Wednesday, December 23, 2009
So much for "I feel great!" He's back in bed where I plan to make him stay today and tomorrow. Of course, tomorrow evening, he wants to go be with his granddaughters. Hurmph! Me thinks he has no business going anywhere....but I'm sure I won't be able to keep him home.
Got me to wondering. With neuropathy - can it impact the sciatic nerve? Logic tells me that it can, but I can't find much on the internet about that. If it can kill the nerve endings in the fingers and toes....can it kill the sciatic nerve? And then he wouldn't be able to walk? I have read much about people becoming paralyzed from torn sciatic nerves. A bit on the scary side. I know I'm not ready for him to be paralyzed. But he seems to be in no mood to listen to my fears....so I'll just write about them here.
It's definitely making for a quiet holiday. And that's fine with me. But I just have to wonder if it's the quiet before the storm?
Tom's wife - sorry to hear about your work stress. Home stress is more than enough - I can't fathom stress from work on top of that! Hugs to you and to everyone this holiday season!
Friday, December 18, 2009
Tom's wife - even your blog has been terribly quiet. I sure hope all is going well.
We are having just an amazing month. I wonder - is it the calm before the storm? I have been completely occupied with art projects that are keeping me off the charts busy. Wonderful to have something that is occupying so much of my time. And hubby has gotten lost in the world of electronics - teaching himself programming. I tease him that he's doing this so when he gets a wheelchair, he can program it to race me in mine! Good humor, great jokes coming out of all this!
He still has good days and bad days. But it seems that even on the bad days, he at least has something to occupy his mind with. He will get low and start to argue with me and I simply tell him I don't have time, I have a deadline. So that seems to be the "cure-all" for the moment! And it looks like my assignments are going to carry thru to the end of January.
And we have "downsized" our holiday festivities and it sure has made life simpler. No tree, no decorations. Only gifts for the grandkids. No parties. Just quiet time at home and get-togethers 1-on-1 with other friends and family. No large gatherings planned this year. And all the shopping was done online, so we haven't had to face the crowds. Our worst thing has been the traffic when we need to go out....so I've been doing the driving. Keeps him calm!
Have to say I'm loving it all. No stress.
So here's hoping you all are having a wonderful go of it as well!
Thursday, December 10, 2009
Neil wrote: This is not a diet I would eat as a type 1 diabetic
a can of clam chowder
turkey sandwich and fries from Chilis
ham, egg and cheese bagel
chocolate dove candy
ham egg and cheese sandwich
I would get rid of the ham, the bagel the fries and the clam chowder. Never touch the stuff and never will. I have been type one for forty years and pretty much figured out what to avoid.
And I just had to laugh. Neil, I know you have figured it out. I know you are doing a great job. But I'm married to a guy who eats whatever he wants.....whenever he wants. And that's the whole problem. I can't "fix" him. I can't "change" him. So yeah, he's going to eat all the above and oh! so much worse!
The past few weeks, he's been eating clam chowder like crazy. And fries are second nature to him. No, I don't fix them for him at all. I fix a normal meal....and he doesn't want it, so he makes something for himself. Not a thing I can do to change his eating patterns. Really sad.
Wednesday, December 09, 2009
He is off work starting 12/15 - 1/2
except to let him rest. This is what he wants. A quiet end to the year. And I am doing everything I can to help him have his wish. I think it's great!
We will quietly meet with family - 1 family at a time. We'll spread it out over the last 2 weeks of the year. A dinner here or there. He can sleep in as long as he wants, take naps when he wants....very little holiday stress.
At first, I protested. But the more I thought about it, the more I liked the idea. We went ahead and gave each other our gifts this past Sunday. Pretty fun!
So all is well here for the moment. Loads of rest, little stress. We seem to be having a very good run. His back is still killing him and he refuses to go to the doctor. But the less he walks, the less it hurts. He has taken up micro electronics and is entertaining himself completely. I've been off to visit family last week and got a bit of a break so I could come back and handle life here with a renewed spirit. Always good to get away, even if it's just for a couple of days.
We'll have a very quiet holiday and I think it might just turn out to be our best yet!
Tuesday, December 01, 2009
I'm baking a turkey tomorrow. Who says you have to have turkey on the 25th? LOL! If we have the turkey this week - there's no need to stress out about that later in the month. Should be an interesting December to say the least. But so far, it seems to be working. No stress, no highs and lows. Ya think we can keep this up the whole month? OK, I can dream! LOL!
Friday, November 27, 2009
And it's terribly nice to be back on even keel. Probably won't last long. I'm sure his insulin is out of balance once again and he's refusing to go see the doctor. But I'm thankful that at least right now - we are at peace with each other and the world seems calm. :o)
Saturday, November 21, 2009
(((((HUGS)))) for you DW. When I read your blog it is like I am reading about my life with my Type 2 husband.
I recently found out that one of my dh's meds is causing extreme lows. His doctor will be changing his meds next month! I wish it could happen today.
All we can do is take one day at a time and take special care of ourselves so we can be strong while on this journey with the one we love.
Ya gotta wonder what the doc is thinking? Why would/do they wait a month to change a med? If they know it's causing extreme lows - why wouldn't they change it today? this week?
I do understand all about lowering the level of 1 med while introducing another - I had to go through that when my son who has seizures turned 16. We took him off Tegretol and put him on Dilantine and it was all done while he remained in a hospital for over a month. Horrible process!
But I've never heard of a diabetic needing to go through something like that to change meds. So I still have to ask - why not today?
I woke up this morning with the very same thought - I just have to make it through today, 1 hour at a time. It's 10 am and he's not up yet. I don't even want to face the day with him, so I may "need" to go visit my sister. I think it might just be best to have "something" pop up in my life! On the other hand, I'm too tired to go pack a bag! Had every intention of making it up to bed last night, but fell asleep on the sofa watching a movie. I like old movies. Mind-numbing stuff you don't have to think about! But I'm paying for it this morning with a stiff neck!
Yes, one day at a time, one hour at a time, 1 minute at a time - we do muddle through, don't we?
Friday, November 20, 2009
I'll write what happened....but I need an answer as I write this....how can I keep this up? I just don't know!
This past week, I have just about gone insane around here. His back is killing him and I know that. He has been laying on the floor, not eating, sitting in his chair in the office, laying on the bed, laying on the sofa. In the meantime, I have been cleaning. He makes breakfast and spatters grease all over the stove top and has bagel crumbs all over the counter. He never puts up a pan or anything. I come in and clean up after him.
He uses an electric toothbrush and splatters toothpaste all across the mirror and all over the sink and couner top and I come in and clean it all up. Every single morning.
He has diahrrea and I'm the one who cleans TWO toilets on a daily basis.
He wants dogs. We have 2. He will feed them in the morning. But it's me that has to clean up the messes, change out the potty pads, clean up their vomit when they get sick...
And I'm tired of it all.
So today, I had to run out and get glass for an art project and I came home with my arms loaded down and took one look at the kitchen counter which was covered with grease and food and there was no place for me to put down my load. He was sitting on the sofa watching TV. I just said, "you are going to have to start cleaning up the messes that you make around here!" I didn't yell. I didn't raise my voice. I just said it as a natural, normal, matter-of-fact conversation.
Well, that set him off. And I mean in a big way. It started at 2 pm when I got home and it didn't get better all afternoon long. I just left it alone. Not worth an argument if you ask me. I figure he had made himself breakfast and lunch so he shouldn't be low, but who knows. I'm just tired of it.
I spent the afternoon coloring my hair, doing my nails....pampering myself as we had plans to go to the Melting Pot this evening with another couple. We've been with them before and just had the most fun....so I was really looking forward to the evening out.
At 5 pm, I was ready to go, sitting on the sofa answering emails on my laptop and he came in and laid down on the floor in front of me. So I know his back was hurting again. He went to sleep. At 6 pm, I said, "we need to leave in 15 minutes, are you ready to go?"
He said, "I'm not good enough to go".
And I simply thought to myself, fine. He doesn't want to go. I'm not going to force it at all. Yet at the same time I really wanted him to go. I wanted him to get out of the house - to do something, anything. So I said, "why do you say that?" and of course he started in about me telling him he didn't clean the house good enough. Which is not what I had said at all, but then we know where this is going. He said that I yell at him all the time (translate that came from a one line comment above!) LOL!
I really didn't want to get into yet another fight with him, so I said, fine. And I left.
