Aitan,
Hi, how are you, and hows grandma doing?

Well, these last episodes, the worse ones she's had to date, have been mostly when she's on the toilet. It happened when she had a bowel movement and also when she urinated. She passed out in the middle of both, and each one there after. She never had a chance to even get up from the toilet. Her stool is very soft, so she never strains like she used to. I give her two colace everynight, and a dosage of Miralax everynight. So she does stay nice and soft.

Now there have been times where shes gotten that way from just standing from a sitting position, or sometime even after eating. And of course if she's still near where she was sitting, I sit her down again, have tried to put her head between her knees, (she fights me on that one) get the inhalant, and most times I can avoid fainting and it becomes just a near faint.

But these last episodes after the oh no's, she is already in a seated position, and she gets so weak, there's no way I can get her to a chair or couch. She just is out immediatley after that. So I dont' have much warning on the toilet ones.

As far as increasing her BP, we tried that. Mom used to take 100 mg of Toprol XL a few years back. Her bp was just getting too low, so she said to cut it in half, which was now 50mg. The last few times I had taken her to the doctor, her BP again was too low. So the doctor said lets try 25 mg. We tried that for awhile, and she was still very low. So the doctor said just to stop it for a few days, and see, maybe she just didn't need to be on any. She told me to be sure to check it daily, write it down, and report to her.

I have one of those automatic blood pressure devices, and I've made sure I sycronized it at my doctors office. Within two days her bp went sky high. Both days the top number was in the 170's, and the bottom between 85 and 90. And her pulse had also increased significantly.

Called her doctor, and of course she put her right back on the 25mg of Toprol xl. I check her bp at least twice a week, and it is on an average of 120/60. And even after these episodes, the first thing the medics do is check her bp. Its up a bit, but not down after these fainting spells. The first time they came here at 1am monday, it was 137/70. Now when they first took it, they couldnt' hear it, but Moms had that problem for years. Once they got her in the ambulance, the above is what is was.

When we returned home for the ER, and I called them again, they did get a reading this time right away. It was 170/75. A little high, but she had gotten very upset seeing them again. I refused transport to the hospital this time, and hoped for the best.

So I don't know Aitan, unless I start putting her through all this testing again, I don't know that they will ever find out the cause. And even if they do, there's really not much that can be done but for me to be as cautious with her as I can.

I have now got in the habit of when she goes to the bathroom and no ones around, to bring the phone with me. I figure if she passes out on the toilet I can't leave her to phone 911. And one of us always follow her around whenever she gets up from a chair or her recliner. She has a fit, but we just try to joke her out of it.

Thanks for the advice, and if you have any other suggestions, my ears are open. Thanks for being here for all of us. Your quite a special young man. And dont' forget to give us an update about grandma and grandpa.

Jackie

Jackie,
I'm not sure how insurance or medicare works for getting an xray in the home, but I know that hospice brings the xray to Bill not Bill to the xray. They have been out three times and done chest xrays. It's a heck of a lot easier than trying to get him into the doctor's office to have one done.

Keep up the good work you're doing, you'll make it through this, we all will. One day we will look back and ask "How did I ever do that"

Hi Jackie,

Grandma and grandpa are doing fine. They have a live-in CNA now that is a great woman with over 30 years experience in caregiving. She is really easing the burden on my aging grandfather. My grandmother is sleeping all the time now, and while the nurses and doctors that came to visit the house said it's normal, I disagreed. I felt she was being overmedicated, and so I requested that the doctor take away the zoloft that she was on. So far so good. She seems to be more alert during the day and not falling asleep while eating...

I wanted to get back to your mother's case here. I really feel you should get to the root of this fainting. It could be an indication of a worsening problem, and it may be treatable in this stage. I did some research on postural hypotension, and you're absolutely right when you say there are so many causes. You're mother would require some more testing to find hers. However, I think a little detective work might give your doctor a lead... so I was wondering a few things. 1) Can you pinpoint any changes in her medication regimen when the fainting started? 2) Does this only happen, or happen most often when she's on the toilet (not getting up, but on)? 3) Has the doctor ever diagnosed her with vascular disease or heart failure? 4) When she was taken off the beta-blocking medication (toprol) did she still experience fainting?

