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Are You Caring For Someone with a Physical/Mental Disability?

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Mary Kay

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The Nurse called me at 9am while I was getting ready to go to the hospital, it seems Mom's heartrate dropped to a very low level and her breathing was very shallow. I got there and she was better, but weak.
Then they said her little infection at the feeding tube site was MRSA.

Here's what MRSA is:
Methicillin-resistant Staphylococcus aureus (MRSA) is a type of bacteria that is resistant to certain antibiotics. These antibiotics include methicillin and other more common antibiotics such as oxacillin, penicillin and amoxicillin. Staph infections, including MRSA, occur most frequently among persons in Hospitals and healthcare facilities (such as nursing homes and dialysis centers) who have weakened immune systems.
MRSA infections that occur in otherwise healthy people who have not been recently (within the past year) hospitalized or had a medical procedure (such as dialysis, surgery, catheters) are known as community-associated (CA)-MRSA infections. These infections are usually skin infections.

Now they are jumping through hoops. I had to wear a mask and gown to see her, her roomate has been moved out and all staff and vistors must wear gloves if they touch her! Nobody said anything about the mask or gloves until my cousin got there and tried to go in the room!
We had a good visit with mom, she stayed alert for most of the time but was tiring fast. That's when my cousin saw her asking questions like where am I or what is your name..my cousin is very close to mom and it broke her heart! She calls my name when she wants a nurse now, I am not sure if she knows me from them anymore.

The Dr. finally signed her DNR order, but now they want to remove the feeding tube in her stomach because of the MRSA and feed her with a tube down the throat. I am going to tell them no. She pulled the last one out, now she can't swallow. They can still feed her thru the I.V. while they give her antibiotics.

My cousin brought all the pictures I sent of my Mom and the family. The Nurses all came in to see them. Mom was a model in her youth. It was nice to see Mom smile while they ooooed and ahhed.

I made a great choice in nursing homes. The director that I thought was just the intake nurse, has been in to see mom everyday..I just seem to miss her as she comes later in the evening after work. She told me they have been trying to get the hospital to release mom to them, they have a full nursing staff and are geared for Hospice as well as rehab. But with the infection, that's not a good idea, it would spread too fast among old folks.
It's not like she is fishing for customers, In Florida you have 10 people in line waiting for one nursing home bed. She just took to Mom.

The Doctor finally told me Mom doesn't have much of a chance to recover, She is too old and frail, if they had gotten to her before all the weight lose and the thyroid hadn't done so much damage maybe. But not now. She had been tested for Tyroid 3 times in a year..at least her family Dr. did that much. This has been all in a three month span.

I want to thank you all for letting me vent here. It has helped me more then you will ever know. It doesn't matter if you read this, it's the act of setting the words down that help.
 

hsmamato2

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Jun 6, 2009
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Mary Kay,

I hope you know that you have been a terrific daughter! I'm sure somewhere in there your Mom knows it too. There is nothing easy about taking care of an aging/ailing parent. I've been there, twice. I'm glad you have been able to use this forum to put your thoughts in writing. You need a release valve. You did all the right things and made all of the hard decisions. Your Mom must be a great lady to have raised such a loving daughter.

May God Bless your work,
Mel
 

Mary Kay

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Mel, That is nice of you to say, right now I feel useless! It's been a hard few weeks. Believe it or not Mom was fine up until 3 months ago, elderly and forgetful, but still able to get around and do a lot for herself. She even helped me in the kichen, she cooks a mean fish supper!

But to tell the truth, we never got along. Mom was always very pretty and self centered as some beautiful women are. Not cruel, just not there. It's been harder on her then me because she is no longer in control of anything.

At this point I pray she passes gently, with dignity and grace before she is "helped" much more.
 