I got to the place and of course our friends wanted to know where he was. Now, "she" has seen him in a low and knows how he gets, and I hold nothing back these days....so I just said that he was having a really bad low and didn't want to join us and that they best get used to being alone with me because when he is gone, that's all they will get! And guess what, we had an absolutely fabulous time and I laughed for 2 1/2 hours! I am so glad that I went. Alone. Without him.
And I didn't want to come home. But I did. Went upstairs and didn't say a word to him and he didn't say a word to me. Got into my jammies and came back downstairs. I'm sure I'll go to bed later on. Maybe I'll just sleep on the sofa or in the guest bedroom.
This will go down 1 of 2 ways. He will either stay mad at me and give me the "silent" treatment for the next couple of days and then become ever so remorseful and fearful that I am going to leave him.....or he will become that way tomorrow.
The ups and downs of this disease just exhaust me beyond reason. I hate it when he acts like a 10 year old like he did tonight. And I suspect that he is going to continue to do this in an effort to distance himself from all of our friends.....and probably try to push me farther away from him.
So, do I butt up against him and refuse to leave. Or do I just leave? If I'm going to be alone anyway, why not start now?
Mostly because I'm too drained to even think about it.
Wednesday, November 18, 2009
Ady wrote:I do not want to scare you, but even the path to dialysis is not easy. He needs a fistula (connecting a vein with an artery; it starts low near the hand of the left arm, to be moved up higher if this one is dead, and upper again, and then the right arm and then the leg and...). I had no idea that I will have to see this Dr (specialist in blood vessel surgery) many times. It's an outpatient surgery, but it's a surgery with full anesthesia. The problem is that it takes 3 to 4 months for the fistula to "mature" for them to be able to use it. Which means, they may have to put a caterer in the hart artery, (another surgery), if his kidney is bad. If the kidney is bad, the potassium gets very high and puts the heart at risk. The hart caterer is very prone to infections, no shower allowed, so you will have to wash his hair in the kitchen sink, as I did, or send him to the barber shop. No fun at all. The way he sleeps is the toxins buildup. He should do less insulin too. I know it's nothing you can do or control, I am just talking aloud, because I know you like to know what to expect. I am there with you and hope he will go to see a kidney specialist soon. A GP is not enough.
Ady, thanks for starting this conversation. I have researched as much as I can so that I am prepared for what he will have to go through. But it's sort of like everything else. Each person is going to have an individual reaction......and besides, can you ever really prepare for anything in life?
You are so right - I can't control it. I can't prevent it. Maybe at best I can brace myself for it! That - and surround myself with good friends, strong family, and be ready to ask for help if I need it.
As for a kidney specialist - he has NEVER been to an endo to this day. That is beyond me. But again, I can't control that either. It's between him and his health insurance. They send him to a GP, who will send him to a rhuematologist (sp?) and a couple others, but never to an endocronoligist yet.
And he will be going to the barber.....I don't think he could possibly lean over the sink to have me wash his hair. Yesterday, his back was so bad, he got down of the floor and had his feet up on the sofa and packed himself with pillows. I don't know if it helped....or if it was just a different position. I do think that if the pain gets bad enough, he will go to the doctor again.
In the meantime, I have art projects to do! Thank goodness!
Sunday, November 15, 2009
I know you asked a while ago about dialysis, how you know when it's time. Basically he sleeps a lot, watches TV and falls asleep. He would says he is not feeling well. He could not explain it. It's the kidney that is not able to eliminate the fluids and the toxins. I am fortunate that the nephrologist is talking to me and I asked what if he refuses to go on dialysis; she said he will die. I asked what type of death is that; she said he will go to sleep and never wake up, no pain. He also had few episodes of diabetic coma, and they were there because the kidney will not eliminate the insulin. At least I could see them coming and gave him glucose and OJ. Those episodes scared him a lot. He did not have any after he started dialysis, but there are other issues: eating, sleeping (they can't sleep through the night), restricted drinking and all the other extra pills (vitamins that the machine depletes the body off, anemia - iron that they give him via the dialysis, potassium that gets high). He drives himself, which is good. However, his driving is as bad as you all have shared with us. When I told him is the diabetes, he laughed at me. Lately I refuse to go if I do not drive. Your blog has helped me a lot, understand some consequences of the disease (driving, anger, incontinence). Thank you all and you specially DW (as I read all your blog),
Ady, thanks for your insight. I'm sure my hubby is just a step away from needing dialysis. In fact, he might be in need of it - who knows since he hasn't been to see his doctor in forever.
He sleeps all the time.
He comes downstairs, sits down on the sofa, turns the TV on, and falls asleep.
At 10 am in the morning! At 6 pm at night....ok, at any time of the day.
He usually goes to sleep about 10 pm and sleeps til 8 or 9 am.
He gets absolutely no exercise other than going up and down the stairs twice a day. Sometimes only once. And if we go out to eat, then he has to walk. The rest of the day he is either in bed, in his office in the chair, or on the sofa.
I know that the last time he went to the doc, his kidney function was at 22%.
He has probably put on 20 pounds in the last year. I know it's because the waste is going inward, no exercise, and he does eat all the time.
Personally, I imagine he will have a heart attack first.
He has been getting optical migrains where he sees nothing but bright white. So far, his vision returns. I just wonder how long before it doesn't return.
If I'm in the car, I drive.
And, as an example, today he has had:
a can of clam chowder
turkey sandwich and fries from Chilis
ham, egg and cheese bagel
chocolate dove candy
ham egg and cheese sandwich
Not an ounce of nutrition in there, huh?
On and upbeat note. I spent today and yesterday teaching art techniques to a wonderful gal who flew here to attend my class. It is a great confidence booster to know that I'm ok. Ok enough that someone else would fly in to learn from me. So it does help to have something else in your life that is "greater" than the diabetes, something else to focus on, worry about, stress over. I think it's the best thing I ever did. So, for the past 48 hours, I've escaped once again into my "other" world. It's something everyone should do.
the therapist I spoke with said this....
you need to find a goal in your life. That can be to get a job, to get a career, to volunteer, to have a hobby, to work for a cause. The goal is to get you something else to focus on. Something that you can devote your attention to. That way the diabetes isn't the only thing in your life.
Really good advice, huh?
But know that it took me 5 whole, long, endless years to agree with her and get myself to where I am today.
And it doesn't mean that I don't check every morning to see if he is still breathing. Or that when he falls asleep on the sofa - I don't worry about if he will be able to wake up....or is he in a coma?
It just puts something else in my life for me to think about as well. And that helps!
Saturday, November 14, 2009
we are not alone. just sometimes lonely
It doesn't matter how busy I keep my self - how much I get involved with other women, other families, my family, my friends....I still have moments while I am so lonely I could die.
While I know my sisters all understand what I am going through.....they haven't walked a mile in my shoes.
While I can go see a therapist, join a diabetes support group....no one else has lived what I am living.
But while I am lonely - at least I know it will end when I surround myself with other people and for a few short hours....I can forget "this" life as I step into "that" life. It does give me a reprieve. It does help.
What I truly hate the most are the professionals who tell us what to do to make this work.....yet they don't live with someone who has diabetes....ok, scratch that. They don't live with someone who has diabetes and doesn't take care of themselves. Huge difference! I can't fathom how you can help someone else when you haven't lived the experience yourself. Books are books. Theory is just theory. Don't tell me to give him sugar until you have been been throught the harrowing experinece of him passing out and you can't possibly get a single thing in his mouth! Can you tell I don't have much use for professionals who think they have all the answers when they haven't lived the experience.
So, unless one of us wants to take time out and return to school - I doubt there's any real help for any of us except what we can gain from each other!
Love the idea of meeting with other spouses.....but here's the problem with that. I have to remain anonymous myself in order to keep the "peace" here. If he thought for one second that I blogged....or that I was meeting another wife....I would have to leave for sure. Sad, huh? I'm going to guess there are several of us in the same position. We are not allowed to talk about this disease, not allowed to mention it, can't discuss it with our families and friends unless we do it in utter secrecy.
But I totally agree - some days, I wonder how much any of us can take.
Hugs to you, Tom's wife - and to all the other wives.
