I was in my studio working on an art project when I heard the loudest rumble type noise coming from upstairs. I ran up the steps as fast as I could calling out hubby's name and found him flat on his back on the floor. He was conscious, but dazed. He said he was standing up, putting his back brace on. He started to get tunnel vision and before he could move, he got light headed, his knees buckled and he went down, falling between the end of his bed and themwall, hitting both on the way down.
I told I'm to just lie there. Took his bp which was 108/77, pulse was 72. He took his glucose which was 165.
We got him up and into his bed after about 10 minutes on the floor.
So we had an interesting conversation.....what do I do if he does go completely unconscious. He reaffirmed that he does not want me to call 911. I asked him how long I go leaving him unconscious. He said he did not want me to call 911. He does not want to go to the hospital no matter what.
So I have this vision of him being outmcold for 3 weeks. Funny, but it's not. He scared me to death today just going light headed....what will I do when he passes out?
There has to be something going on. He doesn't want to call the doctor. So I will just blog it here so I have a record of what happened.
I keep thinking that if I have a heart attack, then I don't have to go thru this!!
Dw
Friday, March 11, 2011
Thursday, March 10, 2011
My "sister" wives.....
Your comments get me through the day. Thank you so much!
I remember they gave hubby straight Sprite in the hospital - not diet sprite. I wondered what they were thinking! But they did limit his intake quite seriously.
You are very wise to be the permanent driver. I, too, will not go anywhere with hubby driving. Well, fortunately, at this point, he's not been released to drive. But if he does need to go somewhere, he will take his truck and I don't go with him.
As for the blood infection, be aware that if they dose him with high levels of antibiotics, he is likely to end up with c diff in the hospital as did my husband!
Overall, I think hospital staff needs training on diabetes. You would think with the high numbers of diabetics in this country that it would be foremost in training. But apparently, it isn't!
Here's prayers that your day did not go as bad as you anticipated! Hugs coming your way!
No temp, no low sugar. I think it was just a "thing" he went through. I turned on the fireplace, covered him with blankets and 2 hours later, he tossed the blankets off and turned the fireplace off. Thank goodness!!! :o)
Lynn, hubby sots his own pills, has his cell alarm set to take his insulin, he renews his own RX, he does all that. He has too. Yet he continues to admit certain things like having high blood pressure. For some odd reason, in his mind, if the BP monitor reads that his BP is good, then he doesn't have HBP....even though he takes meds to keep it down low. Strangest thing in my mind.
In the last 2 years, since his heart problems, I've been attending every medical appointment with him. Before that, I never went. And I found out what the problem was. He would go to the endo and tell her that he didn't have a BP problem! He would visit the nephro and tell him he didn't have a sugar problem (even with an A1C of 8.0!!!) So when I started going I'd just quietly say "but he does take atenolol for his bp"....or "he takes 32 units of Humulin RU 500 Concentrated in the morning" and the specialists started "getting" it. They are outside consults to our HMO and do not have access to his medical file. So I started copying stuff and putting it in binders and taking it along with me.
When he first went to see the cardiac specialist and told her that he did not have a BP problem - I nearly shot through the ceiling. I was so glad I was there. She took one look at me, rolled her eyes, held her hand up to "silence" me before I could get a word out and gave him the lecture of his life.....he was there because he absolutely had a blood pressure problem....and off she went. She did not mince words and I have loved her from that moment! First specialist who saw right through him! :o)
Lilly, just to clarify, it was two different dialysis machines.....each one of them broke!!! and I never took you as being flippant, not for a second! Your experience is quite valuable to me as I went into this cold turkey - having never done any research or asked any questions about dialysis. Because my hubby had always said he would never agree to dialysis, it was all quite frightening to me. I had to sign the release forms and that in itself was a huge step.
I know what you mean about not knowing whether to laugh or cry. I do really try to laugh most of the time. My husband, just this week, told a doctor that he no longer has heart problems. Well, I hate to tell him this, but remember, his veins were so bad they couldn't do 5 bypasses on him....they only found enough veins to do 3 bypasses. What does he think is going on in the 2 spots they couldn't bypass???? YIKES!!! We go to see the cardiologist on 4/20. I am quite anxious to see what she has to say when I tell her his heart rate was 140 for 2 days and 130 for another 3 days after surgery. It did not go up and down....it remained that high for 5 days. Now, tell me that didn't do some damage to his heart???
When I was talking to him this morning about my nightmares last night, I said that I thought the only thing he really remembered was his dry tongue. And maybe that was a true blessing. His quest for something wet, for ice, for a swab, for a wet washcloth....his desparate cry for just a sip of ice.....kept him from knowing all the other horrible things that were going on. And that he will never have any memory of it. But I was sitting right there and while he only remembers how dry his mouth was.....I remember 100% of every ounce of what was going on to every part of his body.
And that's where a diabetic has us beat to heck! They don't/won't/can't remember the things we do.
Love all your comments because I know we are in this together.....one day at a time......sometimes just one moment at a time.
