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Wednesday, 15 June 2011

NEW HOSPITAL POLICIES





To see today's update, scroll down to the post after this one. This is for those interested in what hospital policies were changed.


Here are the frightening new hospital policies my Dr. told me about. I know it is in B.C. and Alberta, not sure how if this is a federal policy or not. The surgeon had no idea about them, so I guess it's quite new. It seems like a bad science fiction script from a cruel civilization. Even third world countries don't do this. Even prisoners get better medical care than these new policies!!

1) You need to have a witness or advocate (visitor or family or friend) with you at all times while in the hospital, or you will be ignored. There are not enough nurses. If someone is there with you, the nurses will show up so the "witness" won't complain about neglect. Those who are alone get sicker from neglect. When you can't be there after visiting hours, which is 16 hours a day, you don't know if your loved one is getting what they need.
Most other countries supply a place for a family member to stay with the loved one in the same room. In this hospital, there is a small space for ONE chair. It's ridiculously tight. I wanted to stay all night, Mom is in a private room. She asked me to stay, so I wasn't bothering her. I was in the chair, and quiet, so I wasn't bothering nurses or other patients, but I couldn't talk them into it.

2) Your family Dr. (General Practitioner or specialist) can't be your Dr. in the hospital. If you go to the Dr. and he says "YOU need to be in the hospital" he can't arrange it. He has to send you to the E.R. and if the E.R. Dr. is in a hurry, and he doesn't know your history, he will NOT talk to your family Dr. He will make his own decisions, and if he thinks you don't need the hospital, you go home to get worse. You can't even get a home nurse unless that hospital Dr. says so. Hospital doctors are called "hospitalists, (as in "hospital specialists.") If you are admitted, you get assigned to a hospitalist. My Dr. said that a hospitalist has NEVER consulted with her on a patient's history, medications, or why she thought the patient needed admitting.

3) Then the next part is that if the Dr. puts you in the hospital, he can only treat you for the problem that sent you to the E.R. So if that problem is dehydration, there's a high chance that he will not give you ANY of the other medicines that you have been on for years, like heart medicine, stomach meds, anti-depressants, etc. Going without those meds can be dangerous, even deadly. That Dr. decides what you get or don't get and won't even talk to your family Dr. There is no continuity of care this way. While you are in the hospital being treated for one thing, you are developing other conditions from missing your other medications.

Another example of neglect:
In 2007, my heart specialist Dr. decided I needed a pacemaker. He submitted papers to get it approved, and the night before my Dr. appt., his nurse called me from home. She said that her calling me was against the rules, but that she had just been so shocked and upset about the letter that came in reply to my request for a pacemaker, that she was quitting anyway. She said that when I come in the next day, the Dr. will give me about 3 minutes time and tell me that I can't get a pacemaker, or maybe he will say he was mistaken and I don't need a pacemaker. The nurse said that the letter said "In order to keep the medical system afloat, it is often necessary to decline expensive treatments to those who are not contributing members of society." I'm on disability, but I am a contributing member of the WORLD'S society in other ways. I went to the appointment the next day, and he was eager to get me out, as the nurse said. He told me that he was mistaken, that I don't need a pacemaker. I said, "How can that be? You sat with me and showed me every test, and explained why the tests clearly showed I need a pacemaker. What changed?" He said, "You just don't need a pacemaker." I said, "So how was I miraculously cured of heart failure in 1 week?" He left the office saying "There's nothing more I can do for you." It was just as the nurse predicted.