It is unfortunate that diabetes causes so many family issues. Growing up, life was a not fun until my mother got her diabetes under control. I vowed, as I stated before, I am not about to allow diabetes to affect me, my marriage or my children. I love my family dearly, and I know those three young children ages 11, the twins, and my oldest daughter age 16 really need me to help them succeed in life. I know my wife would be challenged to raise those children on her income alone. I try to work out 10 hours per week to stay extremely fit because I know my physical health is just as important as my mental health. I personally believe my wife has a right to have a husband that is physically fit. I don't have a clue why most men haven't figured it out that their wives want a fit husband, just like husbands want physically fit wives. I was recently studying an article called The theory of brain wave vibrations. This theory essentially concludes that the brain energy of those we are near affects our own outlook. So I conclude that if a man or a woman is married to someone who acts irresponsible, that will negatively affect our own emotions. Instead of going to the level of the other party, we ought maintain a positive outlook and ultimately, the theory indicates, the other party will make positive changes. I have seen this happen, but it does take a great deal of patience. And of course, we have no guarantees the other party will ever respond.
Neil, I do think you are the exception to the "rule". You know, the Bible tells us that the "2 shall become as 1" when we get married. I wonder if there is any connection to what you have written above. But at the same time, I'm still going to go with "this is not my disease" - while I am affected by it 24/7 - I don't have it
Anonymous wrote:Hi to all ...
Haven't written in some time, even though I follow your blog ...
Life's been a little tough around here. My husband has severe charcot and had to have surgery on his right foot (we are now 7 weeks into recovery and it has been tough to say the least). One week after his foot surgery, he got a call that they finally had a kidney for him (he has been on the transplant list for 5 years) Of course, he had to decline the transplant due to the fact that his recovery from his foot surgery will take approximately 6 months (obviously a great disappointment). However, now he is totally reliant on me and his kids, his weight is coming down, his sugars are under control, his phosphorus is great, even too low! So just so all of you can see, there is a light at the end of the tunnel ... just sometimes our "blockheads" take a long time to see what they need to do!!!!!!!!
Go figure !!!!!!!!!!!!
Anyway, as far as MIL ... I also have that issue ( I know it's all my fault ... blah, blah, blah ...)
My MIL in really quit ill at this time and I feel really bad about that, but still, I did not give her son his eating disorder ... she did!
I know I am just running off with all my thoughts ...
Just remember, it is his disease, we are only here for the ride (thank the Lord above for that gift)
Well, I am sorry to hear that he missed out on the transplant, but encouraged to hear the he is improving. I hope it keeps up - for your sake and that of the kids. Charcot is just something terrible - I think it is just completely crippling. I hope the surgery is a success long-term.
As for the "dear" MILs - not sure why they have to be so critical. We just married the guy - we can't change him and sure as heck didn't make him who he is today! LOL!
Its somewhat reassuring to know how many women feel the same as I do. What has been very difficult for me to deal with is guilt. I am always feeling guilty about something; resentful toward the disease, my husband, what I am missing. I hate to sound like that, and would never say it verbally, so this is a good way to at least express it. A good part of this disease can be prevented, or at least kept in control. When I know that my husband is not doing what he is supposed to do, I feel he is being very selfish. Then I feel bad that I am not the one that is sick, that I should try to understand how difficult it is. I am still young and want more. Thats when the guilt hits. Lisa
Oh Lisa - just put all that guilt right out of your head! It's NOT your fault, and it's NOT your problem to "fix". You haven't done a single thing to feel guilty about. It's completely natural for us to feel bad about someone we love being so ill. But it's certainly not our fault - thus no grounds for guilt. I think at most we can feel compassion - perhaps- but I even wonder if that is warranted since they are simply making it worse by their own actions.
I feel I know you all. If I take pieces of each of your experiences I can say it's my experience. My husband was diagnosed with diabetes 20 years ago, he took his pills but did not keep any diet. Overweight, stubborn, he used to eat one bread per day. Starting from 2007 his health deteriorated fast. Few eyes laser treatment, eye surgeries, glaucoma due to steroid injections, and late 2008 kidney failure. He is on dialysis since April, not doing well (4 times a week 3 1/2h with one time 3h only). Tired, not feeling good, I never know how he comes home. He is malicious with me and with the kids (I have 2 boys) some times. He is a manipulator too, he knows to say rarely how grateful he is, but most of the time he refuses me anything I want. Raises his voice, and he can be mean. I had my share of low sugar, paramedics, having to drive almost every day to the hospital. He is 60 and we both do not work (somewhat retired). Now on dialysis is has to keep a certain diet, eat small meals 3-4 times a day, restricted drinking, etc. Of all those he does what he pleases. He was a big eater, now he has no appetite, so he eats sometimes only twice a day. He cooks, so he eats what he want, when he wants. It does not matter what I say, he has to come to his own conclusions. I have my moments when I feel he is bringing me down with him. I am glad, I am not the only one feeling that way. I am glad I found your site and that I no longer feel alone.
Ady, It truly pains me to read what you wrote. Please do not let him take his problems out on you. Don't even let him hint at being mean to you. It is not his right. And maybe you just need to tell him that. Or when he starts, simply walk out the door. Exclaim that you HAVE to run to the store to get something you forgot....make any excuse to get away from him.
I have found it they don't have anyone to yell at = they don't yell! Your own life is too precious to allow him to bring it down. And while you are not alone, I do think that if we allow them to treat us in this manner, it just continues. It's been 3 years since I told my husband in no uncertain terms that he could not talk mean to me, put me down, take his anger out on me....and while I have had to remind him a couple of times....it has helped.
And I'm getting real good about "emergency" trips to the store. I'm an artist, so it's a great excuse - I need new blades for my knife, I have to have them right this moment.....I can make it up pretty quick!
Another anonymous wrote:
I'm so glad to know that I'm not alone, my husband of 18 years is a type 1 diabetic and it's taking it's toll on our family. The past two years have been extremely difficult and I'm not sure how much I can handle. Most days he can't get out of bed, check his blood sugar or take his meds. He has chronic kidney disease, diabetic gastroparesis and low testosterone. There are still times when I see the man I married and remember why I'm still here, but it sure isn't easy. It's nice to know that there are others out there that know exactly what you're going through.
It's never easy. Some days are just less hard than others. If it helps....I never know how much I can handle either. I just take it one minute to the next most days. Yet I am amazed at how much I can "take". My hubby is now staying in bed til 10 or 11 am every day. He hasn't tested his sugar in at least 2 years. He hasn't been to see his doctor in almost 9 months. But I can't make him go. So I just do my own thing. And yes, it really does help to know that we are not alone in this at all.
So, there are the comments and my feeble thoughts for the day. I'm hosting a 2 day class in my studio this weekend and hubby as sequestered himself in the master bedroom. All is well. However, I just don't know how any one human being can spend so much time in bed! The boredom of it would simply kill me. My "student" this weekend happens to be an MD in her other life. We are having some wonderful conversations - I do meet the nicest people. I wonder what I would do or how I would survive this if I didn't have my art.
At the same time, I have to wonder how much longer life can continue as I know it now. He's less physical, not seeing the doctor, not testing his sugar....How long can he continue on this path before something major happens? Well, I can't do the "what-ifs" in life - I just have to live my own life to the fullest every single day - regardless of the struggle.
Saturday, November 07, 2009
Lisa wrote: Can't believe you mentioned your mother inlaw. Mine is finally gone, after she tortured me for many years. She would tell me that I was too shrict and mean about what my husband was eating, and then tell me I probably made him diabetic. Of course my husband would say to forget it, I was too sensitive! Its very difficult when that support is not there. I too physically feel the strain. Yoga seems to help. I also go to art classes. You have to concentrate on other things sometimes. Not easy. Lisa
I cannot believe she said you made him have diabetes! How stupid is she? I mean seriously......anyone who thinks diabetes can be caused by another human being is either stupid.....or an abusive bully. Take you pick! OK, maybe a little of both!!!
And for your husband to write it off as you being "too sensitive" simply shows how utterly insensitive he is.
It really is not easy to build a life for yourself.....but someone once told me that a human being has to get support from a source. Most of us get it from home. Or work. And if we don't get from there....then where? Being retired, my options are home (nope, not there), or through my art. And that is the life I am building for myself - my art. Not easy.....but necessary.
I just came across your site tonight. It's relieving to know I'm not alone. I have a diabetic husband. We've been together for 18years. I unlike you, is on the brink of divorce. He refuses to even take his medication. He's also constantly in and out of the hospital and also nursing homes. We have no children and I feel like I have ruined my life by being married to this selfish person. I'm full of so much pain at this moment because I feel like I have been a complete fool. My own health has suffered through this horrible marriage.
I can truly empahsize with you. I was at a crossroads about getting a divorce almost 5 years ago.....and my husband was/is nowhere near the condition yours is in. But I know just where we are headed. I know how hard this must be for you. But it is women just like yourself who I would like to encourage to write about your experience. Why? Because I want to know where I am headed. I want to know the steps in the process. I want to know how you handled each step of the way. And while I know it is devastatingly hard to write about this stuff......no one does.....and so many of us feel alone and are in the dark about what to expect.
