Today I have to lift a wheelchair in and out of the car 6 times and push Mom around, when I have had to use a walker with a seat for many years. I have been shaking with weakness most days this month. I'm sure praying to get through that. One minute at a time I guess. I just dread passing out when I'm out in public, because then I'll be in the hospital and Mom will be left helpless. The Dr. raised my pain medicine to 3x normal + some other pain meds in between the regular dosage, so my lupus is the worst it has ever been since my Dad died. I need to forget my medical care and just help Mom, it seems.
This will be Mom's first time using a wheelchair ever. She should have been crippled twice. She had polio, but was cured, then both legs were run over by a heavy gravel truck, which just crushed them, but again she was healed, miraculously. Crush injuries just do not heal like that naturally. That healing kept her on her feet almost until age 80, and she might get strong enough to get out of a wheelchair soon, if I can get her to eat to regain her strength! I sure needed the housekeeper for this today.Well here I go to pretend I'm superwoman! lol.
Thursday, 23 June 2011
Things are a bit tough here. Mom and I are both getting weaker, because Mom won't eat or drink more than a mouse eats. She can't regain her strength without eating. Also we found out the nurse comes 1/2 hour a WEEK and the housekeeper comes 2 hours a WEEK until she gets a summer job, then none at all. Time to go check Mom again. I don't even have time to find pictures for these posts lately. Will add some when I can. Now just making dozens of lists of different things Mom needs. Meds, care, foods, appointments every day for something or other, things to ask the Dr. for, things to have the housekeeper do, etc. Many things she needed done by now have not been done. I have not been able to keep up with it all. I'm so scared Mom will die due to my lack of perfect care. If the Lord takes her, so be it, but I don't want it to be caused by medical negligence or something I did or could not do.
Peace and prayers to you all,
Posted by Bluebirdy at 08:00
Monday, 20 June 2011
Posted by Bluebirdy at 13:25
Sunday, 19 June 2011
11 My son, despise not the chastening of the LORD; neither be weary of his correction: 12 For whom the LORD loveth he correcteth; even as a father the son in whom he delighteth. (Proverbs 3:1112).
He therefore gives you experiences that stimulate growth, understanding, and compassion, which polish you for your everlasting benefit. To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain. God loves you perfectly. They would not require you to experience a moment more of difficulty than is absolutely needed for your personal benefit or for that of those you love.
Posted by Bluebirdy at 21:26
Friday, 17 June 2011
It seems every small task that my brother and I attempted during these 3 weeks turns into a disaster, taking many times longer to do. I HAVE LOST MY WALLET! I don't even have the strength to think of all the cards that I have to report lost, then call and report them all, and then go to each place to get a replacement card. I can't even get a replacement for them until Canada Post strike is over, because they must be mailed to each place so I can go pick them up. I'm just crying and begging God for renewal and strength. I even cast Satan out yesterday, then I got worse. What a mess I am today.
Posted by Bluebirdy at 19:27
Mom will be released tomorrow. I'm glad I won't have to go there everyday, but from what the surgeon told me, it will be more work to have her home, so I guess I will be staying upstairs on the couch because I can't take the stairs 20 times a day. The surgeon told us all the details of what would happen if she lives or if she died in surgery. Both options described a very difficult life. I have not found a housekeeper yet. Decided to not go through that agency that wants $50 a day. I'll try to find an honest lady who doesn't charge that much. Today my pain is really bad. Too bad to get to the hospital. Hope God gives me the strength tomorrow. That will take 3 or 4 trips from the parking lot up to her room and back down to the car again, then trying to help her get from car up to her room in the house, and then the work starts. LGMS and courage again. Lord, thank you for giving me compassionate friends.
Posted by Bluebirdy at 12:57
Thursday, 16 June 2011
Posted by Bluebirdy at 20:51
Wednesday, 15 June 2011
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.
Posted by Bluebirdy at 19:08
Posted by Bluebirdy at 16:09
Tuesday, 14 June 2011
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.
Posted by Bluebirdy at 20:35
Sunday, 12 June 2011
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!