These questions can help a little in pointing you to the right direction in cause of her problem. If it's medication related then it may be a quick fix to put her on a different b/p med. If it's a neurogenic issue then that may be harded to treat. Regardless, I think it's important to find out the etiology behind this fainting, especially if it's become more common.

Here is the link if you'd like to look at it, kind of scientific http://www.aafp.org/afp/20031215/2393.html

Aitan,
I'm so glad to hear that your grandmother and grandfather have a live in. Much better for them both to have that kind of help. I'm sure this takes a toll on your grandfather, and this must ease his mind a bit too knowing that an experienced person as a cna is always there, and he can enjoy what little time she may have left. I have to say, I take Zoloft, and when I first started taking it, it really wiped me out. My body now of course is used to it, but there are still times when I feel i just want to sleep. I take 50mg/day. I've found out that I don't get as fatiqued if I take 25mg in the morning, and 25mg at night.
But if I do it that way, it seems I'm not as calm with mom. So now I'm back to taking 50mg at the same time. But I'm sure age also has much to do with it. So if for some reason you see she may need to go back to it, try a smaller dosage and spread it out.

Now to Mom. Well I think you may have asked me the number one question that I have been asking myself, and think I may have found the answer with your help. Yes, there was a change in Mom's medication. It is Darvocet. The doctor sent it to me more than a week ago. Mom has two very bad knees. She has bone on bone on them both. She should have had surgery years ago, but wouldn't. She was always in so much pain, and the Ibuprofen and Tylenol didn't seem to be giving her much relief.

The doctor about a month ago had given me Mobic for her, but that didn't seem to be doing much, and with the daily aspirin she takes, it was a very low dosage, and only one a day. So I called the doctor and asked for something else to help her along with the pain. She sent Darvocet -N 100 tablet, the generic form is propoxy-napap 100-650 tab, which is what I have.

I have the bottle in front of me, and its dated nov 3rd. I'm sure I didn't start it right away as many times by the time one of us pick it up, she's either sleeping in her chair, or I just forget. But I would think by the 4th, I did. The script said to take one tablet every 6 hours as needed for pain. I decided rather than do that, and I did check first with the pharmacist, that I would give her half, and give it to her every 3-4 hours. What I actually ended up doing was only giving the half to her most times twice a day. If she was really in pain, she would get one and a half throughout the day. But mostly much less than what the prescriped amount was.

Now the 4th of Nov. was tuesday, and monday the 10th, at 12:30am she couldn't sleep and got up and came down here by me as I was at my computer. I remembered that I had only given her one Darvocet that day, and she was complaining about her knees, so I gave her a half thinking it would make her a bit drowsey to fall asleep. At 1am is when she went to the bathroom, started a bowel movement, and passed out shortly after. When we returned from the hospital at 4am, she sat a few minutes, went to urinate, and that's when the second fainting spell happened. I never got a chance to even wipe her then either as boom, she was out.

The third incident was on Monday again at around 11am. This time she was also on the toilet, had just finished on the toilet with a bowel movement, but off, wiped, and starting to walk to her chair, with help from my husband. I had also given her a half a Darvocet maybe an hour before that. Out like a light again. It was at that time that I thought, could it be from the Darvocet. But she did have two more incidents that day, one around 6pm - but it was a near faint. I had her breathe through her nose and out through her mough, and that seemed to help. But she was not on the toilet this time. She had been sitting at the kitchen table ready to eat.

The next was at 10:45pm still on Monday. Again, no toilet, just walking to her bedroom after sitting in her recliner for hours. She had been sleeping there, but I woke her, gave her some water, and made her sit there a good half hour before she got up from the chair. My husband started walking her to her bedroom, we got up the two steps, and brought her to the bathroom before going to bed. She never made it to the toilet. He legs gave out, and out she was. Husband layed her on the bathroom floor, we got the ammonia inhalent, and she came to in less than a minute.

So far she has been off the Darvocet now for over 24 hours. She had a small incident yesterday, tuesday, around 1pm, after urinating. Me and GRanny Nanny were able to get her to the kitchen chair, used the inhalant, put her head between her legs, and she was a near faint, but did not faint.