My husband has not been into a nursing home yet. So I have to wonder when do I expect that? Are there signs/symptoms that I can look for?
And do not feel like you have been a complete fool. Love makes all of us do insane things. Including me. I am still in this relationship because I tell myself I love him. But I also have to ask (ok, each one of us has to ask) are we doing the right thing? Are we destroying our own health because the marriage is so horrible? Do we simply stay for the foolish hope that things will return to how they once were (yeah, I'm STILL that stupid!). Do we hang in because of some element of hope? Or is it because they make us feel so guilty we can't leave?
My husband is great at manipulating words to make me feel horribly guilty. He is a pro. But I tell myself that those ugly words only come out when he is in a sugar low - which I think is the truth. But is it? And if they come out in a "low" ....are the what he is thinking on a normal day and keeps to himself? Ya gotta wonder.
Right now....I'm having a wonderful 4 day break at my sister's house. I love coming here. While he does call and try to make me feel guilty about being gone.....I am gone, enjoying the friendship of my sisters (I have 2 that live in the same town) and loving the peace and quiet.
My younger sister pointed out to me yesterday that before my husband became ill, I used to come visit all the time. She said, "we used to have so much fun. I miss that." And I couldn't help but think that I just need to come here more often. They live about a 3 hour drive from me and it's not always possible to get here due to weather conditions. But I think I'm going to have to make a concerted effort to come a little more often.
And this is just so much more fun that being stuck at home with a guy who has a knee and foot infection and can't walk and I have to wait on him hand and foot. Hmmmm.....I guess he's managing life somehow, isn't he?
Wednesday, November 04, 2009
DW, I am so sorry. your husband is only 55? It causes me to be more grateful to Tom. He is 57 and he still plays tennis several times a week - that actually drives me crazy because he isn't available when I "need" him. Don't tell him but I will be more supportive of that than ever.
And your brother is a real doll! But isn't it so often the case that the ones who are so giving just keep on giving? And when your family is there for you, its the best. I have a great family also - but not all families are like that.
Lisa's comments about women judging her about not taking care of her husband hit home with me. My family is mostly supportive but they sometimes waiver. But my husband's family -- well they are another story. the closest we ever really came to divorce was over this issue. Tom had a bad car accident while in a diabetic shock and my husband's mother called me at work to scold me for not doing all of the correct things to make sure it didn't happen. SO INAPPROPRIATE!
First I told Tom that if he didn't tell her she crossed a line then I was walking out. He spoke to her but she cried and, well, he weasled between us. Then when it came to the holidays that year he wanted me to stay at her house. Again, I had to lay it on the line. If I went I stayed in a hotel. Otherwise I didn't go with him. He clearly had a choice -- he chose me even though she gave both of us a piece of her mind for not staying at her house. I walked away from her and wouldn't let her near me. Not sure what Tom listened to from her, but know that she gave him a lot. Too bad. That was about 15 years ago, I have never really forgiven her -- Of course she never gives up but then neither do I. I think I have learned to not let it bother me, but truth is that criticism is always difficult when its about something that you want to be true. You wish you were able to keep him healthy and safe. But its simply not in your power. Just when you think you have given up that power grab, someone comes along and says, "why haven't you ..." I guess its human nature, but sometimes it just irritates.....
oh well, food for thought.
I wish all a good night's sleep; I will try not to wake up with Tom tonight when his meter beeps at 2 or 3 or 4 or whatever time it goes off......
I wonder if we have the same mother-in-law! LOL! I have not been to visit mine in over 2 years. Hubby has been to visit her, but I keep managing to get out of the trips. I figure it's good to stay as busy as I do, gives me an excuse/reason why I can't go visit!
We have had our share of "words" over the years. She thinks I should be her son's personal nurse and we know that's not going to happen. She is now needing a walker and I know she is putting pressure on him to care for her. But I have my own mother who is needing more and more help these days and I just refuse to spread myself any thinner than I am.
So, he has gone to bed with a migraine headache this afternoon. This is happening more and more often. I do worry that he will lose his job and yet am so grateful that he can work from home almost all the time and can rest when he needs to like this. I don't know how he could continue to work if he was required to go into an office every day.
I am starting to think that the stress of what is happening to him, his frustrations with his loss of body functions, are having an impact on my own personal health. Hadn't really given that much thought. But my own blood pressure is starting to be a little elevated. And I find I am getting more and more exhausted and the tired periods seem to be tied in with his highs and lows. Like it's wearing me out to try and be normal when he is ranting and raving. Interesting. Something I will have to pay a little more attention to.
Monday, November 02, 2009
From Tom's Wife:Hi! Yes I'm here. Its just that I have been traveling for work and the renovations on my kitchen have started. it has been a VERY hectic three weeks.
Lisa, my heart goes out to you. when you love your guy you want to do everything you can to help. but at the end of the day (week, year) you simply will wear out. If he were your child wouldn't you want to teach him to be independent and take care of himself and not be so reliant on others? It is physically impossible for you to be with him (and awake) 24 hours a day, 7 days a week.
It's REALLY difficult, but at some point, you will find out what DW and I and so many others have learned. these guys don't want to die. They do take care of themselves (even if they don't do a great job all the time). Take little steps. Start setting out his medications (by dose) and leave it for him to take, if he doesn't take it, let him face the consequences. Leave the house, talk on the phone, leave the room, do whatever you need to do so you don't have to witness the difficult stuff. We know how hard this is but try just one small thing, see how it goes and let us know......
Glad to see you are still here. I am so tired tonight. Hubby has not been able to walk since Friday. I don't know what is more exhausting - the emotions and worry, or running errands. Or the time change. LOL! He is so young (only 55), but his body is simply giving out on him. I wish he would go see his doctor, but he won't.
Bless my brother - he offered to give my husband one of his kidneys. But I told him that he needs to keep it, he has very young children and they may need one down the line. But how incredibly nice for him to offer.
My brother is the youngest sibling and I often think when my husband passes, my brother will be my "crutch". But I also think my sisters are the ones who I will lean on most. At least I have a large family support system.
Lisa wrote:Great to hear from someone who has been there. What I find interesting is how many people feel it is my responsiblity to make sure he does everything right. Especialy other women. If he is not eating correctly, it must be something I am doing wrong. I do have my own intersts, and do work, however when something happen with his health in the end it is my problem. It is a tough and frustrating disease, with many side effects. Many are very difficult for men to handle and women to live with. Great to be able to vent. Lisa
Interesting comment Lisa. My family does not feel that way. The completely understand that it is his disease and there is nothing I can do to help him - when he doesn't want to help himself. However, that is not how it is on his side of the family. His mother thinks I should set out his pills for him, count them out, nag him to take them....my husband's father is also a diabetic and that's exactly what she does for him.
I think today I need to vent about the side affect of neuropathy. I wish I could photograph his feet - but he would want to know why. And we went out to lunch - he couldn't hold his fork. Dropped it on his plate and it banged so loud I jumped. I wasn't looking and just wasn't prepared for the sound of it. But I know he can't close his fingers and grasp things. When there's no feeling in the ends of the feet and hands.....it really does have an impact on how one feeds themselves, gets dressed, drives.....and just so many other htings.
Here's hoping that tomorrow will be a better day with less infection.
Saturday, October 31, 2009
Lisa wrote: You are right that you cannot help someone that will not help himself. I hate that I have allowed myself to become an enabler. My husband has shifted much of the responsibility for his health to me. I am the one refilling and reminding him about his meds. I am not sure at this point if he is exactly sure what and when he takes them. I get tired of nagging about diet and exercise, but if I don't he does what he wants. I understand that it is very difficult to live with a chronic illness, but it is not my fault. I worry that if something happened to me if he would even take his meds. I am angry at myself for letting this happen, but sometimes I guess its easier than fighting it. Lisa
Well, I think a few years back I was right wher eyou were. Fighting all the time. reminding him of what he needed to do. Sick with worry. Angry at him and at me. Then I really decided this was his disease and I shifted all of the responsiblity back to him. I alo realized at that time that he could die at any moment because I knew he was not going to take care of himself.
Friday, October 30, 2009
I would really suggest, if you are religious, get him a minister, if not tell him to bay for a professional counseler. If he were my spouse, I would not be kind at all. I would give him an five days to completes certain goals or else.
Make me chuckle: Or else what? LOL!!!
