Looking at the "whole"

Tom's wife: Thanks for your post!

Your last paragraph really hit home. It would be nice if medical care providers and mental health therapists would actually look at the whole unit. I've said that before so many times. From what I've seen, my husband has a general practice doctor, one for his neuropathy, one for his arthritis, one for his vision. He has seen a dietitian. He has a really good pharmacist who double checks drugs all the time. He does not have an endocrinologist. A couple of these are referrals outside his HMO. As far as either of us can tell....none of them ever communicate with each other.

It seems that the mental health therapists have all simply explained the disease, given it a lot of fluff terms, told him the signs of depression to be on the lookout for. Left that up to him to self-diagnose!

No one has ever once asked him about his personal life or his functionality at work.

When he has a low, they want to change his meds to get his levels as even as they can. There is rarely ever a follow-up visit.

He had ONE nurse who actually took the time to chart his highs and lows and make recommendations to his doctor to change his insulin.

They all only seem to take care of the 1 or 2 things that their "speciality" calls for. They tell him that his GP is the one who oversees all this, but the GP only does a general physical when he visits him and will ask, "how is your diabetes, any changes?" and he will say "no" and that's the extent of their conversation.

I often wonder if it's because they have never experienced living with someone who has diabetes....that they don't fully comprehend what goes on in a "low". Doctors are no longer allowed to tell a patient that they are going to die if they don't follow a medical treatment plan. Did you know that? They can only provide you with positive, optimistic outcomes. So at best, his doc can tell him to cut back on fatty foods and sweets. But the other problem is that if the doctor were to ask my husband if he eats many sweets, my husband would tell him "no".

So you have the sad situation where a patient is willing to lie to the doctor in order to avoid the consequences.

They have told him that he is not a candidate for a pump.

The "new" dietetic lingo is "a carb is a carb" and my hubby has taken that to mean he can eat all the sweets that he wants. But if you google carbs, you can soon learn that there are different types of carbs that react differently in the body. I sure wish his dietitian would tell him that!

And I've been told by his HMO that they flat out do not provide any services for caregiver support. They gave me a video and 2 books that were pretty much related to a young person taking care of an elderly person....how to keep them clean, move them so they don't get bedsores....nothing related to highs and lows that diabetics go through, the rages, the anger....nothing at all

And finally, I'd like to get someone to tell me how to handle the situation of no memory when in a low. The nurse that provides me the best counseling has said that she doesn't have an answer for that one short of video taping him. But when we talked about that a little more, she agreed that bringing out a video camera when he was in a low would only provoke him to greater anger. She agreed that there is a very fine line to walk here and literally said, "I don't know how you do it." So, at least rather than denying it happens, she understood that it does.

And therein probably lies the whole problem. Diabetics who don't remember what they did during a low and spouses who won't/don't/can't confront them....and if we do, we are simply told that it didn't happen....because they don't remember it!

When the medical community wakes up and starts addressing the "whole" then we might find help. Until then, I do believe this dickering about words, terms, phrases, titles.....is just a way to get around addressing the real problems that are out there!

DW

Definitions

The definition of staying:

You continue to live with your spouse. The one who is not following their medical treatment plan. You continue to support them. You fix their meals. You cook and clean for them. You keep all the sugar, sweets, treats out of your life because they don't need them in their life. When you both go out to eat, you tell them that they can't have dessert because you are on a diet . You are always on a "diet" because you are trying to keep the sweets away from them. You go without cake, pie or cookies for weeks/month/years.....while they continue to eat everything they can get their hands on. When you find candy wrappers in the side pocked of the car door, you know it wasn't yours.

You become a nurse, a parent, a coach, a mind-reader, a researcher. You worry if you are doing too much or not enough. Do you let them go low or do you force feed them? You give up any hope of a sexual relationship because all of the medications they are on have brought that to an end. You don't have too, you can always have an affair....but you won't behaving that kind of a relationship with the person you married.

When neuropathy attacks the intestines and they no longer can control their bowels, you become the cleaning person you never knew existed.