DW
Tina wrote:
How have I survived this long ... well, I just love him. Year 1 went into year 2, into year 3 and so on and so on ... you get the picture. It has been really hard. As we are in year 6, I have been through the ups and downs, the driving nightmares, (I will not get into the car with him if he even thinks of driving, I am the permanent driver). As I read all of the posts on this site, I really feel for each and everyone of us that have to live through this nightmare! In my situation, my hubby has really been sort of healthy (maybe healthy is not the right word, but I guess he has not had all the "bonus issues" that I have read about). It has caught up to him. As I chat, he is in the hospital with a very high heart rate (they are treating him to hopefully make sure he does not have a stroke) he has a blood infection, (not sure how or where he got this), and the list goes on and on ... but onto the hospital care as a whole. He is a diabetic on dialysis, in the hospital with very little restrictions on his fluid intake, are you ******* kidding me. Obviously, this man cannot control his fluid intake by himself, so why do the nurses just come in and give him cups (20oz.each) of water and of course, my favorite, ginger ale (not diet, duh, he is a diabetic) and of course, he says nothing and just drinks it all down!!!!!!!!!!!!!! I guess when I really think of how I have survived the last 6 years, I will say prayers and lots of them! A really "bad" sense of humor! And, finally, just one day at a time. I have an awesome family whom I have gotten a ton of support from. I was listening to a talk show on the radio the other day and the speaker said "you can't climb over crap ... you just have to go through it". It made me chuckle to hear that, but maybe it's true! So I guess I just am in my really, really high "fishing boots" and "trudging through the crap!" So onto my "bad sense of humor", I will end my story here for the night because I gotta get my rest, because I just feel that it's going to be a really "crappy" day tomorrow!!!! Sleep well my sisters ... my prayers and love are with each and every one of us!Tina, very good advice - to wade through the crap one day at a time. It's all any of us can do. As for the high heart rate - high potassium? I read that can happen easily on dialysis. Happened to my hubby.
I remember they gave hubby straight Sprite in the hospital - not diet sprite. I wondered what they were thinking! But they did limit his intake quite seriously.
You are very wise to be the permanent driver. I, too, will not go anywhere with hubby driving. Well, fortunately, at this point, he's not been released to drive. But if he does need to go somewhere, he will take his truck and I don't go with him.
As for the blood infection, be aware that if they dose him with high levels of antibiotics, he is likely to end up with c diff in the hospital as did my husband!
Overall, I think hospital staff needs training on diabetes. You would think with the high numbers of diabetics in this country that it would be foremost in training. But apparently, it isn't!
Here's prayers that your day did not go as bad as you anticipated! Hugs coming your way!
Lilly wrote:
Best wishes to Tina, as I can't imagine how hard 6 years of dialysis and counting must be! She could probably teach us ALL something. As for your hubby being cold, is he running a fever? Usually when my husband is complaining about being cold, he has one. Might want to check (or maybe you already have). Wondering if there could be a low-grade infection going on after all his problems in the hospital, etc.
No temp, no low sugar. I think it was just a "thing" he went through. I turned on the fireplace, covered him with blankets and 2 hours later, he tossed the blankets off and turned the fireplace off. Thank goodness!!! :o)
Lynn wrote:
My hubby was in denial for years... so that is why at some point I told him I was not going to call in his pills pick them up and put them in the weekly pill dispenser...I wanted him to own the fact that he is diabetic...It was scary and one of our sons was mad at me...thought I didn't care about him...now he sees for us it worked/works...but hubby can still take care of it...if the day comes, I will help of course...but for him it MADE him accept his disease and deal with it...I also did it because I felt that if I had that many health problems I couldn't see him taking care of my pills etc...I knew I would have to...and I do for me now that I do have a disease...so any way...they HAVE to accept and embrace the disease...otherwise it's ALL on US and that's not fair to either of us. RIGHT LADIES? Enjoy the bubble bath...I started doing yoga and that seems to help me with everything! HUGS and LOVE PS cold? how is his thyroid?
Lynn, hubby sots his own pills, has his cell alarm set to take his insulin, he renews his own RX, he does all that. He has too. Yet he continues to admit certain things like having high blood pressure. For some odd reason, in his mind, if the BP monitor reads that his BP is good, then he doesn't have HBP....even though he takes meds to keep it down low. Strangest thing in my mind.
In the last 2 years, since his heart problems, I've been attending every medical appointment with him. Before that, I never went. And I found out what the problem was. He would go to the endo and tell her that he didn't have a BP problem! He would visit the nephro and tell him he didn't have a sugar problem (even with an A1C of 8.0!!!) So when I started going I'd just quietly say "but he does take atenolol for his bp"....or "he takes 32 units of Humulin RU 500 Concentrated in the morning" and the specialists started "getting" it. They are outside consults to our HMO and do not have access to his medical file. So I started copying stuff and putting it in binders and taking it along with me.
When he first went to see the cardiac specialist and told her that he did not have a BP problem - I nearly shot through the ceiling. I was so glad I was there. She took one look at me, rolled her eyes, held her hand up to "silence" me before I could get a word out and gave him the lecture of his life.....he was there because he absolutely had a blood pressure problem....and off she went. She did not mince words and I have loved her from that moment! First specialist who saw right through him! :o)
And Lilly wrote:
Unbelievable that the dialysis machine (actually broke!) twice. I can only imagine what that was like. I don't remember any machines breaking, but I do remember my husband going to have dialysis 3 times a week, and being on the machine for 4 hours (add at least another hour wait time and making sure the bleeding stopped before he left), in a large room with 11 other people all wrapped up in blankets like cocoons to stay warm. Most would fall asleep during the process even though they each had a television and headphones, none of them wanted to be there, and they all still felt like crap when they left. And then at least some would have horribly painful cramping later as a side effect of the dialysis. Knowing that, I don't ever want to do dialysis with him again, and I don't have the phobias like you do. Didn't mean to be flippant about your problems with that. It has to make everything so much harder! But no matter how you slice it, dialysis is a really rough way to have to live. I also wonder as you do, if the denial is exactly that: a survival mechanism. But it is still unreal the things that they will swear by! For example, hubby gets mad at me when I tell him he has heart problems. He will say: "But I don't have them anymore, because the bypass took care of it." Sometimes, you don't know whether to laugh or cry. And yes, I think our husbands are very much alike in this. Interesting that yours also loses track of time. Mine will always tell me he did something "yesterday," when I know that sometimes it was several days ago. The short term memory thing is troubling, as I'm not thinking it will get any better.