The previous night, the nurse on the phone was crying, saying that now she understands why patients were allowed to die when there was an easy remedy. I have talked to about 5 people since then who believe their relatives were neglected or getting worse under the direction of the Dr., with the plan of accelerating their death, because they were too expensive for the system. I talked to my 80 year old Aunt who was a nurse. She said that type of thing has always gone on, like starving a very deformed newborn to death so it won't be a drain on the system all its life. When they saw someone very ill who had no visitors, they decided he had no support system in this life, so they also neglect those people so they won't be a drain on the system. So maybe this has always gone on, but now much more often and its not a secret anymore, it is written into the policies.
I'm sure Doctors are so frustrated, being told from above that they can't offer this or that treatment that a patient needs.
Since my Mom got supplemental insurance, she has been treated much better, so it seems more than coincidence that she was neglected so much before, but now that gov't health care isn't paying the bill, she is getting amazing help and attention. All Canadians can get this very cheap supplemental insurance, which has benefits on it that I have never seen on any insurance plan that I had while living in the states. go to
www.GMS.ca .
It truly seems as if the gov't goal is to cut costs, save money; to get rid of the sickest who are costing the gov't the most money.
Americans are afraid this type of medical care will happen with Obama care. I don't think it will happen. Obama made those laws to take effect in 2013, because he probably won't be president then, so he won't have to deal with it. The new president will have to, but he might just scrap the whole idea. If Obamacare would copy the best medical systems in the world, such as France and Denmark, it would be much better than copying Canada, UK and Australia.
Love from very tired Sheila


THE HOSPITAL LOST MY MOM!!





I'm SO frustrated! Every time I leave Mom, something stupid/negligent happens. I can't stay with her 24/7. I'm so sick now that I saw her for 1 hour after 2 days away. This time, even if I had been there, I could not have gone with her to this test, where the incident happened. They took Mom for heart tests and ultrasound, then instead of taking her back to her room, the put her out in the hall. At 4:00, all that section of the hospital closes down. No one was around. Mom thinks she was there for about 3 hours. Finally a drunk lady came by, probably not knowing where she was going, but I'm thankful that God sent her. Mom yelled out "Hey, can you help me?" The lady came over and Mom said "Can you please go find someone that works at the hospital? I've been laying here for hours." The lady said she'd be right back. Mom was worried again because drunk people have a short attention span, and she might forget about Mom. Mom had now been without her meds for 4 hours, and really suffering. Someone from the hospital came back and she explained what room she is in and how she got abandoned. The staff member took her back to her room, and the head nurse comes in and swears at Mom, saying "Where the hell were you? We even took your name off the computer, thinking you had gone home on your own!" Mom said "I was lost! How could I go home with a PIC line (central IV line that goes directly into the heart" and a number of IVs, and not even ability to sit or walk for very long?" So the head nurse said that she had to move Mom to another room, because she already moved her belongings out of her room! They got her back into the system. My brother was sitting waiting or hours by her bed. Didn't anyone see a visitor and an empty bed and wonder if something was not right? They must have moved her stuff out of the room before my brother visited. Mom explained that she needed her own linen, because she's allergic to the polyester hospital sheets. The head nurse said "YOU ARE A LIAR!" Mom said "look in my records. It says so there, and it says so on the white board at the head of my bed. Then she brought some oral medicine for Mom and went to the tap to get her some water. Mom said "I have bottled water, because I'm allergic to the chlorine in tap water." Again that head nurse said "YOU are SUCH a liar!!" Have you ever noticed that people who lie a lot assume everyone else is lying, but those who don't think about lying, are pretty trusting of others, up to a certain point.




I still feel the Lord comforting me and strengthening me. I feel like my brother and I are being attacked by the evil one hourly. Its just too much to be coincidence to see so many things go wrong each hour with every small task we try. But I know the Lord is stronger than Satan. My brother doesn't know the Lord, and he is such a terrible emotional state. He has heard my parents speak of the Lord every day, never forgetting to make a life learning lesson from the small things in life, but he has never been able to be spiritual. When I see his torment and suicidal tendencies, I imagine I would be in his same condition without knowing my Savior. I do keep praying for him and sharing the gospel with him and trying to comfort him.


Then they got her into the new room, and physiotherapy lady came by to take her for a short walk. She explained that she had just had the most difficult afternoon, and was lost for hours, and got no meds, and there was no way she could get up and walk right then." The physiotherapist was nice enough about it. When she gets out, I will be sending a report of all this craziness to the administration. That head nurse was doing a lot of things to just be spiteful to Mom last night, and we don't want her to be worse to Mom, so we won't report it now.


