Plumber's wife wrote:

I am a wife of a diabetic, we have been married for two years. He's a plumber and allows himself to get too busy to check as often as he should.

I really need help. He's on various meds besides the diabetic side effects that are beginning to make me feel that I am just a roommate, housekeeper, nursemaid. I have been giving 100% in the relationship but due to his fatigue, I grow more and more empty.

Last night for instance, my son had a football practice, DH had a side plumbing job and if I hadn't called at 7pm, he wouldn't have made it home due to a diabetic low - he was at 43. He doesn't know anymore that it is going low. He has reached the thresh-hold.

I am at wits end. I want to love him "wide open" but the feeling of insecurity lately has been overwhelming. I don't know from one day to another if God will bring him home.

And I do feel so bad for you. I'm obviously not a therapist and can't really give advice....I just share my life experiences here for other's to read.....and to help me keep my sanity! So I'll say it again.....writing has been very good therapy for me. But I have also sought out professional advice on many of the issues I'm dealing with....and I'm getting ready to do it again.

I've been gone for 3 weeks. I'll be home tomorrow. Hubby had another episode of sulpher burps, vomiting and diarrhea last week. He still thinks it's lactose intolerance yet the labs show it's kidney failure. And I need help dealing with this. I need a professional opinion on what to say to him....how to help him comprehend that yes, his labs can be good on Thursday and bad on Friday. He seems to "get it" that his labs can be horrible on Friday (15% kidney function) and good again on Monday (26%), but he just can't seem to comprehend that they could possibly be good on Thursday and bad by Friday. And I just want to scream and pull my hair out!

So I'm going to call the counseling department this week and schedule an appointment.

Which will most likely end up making me want to pull my hair out even more.

But when I get to my wit's end....I seek help. I, too, went through the phase of feeling like a roommate, house keeper, maid, chauffer.....and I still bounce back once in awhile to those thoughts. In fact, I do think it's something I work on constantly....trying not to allow him to make me have those feelings. If he won't take care of himself....then you can't take care of him either. We just can't change these grown adult men. We can't turn them into someone that they are not.

But we can seek advice and help for how to live with them, how to cope with their inability or unwillingness to change, how to make healthy decisions for us. And then we constantly make the choice...do we stay...do we leave?

Or just take long vacation breaks! I've been gone 3 weeks, teaching art classes, 1000 miles away. My sister went with me. We drove. And it has just been a wonderful time away. She and I talked forever while in the car, in the mornings, late at night. It has been so thearupitic. And guess what? He has survived my absence. And if he can take care of everything while I'm gone....then he can continue to handle it when I come home. I think I'm learning little by little that I don't have to step into the role of nurse, maid, chauffer.....that I can just be the woman I am meant to be....and let him take care of himself.

We'll just have to see how it all works out when I get home tomorrow!

DW

a good week!

I've been gone 2 days and no crisis! He said he is feeling well. He had labs done on Wed, so I asked if he had the results and he said no. I'm sure he just doesn't want me to know what they are. But that's fine. I'm leaving tomorrow and will be gone til the middle of September, traveling, teaching art classes, visiting friends. My sis is going with me. Will be a great road trip!

DW

Sulpher burps

So, he has decided that it's because he has suddenly become lactose intolerante. I'm pretty sure it's all tied to kidney failure. He had another episode of them yesterday, but no vomiting, and he seems to be past them for now.

However, his headaches seem to be almost every day. And severe enough to put him in bed. But will he call his doctor? No!

I'm off to visit mom this weekend. I've already informed my neighbor that I'll be gone for 4 weeks starting next Tuesday. She said that she can come check on him any time I need. So all is well and I'm getting a wonderful month off with my sister! Can hardly wait!

DW

Weekend update

It's almost a pattern now. Every time I plan to leave, something happens to him. I went to visit my sis yesterday. 2 1/2 hours away and decided to spend the night. He woke up with a severe backache, so bad, he called his doctor and they had him in for blood tests.

Rather than spending 2 nights, I only spent 1 night and am back home.....and he is back to being just fine.

Logging all of this really helps me see the pattern.

I'm off next weekend, Sat & Sun, to demo art products at a show a couple of hours away, so I'll spend the night there. Shall we bet that something happens to him again next Friday? Almost certain.

The doc did not call back with labs today, so I'm sure they are fine and they will call him on Monday. The area of his pain was right at his kidneys.

But I'm feeling rested. Even a 24 hour break is great!

DW

Back to normal, so to speak

The acute renal failure episode is behind us. Kidneys are back functioning at 26%. His swelling has gone down. But he is having lots of migraine headaches and severe backaches. Tonight he was limping while he was walking. But all-in-all, things are as normal as they can be.