Lilly, just to clarify, it was two different dialysis machines.....each one of them broke!!! and I never took you as being flippant, not for a second! Your experience is quite valuable to me as I went into this cold turkey - having never done any research or asked any questions about dialysis. Because my hubby had always said he would never agree to dialysis, it was all quite frightening to me. I had to sign the release forms and that in itself was a huge step.
I know what you mean about not knowing whether to laugh or cry. I do really try to laugh most of the time. My husband, just this week, told a doctor that he no longer has heart problems. Well, I hate to tell him this, but remember, his veins were so bad they couldn't do 5 bypasses on him....they only found enough veins to do 3 bypasses. What does he think is going on in the 2 spots they couldn't bypass???? YIKES!!! We go to see the cardiologist on 4/20. I am quite anxious to see what she has to say when I tell her his heart rate was 140 for 2 days and 130 for another 3 days after surgery. It did not go up and down....it remained that high for 5 days. Now, tell me that didn't do some damage to his heart???
When I was talking to him this morning about my nightmares last night, I said that I thought the only thing he really remembered was his dry tongue. And maybe that was a true blessing. His quest for something wet, for ice, for a swab, for a wet washcloth....his desparate cry for just a sip of ice.....kept him from knowing all the other horrible things that were going on. And that he will never have any memory of it. But I was sitting right there and while he only remembers how dry his mouth was.....I remember 100% of every ounce of what was going on to every part of his body.
And that's where a diabetic has us beat to heck! They don't/won't/can't remember the things we do.
Love all your comments because I know we are in this together.....one day at a time......sometimes just one moment at a time.
DW
The photographic brain
I woke up this morning having another nightmare. Ok, I don't know that they are nightmares so much as horrible memories that come in the middle of the night. But I realized that I had not told him everything. So I laid there until he woke up and then told him about that first Saturday night in the hospital.
There was a canister looking thing they had put under his bed. It had a flexible plastic tube, about 3" in diameter going into the canister. Actually looked like a huge pressure cooker. Stainless steel. Sealed tight. That hose went to his rear end. He was on c diff precautions and I know they were collecting whatever he was passing. What I didn't see was where/how the 3" tube decreased in size to be entered into his rectum. So of course....there's the "nightmare".
But he also had a cath in his penis. He had a round rubber ball at the end of a tube coming out of his back that was draining blood. His stomach was distended beyond belief (was it uremia?) and his tongue was coated with about 1/16" fur that was olive green and brown. Getting 6 ltr of oxygen, and 6 IV bags going into him. He had been NPO at this point for 6 days and the NG tube was going down his nose pumping putrid brown stuff into a 2 ltr tank on the wall. His creatine was at 8.8 that day, he had the dialysis port in, plus several other iv pic lines going in him.
I didn't take any photos. Other than the one I took of his 3" thick chart (didn't think anyone would believe me in the day of technology that anyone still manually charted!). But the image of him that night is forever embedded in my brain. I remember telling my sister that when I leaned over him, I smelled the smell of "death" coming up out of him. In trying to describe that to him this morning - rather difficult. How does one describe the smell of death? Vile, rotton, inhuman, something you don't smell anywhere/anytime.
I told him that I remember being so afraid because he was so distended that I thought for certain the staples in his incisions, both front and back would come flying out and that he would burst wide open (another recurring nightmare!). He was literally that physically distended. To this moment, I don't know what kept the staples intact during that time. He said that he did remember being distended, but that mostly he remembered his tongue and wanting to die because it was so swollen and so dry. Well, it may not have been dry so much as it was hairy and I'm sure that no mater how many ice chips he sucked on or sponge swabby things....it would have felt horrible.
Amazing to me how the brain sees things just like it was looking at a photograph. I hope in time the memory fades. Ok, I hope that the brain comprehends that it is just a memory and that I can make it through the night without seeing the "photograph". Would be a very good night.
But I'm also hoping that in sharing more and more of what I remember with him, he will know what a complete miracle it is that he is here today, that he has made such a speedy recovery, and that even if it takes him 6 more months to regain all of his strength, he is a living, walking, breathing miracle!
DW
There was a canister looking thing they had put under his bed. It had a flexible plastic tube, about 3" in diameter going into the canister. Actually looked like a huge pressure cooker. Stainless steel. Sealed tight. That hose went to his rear end. He was on c diff precautions and I know they were collecting whatever he was passing. What I didn't see was where/how the 3" tube decreased in size to be entered into his rectum. So of course....there's the "nightmare".
But he also had a cath in his penis. He had a round rubber ball at the end of a tube coming out of his back that was draining blood. His stomach was distended beyond belief (was it uremia?) and his tongue was coated with about 1/16" fur that was olive green and brown. Getting 6 ltr of oxygen, and 6 IV bags going into him. He had been NPO at this point for 6 days and the NG tube was going down his nose pumping putrid brown stuff into a 2 ltr tank on the wall. His creatine was at 8.8 that day, he had the dialysis port in, plus several other iv pic lines going in him.
I didn't take any photos. Other than the one I took of his 3" thick chart (didn't think anyone would believe me in the day of technology that anyone still manually charted!). But the image of him that night is forever embedded in my brain. I remember telling my sister that when I leaned over him, I smelled the smell of "death" coming up out of him. In trying to describe that to him this morning - rather difficult. How does one describe the smell of death? Vile, rotton, inhuman, something you don't smell anywhere/anytime.