You live through their lows. You make sure they are getting enough fluids. If they happen to pass out, you call 911, you get them the medical care that they need. You worry. You fret. You pray. You go to counseling. You ask them to go, too. And even when they refuse to go, you still go knowing that you can't force them to change. You exercise in the hopes that they will join you. When they get sick, you are there to care for them. As their disease progresses, you give up more and more of what used to be your life in order to attend to their needs on a full time basis. You deliver meals to them in bed. You clean up the bedding after them. You assist them with their shots. You take their blood sugars for them. Your own personal time dwindles down to a bare shred of what it once was because most of your time is consumed taking care of them.

You come to learn that counseling is simply an expenditure you no longer need. Your spouse won't go with you. Your counselor finally advises you to find something else to do with your life, so you get a job, get a goal, have something to work towards which you find exhausting because you were still have to go home and be their primary care giver.

Your friends stop inviting you to join them because they have learned that you are really only free between breakfast and lunch, or lunch and dinner. You don't invite them to your home because you are spending too much time defending the horrible mood, rants and raves the diabetic might burst forth with at any time in the presence of your house guests. And as their ability to move decreases, you become more and more of a recluse as you become just as housebound as they are.


The definition of leaving:

All that ends.

Anyone who is the spouse of a diabetic, the primary caregiver, already understands these definitions. We don't have to itemize the things we know we have to do if we are going to remain in this relationship. Apparently those with diabetes need to be told in a very systematic fashion everything we already know we have to do for you!!! We don't need to be told that counseling is an option. Most of us have already been there, done that. It almost becomes mandatory as part of the process of making the choice to stay or leave. But when you exhaust all the counseling and the diabetic is still determined to stay on their own path of self destruction.....when the new year tolls and you suddenly realize that you have been doing this for 10, 15, 20 years or more, when you look in the mirror and see the person you have become being the primary caregiver for someone who doesn't care for themselves..... there are still only 2 options:

Do you stay?

Do you leave?

Side note to those with diabetes who read my blog.

I happen to believe that the entire Bible was written by Jews to the Jews, about Jews. My belief. Doesn't matter if you agree or not. We can argue the facts for hours on end. It's still my belief!

This blog happens to be written by the spouse of a diabetic, to other spouses, about my life as the spouse of a diabetic. It's not written about anything else, for anyone else or to anyone else. Pretty simple if you ask me! My blog. My life. We can argue the facts for hours on end. This is still my life - as the spouse of a diabetic.

But if you are a diabetic and have read past posts of mine, here are some questons for you to ponder. Have there been bits and pieces in them that have made you wonder if this is your future? Do you get mad about the things I write about becasue you are in denial of some type....that the things I write about would/could never happen to you? Does the very thought that your spouse might leave you because of your diabetes scare you? Do I touch a nerve....or the possibility of a nerve....that this might be you one of these days?

Give that some thought as you read through this.

Just read here. Then come back and let me disscect her post for you.

1. She’s young. Optimistic. Hopeful! Probably thirtysomething? Has diabetes herself. Does NOT have a spouse who has diabetes!!! We’ve obviously never met. She knows nothing about me personally. Only what I write about my life as the spouse of a diabetic. Something she couldn’t possibly understand because she is not the SPOUSE of a diabetic.

2. She wrote: “but more than 24 hours after the fact and as of this posting, his comment has yet to pixelate, proving the little bird correct.” How quick she is to come to judgement! I was in a remote area visiting my brother and his family – no internet access. My brother broke his back and I go visit once a month for a week to help out. I’m really not the evil person she thinks I am and for her to jump to a conclusion because I didn’t immediately respond to a comment….well, I’d call that unprofessional!!!

Note: Sorry to have to confess, but this blog does not consumemy life. I simply come here to post my notes....so I don't read your comments on a daily basis.

3. She put (sic) after my use of the word - affect. I used that word on purpose to mean the influence that highs, lows and drugs have on behavior. I used the word in it’s proper spelling. And she did not “get”it.