I've been busy with my art. Preparing to teach 44 classes back at the store that is about 1000 miles from here. This time I'm driving and my sis is traveling with me. A girl's road trip! Should be fun! We will be gone 4 weeks. I'm sure something major will happen to hubby, but I'm planning on having a fun trip!

DW

Does he or doesn't he....

want me to know the truth? I am in a rather jovial mood tonight and it's a darn good thing! We had this big blow up last night and I told him I don't want to hear another word about his diabetes.

So he left the doctor's papers on the kitchen counter. Nothing else. Just that one piece of paper. Out in the open. Of course I read it! LOLOL!

Diagnosis "ACUTE RENAL FAILURE" - primary

Are we surprised? Not really!

BP was 90/60
Pulse 90
and the orders for all the labs they were doing that day.

And of course, it's reversable at this point, so for some reason, it's just another day in the life of us at the moment.

They want him back in for more labs tomorrow.

DW

Feeling so alone

Do you ever have that feeling? I'm there tonight. And even though I know in my head that I'm not alone, I'm having that feeling tonight. Hubby went back to the doctor's yesterday and they ran a whole battery of tests. I went to spend the night at my mom's. Came home and we went out to dinner. While at dinner, he started to talk about yesterday's office visit. I asked him when he has to go back and he said he was to call his doctor tomorrow to see if he should restart his meds.

So naturally, I asked him which meds he stopped and he didn't know their names. So I asked him what the meds were for and he said they were both diuretics. I asked him why he was taking 2 diuretics, did they have another purpose and he just blew up at me. Right there in the restaurant. And I am so tired of this type of behavior that I looked at him and I said, "Fine. I will NEVER ask you anything about your medical condition again. But do not EVER ask me to drive you to he doctor's office or to go with you." And he said, "Well you asked me 3 times what the meds were, once is enough." And I said, "No, once is not enough when you cannot tell me what the med is for., If you asked me you know good and well that I would tell you the exact name of the drug and exactly what it is for and exactly why I am taking it." He looked at me and he said, "you are so right." And we have not said a word to each other since.

I know that he treats me like an employee. He only tells me what he wants me to know. But I have also witnessed that is exactly how he treats his doctors. And he does not hesitate to lie point blank to them, so of course, that's why he doesn't want me in the doctor's office with him.

Yet, when he is scared like he was on Friday, he wants me right there taking him, waiting with him, bringing him home, comforting with hin and listening to what he wants to tell me about the office visit.

Something snapped in me tonight. I am no longer willing to be a partial participant in this journey. Either I am not going to have anything to do with his disease at all - or he is going to turn a corner and involve me 100%. So for now, I will continue to write what I see in him, the changes that I observe and what his behavior is like, but I am not going to discuss it with him, ask him a question, anything. I am tired of how he treats me so I'm stepping out of this part of his life.

Which makes me feel alone.

We'll see how long he wants to travel this road all by himself. It will be interesting for sure.

DW

more problems

Well, he has been vomiting and having diarrhea and sulfur burps since Sunday. Took him to the doctor today. No, he did not want me to go in with him (soooo frustrating). His Creatinine is at 3.3, Potassium up to 4. His sugar was at 65 when he got there. The doc told him to go eat something while the labs were being processed, when we got back, sugar was at 126. And there are white blood cells in his urine. So an infection somewhere?

His GFR is at 21 today, Stage 4.

and he is still in DENIAL!!!

Telling me this is a virus.

Sigh.

They started him on even more meds and an antibiotic. If he vomits again, he is supposed to go to ER.

I think I need to throw up just thinking about all this.

DW

Pam said......

Thank you so much for what you do and write. My dad did nothing for his diabetes until it was too late. I had to deal with him as a child/adult and now I deal with my husband who has had type 2 for 4 years. My Dad recently past away, and now I face what you do in my own husband even more. Reading your blog has helped me to see that I am not the only one who had trouble dealing/ being a caregiver. It has even made me smile! Keep it up!

Well Pam, I write for my sanity. It is my release. My escape. My journal of this journey. My report to his kids when he is dead and they want to know why I didn't do more to help him live. It's a record of our lives from the perspective of living with this disease.

You are not alone. Oh me, I used to feel so completely alone until I started this blog. About 3 years ago, I truly thought it was all me. Now I know it's not. And I know there are many other spouses of non-compliant diabetics out there. There is strength in numbers. That's for sure.