I told him that I remember being so afraid because he was so distended that I thought for certain the staples in his incisions, both front and back would come flying out and that he would burst wide open (another recurring nightmare!). He was literally that physically distended. To this moment, I don't know what kept the staples intact during that time. He said that he did remember being distended, but that mostly he remembered his tongue and wanting to die because it was so swollen and so dry. Well, it may not have been dry so much as it was hairy and I'm sure that no mater how many ice chips he sucked on or sponge swabby things....it would have felt horrible.
Amazing to me how the brain sees things just like it was looking at a photograph. I hope in time the memory fades. Ok, I hope that the brain comprehends that it is just a memory and that I can make it through the night without seeing the "photograph". Would be a very good night.
But I'm also hoping that in sharing more and more of what I remember with him, he will know what a complete miracle it is that he is here today, that he has made such a speedy recovery, and that even if it takes him 6 more months to regain all of his strength, he is a living, walking, breathing miracle!
DW
Tuesday, March 08, 2011
her husband's been SIX years on dialysis and still says it's not diabetes???
Tina wrote:
OMG! What a nightmare we are all living through! My hubby is in esrd, on dialysis for 6 years, on transplant list (numerous complications stop the transplant from happening) ... has HBP, diabetes, and all the other wonderful problems that all of our hubby's have, but of course, it is not the diabetes! He is totally non-compliant and takes meds to "control HBP, and all the other issues). He was admitted to the hospital today after he took a bad fall, high heart rate, and just totally feeling terrible. But, I must remember "it has nothing to do with diabetes" ... are you ******* kidding me! Anyway, my heart breaks for all of us ... it is so hard being a "wife of a diabetic" ... Love and prayers to all!
Dear Tina,
So happy to have you post your comment. It is utterly beyond my comprehension that someone who is in ESRD is still in denial! Is that where the current medical world has taken us? I know that the medical professionals have been trained to take any spot of hope they have for the patient and focus on that. They are not allowed to say the truth as to what a "forecast" for their life might be. But seriously....esrd and he's in denial?
But it gives me a little insight to a diabetic who is in denial. I suppose it never ends....no matter what stage they are in. If they can't get past the denial process....they will never accept what the disease does to them.
How do you survive?
How have you managed 6 years of dialysis? I am not that strong. I know I would leave.
How can he live that long and not be compliant?
I know I could learn from you. Seriously. If you feel like writing again, give us some insight as to how you have survived this long.
**************
Having a terrible day here. Someone hijacked my email and sent out one of those things saying I was in a foreign country and to send money. Got that all fixed, then the ipod I was transferring music to locked in sync mode. Had to figure out how to undo that and start over.....then the fan that I put my laptop on burnt out. I swear....I think I'll go to bed and just stay there! LOL!!!
*************
Hubby is really cold today. House is at the normal temp where we always keep it. I turned the fireplace on and he is under 3 blankets. I'm thinking I'm going to go put a bikini on so I can survive. Had him test and he's not running low, so no idea what's going on to make him so cold. He seems to be more tired today. Took a 4 hour nap earlier. Not sitting up as much, says he's just exhausted.
Everyone around us has the flu. I put a sign on the front door asking people to not come in if they've been exposed to anything.
Think it's time for a long hot bubble bath. Maybe that's how we survive....pamper ourselves from time to time. Today I'm trying to survive from one crisis to the next!
DW
Monday, March 07, 2011
More comments and thoughts
Well, if nothing else, I will keep you busy reading my blog! LOL!!! I know we don't go back and read posts, so I like to bring them forward and make my responses ot them in a blog. Sort of keeps the continuity of the whole process of the journey in place.
At that point, I didn't even know that it's ok to stop a dialysis treatment in the middle of it. I hadn't done any research. I was completely unprepared for dialysis as we were not expecting it. Trust me, I think at this point I'm completely preapared....I think I could give a seminar on it. I could sure do a better job than anyone in the hospital did. But because of my phobias that I have had since I was 10 years old....I won't do it again. And he knows it.
And that, Lynn, is exactly why I do not post any of the negative comments I get from diabetics. I know they do not understand what we go through. I know they are in denial. I know they are having a sugar low and being nasty just like hubby does. So I just delete and sometimes I even ban them from making comments!
Tonight, hubby's parents called. I'll have to go back and see if I wrote about the problems I had with them the night I thought hubby was going to die. Sigh. So tonight, hubby was telling them how much I fought for him, how he would not be alive if it wasn't for me. (trust me, they hate me) and they didn't make a comment. Not even a "thank you for doing this for our son." Instead, his mom asked him what happened when he went high and low. He said that when he was high, he was irritated, and when he went low, he got sleepy. I chimmed in and said, when he's low, he's really argumentative. But I wonder.....does he remember anything when he goes low?
He told his mom he had been out of the hospital a week. When he hung up, I reminded him it was 2 weeks ago yesterday. More of the short term memory loss? I'll just keep making my notes here.
Thanks for your comments. I know we are getting a growing circle of spouses who truly understand, who are going through the same things, who struggle with the decision to stay or leave, who battle the non-stop rollercoaster ride on a daily basis. It's just good to know we are not alone.