I have a graduate degree and truly understand the use of the English language, so her (sic)s were wrong. Again, incorrectly correcting someone else's grammer - not professional.

4. I read through her post a couple of times and saw no solution for Gregory other than for him to seek counseling. I find that self-serving. Someone who financially benefits from providing counseling….recommending counseling.

5. She says, "how about a little more support from those people who call themselves our diabetes care teams?"

Why does a diabetic EXPECT support from other people??? Be it professional, medical, personal. It seems to me that only those with the disease try to answer this question. They are the only ones who expect the support. Do they once ever write about the support that is nowhere for those who are supporting them?? Hardly!!! We know that there are numerous caregiver support groups available. I just wonder how many diabetics attend them. Do they even begin to comprehend what we go through as their primary caregivers? Do they even care? Seems to me that it's mostly about me, me, me when it comes from their viewpoint. What they need. What they want. What they EXPECT. I don't see them writing very much about supporting the caregivers they live with!

6. She claims that she does not play the blame game. But she does. She is blaming me for just about everything in the book. I think she called me every name in the book. When you call someone else a name - that IS blame! Truly the ultimate in being unprofessional. I can tell that she has absolutely no compassion or understanding whatsoever for the spouses of those diabetics who have chosen to not follow protocol offered to them by their “diabetes care team”.

7. she wants "the people with diabetes (to) end up winning". Who doesn’t? But at what expense? I would like to know if she has ever personally witnessed someone that she loves (not herself) in the middle of a sugar low. That would have to be her spouse, her mother, her father or a sibling. Probably not. I would like to know if she has witnessed them dying, one body part at a time? I doubt it.

I would highly recommend researching and reading about Christian Scientist diabetics. They refuse all medical treatment. What this disease does to their families is quite similar to those of us living with spouses who don't follow proper medical protocol. And there for the grace of God goes every single diabetic - saved only by the meds and diet they pursue. It is a natural progression to death and if you don't follow your protocol, the things I write about will in fact happen to you, and your spouse and loved ones will be right where we ae.

8. It is quite evident that she doesn’t want any of her readers to read my blog and if they do, she is more than happy to support their denial of what life is really life if you have a diabetic in your life who doesn’t follow their care plan. No, it does not have to be like this. It is purely a choice. But it was not a choice that I made. And because I post what my life is like loving and living with someone who has made this choice, she now labels me as toxic. I’d have to argue that living in denial is probably even more toxic.

Could it be that she is just a tiny bit afraid that this might one day be her own husband? That he might decide to leave her because she has diabetes? Because he simply gets tired of providing her the support that she "EXPECTS"? And in denying that as a possibility, she is telling everyone that what I write is "a shadow of doom"? It really isn't. It's real life. It can happen and it does happen. After all, he probably has another 30 years or so to go in order to catch up with where we are. I'd be very very tired of it at that point, wouldn't you?

9. The majority of today’s health care is capitated. Google it if you don’t understand it. If you have an on-going medical condition, you will be lucky to get the basic care that you need. You aren’t going to get mental health visits or therapy at all. Most likely, any mental health professional in your medical facility will be a generalist. They just don’t specialize in diabetes management. It would be wonderful to have something like that available, but we are not there yet. I am an artist. A well-known artist as I’ve had over 100 pieces of my work published in magazines and books. So I probably understand how important art therapy is to anyone, diabetic, spouse or otherwise. It is my personal therapy. But art is not something that every person out there understands...or wants to try. If you have read my blog from the beginning, you will know that I have exhausted (used up) all of the therapy available at my medical facility. I have a wonderful diabetes nurse who continues to work with me. And every single therapist I have seen have all agreed with me - the choice is always - stay or leave. And yes, we have been to couples counseling with a diabetic specialist. Once again, the writer read a few blogs and made her judgment calls. Unprofessional at best.