Kate51

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Mary Kay, I know the "useless" feeling, but you need to hang that on the fact that your hard work is finished, now. All the dedication and intensity of caring for a Mom is actually a reversal of roles, that happened long ago, she could not "mother" you, and hasn't been able to for a long long time, but you were mothering her. Her position in your life is now that of a very sick child, which of course is the worse thing anyone can live through. But all of your caring for her is finished, except for the emotional kind of caring. You just keep writing, it helps you to just put it all in words, but all of us have either gone through this or we certainly will at some point and this helps to ground all of us. It' nice you are so articulate.
It's so very hard to lose a Father, but when it's your Mother I think it's much more difficult, I suppose that goes without saying. And depends on the role she's played in your life. Your Mom was difficult, mine was an angel, but I don't think that enters into it at this point. I'm glad you have people there to share her journey, and that's what she's on now. It does help to look back, puts everything in perspective.
I still talk to my Mom everyday, as if she were feeling everything I feel. And I watch for little signs, like the one that happened two years ago. She had a small lamp on her kitchen table, after she was gone I brought it home and put in it my spare bedroom. I keep it lit 24/7, a little 5w bulb. One night all of us (my siblings & spouses) were here after a "birthday supper", and her bulb burned out. I looked around and said "Mom says Hi!" I had seen the light go out! They all went in and touched her lamp. Who knows! I replaced the bulb and got ready for another message, maybe. Or the time there was a ray of sunlight hitting one of her prized plates on my wall. Sun doesn't shine in there! So I tracked it, and sunlight was hitting a photo on top of the piano, through two doorways, and onto my kitchen wall. It was a photo of her and my daughter on her wedding day. That has never happened again.
So you take heart, I know it's very difficult to think of positive things, I firmly believe that dying is not the end of life.
 

Mary Kay

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Mom when she modeled
Wandawhitedress2.jpg

Mom when I was little
Wanda1.jpg

Mom 4 months ago
mom99.jpg
 

rejoice

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MaryKay, I know all about MRSA. My mother got it in the hospital. She had a long illness before this. She had surgery I will not get into this. It is way to hard to talk about for me. She had a terrible illiness that cause her to go blind.
I lost her 4 years ago this June. She was only 64 yrs old. MRSA is just awful. I had to wear the gloves and mask to see her in the hosptal. It was just awful.

What really got me is the nurses would come into the room and not wear the gloves and mask and treat her. Not all of them,but most of them.
 

Mary Kay

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They don't ask me to wear a mask or gloves, but they had a fit about my cousin! That's just strange. I do a few small things for her, like give her that little sponge on a stick with water to freshen her mouth since she can't drink. The nurses wear gowns and gloves but no mask. The Dr's don't even gown..just gloves.
She didn't have it untill they put the feeding tube in. She already had another small infection and they said her lungs may be involved along with the pnuemonia. I give up! The whole hospital thing makes me crazy anyway.

I am sorry to hear about your mom. It never gets easier does it.
 

Mary Kay

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I am so frustrated I could scream! They lost her glasses..she can't get out of bed, so I know it wasn't her. They are all saying..well did she have them when she came in? Most of these Nurses and Aides are new to me. The regulars seem to be off. I said she had them on at 3pm when I left yesterday!
She isn't on any thyroid meds! I hit the roof. Of course her Dr. had come and gone before I got there at 9am. I am sure he checks my house before he goes in to see her, I have met him twice in 2 1/2 weeks.
Anyway the first day she was there they told me it took a month for the meds to start working. She was on them for about 6 days. I give up!
I am going to ask that the minute she gets cleared for the MRSA she is to be transferred to the nursing home.
 

rejoice

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I am so frustrated I could scream! They lost her glasses..she can't get out of bed, so I know it wasn't her. They are all saying..well did she have them when she came in? Most of these Nurses and Aides are new to me. The regulars seem to be off. I said she had them on at 3pm when I left yesterday!
She isn't on any thyroid meds! I hit the roof. Of course her Dr. had come and gone before I got there at 9am. I am sure he checks my house before he goes in to see her, I have met him twice in 2 1/2 weeks.
Anyway the first day she was there they told me it took a month for the meds to start working. She was on them for about 6 days. I give up!
I am going to ask that the minute she gets cleared for the MRSA she is to be transferred to the nursing home.

This sounds so like my mom's experience. They lost her hearing aid.
They took it out for her to sleep and could not find it. Those doctors come and go so fast and they was not giving her enough pain meds. My dad hit the roof. He came in one morning and she was in so much pain.
She could not talk for the trach. She also had the feeding tube.
It was awful. She could not talk,see or eat. She wrote down things.
I am still not over all this.....
I feel for you. I will say a prayer for you and your mom.
 