DW
Lilly wrote:
Here's hoping and praying that your nightmares will eventually stop! This can't make for very good nights for you. I went through many emergency room visits with my hubby, almost a year of dialysis and all the side effects, and then the kidney transplant/donor surgeries. I feel very fortunate that I did not dream about these things when I went to bed . . . don't know what I would have done! Really hope it gets better for you. As for yours and everyone else's blogs: I think it is more for us, as we "get it" in a way most diabetics are incapable of. As you said, at first you got nasty messages from pissed off diabetics! The medical profession is focused on the diabetic patient (although they don't know how to treat them half the time), but how often do they ask us how WE are doing? And how can we possibly find a therapist who can actually understand and really help? I can't believe that everyone told you it was your disease. WOW. YES, we really do need to support each other, in every way possible . . .I think those who have needle phobias, blood phobias and white-coats syndrome know that sometimes the nightmares never go away. I was going to do a separate blog on the dialysis machines. When he was in ICU, they brought the machine into his room. The 3rd day, the machine broke. I don't mean that it quit....it broke. 3 hours into the process. The 4th day, they brought in another machine and it, too broke. How on earth can you have dialysis machines in an ICU unit that break???? Trust me, that alone is more than enough to cause nightmares!
At that point, I didn't even know that it's ok to stop a dialysis treatment in the middle of it. I hadn't done any research. I was completely unprepared for dialysis as we were not expecting it. Trust me, I think at this point I'm completely preapared....I think I could give a seminar on it. I could sure do a better job than anyone in the hospital did. But because of my phobias that I have had since I was 10 years old....I won't do it again. And he knows it.
And then she wrote:
Sorry, I had to laugh, as my hubby will tell anyone who wants to listen that he does not have high blood pressure or cholesterol, and he has no heart or kidney problems. He neglects to mention that he takes meds every day for blood pressure and cholesterol, and tons of anti-rejection medicine so that he won't reject his kidney. He also reasons that since he had a triple bypass after his almost fatal congestive heart failure, and also had a kidney transplant, that everything is "fixed," and he has no problems there either! It would be funny, except that he tells his doctors this, and if it is a new doctor . . . well, you get the picture. I (just like you) will tell him to his face, in public, that YES, he does still have those problems, and that is why he takes medication for it! It must be nice to live in denial. Wish I could make it work for me!
The more I read about your experiences, the more I think our husbands are really quite similar. I wonder if denial is more common than I think it is. I wonder if it's their survival mechanism. If they admitted all of the conditions that they have, could they live with it/themselves? Maybe denial is a way to survive.
Lynn wrote:
I had a similar experience on the adoption.com message board when trying to find support as an adoption mom (adopted one, gave birth to three)who was struggling with her adopted one reuniting with birth relatives and abandoning us for them. The pain of coping was unbearable and I sought out others...well, I found some but the birth moms and adopted people who wrote on the thread were so nasty at times i stopped going there...now we just email each other...so i get it...and yes, I think this blogging is for US...because we get it...we get each other...we have similar experiences in that we can't always have on the smilie face...sometimes we have to vent and rant and commiserate because we don't have it easy...it is challenging to live with someone who has diabetes. HUGS and LOVE...I LOVE YOUR BLOG!
And that, Lynn, is exactly why I do not post any of the negative comments I get from diabetics. I know they do not understand what we go through. I know they are in denial. I know they are having a sugar low and being nasty just like hubby does. So I just delete and sometimes I even ban them from making comments!
Tonight, hubby's parents called. I'll have to go back and see if I wrote about the problems I had with them the night I thought hubby was going to die. Sigh. So tonight, hubby was telling them how much I fought for him, how he would not be alive if it wasn't for me. (trust me, they hate me) and they didn't make a comment. Not even a "thank you for doing this for our son." Instead, his mom asked him what happened when he went high and low. He said that when he was high, he was irritated, and when he went low, he got sleepy. I chimmed in and said, when he's low, he's really argumentative. But I wonder.....does he remember anything when he goes low?
He told his mom he had been out of the hospital a week. When he hung up, I reminded him it was 2 weeks ago yesterday. More of the short term memory loss? I'll just keep making my notes here.
Thanks for your comments. I know we are getting a growing circle of spouses who truly understand, who are going through the same things, who struggle with the decision to stay or leave, who battle the non-stop rollercoaster ride on a daily basis. It's just good to know we are not alone.
DW
diabetes statistics
Time to update my diabetes statistics.....
18,000,000 people diagnosed with diabetes
7,000,000 people are undiagnosed
79,000,000 people have prediabetes (?????)
1,900,000 new cases of diabetes diagnosed in adults in 2010
1 in every 400 kids have type 1 diabetes
27% of all people over age 65 have diabetes
in 2007, diabetes contributed to 231,404 deaths.
Complications of diabetes include:
heart disease 68% and stroke 16%
hight blood pressure - 67% of those with diabetes
blindness - 28% of people over 40 with diabetes had diabetic retinopathy, with 5% having severe vision loss
kidney disease - in 2008, 44,378 people with diabetes entered ESRD, with 202,290 living on dialysis
neuropathy - 70% of people with diabetes
amputation - in 2006, 65,700 lower-limb amputations in people with diabetes
People with diabetes ages 60 or older are 2-3 times more likely to report an inability to walk one-quarter of a mile, climb stairs, or do housework, compared with people without diabetes in the same age group.
People with diabetes are twice as likely to have depression.
Every percentage point drom in A1C blood test results (eg from 8.0 to 7.0) can reduce the risk of microvascular complications by 40%.
For every 10 mmHg reduction in systolic blod pressure, the risk for any complication related to diabetes is reduced by 12%
33% of disabled adults live in a household with an annual income of less than $15,000 in 1997.
Improved control of LDL (bad chlesterol) can reduce cardiovascular complications by 20 - 50%
80% of couples with one spouse with diabetes end up in divorce (and it may be higher than that).
Diabetes is the SEVENTH leading cause of death in the United States
Yet if you talk to a diabetic....they will say....."diabetes is not a problem for me, I have it under control."
Hmmmmm........