10. Name calling and making accusations about another person, especially someone that you do not know, is a cowards way out. She should simply take the “high” road and realize that I merely offer a different viewpoint. She doesn’t have to agree with it, but probably, as a professional, should acknowledge that my life does exist as I write it. I find it very interesting that my friends do not call me toxic or think bad of me at all. And I have numerous comments from others who seem to have a similar life, living with their diabetic spouses. It seems that the only people who have a problem with what I write are the people who have diabetes themselves. That should be a wake up call of some type. I write very realistically. I write what happens and my feelings about what happens. I write about life. And just because it makes you angry to read about it - certainly doesn't mean it's wrong for me to write about it!

Conclusion -

If you see hints of yourself in what I write, then do something about yourself. Don’t blame me because I write about it! If you are afraid that what I am writing might be true, and might happen to you or your spouse in the future, then do something about it now. Don’t blame me! And don’t claim that you don’t play the “blame” game when you blame me for writing something that is so honest and accurate about life with a diabetic that it upsets you! There’s nothing toxic about this at all – it’s life! And you need to keep reading what I write in order to prevent it from happening to you and your own spouse!

DW

PS George, ArabKathy, please make sure you send this one too!! ;o)

The Wheelchair discussion

First, Mary wrote:
Hi DW,

Thank you for being the voice for the spouses of non-compliant diabetics. I read your blog regularly. What irks me most about some of the responses to your blog is that the majority of the people do not realize that diabetes is a progressive disease. It doesn't "get better" and it doesn't "stabilize." The disease attacks the organs randomly, it could be the kidneys, heart, veins, eyes...who knows what it will choose to destroy first.

In the 6 years since dh's diagnosis he has had kidney failure, neuropathy in the legs and feet and vision problems. He still will not eat properly, exercise or take his medicine like he is supposed to do. It is emotionally painful for me to stand by and watch him slowly die. This takes me back to the question, "do I stay or do I go."

One of my observant dear friends has told me that I am being emotionally abused by dh. I "know" that. He is a sick man and has no one to take care of him. I ask myself "what kind of person would I be if I left him?" Yes, I "know" I need counseling but that still will not make me leave him at this point. So, for now, I continue with this so called "dance."

You shared a quote back in Nov. 2009: "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 ['diabetic's problems'] isn't the only thing in your life."

I wrote this quote on the inside cover of my journal and I read it most every day. It helps me to stay focused on the future and helps when the dark times come.

My non-compliant spouse is what he is. I can only change myself and how I think about things. I know that one thing is for sure...I will be alone at some point because the disease will eventually win a victory over his life and I will need to support myself financially.

I try to take one day at a time and today is a good day.

Once again, thank you for your blog.

Mary


Thank you for your kind words. Thank you for reminding me of my own words!!!

Today, we had the "wheelchair discussion". Let me tell you, that is a reality check if anything is! He is fine when he is laying in bed. He is ok when he is sitting in a chair. He simply cannot walk. Not any distance at all. So he brought up the possibility of getting a wheelchair.

My first reaction - make sure it has all the bells and whistles because I couldn't possibly push him in it...he simply weighs too much. And I don't think he has the upper arm strength for a manual wheelchair. So we talked about it over lunch. Then the realization hit both us about the same time that we would need a vehicle that could somehow transport the wheelchair. If he were to get a motorized one, then we need a ramp.

And I think it also hit both of us at the same time that neither one of us is ready for this.

We need a ramp up our front steps.

Our entry way is a step up from the rest of the house, so we need a ramp down inside. I think it would be easier to move. But that won't happen with this housing market.

He became utterly depressed. I tried not to cry. And I managed to make it through our talk without tears. But they were right there.

He is going to his doctor on Thursday. He promised to tell him that muscle relaxers and more meds aren't going to do it. He promised to describe his limitations completely. He promised......

But we have been through this so many times before. I know that he gets to the office and will simply say "things are going ok."

Sigh.

I see my life taking another turn. If he doesn't get a wheelchair.....I think we will be housebound. I think I hate it more for him than anything.