Today she was full of energy like you wouldn't believe. Her and GRanny Nanny talked all day, she had a great lunch, she laughed, listened to Granny Nanny's stories about her evil ex husband, and had a ball. She never slept once, which is very unusual. Then around 2pm, as she is sitting in her recliner, she starts moaning and crying and just saying oh my God, oh whats happening. I had Laura recline her chair, I ran for a paper bag, we made her breathe in and out of it five times, gave her a few seconds, and then another five times, and that was it. She was fine, we joked with her, and no after affects.

I had remembered about the paper bag thing a few days ago for hyperventilating, and thought I would try it, but forgot with the other episodes, and it just popped back in my mind with this episode.

She continued to have a good day, had a good dinner, and has not fallen a sleep until just now. And I'm waking her as I'm writing this.

I mentioned this to my husband that was it possible that she was passing out from the Darvocet, or could it have just been coincedence, as she had been already taking it for a week. But this has happened before, months before. She had a 30 day heart event monitor back in May. It showed a bit of palpatations, some pvp's, and Afib. But the heart doctor said everything was so slight, that they really didnt' think the fainiting was due to that. And of course when she did have the monitor on, she never had any big episodes, just some near fainting, and very few.

You asked about the Toprol. She had only been off of it two days, and she did not have any episodes. Her blood pressure had spiked up too high, and per the doctor, put her back on 25mg.

The fainting, when it originally started, which was when she ended up in the hospital in March with Bacterial Pneumonia, is so sporatic. In March, the first time she fainted, beside the bacterial pneumonia, she was severly dehydrated. She has been doing that on and off since then. In previous incidents, it was always after she ate. Now its the toilet. So to say the least, this is just all so confusing.

She's had a chemical stress test, swallowing test, head ct scans, which show atrophy (sp) which they say for her age is normal, blood work, extensive blood work, abdominal ct yearly for the surgery she had - AAA. She has two stents for a blockage, and that was back in 2002. That is checked also. She never had a heart attack, only the blockages. She also every 6 month has a ultra sound of the carotid arteries, and although she has blockages of 60-70% in both, the last one actually showed improvement from the previous. The only thing she didn't have is a Brain MRI. She had one years ago, before AD, and couldnt' take it then, and was a bit sedated.

So the problem now is that if she continues all this, I have to make a decision to let her go through all this testing again, or just let nature take its course. She fights me so much on everything, and unless an emergency comes up again, it would all have to be outpatient, and she is just not strong enough to be doing all the in and out and waiting. She most of the time is very weak. And the only time you really think she has any quality of life, is when she sits in the recliner. But as soon as she gets up, walks, comes to the dinner table, anything beside sitting, its like night and day. She has to always have someone walk with her, as she is very unsteady, and refuses to use the walker. The last few days I've been insisting on it when my husband is not home, and she gets so mean. But I won't let her off her chair unless she uses it, and do I suffer until she gets back in it. Says I treat her like a baby and a crippled. (her words)

Well Aitan, you asked, I answered. It was really hard to put this in Cliff notes, so I'm sorry about the length. I did go to the site you sent me, but only for a little. I'm going to see if I have a chance to read through it tonight. But it is very informative.

From everything I've searched, fainting is not an easy thing to find out the whys of. I even went on a forum for fainting, and many younger people that have this can't find out why either.

The doctor has told me that the more that this happens, the longer she may stay out each time, until she finally won't come to. I can only hope that that will be her way of going.

Oh and the pain she was having in her calf? Gone, completely gone!! So I guess I have to learn not to panic so quickly, as everytime I do, and I take her for a test, everything is normal. Maybe I "should" listen to her when she says to me, "I'm not going to any doctors or hospital, I'm healthier than you!" Seems like she may be right.

Jackie

Aitan,
I just read through that site you sent me. Noticed a few things. I had read before that ibuprofen does help with the orthostatic hypotension, and I was doing that regularly for a while until I started on the mobic and darvocet. And now when I think of it, she hasn't had any of those episodes for a very long time as I had been giving her ibu at least twice a day.