Now, I realize that you can make statistics say anything you want. Thus I merely pulled numbers off different websites and will allow you to draw your own conclusions. But my thoughts are that the death rate is probably a whole lot higher than reported. If my hubby has a heart attack, that will be what they put on his death certificate. They won't put down diabetes as the cause of death.....but that is what has caused his heart disease for sure.
They don't write about the diabetics who are divorced, who live alone, who require homecare visits to attend to their needs.
They don't write about the high rate of depression. How many diabetics commit suicide each year? So there are a lot of studies that don't get done and statitics probably look better than they would.
If 68% of all diabetics have heart disease, is it then only the 32% that do not have it who are writing their angry comments to me? LOL!!!
If 70% of all diabetics have neuropathy.....it has to be the 30% that don't have it that are in their 20s, maybe 30s, and think they have no problems with their diabetes?
Or is it denial? My husband has high blood pressure. He is in that 67%. He takes medicine to control it. It is in good control, it is never high, in fact, it tends to run a little low. So if you ask him if he has high blood pressure, he will say "no". He is in complete denial about the medicine he takes to control it. He only looks at the bp numbers they read at the doctor's office. As of late, every time he has told someone that he does not have hbp, I correct him. In public. In front of him. I will no longer tolerate his denial. He can do it in private....but not in front of me.
But I wonder if other diabetics have the same "denial". Their A1C is good....so they don't have a glucose problem? Their vision is corrected with laser surgery, glasses, contacts....so they don't have a "vision" problem. From the diabetics I know (excluding hubby) most of them will tell me things just like this. I think the biggest one is that they don't have any problems with depression. They you find out they are taking some type of medication to control that issue.
Statistics are great because they make us be honest. If 67% of all diabetics have high blood pressure....then most likely your diabetic spouse has it as well! What these statistice do for me is tell me that I am not alone. If 18 million people are diagnosed with diabetes and 79 million more have pre-diabetes, and if we assume that 59% of the population is married.....then there are at least 57 million spouses or significant others out there who live with a person who has diabetes. I am not alone!
So, if 57 million spouses live with this disease and let's round down and say only 50% of their spouses have complications, that's 27.5 million spouses like me.
There are so many other questions. What is the % of people on dialysis who are divorced? Is it lower because at that point you stay with them to get the life insurance?
Anyone can write anything. Anyone can do a study and come up with a percentage statistic based on a representative poll of a given population. What really matters is what we experience in our day-to-day life living with someone who has diabetes. Knowing that even if they do keep it in control, they will eventually become one of these statistices. The stats are not going down....they are trending upwards over time. Which would mean to me that even if a diabetic is in good control, evenually, they are going to have multiple complications.
That's the MBA in me! (Have I confessed that I have an MBA degree?) I love playing with numbers, reports, graphs. My problem is that most of the "professionals" who write this stuff have zero experience living with the disease themselves.
But the "wife of a diabetic" in me is very realistic and I know that while he is in denial....I know what his future is. And because of that, I will continue to work hard to make the time we have together as good as we can make it. Knowing every moment that I can still chose to leave - and that's how I stay sane through all that happens to him.
DW
18,000,000 people diagnosed with diabetes
7,000,000 people are undiagnosed
79,000,000 people have prediabetes (?????)
1,900,000 new cases of diabetes diagnosed in adults in 2010
1 in every 400 kids have type 1 diabetes
27% of all people over age 65 have diabetes
in 2007, diabetes contributed to 231,404 deaths.
Complications of diabetes include:
heart disease 68% and stroke 16%
hight blood pressure - 67% of those with diabetes
blindness - 28% of people over 40 with diabetes had diabetic retinopathy, with 5% having severe vision loss
kidney disease - in 2008, 44,378 people with diabetes entered ESRD, with 202,290 living on dialysis
neuropathy - 70% of people with diabetes
amputation - in 2006, 65,700 lower-limb amputations in people with diabetes
People with diabetes ages 60 or older are 2-3 times more likely to report an inability to walk one-quarter of a mile, climb stairs, or do housework, compared with people without diabetes in the same age group.
People with diabetes are twice as likely to have depression.
Every percentage point drom in A1C blood test results (eg from 8.0 to 7.0) can reduce the risk of microvascular complications by 40%.
For every 10 mmHg reduction in systolic blod pressure, the risk for any complication related to diabetes is reduced by 12%
33% of disabled adults live in a household with an annual income of less than $15,000 in 1997.
Improved control of LDL (bad chlesterol) can reduce cardiovascular complications by 20 - 50%
80% of couples with one spouse with diabetes end up in divorce (and it may be higher than that).
Diabetes is the SEVENTH leading cause of death in the United States
Yet if you talk to a diabetic....they will say....."diabetes is not a problem for me, I have it under control."
Hmmmmm........
Now, I realize that you can make statistics say anything you want. Thus I merely pulled numbers off different websites and will allow you to draw your own conclusions. But my thoughts are that the death rate is probably a whole lot higher than reported. If my hubby has a heart attack, that will be what they put on his death certificate. They won't put down diabetes as the cause of death.....but that is what has caused his heart disease for sure.
They don't write about the diabetics who are divorced, who live alone, who require homecare visits to attend to their needs.
They don't write about the high rate of depression. How many diabetics commit suicide each year? So there are a lot of studies that don't get done and statitics probably look better than they would.
If 68% of all diabetics have heart disease, is it then only the 32% that do not have it who are writing their angry comments to me? LOL!!!
If 70% of all diabetics have neuropathy.....it has to be the 30% that don't have it that are in their 20s, maybe 30s, and think they have no problems with their diabetes?