Mary, I am with you. It's like watching another piece of him die off. I am right here with you. I don't think there is anything more emotionally painful than to watch the man you love slowly die. Yet at the same time, I remain so grateful for what we still have. We seem to find pleasure in the littlest things. I know I don't write enough about our good times. We do still have them. We truly are still very much in love. And that is evident in our lives 24/7.....except when he is having a low. Or when he is in so much pain that he can't think or reason.

I, too, will be alone one of these days. Much sooner than I want. I know that I will be even more angry at him then for not doing what he could to take care of himself. But even my mom, a former nurse, says that she feels he is at the point of no return and it might simply be best to let him live the rest of his life doing what he wants, the way he wants.

Some things are best left to the unknown. I'm going to go mom's route and simply support him in what he wants to do. I can't change him. I can only love him. But I swear....had I known I would be at this point, I wonder if I would have ever married him. I don't think so.

You don't need counseling. I think each one of us wonders "who" we would be if we didn't live with someone with this disease. It alters our very existence. It changes the path our life might have taken. So I think it's only natural and normal to wonder where we might be if we didn't have a spouse with this disease.

Tom's wife said in her blog that we come here to "whine" and blow off steam with others who understand. And to laugh at those who don't have a clue. It helps make the burdens of the day just a little easier!

DW

A frightening post about the reality of this disease

Agnus wrote:

"I know I'm not ready for him to be paralyzed. But he seems to be in no mood to listen to my fears...."
My husband also has constant sciatic pain but his started after bypass surgery in 1999. He had one of the last open heart surgeries on a steel guerney - after which they changed to a padded platform. His cardio said they added padding to prevent damage to weight-bearing areas that are drained of blood during the surgery. Given that HBS interferes with delivery of blood-borne nutrients, the cellular reasons for the pain could be similar.
My DH takes tramadol and occasional xtra-strength tylenol in addition to 2 types of insulin injections 4 times daily, plus 10 other Rxs for heart, kidneys, BP, depression, anxiety, allergies, sleep disorders - and he has Hep C, cirrhosis and hepatic encephalopathy which causes unpredictable bouts of mental confusion.
And, of course, he is in total denial. I prepare 3 very healthy meals for us both daily, virtually free of carbs because I am a recovering compulsive eater (maintaining 50 lb weight loss 12 years!). But despite this, he snacks like a madman: candy, cake, pie, chips, dips, popcorn, ice cream, peanut butter. He thinks he's being healthy because his bread is 100% whole wheat and his ice cream is No Sugar Added!
His liver specialist told us Dec. 8that his liver will fail in 1-3 years so he should use that time to get his diabetes and weight under control so he can survive a transplant. She was nicely saying, "If you don't get your diabetes and weight under control, we won't waste a liver on you."
His response? He went to bed for three weeks, and ate like a madman. Wild swings, usually from the high 200's to the low 60s but this holiday has been brutal: 565 last Saturday morning, diabetic coma/delerium Monday morning. I stuck a straw in his mouth and he stopped screaming long enough to suck down 4 oz of apple juice but it only increased his terrors. He was seeing monsters and demons, trying to hide under the covers and screaming, screaming. It was awful. It took 4 medics to hold him down for a finger stick (35) and IV.
He spent the next 2 days in awful pain from the convulsions. We went to the doctor Wednesday for guidance on home health support - I have to travel for work sometimes and this is the 3rd time since April that he has confused his Lantus and his Novalog.
Would you believe, he tried to smuggle three lollipops from the nurse's desk on the way out?!
Yesterday he decided to wash his car (he has been mostly bed-ridden since December 8). Of course in 45 minutes he was so low he almost passed out. Then we went to his son's house and he ate all five of HIS food groups: sugar, flour, salt, fat and grease.
Your blog shares remind me this is his disease, not mine. Alanon is also helpful (most families have at least one alcoholic in the family tree to qualify them!). They remind me that I didn't cause it, I can't control it, and I can't cure it.
Because my DH has liver-related mental problems, I have adopted this bottom line for my role in his diabetic care: Don't die today!
This helps me let go of his poor food choices (longer term death risk), while accepting some caregiving responsibility to cover his back on the insulin that, if mismanaged, might kill him today.
Thanks for listening and for sharing your blog. Hopefully my share can help someone else too.
Agnus

Agnus, THANK YOU for posting! I see my future here. I have been asking those who have a spouse worse than mine to post....so I can prepare. Try to prepare. Or maybe just brace myself for what is to come.