Today was a fairly good day. I think he is done with this latest bout of diahrrea, but I swear, his poor feet look worse than ever. I don't know how he can stand on them. But he manages. He devoured another whole bag of tootsie rolls yesterday and today I saw him with a bag of potato chips. I really wonder how long he can continue this eating pattern. He definitely put on more weight while I was gone. Once again, it's his life and I know I can't change him. But watching him do this to himself is so hard.

DW

Nothing to do with diabetes (I think) but GRRRrrrrr......

I've been gone for 10 days and you'd think I'd left a 10 year old home alone! EVERYTHING is a mess! And he didn't do any of the things he said he would do. ATV is still sitting on the trailer in the drive and our HOA has a 3 day limit. Well, so much for that rule! LOL! Kitchen counters are a complete filthy mess. I smell dog pee in his room. Thank goodness that's the only place I smell it and I just closed the door today. I need to finish moving the rest of my stuff to the other bedroom so there's no reason for me to enter his stinky domain!

It's so sad that all I can do is laugh. I've been up for 3 hours cleaning the main level, laundry is going, trash is out. He said that 2 days ago he was sick with vomiting and diahrrea. So I asked him what he ate. He said he scrambled some eggs. I looked at the expiration date on them - July 18. I can't believe that he can't even read the date and then it hit me - I wonder if he can SEE the date to read it???? I guess next time I leave I will toss out anything that will expire while I am gone. How sad is that?

And of course, he dumped a soda (not empty) into the trash in the office and when I dumped that into the big bag to go out, the soda went all over the floor and I had to mop it up. I swear, I spin my wheels just cleaning up after the man.

No wonder I enjoy my travels so much. I'm a guest instructor and get treated like a "queen" - I don't have to even think about him, no one to run errands for or clean up after - it's actually pretty nice. But then again, that's what caregiver respite is all about. Getting away, getting a break, resting, enjoying a moment of life.

I've agreed to do this all again, for 2 weeks, so it won't be long and I'll be on the road again. In the meantime, I don't have the time to worry about him or deal with him as I have to be making up class samples and then making class kits for the next round of classes.

And I even came home with surplus spending money (I made more than I spent!) So it was a good break and I suppose I will just put a smile on my face and continue on with life.

But no wonder so many spouses and partners of diabetics just walk out on them. No wonder his first wife left while he was gone. I truly do understand and would never fault anyone for leaving. For now, I will continue to stay, just increase the frequency of my trips away. I think it will work. I just need to get past the frustration of the mess I face when I come home.

And then I have to ask myself - can he even see the mess? Does he know what a trail he leaves behind? Can he smell the puppy pee? I don't really want to know the answer, for now, I'll just ponder the quesiton. But if diabetes kills the nerve endings in the fingers and toes, I'll bet money it kills the nerve endings in the nose just as much.

Well no wonder he can't hear me half the time - the nerve endings in his ears are gone!!! LOLOL!

OK, ya gotta laugh - else you will cry.

DW

My R&R

Well, just one more day and then I head back home. This trip has been just exceptionally wonderful. I've taught 150 students in 23 classes in the past 8 days. I've made wonderful new lifetime friends, stayed with new art pals, and just been over in the left side of my brain for the last 8 days. Tomorrow = lunch with musical pals. What fun!!!

Hubby has called 2-3 times every day and I know he knows I'm having just a little too much fun! LOL!

Last night was strange and I wanted to write about it. I didn't have a late night class and my friend I'm staying with offered to cook dinner. I think I got back to the house around 8 pm and her husband was already 2 sheets to the wind from drinking beer, so we decided to join in and poured some red wine. I had 2 glasses - which happens to be 1 glass over my limit! The 3 of us were sitting at the dining table, eating and laughing and her husband was just so much fun. He was trying to convince me that I should move here and just drink and party all the time. Now, I know that's not a possible lifestyle, but for the first time in a very long time, I wanted to party. I wanted to go dancing, to sing, to laugh and giggle, to tell wild stories, to flirt.....

whoa! Back up! I wanted to "flirt"???? What a long lost feeling! And it hit me - I have been so busy worrying about my husband's diabetes, what is happening to him, what might happen next - that I have completely let go of that fun girl I used to be. But the question is - how do you find her again? How do you get her back? How do I laugh more and smile more when I get back home and get back into my daily routine of caring for him?

Well, the store has invited me to come back out in just another 4 weeks and I said YES!!! So I have just a few days to create new class samples and get my act together. I don't think there's going to be a moment to worry about him when I get home. Maybe this is a good thing!

Another break from "real" life!

Just wanted to post that I'm back visiting my girlfriends and having a 10 day break, teaching creative classes, and having a blast. This trip, the place I teach at paid my airfare, are putting me up and providing me a car to drive, so absolutely no expense on my part - but I'm teaching 23 classes in 8 days, so it's "work"! LOL! (Well, if you can call this work!)

