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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.  

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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 am interested in hearing about alzheimers finds as I feel all dementia’s have something in common.  Here is an article I saw that is rather interesting.  It says they have found that blood vessel excesses riddle brains of mice afflicted with Alzheimers.  Typically this disease is characterized by a buildup of amyloid beta plaques.  

“Amyloid beta deposits are thought to be a hallmark of Alzheimer’s, but recent research by the UBC scientists suggests that there might be another culprit behind the disease–an abnormal increase in blood vessels in the brain. They believe that the hyperactive formation of vessels results from the inhibited flow of blood in Alzheimer’s brains. ” 

Alzheimers affects 5 million Americans currently and the number is expected to skyrocket as the population ages.  Here is a link to the press release:

http://www.fiercebiotechresearch.com/press-releases/drugs-targeting-blood-vessels-may-be-candidates-treating-alzheimers?utm_medium=nl&utm_source=internal

 

I don’t normally take my Mom to Church with us but did on Sunday for the Christmas performance.  I worry she will pee and leak out as the diapers don’t hold but luckily she did not.  She was super excited and was singing loudly, all the wrong words for most part – if she did not know a song she sang one she did know or was a couple rows behind or ahead in the ones she did.  She also wanted to stand whenever the guy in front of her did…I was afraid she might fall over but she stood more that night then I have seen in a long time.  After the show she wanted some snacks, and had a big cupcake, punch and 2 pink cookies.  She told me exactly what she wanted.  The next day I received a call from nursing home none of her clothes fit, she needs size 16-18.  I said I bought her maternity clothes which stretch and to look for those.  No walking and her appetite for sweets is making her rather large but she looks much healthier than when she dropped to 95 lbs.

The Church we go to has a book club that meets during Lent – our group, which is hosted at my house, is doing an “action group” instead. Our ministry—nursing homes! Even more ironic they picked a place my Mom used to be at. This is honestly the last place I want to go but I know there is a need and it won’t kill me so I am in. We have a musician coming to play oldies and we are bringing gift bags for the residents and sending cards.

Unfortunately I received another call from the nurse at Bridgeview that my Mom fell again. Yesterday she fell and had a big bruise on her upper thigh by her butt and her knee as I previously posted…well today she tried to get out of her wheelchair and fell on her knees and is saying it hurts which nobody doubts with the bruising she already has. They are scheduling an xray and the nurse said they need to do something to keep her from falling. She said medicine is not the answer, and that tomorrow she will talk to her boss about what to do. She said the last thing we need is for my Mom to fall and break a hip and she is right. I am going to see what solutions they come up.

My Mom was taken back to Bridgeview yesterday morning. I went to see her today, she had just fallen and has a huge bruise on her thigh. They said she wanted to lay down for a nap, she has the alarm for when she gets up on her but still she fell before they could come to her room. She didn’t seem to mind it, which was good. She wanted to come over and she spent a few hours with us. She was very unsteady and weak, I believe the hospital didn’t let her walk as they had her sitting entire time when I was there. She will need to rebuild her leg strength. I did have her walk from car to house, she walked in my house and only fell once lightly and then she walked from car to foyer of the nursing home. She was tired by 6pm and wanted to go to bed. I discover they had boxed up all her clothes and they said it is “procedure” for when a resident goes to a hospital in case they don’t return. Ok, fine, but why wasn’t her stuff put back for her use? She certainly cannot do this. I spent some time unpacking and mysteriously her dresser was removed too. I asked where that went and nobody knew, but they finally found it in another room. Weird but that is how it goes at nursing homes I have found. I made sure my Mom was changed, the bed was lowered and there was a mat put on floor before I left. Hopefully this will help if she does get up and fall. I had tried unsuccessfully to get her into a Lexington when she was at hospital so she stays at Bridgeview for now. I think this place is ok, but I had liked the Lexington better – which of course is booked a year out. Tomorrow her sister is going to take her to Church so she will like that. The main issue we have is her mind still wants to go but the body cannot keep up. I hope she can get her strength back again, only time will tell.