Despite we must be cautious about statistics, studies of families, twins and Native Americans has revealed a link to genetics. However many factors can cause diabetes. Some farm chemicals, pancreatis, and even prescription drugs have been linked to diabetes. Also a strong correlation exists between the increased production of high fructose corn syrup and the increased prevalence of diabetes. You don't need a study. You only need to look at when high fructose corn syrup began production and track the increases of diabetic cases. High fructose corn syrup is so rich, that it demands huge increases of insulin. So it does not take a genius to reason that those with genetics that can not keep up with the increased concentrations of sugar will have the potential to become diabetic. I guarantee no doctor cares about the food supply chain issue. The more sick people, the greater the profits.
I understand what you are saying. However, his father and grandfather both had diabetes, so pretty certain his is hereditary. No high fructose corn syrup in the late 1800s. Well, not much as they traveled across the praire in covered wagons!
And again, Neil wrote
I know no one wants to hear this. I have been diabetic for 40 years. I check my blood sugar more often than most some times as often as every hour. I have no right to allow my diabetes to affect my children nor my wife. That would be immoral when I can actually do something about my disease. I also exercise up to three hours per day, and I think I should train for the Olympics in the 1500 meter just to prove diabetes does not need to affect anyone's life as long as they want to inject insulin. I also refused long acting insulin and simply use the short acting. It works better, it is closer to what the body makes and that is the rest of my story.
Neil – while this is great for you, my blog is about a non-compliant spouse – a guy who does not want to lift a finger, much less exercise! A guy who has tophi gout so bad in his feet that he can’t walk, let alone run. And yes, we all know he could make changes that would improve his condition….but I know I can’t make him do that.
And that’s what’s so sad about all of this. You just can’t help someone who doesn’t want to be helped
Friday, October 16, 2009
Tuesday, October 13, 2009
Michael wroteMichael, my husband acquired type 2 at about age 22. His father had it, his grandfather had it. His brother did not get it and so far, his son does not have it. So that tells me there's like a 50% chance your child might get diabetes. I'm sure there are loads of statistics out there.....but this is just his family stats.
DW - I recently stumbled on your blog and thought I'd write. I am a diabetic husband - 30 years old, Type 1 since age 5, son of a Type 1 also diagnosed at that age. My wife (same age) and I have been married for four years, and she's a great person who helps incredibly with my health. I am on an insulin pump and did injections until starting pump therapy toward the end of college in 2001. Anyhow, she often gets frustrated (rightfully so) that I don't take better care of myself, and now as we look to begin a family, I find myself very worried about my 25 diabetic years' impact on future children... In a way I don't want to pass this down, but I want children with her. Just often face the hopelessness of it all, and though she and the pets help alleviate it, it's always there. My A1c is currently at 9, and a constant struggle to get down. Anyhow, I'd like to keep in touch, but am not at this point interested in the posting of this, just wanted to tough base. Thanks. Look forward to hearing from you. - Michael in Indiana
(Michael Hoskins) 10/10/09
The Charcot photograph on the right side of your blog shows severe damage. I'm dealing with similar trauma, and I need to stay off my feet as much as possible until it stabilizes. I hope your husband is being treated for the Charcot arthropathy. Best wishes.
What can I say other than yes, yes, yes and I know! Yes, he does stay off his feet as much as possible. Yes, it needs to stabilize. But it has been that way - his feet look just the same as they have for the last 11 years. Part of this I blame on his previous doctor who told him the lumps on his feet were gnarles from his Scottish ancestry. Yes, that doctor should have his license revoked!!!
Saturday, October 03, 2009
I would love to hear if you feel as lonely and isolated as I do at times. I always feel I am trying deal with his insecurity. In many ways he does not feel like the man he was.. becoming more and more dependant on me. We do not have children, so it is pretty much all on me. He is a little older than I am. I am still a vital woman. In some ways I feel cheated. I do not want to feel sorry for myself, just can't complain to him. Feels good to at least express this without being judged. Lisa
Trust me, I know exactly how you feel. So, shall we start the discussion on sex? There are numerous reasons for men to become impotent as they age. Some are just natural. But medications for high blood pressure and gout can often speed up that process. My husband is on them as well as meds for an enlarged prostate. I don't think he's had an erection in 3 years. At first I thought I would die. I tried everything in the book. Then I realized that it was upsetting him that he couldn't please me. Well, we have certainly learned that there are a number of ways to please each other and are back on track in that department.....but it does take work on both sides. He doesn't get the "urge" very often any more. I miss that. But at the same time I don't want to make him any more depressed than what he is.
I tell myself If I were a widow.....I wouldn't even have his company, so I am happy with that these days.
As far as being lonely and isolated....I went to a counselor and she politely told me to "get a life". So I did! She said to volunteer, go back to school, get a job, do anything. I took up art and offer classes and workshops, teach at different places around the country so I get to travel just about as much as I want, and have developed a pretty good "career" doing something that I love. I ususally have other women in the house 2 - 4 days a week. I'm hosting a huge retreat real soon and haven't had a second to be lonely in awhile! In fact, guest artists start arriving tomorrow and will be here for the next 3 weeks - different aritsts, not the same ones...but it will be great fun and get my mind off everything else.
I might not be around here too much as there's going to be all kinds of events going on....including 18 of us going off to see the musical - Menopause! Should be a hoot!
I always recommend therapy. I'm good to chat with, but I think professionals can really offer some great ideas when I'm in a bind.
So glad I found this blog. Nice to feel I am not alone and going crazy. My husband has diabetic retinopathy..lost some sight. It has resticted driving and work. Much more pressure on me. He is not dealing emotionally. I do not know how to deal with it either. Good to at least express my fears without feeling selfish. Lisa
I feel your pain, my dear. I don't think any of us really know how to "deal" with it.....we just manage to survive from one crisis to the next. I like to tell myself that I handle it so well....but I know that I don't. I think my greatest comfort are the comments on this blog....constantly reminding me that I'm not alone....knowing that even in the worst of worst moments....it's simply a roller coaster and I'll soon be back on top of my life. I live for the good times and try my best to make it through the bad times! :o)
Tom's wife wrote
Fascinating. Tom was low. He was going to drive somewhere and I commented that he had better test first. He complied and reported that he was 190. I I said I didn't believe him but he turned and walked into the garage anyway. I assumed he got in the car and drove away. I sat there and waited for the call from the police -- knowing there was nothing I could do.
About fifteen minutes later, I was on the phone with my sister, telling her that Tom should be at her house by now when he walked in the door. He was fine and hadn't gone anywhere. He got a piece of candy out of the car and pulled some weeds out of the grass.
Geez, I was relieved but why does he put me through this?
Well, it's 2:30 am here and I'm still wide awake. Why? I just don't think I can stand going into the bedroom right now. The constnat buzz from his cpap machine reminds me of what my life really is. I have moments when I think I live in a "walking pharmacy" - soooooo many meds in this house. When I get upset....I just want to throw them al into the trash. But I know that's not really a good idea! I go through phases like "death by fat" - let's just feed him 10 bags of potato chips in one meal! or "death by chocolate" - let's go to the bakey and buy everything in the case for him! I think those are my "I give up" phases!
But most of all, I think the reason I don't want to go to bed tonight is that the "is he breathing or not" phase has just about worn me out. If he doesnt get up at 7:00 am when the alarm goes off.....I have to check on him. If I wake up in the middle o fthe night and don't hear the in/out rythm of his cpap....I have to look to see if his body is moving as he breathes. And I find that as his condition worsens....my anxiety increases. And I end up doing a whole lot of self-talk!
I guess what I'm saying is that I still haven't figured out how to not worry.....and yes, I wonder why he puts me through all this...but I honestly don't think he has a clue. And it's the same old quandry. If I tell him what he did, he denies it....because he was in a low and doesn't remember it at all.
Maybe I just need a full time permanent live-in witness! LOLOL!
Sunday, September 27, 2009
So, I know that he was in a low when he got mad and stayed there because he still did not eat. I'm not worried about it at all and am actually enjoying the "silent treatment" as he has gone up to the bedroom and has been watching TV all day long. He came downstairs about 4 pm and got a bag of potato chips and went back upstairs.
I think I'll just sleep on the sofa tonight and leave him to his own misery. At his age, he certainly knows better than to go all day without eating.