Posted by Bluebirdy at 21:33
Saturday, 11 June 2011
Posted by Bluebirdy at 14:23
Friday, 10 June 2011
Blogger won't allow me to center this photo right,
My first grand daughter arrived at 6:30 p.m. Thursday night. I have 4 grandsons, but it will be fun to make girly things for a grand daughter. YAYYY! I wish so much that I could be there for my daughter and also here for my mother. I'm not doing a very good job of caring for either of them, or caring for myself.
Another blessing, a number of church members have shown up! I hope they will stay in our lives as contacts even after Mom leaves the hospital. That's a first! What a blessing! I'm just trying to understand people again. I am tired of hearing people say "If I can do anything...call me." because I called 3 to do the smallest favor for us, and they all said they wouldn't, couldn't. People should not even say "If there's anything I can do..." if they don't mean it.
Mom is a toughie! She's talkative (wears me out actually) and is reading, talking on phone, so I won't believe what that surgeon said about her never getting her strength back. My God is stronger than his science book. They are still talking about weeks to months, but I'm so amazed as how soon she is doing things. Sooner than other surgery patients half her age, and she has a raging infection and lupus to deal with.
Last night she had another bad incident of neglect. She was choking and trying to get the nurses to pay attention, then the tried to hold her down, thinking she was panicking or something, then the tube in her nose had pulled out in the scuffle, so they started blaming her for pulling it out on purpose, and insulting her. Always when I'm not there! But I can't stay 15 -24 hours a day.
They replaced the tube, with much difficulty because her throat is so swollen. So now there are 7 tubes of IV medicine going in, and 2 tubes coming out, and a colostomy.
It made me mad that they confont her/bully her when I'm not there, so I was sure I would stay all night last night. Her nurse also has lupus, but not very bad yet, so she was very compassionate about us, hoping she will never get as bad as Mom and I. I stayed until about 12, then realized if I stay in that chair all night, then I will not be able to move in the morning. I will be no use to Mom and they might even wheel me down to E.R. and I'd get admitted to another floor, where I really couldn't help Mom. So I went home about midnight, scared of what they might do to her or neglect her with. I wish I was superhuman so I could watch her at all times.
I spent so many hours each day looking for a private nurse for when I can't be there, and now Mom says she doesn't want one, because in a situation like that, the hired nurse would probably take the nurse's side, not Mom's side. I'm getting sicker and weaker, I don't know how I will do this for months. Already my heart failure has added 10 pounds (about 5 kilos) of water overnight, swelling up my legs and feet, so it means my heart is overworking. Some days I do wonder if I will die before she will.
Everything else seems to go wrong that I try to do or touch or buy etc. and I'm praying for God to chase Satan away for a while, to give me a break. Took half an hour yesterday and 1 hour today to straighten out a parking problem, the machine that prints out permits took 12 dollars of mine, because I was trying to buy a weekly pass which is $25, but at $12.55 it cancelled the transaction. So now I have to appeal to an office our capital city 8 hours away, and find out how to get a weekly ticket. I can't afford much more of this $6 a day stuff. It ate up the money I had saved for my other daughter's birthday. I'll do a story on her when this is all over. She's amazing too.
Oh...I'm living on Ensure. Too stressed to be hungry, so not getting enough food, drink, sleep, rest. I told my boss of my online job that I would not be working for a while. He kept sending me work, saying how he would lose this good client if I didn't do it. I did the first 2 then told him NO MORE! I can't even do a good job when I can only think of this crisis. So I haven't gotten any work since. I can't work a part time job through all of this.
Back to the hospital
Posted by Bluebirdy at 11:26
Wednesday, 8 June 2011
Due to my mother's emergency surgery last night and now critical condition, I probably won't be contacting people for a while, as our hospital's new policy requires that I stay with her as much as possible, or find others who will visit if I can't, because those without an advocate/witness get ignored, due to lack of staff. She is not expected to get to the same level of strength that she had before this month's many hospital stays, (which was not much anyway) so this will mean a huge lifestyle change for us, if she survives.
You can write to me, and I appreciate any prayers or encouragement, but please be patient if it takes a while for me to reply.
Thanks, I love my online friends.
Posted by Bluebirdy at 20:49