At least I'm getting a break, jumping over in the the left side of my brain, and for the most part, completely and totally escaping from real life.

Went to the opening of Mamma Mia with 14 women - now that was a hoot! And went to a musical that another friend is producing. So it's been a fun trip so far!

Hubby keeps trying to call me, but can't get me when he "needs" me as I'm just not answering the phone in the middle of a class, so I think this is really good for him! I've chatted with him about once a day and he seems to be doing just fine. The store where I'm doing classes is already planning to host me again in 6 weeks, so I'm thinking this could be my caregiver respite on an ongoing basis. I'll just have to work hard at making that work for me!

DW

New foot problems

I continue to be amazed at some aspects of this "journey". This week, his right foot has swollen up something terrible. In the area just above the toes. And the top of the skin looks like it would if you got a floor burn. You can almost see red blood through the skin, an area about 2" in diameter. I asked him what happened and he said, nothing, it just showed up.

So, of course, he can't wear shoes and his sandals hurt his feet and I know it's really hard for him to walk on the bottoms of his feet barefoot. Sigh.

He also had a migraine headache that lasted about 5 days. It's gone now, but he was pretty much flat on the sofa the entire time.

7:15 on Friday night and he's gone off to bed. Pretty sad.

DW

The amazing body

He is sleeping on the sofa right now. Snoring like all get out. The interesting thing is that his feet will go through spasms of severe shaking when he stops breathing due to his sleep apnea. It's like his feet shake to alert him that he needs to breathe. I think this is just an amazing pattern and think the bod is incredible.

Looking at his feet, the carcot and gout are just as bad as ever, but no open sores, so much to be thankful for.

He was awake most of last night with a severe migraine headache which has stayed with him almost all day. He didn't eat anything til 3:00 pm. And he's been sleeping since 4 pm. (It's 6:30 now). I'm oping when he wakes up the headache will be gone.

I really should get the video camera out and shoot his shaking foot, his snoring, his sleep apnea. Problem is by the time I found the camera, he'll be awake.

DW

A new day -

I have no idea what that was, but I woke up this morning and I'm perfectly OK. Wonder if it was an allergic reaction of some kind. I seriously thought I was going to have to go to ER yesterday morning because I just could not breathe. Last night I just hurt so bad in my chest, just like pneumonia. But today - I'd swear I never had anything wrong. Just amazing.

So, can you have an allergic reaction to a non-compliant spouse? LOLOLOL!!!!

OK - you gotta have some humor in this! :O)

And he is so much better today. Like last night never happened. We're back working on re-doing his office. More cables. I swear, can a computer geek have too many cables? NOT!!! But it is all starting to come together and it will be very nice. He finally has all his computer books and software in one place, the printers are all working finally (we had a problem with the network and 2 printers had been non-functioning for months. So progress! Yeah!

It's been a good day! Vacation is almost over, tomorrow he goes back to work.

DW

I'm so sick....

Not sure, but it feels like the pneumonia is back. Sigh. So we came home early and I was just sitting on the sofa, resting, had the heating pad on. Had been resting for a couple of hours and picked up my laptop, and started answering emails. He came downstairs and wanted to know if I wanted to go to Burger King or McDonald's with him to get something. I said, "let me finish this email first" and kept typing. He paces the kitchen and says again, "are you ready"? I said, "no, just let me finish". He got mad and walked out the door. Got himself dinner. Nothing for me.

I find it so amazing - I'm sick and he can't wait 2 minutes (ok, it had probably been less than that) for me to finish and email, close the top of my laptop and get untangled from my cords. And in all seriousness, I had finished the email, put my hand up to close the laptop when he walked out the door. I just sat there in shock. That was 4 hours ago. He hasn't said a word to me since. He came home and went upstairs to the bedroom. And I don't even feel well enough to care. I fixed a cheese sandwich half an hour ago.

He's off again tomorrow. I may have to go shopping all day long. I keep saying that I love him and I'm going to stay. Tonight I wonder why? What on earth is wrong with me that I put up with this? I'm the one who is sick, trying to divert pneumonia again. Problem is, I'm too sick to care, just wanted to write this note to myself.

denial vs escape

Anonymous wrote:

I can say this since I am a woman type-two diabetic.....I tend to lose myself in movies like your husband does in order to escape from a life which has become a nightmare devoid of any happiness or real hope for the future.

so here's my next question. Is this "escape" or is it denial? Because I see it as a form of denial. He loses himself in movies and does not deal with such things as testing, eating right, etc.

And how different is escape from denial? Are they the same thing or are they different?