Friday, September 25, 2009
I just wanted to reply to your message. When I reference the Us, I am meaning the diabetic has no right to be selfish about his life by refusing to do what is needed. Therefore, I consider any married diabetic male who will not take the steps to be healthy as unethical and irresponsible. Years ago, I decided I had a responsibility to my family, my friends and to this nation to keep fit. If I have to spend huge sums on medical care we all pay because my extra medical costs means higheer insurance rates for everyone. I have not been to a doctor in over a year, and as long as he keeps authorizing my insulin, I have no reason to give my doctor my wallet, cost my insurance company and drive up insurance premiums. My wife has a right to be married to a man who is physically fit, well conditioned from exercise, bright, energetic and goal directed. If I do not take care of myself, that is equal to having an affair, not an affair with another woman, but an affair with nothing but selfishness, and that type of selfishness is rooted a very irresponsible behavior.
Well said! I'll bet a lot of us wish our spouses thought like you!
My hubby goes to see his doctor at least twice a month and sometimes it is twice a week. Just depends on what is going on with him.
On the other hand, I haven't been in 2 years. So I figure we sort of balance out the system. LOL!
But I agree, way too many people (not just diabetics) abuse the medical system by not doing everything they can to keep themselves healthy.
I even send out emails to my friends and tell them if they have a runny nose - please stay home! I cannot take the flu shot due to a prevalance of Guillane Barre syndrome in my family. And I sure don't want to get the flu!
We are having a pretty good week around here. Way too much company with more arriving tomorrow night! I'm hoping next week to have a few days of downtime, and then I have 3 weeks of non-stop houseguests!!!
Wednesday, September 23, 2009
In reality, the nerve damage can be mostly reversed through exercise and using short acting insulin like lispro. I know -- did. Many years ago I was in so much pain that I screamed myself to sleep and begged family members to just shoot me. I got better and brought three children into the world, which proves that sexuality can be returned with insulin. My blood sugar was once over 1000
and later he wrote:
The diabetic can restore his health as I did. If you want my story how I went from wheelchair bound and impotent to perfect health...
Good for you, but I'll guarantee it won't reverse itself in a man who has had diabetes for 33 years and is over age 55. He is way past exercise...and a few other things. I do believe he could stop the progression....but he's simply not willing to do anything towards that end. At best, he will take the pills his doctors prescribe. He eats everything and anything that he wants - including eating out at least once every day, sometimes all 3 meals. He will not exercise and most days he won't even walk to the mailbox.
DW, can you provide me a little advice? I notice that you insert other people's responses into your blog rather than straight posting their responses.
I haven't figured out how to do that without re-typing them. do you have a suggestion? I guess I'm not very PC-smart. tom's wife
I simply highlight, copy and paste. Don't retype a thing! :o)
Oh! the driving thing! One of these days I'll write about that. In the meantime...
5 or 10 years? will he even be alive? between the sugar lows and highs and the crazy driving habits, this is where one really does need to believe in a supreme power. because Tom really tests the limit of "luck" every day.
and contemplating divorce? hah! every day? sometimes hourly! but how do you leave someone who is going to die anyway? That was a little sarcasm, but you get my drift....
I have a few rules. If his mother moves in here - I will leave, no matter how bad he is. Has absolutely nothing to do with his diabetes.....just everything to do with my survival! LOL!!!
If he goes on dialysis and does not take care of himself (keep the incision clean, tubes, etc) or if he expects me to drive him to treatments, I will leave him. That's been my "deal" for years. If he is not going to take care of himself now....I won't be taking care of him then. One has to have "rules" in order to survive both mentally and physically. Will he be alive in 10 years? Probably - because they just keep pumping more drugs into him. :o)
I've been gone the past couple of days visiting family. Came home and it looked like he had not left the sofa. House was a complete mess.....and he wonders why I get upset??? He didn't even take the trash out. Sigh!
Sunday, September 20, 2009
I am so glad that you have addressed the driving problem. My diabetic husband is a crazy driver; so much that I am afraid to ride in the car with him. I pray that he doesn't kill us both someday by his recklessness when he gets behind the car.
It is true, that I can never tell if he is at a high or low. He will seem fine when we start off doing errands but as the day goes by his driving gets worse and worse. I have noticed that his driving is worse after he eats lunch. He will not let me drive most of the time and we end up in an argument and I end up staying at home.
At first I thought he was exhibiting passive aggressive behavior toward me by putting me in harms way when he was driving, but I have come to realize that it is the diabetes that makes him see things differently than actual reality.
My dh is in his mid 40's. I cannot imagine what our life will be like in 5 to 10 more years. I am contemplating divorce just to get away from the craziness.
well, you are not alone as I often wonder what my life will be like in 5 to 10 more years and I think I contemplate divorce every single day. But a couple of things I have witnessed with the driving. He used to do all the driving - but not any more. His feet hurt too bad. Or his kidneys/back hurt too bad. So perhaps in 5 years you will be doing all of the driving. :o)
I liked your comment about exhibiting passive agressive behavior.....I used to think my hubby just wanted me dead the way he drove. Then I went through a phase of screaming my head off when he did something crazy behind the wheel. Then I went through a period of refusing to get into the car with him. I think that's when he started thinking about it. He was so mad at first....but I told him I just wasn't going to ride with him when he drove like an agressive crazy man!
Once.....we were somewhere in the middle of a desert and he was doing 125mph. I screamed at him to pull over. I got out. I refused to ride with him. He took off. I just started walking. He came back. But I tell you - I was willing to walk as far as it took before someone picked me up rather than ride at that speed with him behind the wheel!!!
He hasn't driven that fast since.
And to Tom's Wife - HUGE congratulations for starting your own blog!!! You can see it HERE.
Wednesday, September 16, 2009
I do, however, check them out and if I think it's something valid - I will be happy to share it.
For the most part - I reject this type of comments. Just os you know.
We had a really good couple of days around here. After last weekends melt-down, I think we both deserve some peace and quiet! I've been hosting a guest instructor in my art studio this week. Last night, hubby came down to the basement to say "hi" to all the "girls". I noticed that he could barely walk on the hard concrete floor Poor guy. I think he wants to be involved but just can't physically get himself around. Most of the rest of our house has nice soft carpeting. I just wonder how much longer before he is going to need a wheelchair.
DW - enjoying the calm
Monday, September 14, 2009
I just recently came across your blog. Some of your entries could have been written by me, WORD FOR WORD. Thank you for letting me know that I am not alone.
I really wish more wives would blog. When I started this I honestly thought I was all alone. But I have learned that I'm not alone at all in this. While our experiences are all different - there is a common thread in dealing with diabetics who have lows and highs. There is the angst of their memory lapses, dealing with the cruel and cutting words, yet continuing to stay, continuing to love them.
So no matter how alone any of us might think we are at the moment it happens....know that none of us are every really alone.
Now, that being said - it's not just diabetes.....it can be anything that causes grief and pain. I have a good friend here who has a 21 year old son who is threatening suicide. He is in counseling. She left on vacation. The therapist called my friend in a panic because she could not find my friends son and feared he had committed suicide.
This poor woman was 1300 miles away from home. WHAT was the therapist doing calling her? Of course, it put the dear woman into sheer panic and I don't think she has stopped crying, although she is back home now.
My words to her were straight forward. The boy is 21. She was an exceptional mom. He is now responsible for his decisions, for the choices he makes. And while his choices will grieve her, break her heart, rip her soul out....the most important thing she can do is accept that they are his choices and she can no longer change him, fix him, mend him.....it is up to him from now on and has been up to him for the past few years.
And then it hit me.....I could have just as easily been talking about any non-compliant diabetic. We can expend 100% of our energy taking care of them, making sure they eat right, getting them to exercise, trying our best to keep them healthy and compliant. But in the end.....we can't fix them, we can't force them, and we cannot be responsible for the choices that they make.
So the best thing we can do is get on with our lives, live our lives to the fullest, live a prepared life knowing that they might die any second, be always ready for a low or a high, but most important, take care of our own selves - so that we have the energy to take care of them when we have to.
And know that we are never alone
Sunday, September 13, 2009
I think I may try starting my own blog also, I hope some people will read it also. Any suggestions?
Just do it! Write from the heart. Write the bare bones truth. When it's good, don't forget to write. But when it's bad, spill your guts!
I have no idea how many people see this blog - it's for me. It's simply a record of what I go through. No, I take it back. This is for his kids. When he dies, I will point them here if they want to know what his life was like. They have very little contact with him as they are just too busy with their own lives. But also, I believe they feel that they were abused as kids because he was always yelling at them (lows). I have no doubt it's why his first wife left.