I had not heard about the convulstions, liver-related mental problems, or "madman" episodes. How do you survive? How do you get through each day?

I know the basic tenants of Alanon are quite helpful as they do remind us of what I talk about so much here. My 3 "C's" to survival

1. Cause - it's not my fault that he won't take care of his disease
2. Control - he is the only person who can change him.
3. Cure- there's nothing I can do to fix him

You have certainly given me a lot to think about this morning.

Hubby has basically been bed-ridden for the last 3 weeks. He is back to "work" as of yesterday.....but from bed. We went to the grocery store yesterday morning. He couldn't even walk to the pharmacy section to get contact lens solution - he was hanging off the grocery cart. I did the rest of the shopping while he sat in the coffee area and waited for me. Came home and went right to bed.

I have to wonder how much longer before he is in a wheelchair with us in a 3 level house on 2/3 acre of lawn???

But I have a plan!!! I have a huge art event the end of this month that I am working towards. But starting February, I am going to be busy on ebay and craigslist.....selling everything. We are downsizing.....like it or not. I am going to sell absolutely everything that would not fit into a 2car garage - 3 bedroom - 1 level house. No basement. No attic. It has to go in that space, or we are getting rid of it. His collector car. The ATV. The truck and trailer. Huge changes!!! Because I teach art in my home studio.....I have tons to unload.

I realize that if I don't do it now, I will still have to do it at some point in time....and I am not getting any younger. If he ends up in a wheelchair, then I will be so busy as a caregiver, I won't have the time. I am just hoping that he can stay physical enough to do stairs throughout the end of this year.....give me 10 months or so to sell everything and then next spring, we will put this house on the market and look for a handicapped accessible place to retire to.

Now, whether or not the plan works out....at least I have a plan. And I have come to realize that if you are the spouse of a diabetic....you need a plan. It gives you something besides their disease to focus on!

DW

Sad comment from a spouse so young

Gregory wrote:

Thank you for the blog. My wife's going into the hospital tomorrow with DKA, and I looked for "spouses of diabetics" hoping there'd be some support out there. Glad to find it.
I haven't gone back and read earlier entries yet, but I noticed in this particular entry, it appears that only wives are commenting. Thought I'd throw in my two cents as a husband - also as a younger spouse than many of the posters in here. My wife and I are in our early 30's. She was misdiagnosed in her teens or early 20's as having endomitriosis, and it was only discovered around 28 or 29 that all the symptoms her doctors had ascribed to endo were actually caused by diabetes. First they thought she was type 2 and gave her pills that tore her insides out and made her vomit constantly. Then they tentatively called her a "type 1 1/2" because her symptoms seemed somewhere in between 1 and 2. Now they're sure she's type 1. She's been in the hospital with DKA 3 times, I think. Tomorrow will be her 4th.
My wife read somewhere in a book on diabetes that we thought would HELP her deal with her condition that diabetics lose weight when they don't take their insulin. Unfortunately, she read this during the year leading up to our wedding, and decided it would be a FANTASTIC way to fit in the dress. Now, two years into our marriage, she is still doing it on and off - lying about it, of course - and keeps getting hospitalized. She's now the proud owner of a full-blown eating disorder. Everyone thinks she looks great. That's part of the problem. She keeps getting these little self esteem boosts from idiots who don't know that her "miraculous" weight loss is akin to the poundage dropped by a cancer patient on chemo. I can't talk sense into her, we're rarely, if ever, intimate, and I'm terrified that I'm going to lose her. Even now, when she's agreed to go to the hospital, it's only because she grudgingly admitted to me that she thinks she's been in DKA for 4 freaking days, and she won't go check into the ER until she works half her shift tomorrow till someone can come in and cover. I couldn't get her to go TODAY.
Most of the time, my hands shake and I want to break things. When I don't feel that way, I just feel empty. I don't feel like we're on a team. I've made her look me in the eye and promise never to lie to me again about her health, and she's broken that promise a thousand times over. I don't experience the rage and abuse exactly the same way as a lot of the wives who post here, but I do see it. I get episodes of extreme irrationality. I get a stubborn refusal to take medication, talk to doctors, or admit that anyone, anywhere can help. I get a lot of sulking, and a hell of a lot of neediness. I get worn out, and I get heartbroken. That's what I get. And I desperately, passionately love my wife. But the disease is whittling her away from me.
And now I have to go wake her up, because it just occurred to me that I didn't see her take her nighttime insulin.