Or is it denial? My husband has high blood pressure. He is in that 67%. He takes medicine to control it. It is in good control, it is never high, in fact, it tends to run a little low. So if you ask him if he has high blood pressure, he will say "no". He is in complete denial about the medicine he takes to control it. He only looks at the bp numbers they read at the doctor's office. As of late, every time he has told someone that he does not have hbp, I correct him. In public. In front of him. I will no longer tolerate his denial. He can do it in private....but not in front of me.
But I wonder if other diabetics have the same "denial". Their A1C is good....so they don't have a glucose problem? Their vision is corrected with laser surgery, glasses, contacts....so they don't have a "vision" problem. From the diabetics I know (excluding hubby) most of them will tell me things just like this. I think the biggest one is that they don't have any problems with depression. They you find out they are taking some type of medication to control that issue.
Statistics are great because they make us be honest. If 67% of all diabetics have high blood pressure....then most likely your diabetic spouse has it as well! What these statistice do for me is tell me that I am not alone. If 18 million people are diagnosed with diabetes and 79 million more have pre-diabetes, and if we assume that 59% of the population is married.....then there are at least 57 million spouses or significant others out there who live with a person who has diabetes. I am not alone!
So, if 57 million spouses live with this disease and let's round down and say only 50% of their spouses have complications, that's 27.5 million spouses like me.
There are so many other questions. What is the % of people on dialysis who are divorced? Is it lower because at that point you stay with them to get the life insurance?
Anyone can write anything. Anyone can do a study and come up with a percentage statistic based on a representative poll of a given population. What really matters is what we experience in our day-to-day life living with someone who has diabetes. Knowing that even if they do keep it in control, they will eventually become one of these statistices. The stats are not going down....they are trending upwards over time. Which would mean to me that even if a diabetic is in good control, evenually, they are going to have multiple complications.
That's the MBA in me! (Have I confessed that I have an MBA degree?) I love playing with numbers, reports, graphs. My problem is that most of the "professionals" who write this stuff have zero experience living with the disease themselves.
But the "wife of a diabetic" in me is very realistic and I know that while he is in denial....I know what his future is. And because of that, I will continue to work hard to make the time we have together as good as we can make it. Knowing every moment that I can still chose to leave - and that's how I stay sane through all that happens to him.
DW
Sunday, March 06, 2011
Maybe it's for us.....not them
I really started writing this blog because I thought it might help diabetics realize how their disease impacts their spouses and families. And as a place to vent my own frustrations. But after all this time, I'm thinking this is more about simply helping spouses survive.
I read somewhere that over 80% of the spouses of diabetics leave them over time. I wonder if that's a valid statistic. It seems high to me at times. But there are days when it wouldn't surprise me if it were 100%!
And maybe that's why not many people are writing about it. They leave. They don't have to deal with it. So they don't write about it.
Seems to me the 20% who stay need some kind of support. And maybe this is it.
Over the years, I've been to 4 different therapists. Not because I wanted to change.....but because they left the HMO I belong to and I got "assigned" to a new therapist. There's an ongoing theme to each one of them. Well, ok, several themes. None of them have had any personal experience with diabetes. All of them said that you simply have to grieve the loss of a healthy life, healthy spouse....so thus, this is just like any other loss, so they are perfectly capable of helping me through the process. And all of them said that it IS my disease.
LOLOL! Just take a moment and imagine where those conversations went from that point in the discussion!
I will go to my grave contending that this is NOT my disease. And for any therapist to be so narrow minded as to think it is.....let alone 4 of them agree that it is....tells me there is something horribly wrong with the educational system today!
Oh....the other common factor....all 4 of them were under 30years old. Which made me realize that HMOs hire the young and the cheap. Anyone with a lick of experience has probably left and set up their own practice.
A couple of years ago, I gave up on therapy. Completely. I know the process of grief. I understand what each of the steps are and how to go through them. I also know that with age comes experience and wisdom and I can do better on my own than anyone who is under 30 with no experience trying to help me through a moment.
But how pathetic for spouses who really need help. Who haven't learned how to live with the day-to-day rollercoaster ride of diabetes. Who still think that when he yells obscenities at you...he really means them. How sad that women can't get support and leave a realationship. How brave of those who do. Yep, I know....I just argued it both ways, huh?
I think that each one of us has to decide what to do. When to stay. When to go. How long to stay. Do we stick it out to the very end? Obviously, after what I've just been through, I'm asking myself that very question all over again. How many times do we ask it before we go? Do I want to be here for the next round? I did not marry into this. It happened after we were married. I had no clue. I would not have married him. But then, he had no clue either. Do I love him enough to do a single one more dialysis? At the moment, with the recurring, continuing nightmares....I'm not so sure.
Do I simply allow myself to ask these questions over and over and over.....and that allows me to stay?
I know many diabetics who read my blog think I am absolutely horrible. But I think they don't understand the sheer, utter needle/blood phobia that I have. If you have that phobia....and you go through what I just went through, it simply leads to all night long nightmares. You would think therapy would cure that. But hardly! It comes from being raised by a nurse practitioner who did not want any of her kids to go into the medical professions. She truly did a number on all of us. I think perhaps my brother is the worst. So it's not something that I think I will ever be able to overcome. I just have learned to live with it. And I did have to leave his room for many of his procedures. Hubby completely understands. And I think he truly understands when I say to him that I cannot go through this again. He is quite sympathetic to the ongoing nightmares I'm having right now. I'm hoping that the more I write the experiences, the less they will happen.
Had you told me 10 years ago that last night, I would have woke up at 2 am with the image of a dialysis machine tube breaking and blood from my husband spewing across the room.....I would have told you you were beyond insane! LOL!!! But that was my nightmare last night. Which I think is quite justified considering that TWO of the dialysis machines they brought into ICU BROKE in the middle of the treatments!!!
