemeanor criminal charge over misbranding Risperdal for uses not approved by FDA, including treating elerly patients with dementia.  Omnicare is the leading pharmacy provider for nusing homes, and they received kickbacks for promoting the drug to nursing homes.

What makes me mad about this goes back to Day 1 of my dealing with my Mom’s disease.  They want to throw you on a ton of drugs and they all have side effects and really no proof of working and you try to stand up for your loved one and cannot fight the system, they just give them what they want to and then you hear of stories like this — the FDA did not even APPROVE the drug for dementia use!!!!!  Greedy people decided it would be good to generate more sales and market to nursing homes and my Mom was (and may still be on this, i am going to call and find out) for what reason?  To make some rich.  I am disgusted.

I went to visit my Mom with my kids and she was once again out of it and pretty incoherent and falling asleep.  On her birthday she was alert but today again she was not.  I brought her ice cream, she did not eat and asked to go back upstairs.  I asked the nurse, who said she is tired because she wakes up early.  This was 2:30 pm.  I called later and talked to the nurse and said I need to determine if this is a downgrade in her condition or if she has too much medication in her system as I am still concerned about the Seroquel I signed a consent for 2 months ago.  The nurse said she did not think the meds were doing this and she has noticed a downgrade, but she was going to put an order in to halve the dosage of Seroquel to rule out that playing a part in this.  

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.  

I have not been posting so much since my kids were on vacation from school and I have been busy with them but we have still seen my Mom weekly.  She can no longer stand at all, she is too weak.  It has become difficult to dress her since she hunches over so far down and I bought her maternity clothes hoping these would be easier to take on and off. She does seem in better spirits however, not as manic as when she was first diagnosed in 2006 and continued to be for so many years.  Maybe now that she can no longer walk she is not fighting to escape.  I don’t know. She sometimes still talks about how she wants to get her own place with some friends she made at the nursing home.  She always gives my daughter a stuffed animal when we see her and tells the kids she loves them.  My kids love her and actually like visiting with her.  Not even dementia can break our family bond.

I have had a couple readers comment how their loved one had both Picks and ALS.  My Grandmother, who was my Mothers Mom, had ALS and my Mom has Picks.  I know there is some connection and am wondering if anyone can comment and explain what they have found out on this link?  This is scary to have run in a family.  I will research this also but any feedback is appreciated, thanks.

My Mom is now to the point where she cannot stand straight up – she is losing total function of her legs.  She is unable to transfer from one chair to another on many occasions and it is becoming very difficult to move her. She is back in PT but it is not helping, I am afraid I have to admit my hope to have her walk again will not happen.  She is very weak too.  Yesterday she kept whispering, which was new.  She seemed very tired and the smallest movements were hard for her.  

When I picked her up from the nursing home a lady who I have only seen there once before said she was not being good, not listening.  I know the home has issues with her trying to move herself and falling since her safety awareness is so poor.  Maybe she tired herself out since I did not come until the afternoon?

I met with a new Care Coordinator on 5/8/12 and expressed my concerns my Mom could not walk or even stand without falling and how I wanted her back in PT or OT.  She seemed to agree my Mom could be doing better and said she would check if she could get these services again or at least be walked on a restorative plan.  They said they want to send my Mom to a private facility for a complete detox on her medicines.  This lady felt my Mom was more agitated and maybe needed some reworking of meds.  I said she was, in my opinion, agitated because stuck on dementia floor with mostly advanced Alzheimer’s patients who cannot engage whatsoever.  My Mom only likes to hang out with the staff since they can engage, not the residents, and who can blame her?  The lady seemed to agree this was the case also.  She said it would be nice if my Mom had access to a facility with younger residents that were not so far along in dementia process.  Agreed!  But unfortunately there are not many options in Illinois that are close enough for us to visit my Mom weekly.  I was told she would follow up on the detox.

Update:  I called 5/23/12 for an update, her tone was much cooler this time as though she did not think this was so important.  She gave me a story the social worker had a sick mother and she had to wait to talk to her.  I asked if my my Mom was being walked daily, she said she believed so…I did not receive any reassurance this was actually being done.  She also did not follow up if my Mom can get back into OT/PT.

She claims she will call me back later – for what I wonder?  Will she have any actual facts this time about my Mom and her care? 


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