Interesting comments. I understand exactly how you feel. I am not sure you can be a "team" with a diabetic....unless they almost desparately want to be a team with you. I think it's a side affect of the drugs. Or a side affect of highs and lows. And you have not idea how well I understand every single emotion that you are going through. The sad part is that you are so young. That she is so young.

Don't expect her to keep a promise. I don't think it's possible.

Don't expect her to be honest with you.

Don't expect her to take her meds.

If you read through many of my past blogs, I talk about the only 2 options that we have. Stay or leave. There isn't much in between. Threats don't work. Promises don't work. Trying to help doesn't work. We stay because we truly love them and live for the good moments. Or we leave.

I had a most interesting converstation with my husband earlier this week. I don't know what started it, but he said he had never been angry with me. I nearly choked on the spot! I said, "you seriously don't remember getting so mad and screaming at me that you wanted me out of this house???" and he replied, "I have never said that to you!"

And I believe that is what he honestly thinks.

More proof to me that no matter what they say or do when in a low....they simply won't remember it, so "it never happened".

How sad for us though, that we remember what happens during their lows.

torn sciatic nerve

He tore it a couple of days ago. Yes, self-diagnosis as he refuses to go to the doctor. So I made him (literally forced him) to remain in bed all day yesterday. He was beyond bored after the first 10 movies! LOL! Today, he got up and announced he was fine. So I decided to test his theory out. Told him we could go to lunch and then get groceries. Well, I could tell that about 2 aisles into the grocery - he was near death - the pain was so bad!

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!

DW

It's 1 of 2 things.....

Either life is going quite well for all of us.....or it's so horrible none of us can post a comment!

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!

DW

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
potato chips
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.

Holidays with a diabetic

No tree
No cards
Online shopping
No gatherings
He is off work starting 12/15 - 1/2
No plans

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!

DW

When it's good....it's good!

So I am just posting because it's all good right now. Usually the holiday season has hubby completely stressed out. But I am changing what/how we do. No tree, no decorations. No parties. Our calendar is pretty clear the entire month and he takes off starting on the 15th for the rest of the year. No vacation plans - just here at home.

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!

and what are you thankful for?

I'm thankful that we made it through yesterday! LOL! We seem to have gotten past the last little bump in the never-ending roller coaster ride around here and were able to have a fairly calm Thanksgiving day. A 3 hour drive to "lunch" and then another 3 hour drive home. Pretty exhausting. But still.....thankful that he was in a good mood, thankful that he is wearing shoes, thankful that he is NOT wearing depends any longer, thankful that he was polite and kind the whole time.....so much to be thankful for!!!

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)

DW

a month to change a med?

MaryB wrote:
(((((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.

MaryB

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?

DW

I know it will get worse....but.....

I am beyond exasperated at the moment and will use this blog once again....to vent.

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.

DW

Dialysis - are you prepared?

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!

DW

Dialysis

Ady wrote:

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
potato chips

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!

DW

Dear Tom's Wife:

You are brilliant. You wrote on your blog:

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.

DW

even more comments......

