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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.

Sadly, I am going to start visiting my Mom without my kids…not knowing if she will be coherent or not is too confusing for them to see, especially my 6 year old.  I spoke to the nurses and told them this and also asked if we can halve the amount of seroquel to see if that was playing a part in this new drop off.  The staff does not think the seroquel is doing this and all I can think of is I had to sign a consent to have her placed on it so it must be pretty powerful.  We will see how this plays out but as of now my Mom cannot walk, barely stand, is incontinent, and now is incoherent to top it off.  Depressing.

 

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 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.

Connie, my Mom

When I placed my Mom in a nursing home I had only medicaid as an option, which is a government paid plan.  Some nursing homes do not take medicaid and many that do are not great so you need to be very careful.  We live just outside Chicago so it is an urban area.

I asked everyone I knew for advice, and my Mother in Law had worked at nursing homes in the past and said I wanted one with a younger population that kept everyone engaged, she said very important.  I placed my Mom in a home called Imperial in Hazel Crest.  They took in psych patients and homeless/drug users in addition to regular needs patients.  I was totally naive at the time and didn’t understand the implications of this.

My Mom lasted there from Nov 06 – Jan 07 – she escaped through a window, flagged down a cab who she had take her to her sisters home 40 minutes away, there told the cabbie she was going to break in since noone answered.  He realized something wasn’t right and took her back to the local police station since he didn’t know where she was from.

My Mom said she was sick, they took her to a local hospital but since her husband discontinued her insurance (being the great guy he is) they wouldn’t keep her and transferred her to a mental hospital on northside of Chicago about an hour from where i live.  I was nursing my baby at the time and could not make the trip to see her, she was there for a few days and then transferred to Crestwood Terrace.  I went there to visit and was horrified with what happened to my Mother, she was drugged beyond belief and could barely stand and all her words were slurred.  She was falling and her room was a disaster, all the clothes thrown on the floor.  I knew I had to get her out ASAP and looked for another home.  Her sister ended up calling the Police for a welfare check because we were so worried she would die there and they took her to Palos Hospital.  There my Mom was incoherent and still drugged.  I told the Dr. my fears for her safety and begged him to keep her till i could find another place, he said OK even though there wasn’t a great reason to.

My family has homes in Michigan and my Aunt’s brother was in a home in Dowagiac so we thought maybe a good idea for my Mom to go there and have a family member to live with.  On the way to the facility my Mom had seizures and puked all over my Aunt’s car, and had to be hospitalized.  There they found she had broken shoulder (i suspect from squeezing through the window at Imperial to escape) and they could not fix right as she wouldn’t listen and keep a sling on so it kind of naturally healed.

It was too hard to have my Mom there, 2 hours plus drive, and I felt awful that I could not visit her more than once or twice in months.  My Aunt talked highly of this facility, how pleased she was with the care.  When I went they had my Mom in the alzheimers ward which is a locked unit, and a man peed on her bed when I was there, he was in bad stage of the disease.

The administrator of this facility ended up stealing all the money and it was shut down and I brought my Mom back to IL.

Here I placed her 5 minutes from me, at Concord, which was a small one floor facility that had no locked ward but a wander guard system, a bracelet that beeps if you go out the main doors.  We have had my Mom over every Sunday since she has been there, and it is nice because she can spend the day with us.  The staff there was OK, some were nice but some had bad attitudes and just seemed tired of life. They had a hard time with my Mom because she wanted to escape a lot, and was very anxious.  They wanted me to move her but I felt the place was good in other ways and so close that I put it off.  My #1 reason for keeping her there was they had an enclosed courtyard she could sit in whenever she wanted, and my Mom loves to sit in the sun.  Most facilities do not have this option, and residents are kept inside always.  She ended up getting out and being found by Police walking down 95th St. a busy street, in Jan 2010.  Then Concord said she needed her medications checked and transferred her to a psychiatric floor at MacNeal Hospital. There they kept my Mom for a week, said there was no reason and Concord just wanted an excuse to get rid of her.  One of my big complaints with Concord is their doctors rolled thru and said my Mom had Schizophrenia and BiPolar disorder, which is true but stays on your chart and confuses everyone.  When i tried to move her to a new facility and the medical records were faxed they denied my Mom based on these supposed conditions and it became a problem.

I ended up moving my Mom to Bellhaven in Beverly, a older place that had large rooms and nice sized closets.  There she had seizures and was transferred to Little Company of Mary Hospital for observation.  They had my Mom in nice private rooms for a couple weeks.  She was also diagnosed with a UTI so was catherized.  She did not walk for most of the time there and became very weak in the legs.  Toward the end they told me she was being moved to Psych ward and I lost it— told them there was NO reason as she has Picks which is organic illness not psychosis (i have told everyone that one million times i feel like) and demanded they give me a reason why – they had none.  Total incompetence on part of the staff.  After I pitched a fit they said she didn’t need to go and I had her moved to Lexington in Chicago Ridge.

I went to visit and was pleasantly surprised by how nice the facility was.  I remember having checked into it but discounting based on that they had no enclosed courtyard.  My Mom was here on Medicare not Medicaid, and the way that works you get 100 days of therapy but once you plateau and are doing better you are kicked off.  My first care conference one week in I was told she was going to lose the benefit and I had to move her again.  I was so frustrated by the way my Mom had been treated over the past couple months, and felt so helpless — all the moving had done terrible things to her mentally.  For instance, when she first came to Lexington she refused to walk and demanded a diaper, and when I would go up and force her to walk she was totally incoherent and would yell for the staff to help her every 10 seconds like she was a prisoner with me.  She finally was settling down a bit and I didn’t want more changes for her.

So I called the State Ombudsman office, and found my local contact who went up there to see what was up.  My problem was the hospital said 100 days, not mentioning the part about she could be kicked off at any time.  If I would have known she would only have a week or two I would never have placed her there.  The administrator contacted me and was nice but said no Medicaid beds open and I needed to keep looking.

By this point I am no longer naive and thinking the staff would take their jobs seriously and care for the residents properly, so I am very cautious with a new placement for my Mom.  I have been talking to everyone in the industry I can find for recommendations on a good Medicaid home.  Turns out Concord was one of them, where she had resided for a couple of years.  Noone really gives you advice, just a list of homes to check into.

My search goes on to find a good home for my Mom…

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