One thing I found interesting was about the water intake and salt intake. The is the first time I've heard of increasing salt intake with anything you have wrong with you. And of course water is so hard to get down her. But I'll buy stock in the Morton company if it will help her.

And today, I did increase her liquids, but had laura give them to her, and she was much more cooperative with her then she is with me. She had two cups of white grape juice, a glass of water, and some canned fruit. So maybe there is something to say for liquids with this.

And for dinner we had chop suey, now talk about salty with all that soy sauce. Hmmm - I think you may have helped me find the solution for this mystery sooner and more than you thought. Too bad that the doctors don't know all this stuff huh? So very sad that people have to investigate their own illness. Makes one wonder what they really do learn in all their years of schooling.

Jackie

Hey Jackie, this is quite the mystery. With such an extensive medical history it's hard to pinpoint what the cause is. This could very well have to do with the carotid artery blockages she has in her neck, may want to get that checked out again. Also, if you can pinpoint when the fainting started to a certain day when she had a virus or bacteria then it may have indicate she has a dysautonomia caused by this infection. This is one of the common causes of postural hypotension. She would have to be tested in a tilt-table test for that diagnosis. There are treatments for that. I was thinking medication interaction as well, since you said it was getting worse. Not sure if darvocet would have such a drastic effect, I would lean more towards the toprol dropping her blood pressure too low. I think a second opinion is due here if her physician isn't finding the cause of this problem. One last thing I wanted to mention.. don't increase her salt intake if the physician doesn't tell you to. Increasing salt intake helps retain fluid which helps with blood pressure, but in your mother's case is not a good idea since she's taking medication to lower her blood pressure. If the doctor thought this was a volume problem, then he would probably recommend that to you. I'm really not sure why the doctor didn't order anymore tests to figure this out, but I think you should see another doctor to get to to the bottom of this. I don't like that he said the fainting would get worse and worse and one day she wouldn't come back, that's not the job of a physician to say that to a patient, their job is to fix the problem. Let me know how this plays out please.

I'm not a doctor at all, but I think Aitan's right, time to get some fresh eyes and ears onto this problem. There are so many possible causes (it could be the carotids, could be something with the Toprol where she will never be able to get just the right dosage, it will always be too much or too little) that it's almost impossible to pick out what it could be.

Aitan and Judy,
I should really have mentioned much more about Mom's doctor and I. I've known this doctor for many years, and she pays very close attention to anything that mom needs. And always suggests ordering tests for whatever medical problem mom has. But so many of these tests turn out to be either very invasive, or very long in time. And my choice has always been to put mom through the least trauma as possible due to the Dementia. As we all know, that never seems to help. And with Mom, it really advances her.

When Moms doctor does want to send me for a certain test, I always ask her if whatever tests she sending mom for, if it has positive results, in other words if they do find a certain thing, what the next step would be. If she says that the next step will be to try a new or different medication, then I go for the test, as I always have. But if she (the doctor) tells me that the next step will be an invasive procedure, or surgery, there's no point in getting the test done. Mom is no longer at the point where she can take any more invasive procedures or surgeries. Her knees and the osteoarthritis in her spine alone leaves her in much pain after things of this nature. And if you would have seen her two years ago after the AAA surgery she had, I really can't believe she made it through the trauma of the surgery itself, and the medications. It took me two weeks after that to get her through withdrawels from all the strong medications they gave her for pain alone, plus infection.

I will never again put her through any kind of trauma of that nature again.

So what her doctor told me about her eventually getting worse with each episode, and possibly not coming out of one of these fainting spells is something she knew she could tell me based on how she knows I feel about invasive things with mom. My answer to her was that I could only hope one day to see her go that peacefully. But she also said it wanting me to know, that if that is the way I chose, not putting her through many tests, that this is the way she would probably go if this continued.

Mom is a very difficult dementia patient when it comes to going to places, especially to the doctor or for tests. And yes, I could lie, and have many times. But she has literally for hours at a time, told me that I am lying to her about where we are going until I get so frustrated, that I yell at her and tell her she either has a doctors appt. or a test. And when I have talked her into going, and we pull up at whatever facility were going to, I can't get her out of the car. Not just physically, but she refuses as she still does realize what certain places are. She sure knows its no restaurant.