Wow! I've been away the past week and there are loads of comments, so read on......

Neil wrote:

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!

Lisa said:


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.

Ladriana wrote:


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.

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.

andmaree wrote:

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?

:o)

DW

Tom's wife wrote:

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......

tom's wife

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.

DW

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......

Toms Wife

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.

DW

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.

He hasn't. Today he had such bad infections in his knee and foot that he couldn't walk. He sat on the sofa the entire day. I left and ran some errands and did some shopping. Took myself out to lunch. Then came home and fixed dinner. You just have to learn that life goes on. It's a bit like living with an invalid. You have to create a life of your own, separate from them. No, it's not what I want in a marriage and I constantly ask myself why I am here. But Tom's wife will tell you that we stay for the good moments. Speaking of which, Tom's wife....are you still here?

DW

Neil wrote:

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!!!

Neil wrote;

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

DW

statistics

Yes, you can research the internet to see what chance you have of passing diabetes on to your children.

But just remember....80% of all statistics are incorrect.....AND

those who conduct studies can make statistics say anything they want them too.

Trust me, I have an MBA degree.....and have used statistics to prove and disprove the very same point at work. It's really quite a fun thing to do!!!

Because of that, I don't read too much into any statistics I see. I look at what I live with. A man who's father and grandfather both have type 2 diabetes....who has a daughter who shows pre-diabetes symptoms. I'd say that's about a 100% chance in this family that you would get type 2 diabetes.

Plus, you have to consider that a non-compliant diabetic who is still in denial....is probably not going to agree to do a survey or be part of a study group. So the statistics would definitely be skewed.

Missed a few

of your comments over the past few days as I've been having a blast with my artistic pals. Hopefully I can go back and find them and bring them all to the front. And now from the guys:

Michael wrote

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
Publish Reject
(Michael Hoskins) 10/10/09

Michael, 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.

I commend you for thinking this through. When my husband was your age, he had no clue about what he was doing to his children.....that his angry outbursts when he was in a low had such an impact on them. I have written this in the past, but I'll say it again....they feel he was a very abusive father. And he most likely was....but not because he was abusive....because he was low. They have very limited contact with him. I see the very same traits in his father. When the 2 men (my husband and his father) are in the same place together - it truly is like watching a "dance". One goes low, the other gets mad and the anger brings the low one up. There's a whole lot of yelling going on in that place. And I'm sure that's what his kids grew up with.

I should also mention that his daughter does have a condition that could be related to pre-diabetes. She has cysts that attach themselves to her ovaries and twist the ovaries and she finally had both removed and most likely will never have children. She also has a huge problem with kidney stones.

He is the type of person who would have had his children regardless if he brought them into this world with diabetes or not.....probably because he is still in so much denial on so many levels

I, myself, had 2 sons who were both critically ill. So I know first hand what it is like to have children who are disabled and need 24/7 medical care. It is not easy. It is not a "life" that I would wish on anyone. I love my sons dearly.....but honestly....taking care of sick kids can wear a person out.

Jim wrote
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!!!

Is he being treated for arthropathy? No. He is being treated for gout. He has been very very close to amputation in the past, but with surgery that cut out part of the bone, he has managed to keep both feet thus far. He has had periods of crutches, complete inability to walk....and 3 years unable to wear shoes. But for the moment, he is in SAS 10 WWWW and that's better than sandals in the winter months!

DW

Lisa wrote:

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.

Life is hectic

I'm getting ready to host an art retreat for about 30 women.....and my life is a zoo. Fortunatley, hubby is doing well. Sort of. He is in an incredible amount of pain. Most of it is his back (which I think is his kidneys.) He won't go to the doctor, so not much I can do for him. But over all, life is good. And we know the moment I say that....it will blow up in my face again! LOL!

Lisa wrote:

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!

not eating - has to be low

Some days, I wonder what he thinks. It's Sunday. He did not eat a thing until 4 pm. He got mad at me about 11 am. And he has given me the complete "silent treatment."

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.