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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.  

Nov 9 the Apostolic Church of God in Woodlawn neighborhood will offer a caregivers help event.  The goal is to aid caregivers in becoming better advocates for their loved ones.  The focus is Alzheimers but that is the most well known dementia and I am sure the info will apply to other forms of dementia too.

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.

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 post on Alzheimers research as it is a dementia and there are common links in some cases.  This article I read said not as many African American’s had been surveyed as European’s but they found when they looked at DNA from 6,000 there is a gene ABCA7, which had a strong link to Alzheimers and subjects who had changes to that location were 1.8 times more likely to have Alzheimer’s disease than people without the changes.  The effect was about 60 percent stronger in African American’s than in subjects of European descent, according to the team.

We decided this Easter to just visit my Mom at nursing home since she is unable to even stand and very hard to transport.  I rented the conference room from 9-11 and invited my Aunt who is a Guardian of another resident and also another resident who I am friendly with.  There were about 10 of us.  Apparently they give my Mom downers in the morning so she was pretty out of it at first.  I hate seeing her that way so right away I was a bit depressed but I had to keep my happy face on since my Kids were there and it was Easter. We brought them Easter baskets (the 3 residents in the party only) and we had a buffett of brunch items.  My Mom perked up about an hour after we arrived and started to engage a bit.  We stayed for 2 hours.  It is the first year I have not taken her anywhere so that is another milestone in this disease.  It is a sad one and I wonder what will be next.

I have been visiting my Mom as her nursing home every week rather than taking her to my house since she is so hard to move and my Husband had hernia surgery and cannot help me right now.  Going to the home in one way is easy because I am not lifting her into cars, around my house, etc. but in another way it is hard.  Why?  Because it is depressing.

 I bring my kids and we bring snacks and games and hope the one private room they have is open.  If it is not we have to wait for the dining room to be free from lunch and church, and then sit there with my Mom while they do Bingo and it is very hard to hear as they have to yell it out.  Sitting with the general population shows me how unhappy many are, which I can understand.  I would be miserable to live somewhere I could not leave and cannot do as I please.  One lady in particular has a nasty attitude, constantly complaining to the staff and being very unpleasant.  I know she hates when I am there with my kids because we are “too loud” during bingo and she makes comments.  She also thinks she is the Boss of the place and constantly tattles.  My Mom wanted a book off the Bingo cart and was immediately busted by her…No no you did not play.  

There is another man there who I have come to enjoy.  He lives there, seems with it and mobile so I don’t know why he is there but he likes to keep busy.  I bought him some pens and paper once and he comes by and talks to us now and then.  I can tell he would like to join our games, but I am afraid my Mom won’t like it as she sometimes tells residents to get away and gets jealous so I am afraid to rock the boat.  I wish I had more time to talk to him and see how I can help him….can I bring him snacks, is he diabetic etc.  

Being there for 2 hours and seeing so many in wheelchairs and with various issues is depressing.  I try not to let it bother me but sometimes it does.

A lady at my Mom’s nursing home who speaks only Spanish caught my eye from day 1. She would always dance, hand me random objects like a shoe, toilet paper roll, fork, etc. She would always wander and smile. Just recently I went there and she is now in a wheelchair. I guess she has been having problems and is no longer stable on her feet. This hit me harder than I would have thought, I saw my Mom lose her sense of balance and it brought me back to that time. I feel so bad for this women’s family and pray for them as they go through this change in her life. I HATE Dementia, it sucks everything out of a person…

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.

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