Mom was always the type of person that never refused to go anywhere. If I told her we had an appt with the doctor or a test, she would willingly go, and listen very carefully as to why she had to. She never gave me a hard time about anything. She was very mild mannered, and would basically take my advice about most things. Well, as you know, that changes.

See, I want to hang on to my mom as long as all of you do. But not at the expense of more pain and aggravation for her. I feel her quality of life will not change that much and will not ad many more years on to her life. I would rather have her with me for a shorter time, then to give her more to deal with then she can handle. And if she does live a very long time, her knees and her spine will eventually keep her from having any quality of life. She is not the type to sit in a wheelchair or lie in a bed. That alone will kill her.

And of course, I'm not totally being unselfish here. Each episode taking her for tests, hospitals, doctors (and there have been many, specialists etc) has taken a toll on my health, and also my husbands. And before mom's AD, she always said I will never live with my children, and if something happens to me where I can't live alone anymore, put me in a nursing home. Of course little did she know then she was to get AD, and not want that to happen anymore.

I would rather have her gone, then go the nursing home route. I know that may not be a choice, but if it was, that would be it. My Dad has been gone for 22 years next month. Mom didn't drive, so grocery shopping, doctors visits, mall shopping, medicine pick ups etc have all been done by me for the 20years prior to her moving in with me. When she was sick, I stayed overnight with her. And when she had surgeries, she came to my house to stay. So as you can see, I've already had this job for 22 years. I've done it willingly and with love and have been so fortunate to have a mother as she was. My first priority has always been my mom, my second my husband and I. She still is my first, but not without now unselfishness for her and for myself.

So tests are fine, and getting to the root of an illness is fine, and adjusting medications is fine. But each person has to know the best way to do that for their loved ones, and what they can tolerate and what they want out of it for them. I wish I could have her for another 10years being vibrant and still having something for her to look forward to each morning. But that isn't going to happen no matter what I do, and it won't to any AD patient.

Now of course, if Mom should have one of these fainting episodes again, and depending how long she's out, of course I would not hestitate to call 911. And depending on what the medics would tell me about her vitals, is when I would decide if she should get to the hospital or not. And if they said she should have this test or that, depending on the test, she will have it, as of course I would like to find out why. But until she has another episode, no tests will happen. She has a DNR, that she signed many years ago. That will be the hardest thing to do if she would not come out of one of these fainting spells. And of course, I would hope before I would have to resort to that, they would be able to tell me that a Recesitate would not help, or what she would end up like before I have to agree to that. Think though it won't be that easy.

To change doctors at this point in her life would just be too hard on her, and again, her doctor is always willing, and of course wants to run anything that would possibly find this out. But she has had this now since March, and has been through so many tests from not only her doctor, but heart specialists.

Thank you guys so much though for helping me be on top of things. I still will continue to investigate many things on my own. I have been giving her extra water, not alot of salt, as Aitan you were right about the BP thing, so too much I know is not good. Giving her ibuprofen regularly, reminding her and being by her side when she stands, that she stay put for a few, having her use the walker. She had another great day today. I can't get over the change from monday. And as much as Darvocet may or may not be the culprit with bringing this on again, she will never get one again. Some coincedences just have to be taken to heart.

Thank you soooo much. And of course, I am always open for anything you may find out and have to offer. I dont' want you to think that I don't like any suggestions you have all given me. Just wanted to let you know a little more history of Mom.

Jackie

Jackie, thanks for giving us a better picture of the situation. I hope you don't feel you have to justify your decisions for us, we are here to support you regardless of what you decide for your mother. Not that my opinion should be taken into account in your personal decisions, but I totally agree with your views on your mother's current state, and I would probably do the same if I were in your shoes. Thanks for sharing this with us, we're always here for you

Jackie, I absolutely understand about tests/trauma/doctors and dementia. I actually am operating the same way you are. I'd like mom to stay around as long as possible, BUT if it comes to surgery or some intervention or invasive test - no, we aren't going down that road. All of her doctors are aware and agree with this too, so you're in good company.

LOL - none of that helps me stop worrying about things that could go wrong with her though, so I do worry, just like you do. I'm sure we all do.