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jen28f

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I am sorry for your mom and your family, MK. I have gone through this myself with my father with Alzheimers and mother with cancer. These hospitals and care homes can be so unbelievably uncaring, it makes me wonder why in the world some of these folks chose the professions that they did. As an example, my mother was in a nursing home after having cancer on and off for years. The last time she was in terrible shape...she was barely there, physically and mentally. There were strict orders that her rails on her bed must be kept up at all times...but an aide came in and put them down (we still don't know why) and she fell out of bed, hit her head, threw a clot and died from that!
And as we know, unless we are vigilant for our family and friends care, it is very rare that there will be someone at the home/hospital that will watch out, ask questions, etc.
God Bless you for doing what you can, keeping the rage to a minimum when it is difficult, and holding down the fort in general!
Your mom is a real beauty. Thanks for sharing, and be sure to keep us as your sounding board.
 

Mary Kay

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Mom pulled out her feeding tube last night! It seems she was getting her thyroid meds in it. The other Nurse didn't know what the meds was for some reason. When you have a hyper thyroid they normally just kill it with Radiation, iodine or surgery. They only give drugs to supress it when the others are not an option. Maybe that Nurse never had to give that drug before.
At any rate, now she can't get her meds! She refuses to have the nasal tube, she would just pull it out further damaging her throat. I am at wits end and she is in pain from laying in bed for so long.
This is so hard on her!
 

Jules22871

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I am so sorry to hear this MK. I can sympathize with your mother. I lay here on my couch day in and day out and the pain in my hips/pelvis and back just gets worse every day. I can see how she can get discouraged

Is there any way you can possibly be there bright and early? Doctors usually make their rounds starting around 6am. The only way you are going to get help for her is to talk directly to him and not go thru a nurse. I'm not saying there is anything wrong with nurses. They are awesome people and usually will do all they can to help you. But sometimes you just have to take the bull by the horns and demand to see the doctor. When we had our wreck it lacerated my liver really bad. The hospitalist couldn't for the life of him figure out what was keeping my liver function tests up so high. I tried telling the nurse it was the liquid Lortab they were giving me every 3 hours. I got 2 doses of liquid 10mg lortab with 650mg acetominifen (sp?) every 3 hours. That is way to much for a normal person let alone someone with a liver injury and I knew this but being in the pain I was in from all the injuries I really wasn't thinking all that straight. I finally was straight enough to tell the doctor this myself. He didn't even realize I was on it. Granted I had 6 different doctors seeing me every day but you would think they would know what meds I was on. What I'm getting at is the doctor may not even realize what is really going on and may need you to tell him. You are a very smart and articulate lady. I'm sure you can get your concerns across to him very well and help your mother get some relief and better care.

I pulled out my breathing tube while in the trauma ICU. Somehow I got out of the restraints and pulled that tube out. I still have a big gouged space in the roof of my mouth where I tore it open doing that. Amazing what we can do and not even realize it.
 
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Mary Kay

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Thank you Debbie and Jules.
The last few days mom has been talking about long dead people, my sister, her mother and others. Today she asked if grandma had died, My Grandmother died 15 years ago.

It's really hard on her to come in and out of reality. One minute she knows where she is but not why, the next she thinks she is at home and wonders who all these people are. She is also seeing people and things that aren't there, today it was a little cat!
She still has MRSA and can't be fed. She must be down to 90 lbs by now.
The nurses are frustrated because she pulls out IV's and her wristbands.

At least she has quit trying to get out of bed and stopped pulling off her heart monitor. Last week she was trying to make a phone call on it.
I have told her if she is ready to go be with the family she can, I would be O.K.
She promised to call me when she was ready to go..not sure how she would call or on what device. Also it's not clear if she meant she would call when she was ready to go home (to my house) or to pass away.

At this point I am dreading any calls at all!
 

Mary Kay

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53 hours in the Nursing home and back to E.R. tonight! They put her upstairs at about 10pm. So much for better.
She has food from her feeding tube backing up (like acid reflux) and going into her lungs. her lungs are infected. She can't swallow or cough, so it goes down the wrong way. Her B.P. is too low and her kidneys are not doing good, she is dehydrated. The E.R. Dr said she didn't get like this in 53 hours, it was this way when she left the hospital Thurs. afternoon.
All Mom is worried about is why Mike let me redecorate with so many curtains. She's talking about the curtains around her bed in the E.R.
Mike "let" me? That will be the day!:rolleyes:
So now we start over.
 
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