Escape means to break loose from confinement, to avoid a serious or unwanted outcome, to succeed in avoiding

Denial is the act of refusing to comply, asserting something alleged is not true

Not much difference at all.

My husband immerses himself in horror movies, sci fi, etc. I truly believe it allows him to escape "real" life so that he can continue to live in his denial of his disease.

Today, I faced it square in the face. He has said that he has put on 25 -30 pounds this past year. We have a Polaris 2-up ATV. He has put on so much weight, that although his stomach still starts where it did last year, right behind the handles, the rest of him protrudes at least 6 inches more towards me. He was literally squeezing my legs and thighs into the real handle bars. I didn't figure this out until over half way through our ride and I just wanted to cry out of sadness. The ATV did not change shape or size, and I'm wearing the very same jeans I wore last summer. But my legs were totally pinned due to his girth. Truly sad when you have to face this head on.

It will probably be my last ATV ride because my left hip and thigh are totally black and blue tonight. Each time we hit a bump, the weight of his body jammed my leg into the corner of the ATV sticking out. I did not enjoy the ride at all due to the pain. I'm sitting on a heating pad, hoping it will just resolve itself.

I'm going to guess he has put on between 30 - 50 pounds this past year. I know that his waist is now 42". This is a large man. And I think I grieved somewhat today the loss of the fun of riding on an ATV.

I thought we were going to die!

Pulling an ATV on a trailer over a freeway and he started to pull out into the left lane to pass the slow poke in front of us and didn't see the truck coming up on his left. Nearly lost control pulling too far back to the right.

His reflexes are definitely slowing down and I wonder if his perifial vision is failing him? I saw the truck trying to pass us from the passenger side.

OK, all I can do is just keep praying. Fortunately, today, we are safely at our destination. I'm almost afraid to go out on the ATV with him tomorrow and no, he won't let me drive! Definitely a "guy" thing! LOL!

Vacation time

He slept til 11:30!!! Well, I guess he's on vacation - but I did find myself checking on him just to make sure he was OK! It's worse than having a baby! LOL!

We had a very stress free day. Actually quite normal and fun. He has been on a modified atkins for 2 days now. No, he refuses to test his blood sugar levels, but I'm keeping an eye out for signs of lows.

He is having trouble with his left eye. Note, he has had cornea transplants and wears 2 pairs of contacts, hard over soft. So today, he was not able to wear the contacts in the left eye. He asked me to drive him to a get together with his staff, and I did. It was a nice outing. I'm hoping the weekend will remain the same way!

His vacation ends next Tuesday. We're planning on riding the ATV this weeekend with my sis and her hubby, so it should be great!

Normal living. It's great when it happens! :o)

Diabetic parents of diabetic children

I think this must be my week of questions. That, or things are starting to solidify in my brain and more questions are popping up.

I'm going to write a scenario here and change the names to protect the "innocent"! LOL!


Let's say you have a non-compliant diabetic father - let's call him Howard. And he has an adult son who is age 30 who is also a non-compliant diabetic. We'll call him Greg. Now, Greg has an 8 year old son who is not a diabetic (yet). We'll call him Tim.

Both Howard and Greg both have extreme highs and lows in their sugar levels. When they go low, they get angry and yell and scream at anyone around them. But they don't remember yelling or screaming at all.

Greg grew up this way. Being verbally abused as a child when his father had lows.

Tim is being raised this way, verbally abused by a dad who yells at him all the time.

Neither Greg or Howard comprehend that they are verbal abusers - simply because they do not remember the things that they said or the things that they did during their lows.

Greg does not think his father has ever done anything wrong with him - based on the presumption that whenever his dad was low and yelling at him, he was low at the same time and did not remember the things his father said to him.

Tim, not diabetic, no lows, good memory, will come to understand that he is being abused because his teachers at school are noticing changes in his behavior and are talking to him about what's going on at home. Tim will grow up knowing that he is a verbally abused child and he will know why. He will know that his father was completely unaware of what was being said, of what was going on because he was in a low at the time he was angry.

But how many children of diabetic adults grew up being abused, understand they were abused, but do not know that their parents have absolutely no recollection of this because they were in a low (or high) when the event occurred?

I met a 30 something woman not too long ago who told me she was horribly verbally abused as a child. Later in the conversation she told me that her dad was a diabetic who just refused to take care of himself. Something totally clicked in me and I started asking her questions. She realized that her dad probably had been in a low with each outburst and probably had no idea what he had said or done to her over the years. Now, how sad is that?

And where are the studies on the relationship between parents who are diabetics and children who are abused? I'll just bet that ratio is pretty high!