The amazing thing is that I was able to find the strength to be by his side when I needed to be there. Yes, I was right there each time the machine broke. I held his hand. I said soothing things to him. I told him everything was going to be ok. I came home at night and cried my heart out. But God got me through those moments. And now, while I know that God will get me through my own recovery.....I wonder if any therapist could begin to relate, could offer counseling, could give me any advise.
My thoughts are that you take it slow. Allow yourself to feel everything. The pain, the fear, the grief, the loneliness....suffer as long as it takes. But at the same time, set a deadline. I'm giving myself 4 weeks. I figure that he was out for 4 weeks, I can take equal time to process what I went through. But then I'm reminded that for every 4 hour outburst, it takes us 4 days to recover.....so maybe I should extend that deadline to 4 months! :o)
I'm writing today because I think it's important to point out that if you are seeking counseling, you probably aren't going to find a therapist who has been through this. And yes, they can help you with the grieving process. But somehow, I think what I just went through is a bit beyond grief.
So to each of you, may you have a blessed day. May you find an ounce of sunshine in just one thing this day. May you have joy for just 1 moment. Sometimes, that's all we need to get us through to tomorrow.
DW
I read somewhere that over 80% of the spouses of diabetics leave them over time. I wonder if that's a valid statistic. It seems high to me at times. But there are days when it wouldn't surprise me if it were 100%!
And maybe that's why not many people are writing about it. They leave. They don't have to deal with it. So they don't write about it.
Seems to me the 20% who stay need some kind of support. And maybe this is it.
Over the years, I've been to 4 different therapists. Not because I wanted to change.....but because they left the HMO I belong to and I got "assigned" to a new therapist. There's an ongoing theme to each one of them. Well, ok, several themes. None of them have had any personal experience with diabetes. All of them said that you simply have to grieve the loss of a healthy life, healthy spouse....so thus, this is just like any other loss, so they are perfectly capable of helping me through the process. And all of them said that it IS my disease.
LOLOL! Just take a moment and imagine where those conversations went from that point in the discussion!
I will go to my grave contending that this is NOT my disease. And for any therapist to be so narrow minded as to think it is.....let alone 4 of them agree that it is....tells me there is something horribly wrong with the educational system today!
Oh....the other common factor....all 4 of them were under 30years old. Which made me realize that HMOs hire the young and the cheap. Anyone with a lick of experience has probably left and set up their own practice.
A couple of years ago, I gave up on therapy. Completely. I know the process of grief. I understand what each of the steps are and how to go through them. I also know that with age comes experience and wisdom and I can do better on my own than anyone who is under 30 with no experience trying to help me through a moment.
But how pathetic for spouses who really need help. Who haven't learned how to live with the day-to-day rollercoaster ride of diabetes. Who still think that when he yells obscenities at you...he really means them. How sad that women can't get support and leave a realationship. How brave of those who do. Yep, I know....I just argued it both ways, huh?
I think that each one of us has to decide what to do. When to stay. When to go. How long to stay. Do we stick it out to the very end? Obviously, after what I've just been through, I'm asking myself that very question all over again. How many times do we ask it before we go? Do I want to be here for the next round? I did not marry into this. It happened after we were married. I had no clue. I would not have married him. But then, he had no clue either. Do I love him enough to do a single one more dialysis? At the moment, with the recurring, continuing nightmares....I'm not so sure.
Do I simply allow myself to ask these questions over and over and over.....and that allows me to stay?
I know many diabetics who read my blog think I am absolutely horrible. But I think they don't understand the sheer, utter needle/blood phobia that I have. If you have that phobia....and you go through what I just went through, it simply leads to all night long nightmares. You would think therapy would cure that. But hardly! It comes from being raised by a nurse practitioner who did not want any of her kids to go into the medical professions. She truly did a number on all of us. I think perhaps my brother is the worst. So it's not something that I think I will ever be able to overcome. I just have learned to live with it. And I did have to leave his room for many of his procedures. Hubby completely understands. And I think he truly understands when I say to him that I cannot go through this again. He is quite sympathetic to the ongoing nightmares I'm having right now. I'm hoping that the more I write the experiences, the less they will happen.
Had you told me 10 years ago that last night, I would have woke up at 2 am with the image of a dialysis machine tube breaking and blood from my husband spewing across the room.....I would have told you you were beyond insane! LOL!!! But that was my nightmare last night. Which I think is quite justified considering that TWO of the dialysis machines they brought into ICU BROKE in the middle of the treatments!!!
The amazing thing is that I was able to find the strength to be by his side when I needed to be there. Yes, I was right there each time the machine broke. I held his hand. I said soothing things to him. I told him everything was going to be ok. I came home at night and cried my heart out. But God got me through those moments. And now, while I know that God will get me through my own recovery.....I wonder if any therapist could begin to relate, could offer counseling, could give me any advise.
My thoughts are that you take it slow. Allow yourself to feel everything. The pain, the fear, the grief, the loneliness....suffer as long as it takes. But at the same time, set a deadline. I'm giving myself 4 weeks. I figure that he was out for 4 weeks, I can take equal time to process what I went through. But then I'm reminded that for every 4 hour outburst, it takes us 4 days to recover.....so maybe I should extend that deadline to 4 months! :o)
I'm writing today because I think it's important to point out that if you are seeking counseling, you probably aren't going to find a therapist who has been through this. And yes, they can help you with the grieving process. But somehow, I think what I just went through is a bit beyond grief.
So to each of you, may you have a blessed day. May you find an ounce of sunshine in just one thing this day. May you have joy for just 1 moment. Sometimes, that's all we need to get us through to tomorrow.
DW
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