As I blogged, last Thursday my Mom was taken to hospital for acting out and put on the psych floor. She actually likes it, as do many others who are admitted there for various issues if you did not know this. I know of people who consider it a vacation from life. I think it is a relaxed setting and you are provided with your meals and do small group sessions. They are monitoring her for a few days, they increased her Depicot from 500mg to 1000mg. I went to visit Sunday and she was doing ok. She kept asking the staff for a snack and they had just eaten so they told her it would be served in 1 hour. My Mom doesn’t like to not be served when she wants, and kept asking over and over for the snack and trying to get up and find one. She is very unsteady and a fall risk so they wanted her to stay seated. The staff was nice.

BUT – here are my complaints regarding MacNeal Hospital:

1. on Thursday when she was admitted, I could not get a live person to connect me to where she was so I could receive an update. I was put into a voicemail and was not called back. I called the next morning and demanded to talk to someone and after being on hold for 5-10 minutes finally a nurse came on. She told me my Mom was doing well and that she had a password for me. That is general procedure when on a psych floor, for privacy.
2. I went there Sunday to visit (they only have 1 hour/day visiting M-F and 2x on weekends). I did not know her floor or room number. I went to the desk and they told me at first she was not there, I was at wrong hospital. I said no, she is there. They said she is not in system. I said she is on psych floor and she said that is not in her Database and she could not help me. I said listen up, I have one hour to visit, and I am not leaving until I see her. She told me to check at emergency desk. So I go there and again they are trying to say they don’t have that info, I keep demanding to see her, I am getting SOO mad at this place. They say why don’t I have the room #, I said the nurse didn’t tell me and how should I know to have this, usually the hospital tells you at the front desk! They mention it is about HEPA, I said I know about HEPA but this is ridiculous. Finally, begrudgingly, the lady gives me a sheet of paper with her room # but no directions on how to get there so I have to walk around and ask workers. Also, the first lady told me to “find a security guard, maybe he would help me!” This was total insanity and I called and complained the next day. The head nurse called me back and is supposedly escalating this. I will not take this kind of nonsense, I know the system well enough by now to push back. I told the head nurse a hospital is supposed to be better than this, and compassion should be at the core of their ministry – she said the nursing home should have told me – give me a break, if there is one thing you cannot depend on it is good info from ANY nursing home once a patient is hospitalized. I told her not to make excuses, and they should be better run that a nursing home.

Today I went to visit my Mom, they had her locked in a wheelchair and she was clearly crying before I came, all red eyed and puffy. They said she was walking all over, not listening and they were afraid she would break a hip. I took her out and we sat downstairs together and she told me she hates it here, she is treated like a slave and a baby and all she wanted was to go to bed early and they wouldn’t let her. She said the staff stinks and it is the worst place ever. If my Mom is coherent enough to express herself I think she is right, she is being without the respect she deserves. I REALLY wish I could find a better facility or that I could bring her to live with me right now. I feel pretty hopeless, having her 24/7 is not doable for me with 3 kids and a job and it is SOO hard to find a good nursing home. I have lost my faith in them and that is not good. I spoke to one worker who seems compassionate and she said all nursing homes are the same, even if they are outwardly more inviting, newer, fancier. I suppose it is like day care for babies, you never get the quality of care that you would hope for. You instead get stressed out underpaid workers.

About a month ago i sent letters to my Mom’s 2 sisters, her son, and her 2 cousins.   I told them she was at a new place and was doing well.  I gave the address and phone #.  Nobody wrote or called.  My Mom keeps asking me why no one goes to visit her, and I just say I don’t know.  It is heartbreaking.  She not only lost her husband to this disease, was abandoned by her “friends” but now also is being forsaken by her family.
Especially hard for me to deal with is my brother, who does not work full time, has no children, and has not even made an attempt to visit or call in months.

I guess I should have expected this as the family has always been about themselves but sometimes it can get you down.  We are still visiting my Mom every Sunday and she really enjoys this, tells me she misses us and looks forward to our visits.

I wonder what the others are thinking, their reasons for being too busy, or is it fear or some other emotion?

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