Good news is that she is down to 3 IV drips and one tube coming out of her body, and is on oral meds for some of the IV meds. The only thing we fear now, is that if her bowel is not working and not digesting, the oral pills won't digest and won't work, then she'll be in terrible pain.


I'm struggling. Lupus has decided to attack my central nervous system, causing the exact symptoms of M.S. (http://tinyurl.com/3lc83fx) Adding that to my other illnesses really makes me amazed how many things can be wrong with a body, but they still live on. Still recovering from that heart attack 3 weeks ago too. I need help really badly. Looking for someone honest and compassionate who won't charge $25 an hour.


My brother is so very frustrated, he is suicidal. I talk to him, but told him that maybe the suicide hot line would know better what to say. He said he called them once, they won't talk to you unless you give your name and address before you start talking, like they are coming to get you and put you in the mental ward or something. So he didn't call them again. It has really made me wonder if all 3 of us will leave this earth within a short time.

I am getting such wonderful emails and love and support from so many of you, and I thank you so much! There are so many more frustrating, heartbreaking things going on that I don't even want to discuss here, but friends like you are like angels, who help you fly when your wings are broken. I don't have much, so my friends are my most precious possession.

(Personal note to self, cuz I forget so much. Beryl, Burl)

Blessings,

Sheila










Tuesday, 14 June 2011

Tuesday June 14 Night




UPDATE SINCE I WROTE THE POST BELOW:
Mom has more than one Dr. and the second Dr. said she won't be home this week, so I'm praying she'll be protected from these super-infections that the other Dr. is afraid of.





I'm home struggling again today. Couldn't get to the hospital no matter how I tried.


The Dr. shocked us by saying that Mom will probably come home in a few days. That's good news, but its not enough time to get the medical equipment rented that she needs, or hire the help we will need. First he said she would be in the hospital for 4 to 8 weeks! Then he said that the IV he wants her on for 2 months can be given at home. Earlier, he said there is a new, dangerous medicine that he wants to try her on, and wants her in the hospital in case she has some bad reaction. I guess we will be dealing with any frightening reaction on our own. She's really not ready to go home. Mom can not even walk yet. She can only sit up for 5 minutes without terrible pain. They want her out of the hospital because there are so many super-infections there that could kill her.


So I am calling the nursing agencies to hire a nurse and also to hire someone to help make simple meals, clean, and run errands. The nurse can only come for half an hour in the morning and half an hour in the evening, so I will be her full time nurse while I'm on oxygen and using a walker.


I'm again so frustrated with people who say "If you need anything, just call me.", then I ask the smallest little thing and they say they won't. They shouldn't say it if they don't mean it.


I am so exhausted that it's scary. I come in the door, go downstairs and put my oxygen on and just fall asleep for a couple of hours before I can even change into my night clothes. Some nights I don't change at all. I just sleep in my day clothes. I am passing out after every 2nd sentence as I write this. Dang! Our life is like a nightmare coming true. Both of us getting sicker and sicker and not able to take care of ourselves or each other, but because I'm younger, I am expected to do so many things that are making me sicker every day!


The Dr. is only interested in getting her healed from her surgery, he won't look at any of the problems that sent her to the hospital in the first place. I have to take her to her own Dr. for that, and I will be lifting a wheelchair in and out if the trunk and pushing her in a wheelchair through a very long mall to do that.


Staying at the hospital up to 15 hours a day, then coming home to just collapse has been very hard, so on the weekend, and today (Tuesday) my body just crashed. I was a passing out all day and I could barely stand or walk due to pain.


I have been very clumsy and forgetting the most simple things, can't think of the right words when I talk.


I just took a break from writing this and called my Dr. she says she thinks my lupus is affecting my central nervous system. When it does that, it acts a lot like M.S. (multiple sclerosis). She listed the exact symptoms I'm having. Then add lupus symptoms and the intense pain of TN, (trigeminal neuralgia http://tinyurl.com/TNwiki) and Mom and I are in rough shape to help each other.


Wow, it took 5 hours to write this. That's crazy! So tired.