Your next post was:
You know, it would be interesting to know if divorce rates are higher among diabetics than non-diabetics. And whether there is a gender relationship or not. But that is just my curiosity related to know whether or not I'm "normal" or crazy. LOL
You can google this and see that the divorce rate is higher....but I didn't get a number on it. Here's the problem with any of these statistics. Unless you've figured out the whole high/low/anger thing - you'll divorce the guy for a ton of other reasons before you realize you are divorcing him due to his diabetes. Heck, 3 years ago, I would have left in a heartbeat for verbal abuse. And what about the impotence that the drugs bring on? I'll just bet that's a higher statistic than diabetes and women just don't realize it's the disease that is doing this to their husbands
I'm still stuck with the issue that medical examiners list the cause of death as a heart attack.....when we know if they have diabetes this is really a secondary cause of death It's the neuropathy that causes the heart attack. So diabetes should be listed as the primary cause of death.....but that never happens.
We had a pretty good day today. I am still completely drained....but made progress with my cleaning and sorting. Have a very busy week ahead of me with art - classes, workshops and shows. All great fun! Won't be home too much, so anticipating a good week.
Saturday, September 12, 2009
I'd really like to take the hammer and hit his thumb good and hard right about now! LOLOL!
Here's what I think I am learning:
1. When in the middle of a heated argument, stand up to him. Do not let him say mean things to you....say them right back to him. In a calm voice. If he calls you a pig, then tell him quietly that it must take one to know one. If he tells you it is his house, not yours, then tell him that you will be most happy to help him remove your name from the deed. Do not let him talk down to you. Fight back. Be loud but don't yell. Be authorative, but don't use an angry voice. Go from loud to quiet. Get right in his face.
He is going to completely forget it as soon as it's over.
2. Do whatever it takes to get his adrenaline flowing and arguing, talking back in a very very calm voice, refusing to yell, but continuing to make your points, will probably get him so mad his adrenaline will kick into overtime.
His body and brain want him to fight. They know it will get his adrenaline going and get his sugar back up. He probably has no idea why he is yelling, but his body is telling him that he has to do this to survive. Let it happen!
He is going to completely forget it as soon as it's over.
3. Protect yourself. If he starts to get physically violent, walk away. Get into the car. Leave. If he approaches anywhere close to 3 feet of you, walk away. Tell him the the 3 feet around you is your personal space and he does not have permission to enter it when he is angry.
He actually fell for that! But remember, his sugar is low and you have to treat him like a child.
4. When he decides to stop yelling, make sure you have the last word, no matter how long that takes. He said, "you are a really mean, mean woman to say these things to me" and I said, "and you are just the sweetest man on the face of earth to be standing there yelling at me like you were."
By that time, his sugar has started to rise, he will be exhausted.....
and he will completely forget about all of this in about 30 minutes.
5. Walk away when it is over. Leave the room. If he follows you, wait 3 or 4 minutes, then get up and go to another room. Continue this. He will stop following you. I think it must have something with wanting to apologize but not knowing what they did that they need to apologize for. Yet taking comfort in knowing that you are there next to him.
and he will completely forget that he has been following you in about another 30 minutes.
6. Write it all down. Word for word. Start your own blog. Let other women know they are not alone. Let them read all the different things that you have tried as it will help them realize that not every thing works each time they go low (or high).
and if you don't write it down, you will probably forget about it in a week or two!
7. Know that it is going to happen again.
because he will have forgotten that it happened this time
because he doesn't take care of himself and he has highs and lows
because he has this disease.....and remember, it is HIS disease, not yours.
8. Do not accept his apology, make up, or have sex with him for at least 48 hours. OK, on some level, he knows he did something wrong, he knows he needs to apologize....and my personal opinion is that by rewarding him, I am only encouraging this horrible behavior! Yep, sex is important to any relationship. But so is respect And when he goes low and starts saying horrible things to me....I'm really not in the mood for sex
even when he forgets that anything happened!
9. Most of all, know that you are not alone. Every single spouse of a non-compliant diabetic goes through this on some level every time the diabetic's sugar goes high or low. We just all deal with it in different ways. Some episodes are short, some are drawn out, lengthy, dramatic - that's when I leave and go to a movie.
I can almost count on him apologizing within 3 - 4 hours. I can also count on me not getting over it for 3 or 4 days. It's simply how I process the ugliness of diabetes.
the saddest thing is that we will survive. And most likely - they won't.
But I'm raging inside. I think I'm going to start carrying a hammer around and when he goes low, I'll just ask him to put his thumb out on the table and then I'll whack it good and hard.
It serves the same purpose - gets the adrenaline rushing!
And I'd get an ounce of self-satisfaction out of the act of doing it!
Diabetic wife is a serious concern for those who conduct research. Sexual impotence results in a default celibacy. Sex is very important to marriages according to counselers who work with couples. I can also suggest an article written by a person who conducts research on this subject.
As we can clearly see, the diabetic condition can not be a "Me" issue but must be an "Us" issue.
How can it be US if he refuses to allow me to go to the doctor with him, refuses to eat right, refuses to exercise. I'm not doing any of that refusing.....but there's very little US in anything that he is doing and not doing, so from my standpoint, this is HIS disease - there is no US at all and that was 100% HIS choice!!!
Tom's wife wrote:
DW - I'm glad for you. It can be so empowering (I don't a better word) to just start doing something. It sounds like you have ambitious plans. I have no doubt that you will accomplish everything you set out to do -- your husband will be so impressed/bowled over/kicked in the pants that he will either join you in the effort or just leave your to your chores. Either way the result will be great! I'll bet it will also be cathartic (sp?) Here on your blog, we have your back. Keep going where your heart leads you.
And Anonymous, my heart goes out to you, its during these difficult "tornadoes" that we want you to know that you don't stand alone.
"we" are out here just hoping you also know that we are supporting you also.
Thanks TW - someone needs my back - I'll write another post in a few about the "current" events!
Hi! My husband was diagnosed with type II six years ago and has not taken it seriously at all. He wasn't having any problems until recently and now we've been to the ER twice in 6mos with blood sugars in the high 400s. Yesterday I was at work when I got the call that he was disoriented and lost parts of his day. I'm absolutely terrified and extremely frustrated and angry. I've been on him since he got diagnosed that he take care of himself but he's 38 and I can't make him do it. Aside from my wanting him to be here for a long while, we have 3 young children that want their dad around. Any suggestions on what I can do to help/support him and keep my sanity?
Well, your statement, "I can't make him do it' is just about the bottom line. And the only options you have are to stay or to leave. If you stay, know that you can't change him. Change has to come from within him.....not from you. If you leave - it's a different set of problems. I'm in no position to offer help at all - I just am here to listen and to write my own experiences. It's just a complete roller coaster, up one moment and down the next, calm, easy days and screaming "hell" days. I always pray that I just make it through this one more incident and I'll be ok..but in the middle of it - I just want to leave, to walk away, to get out.
So far I'm still here.
Wednesday, September 09, 2009
DW - don't ever apologize to us for not posting - true, we miss you but only if it helps you. If it would ever be helpful to you (YOU!!) tell me if I can help with the blog. You mentioned once that you get lots of stuff that you have to screen out. I'm only offering to help, not to
take anything away from you.
I'm sorry he is so sick and not going/listening to the doctor. being in the car when they drive like that is so scary. and what maybe the hardest part is that there is no warning -- sometimes no way to tell at first when it is just their poor driving skills or their sugar. Grrr!
I'm also sorry about your friend - that makes the stuff with him so much harder. that must be really tough and you are a wonderful person to be helping her. I imagine how close to home it all must hit seeing her "manage" her move and imagining yourself in a similar position. But you still have your health and I commend you on leaving the house when you do -- its the best thing you do -- take care of you!!!
You have written several times about being concerned about moving - but it feels likes a monumental task. One little suggestion, if I may? Why don't you try to find one small thing that you can change now. Maybe you have a junk drawer that you can clean out or maybe he has a box in the basement that he hasn't touched in years. Just address ONE item next week and see if you can decide what to do with it.
See how that goes before moving onto a second item. You don't necessary need to consult with him. if you don't need his help and he won't miss it, it really doesn't matter.
that's my bit for today -- mine is on his best behavior this week because he wants my help. then he travels then I travel. Its a few good weeks for me.
thank you for being here and I'll try to always be here for you
Thanks TW! Actually - I have started the "one item" thing! But in a bigger way! LOL! I've been working in our basement this week and making amazing progress (for me). Four HUGE bags to the trash (I think the 59 gallon sized bags!) and 2 bags for the thrift store up and in my car. The hardest part is carrying it all upstairs - but it has to come up and out sooner or later. I am giving myself all winter to clear out the basement.
