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

[Kate51]

Glad you'll have family. You all have our prayers. People can turn it all around sometimes. I join you in hoping for the best!

[Mary Kay]

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]

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]

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]

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]

Mom when she modeled

Mom when I was little

Mom 4 months ago

[rejoice]

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]

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]

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]

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.