Going to call Mom then crash. Thank you all for caring. Don't know what I'd do without my internet friends.

Blessings, Sheila

Sunday, 12 June 2011

BAD CRASH, But a miracle too.

It takes a storm to bring a rainbow!!




Hello friends! Thanks for your compassion. I absolutely crashed this weekend, no voice, nearly impossible to walk, spending much of the time semi-conscious, which happens quite often, but I was freed from that for over 2 weeks, in spite of more heart damage due to not taking care of myself after that heart attack 2-1/2 weeks ago.



I think I've also had a miracle. NO TN (trigeminal neuralgia) PAIN! That has been constant since Feb 1. (see www.tinyurl.com/TNwiki) There's no way I could be there for Mom while fighting lupus, the heart attack I had 2-1/2 weeks ago AND TN. I also got my first grand-daughter this week!! I'm so amazed at how much she looks like my own newborn pictures.


We have had to do so much talking about funeral preparations and things to be done after she passes, that I'm exhausted emotionally and physically.

Now that Mom is a bit stronger, I will only go see her for 2-3 hours twice a day, if I'm even able to do that much. Was staying 8-15 hours. The nurses are very good to her, so I don't have to worry about her care anymore. I just have to try to protect her from these random weekend doctors that plan to send her home in 3 days, not knowing all the plans her usual doctor has for her, and not knowing that we need to talk to to the transition team, who will send a nurse to the house for a while. They need to at least keep her until she can walk to the bathroom, and until the give her something to eat and see if her bowel can handle it or not. If not, she'll be on Ensure for the rest of her life. There are other things her Dr. wanted to do, so I will be calling him immediately if some idiot Dr. sends her home too soon, because at this point, she and I will both die if I have to be her nurse 24/7. Oh well, one hour at a time. I love all of you for your compassion.



God bless you!
Sheila

Saturday, 11 June 2011

TOTAL COLLAPSE TIME.



HAPPY BIRTHDAY TO MY OLDEST DAUGHTER, CRYSTAL!!




Mom and I are both struggling today with pain and weakness and heart problems due to the strange weather. So sorry she has to deal with lupus pain and the surgical pain as well. My brother went early to see my Mom, and called me and told me not to come in for a few hours, Mom needed some sleep, because the hospital is so noisy most nights. I told him I was happy to know that, because I couldn't get there even if I wanted to. So he will go help her later today.




Mom got her NG tube (from her nose) removed last night! That's 1 tube down, 8 more to go. We talked in depth about what we both want done if one of us passes away before the other one. Then we spoke of our dream of getting away to a nice place for a little while. We have been stuck in the house for almost 2 years straight. Mom wanted me to get to the E.R. yesterday. My blood sugar was dangerously high, and my heart failure was acting up. I am often on oxygen at home but can't get it at the hospital and I do so much exercise/walking there, more than I could do in a week at home. I told her I really don't want to be admitted because I don't have anyone to help me the way I help Mom, and I wouldn't be able to help Mom anymore. Drove home before my sugar got too high to drive. I'm allergic to all diabetic drugs, so I need to buy more of the natural ones I take.


The parking problem turned out to be a blessing! I was offered a weekly pass (for my brother) and a monthly pass at a huge discount.



Total Collapse day for me, so job for the day was to post this post and the first pictures of my grand-daughter in the previous post. I hope to fill in some of the details of this strange saga we're going through, but need sleep right now. My body is really rebelling, but I'm sure the Lord has been carrying me for all this time. I couldn't do even 2 days of this before so many started praying for us. The power of prayer is so amazing. The scripture that says that if we have no strength of our own, if we call on God, He will give us some of His strength, it's true. Too tired to find that scripture right now, if anyone else finds it, I'd appreciate it. I think I need to hire a housekeeper to do things that don't get done due to time away and weakness. Someone to help me when I come home and collapse and can't even get something to eat, and often have to rest a few hours before I can even change my clothes. Slept in my clothes a few nights, too much pain and weakness to move or get into night clothes. zzzzzzzzzzz I keep blacking out. Better go rest. My friends are a gift from God!


Blessings, Sheila

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