Hubby has done model trains in the past. All in the basement. So I told him he has til December to decide what he wants to do with them.
a. box them up for storage.
b. give them all away
c. List them on Craig's list or ebay
d donate them
He didn't seem opposed to at least thinking about it. I do think he has come to accept that he probably is not going to get back feelings in his hands and can't really operate tiny little trains.
In the meantime, I am getting stuff cleaned up, sorted through and it really feels good. I have also decided that it will take 2 years to get this house ready to sell....so I am going forward with that as a plan. This winter to clean out the basement. Next spring to get the yard into shape. Summer will be the 3 car garage (I told him we will probably end up selling the ATV as we haven't been out on it at all this year.) Next fall will be the upstairs. And then we should be good after that.
While I know it will be a really slow process - it's a start. I think it's done me good to see my friend go through this.
And thanks for being here for me! Our weekend was just awful....but things seem to be turning back around this week. He has a lot of business meetings and I'm hiding out in the basement! It's the same old roller coaster....just I understand it a bit better!
Geez! I hope everyone is having a better day! My hubby has had the headaches, backpains, the ups and downs and of course, the driving like a crazy person (I do all the driving now when I am in the car). I just don't get why these men cannot get the fact through their heads that this disease is a road to self destruction and hurts everyone in their path. Well today is another day full of more ups and downs. All are in my thoughts and prayers, just remember to be strong and that it is their disease!
They are sort of like a tornado - going through life - ripping up the path of everyone around them.....and then we scurry around to make it all look normal and happy again......just to have the same tornado come ripping through again - huh? LOLOL!!!
Or I have this image of being on the front seat of a roller coaster...holding on for dear life...knowing that it's there in front of me, it's coming, it's going to upset my stomach and make me want to puke my guts out....anticipating the exact moment it's going to hit.....
Today, we are on a plateau. It's nice.
Saturday, September 05, 2009
Tom's wife wrote:
For me, Tom is doing the swings - its my new term -- one day everything is great and he is as sweet as can be -- the next (tonight) he is clearly low and stupid and out of control and just so **#@ stupid, it drives me insane!
He tells me its because he doesn't want to go blind or lose a foot, but when I mention that he could die of a low-induced coma or heart attack - he tells me that he's not worried because I'll save him. Its enough to want to scream! When did I sign up to be a paramedic?
8/31/2009 5:46 PM
How is he doing? How are you doing?
Well, sorry I haven't been here to post! I've had a hard week - just not motivated to do a thing. So I hear you - I just want to scream! I think this past week it just hit me that we so need to downsize and move to a one level while we still can. What brought that on? Well, I spent a day with a friend who had a pulmanory embolism 3 years ago. She is in a walker. Her husband can barely breathe - they are a bit older - but are in the process of downsizing and moving and neither one of them can physically do it. She is giving things away right and left because she physically can't do anything else. It is beyond sad to watch her part with a lifetime of memories, momentos, furniture, collected dishes, etc.
And then I took a good look around this place and realized that sooner or later, I'm going to have to do the same thing! I can't just wiggle my nose and have it taken care of. But I just don't feel like dealing with any of it right now. Really bad attitude! LOL!!!
How is he doing? Not so great. His back was so bad yesterday that he could barely move. I'm going to guess it is his kidneys. He refused to call his doctor. I left the house for most of the day. I can't sit here and watch him be in so much pain. Nor can I stay here and play gopher girl for everything he wants. If he is not going to go see the doctor - I'm not going to play "nurse" for him. I agree - I don't recall signing up to be his personal paramedic!!!
9/02/2009 6:42 PM
Just a thought:
Is he (or you) sure it's an optical migraine? When my husband's blood sugar is high, he gets really bad headaches. It also affects his vision. Sometimes, if blood sugar is very high, that person can't see anything.
Well, he has been having these for about 3 years now and when they first started, he did go see the doctor about them and the doc confirmed them and gave him a different medication to take for them - but he only takes this Rx after the optical migraine has started. Fortunately, he still has warning signs as to when they come on.
Note to self:
Yesterday, we were out and he was driving. Made a left hand turn from the far right (2 turn lanes) When he rounded the corner, instead of staying in the far right lane, he turned into the inside lane, cutting off the other driver - forcing him to go into the oncoming left turn lane. I said, "didn't you just cut that guy off?" and he said, "no, he pulled into the wrong lane so I just took this one".
He had not eaten anything in about 9 hours and I KNOW he was in the middle of a major low. I had offered him food several times and he turned it down. Think I need to quit going with him anywhere if he is going to do the driving. But then.....I don't recall signing up to be his chauffeur!
Sunday, August 30, 2009
Thursday, August 27, 2009
Sue, I'm so sorry. The reason they don't want you to talk with the doctor is because they know they are wrong. They know the doctor will tell you what they are supposed to do. But we all know that's a losing battle anyway. When they are very high or very low, they are not reasonable -- it doesn't matter what is correct -- they are not in their right minds. So welcome to our club, thank goodness for DW, she is our leader in our "little" group of beleaguered wives who know what to do but never quite figure out how to do it.
Hi to all. I just read Sue's post... I am so sorry you have to go through this. Been there ... My husband is non-compliant, verbally abusive, on dialysis, waiting for a kidney. He now has "sharko", needs major surgery on his feet (with over a year for recovering for each foot), I am living the nightmare. All I can say is be strong, you know that this is his disease and no matter what you do, he has to make his own decisions. It drives me crazy, but really the truth is ... if he doesn't care enough about his own life, I cannot do a thing about it. You are in my prayers and thoughts!
I had to google "sharko" as I did not know this was another name for Charcot. Thanks for educating me!
Prepare yourself for the foot surgery. My hubby has had 1 and our MBR is on the upper floor. He got himself up there....and then I ran myself ragged running up and down stairs fetching things for him. I have already told him that if he has another foot operation, he is going to rent a hospital bed for the main floor! You are so accurate when you say there isn't a thing we can do for them. But oh! isn't it sad?
My hubby is out of town this week on a business trip and I am having a wonderfully quiet, peaceful week. I made a decision to accomplish absolutely nothing and am doing very well at meeting my goal for the week! LOL!!! Well, I am doing a bit of cleaning, and yardwork, changed all the beds - but all at my own leisure. I just so appreciate the quiet and peace when he is gone....and truly appreciate that he can still travel at this point. When he left on Monday, he was having such severe back pain that I thought he might cancel the trip. But he made it and there haven't been any crisis. It's been a really good week!
Sunday, August 23, 2009
My husband is the exact image of what you describe. He has high blood pressure and diabetes. He is very verbally abusive just to me every night. He drinks beer and says he can. (Can't ...it shoots his sugar through the sky) He is very agitated and likes to argue every night. Tells me I am not a good wife,etc. (All very unreasonable) Sometimes when he is having an "episode" he smells like ammonia. What is that? He does not smell fruity breathed. I have been to the marriage counselor, to his family and he doesn't do this to them. My kids and I have suffered for over 17 years with this hard headed man in denial. He is always nice in the morning. I do not know how to get him to test his sugar. He is Type II and on a pill which he says he doesn't need. Also, he is going off his BP meds. he says. He will not allow me to talk to his doctor. Why do they scream and rant? over the littles things? Even if I am pleasant, he starts on me twisting the words and making a fight;.I leave the house and pray. Will this ever stop? I think it is diabetes that is poorly managed. (His dad was a very noncomplient diabetic and I had no respect for him...very self centered and pompous.) Mean to my husband's mother.
I wish the doctors would talk to us!
God bless...and I will pray for all of us here.
I think I remember reading something about ammonia and kidney disease - you could probably google it.
Your husband sounds just like mine. That "twisting the words and making a fight" usually happens when mine is starting down a sugar drop. I have learned to say, "I'm hungry, can we go out to eat?" and if I can get food in him within 20 minutes - we usually avert the fight.
It also helped to have his meds all changed around.
Mine won't let me talk to his doctors either. But I made an appointment with a diabetic nurse at the clinic he goes to and was pretty straight forward with her about how miserable my life was. She got his doctor to call him in and that's when they changed his insulin shots around. Fortunately, he will take the shots and all the pills they give him.....he just continues to eat what and when he wants which doesn't help a thing!
My husband's father is a diabetic as well and I see the same things in him that you see in yours. I just pray my husband's son doesn't develop diabetes.....but he seems to be very likely to do just that.