Writing about my experiences

MS.b wrote:

I have some friends who are widows of diabetics but they refuse to talk about their experiences. They will just shrug my questions off and say, oh, that seems like a long time ago. It is like they do not want to remember their beloved dh's health decline. Always remember that there are other wives' out in the world how look to your blog for information and support. There is not a lot of information out there about dealing with these issues.



Here's my thoughts: It is extremly difficult to live with a non-compliant diabetic. It is personally so painful for me. Do I let him have a candy bar when I know it could put him into a coma? How much do I argue with him about diet? Fight to make him eat right? Do I just give up, give in and let him do whatever he wants?

And then when he dies, do I live with the guilt? Do I blame myself? Do I wish I had tried harder, yelled more, been more demanding that he take better care of himself?

I can only imagine their personal pain. I can understand that they want to forget about it, not remember the pain and grief, and get on with life - move as far away from the pain of this as they possibly can.

I know, because I swear, I will never have anything to do with diabetes the rest of my life, once this is over.

I have so many days where I want to hit the delete key and just delete this entire blog. When I read back over what I have written, it only serves to remind me of my personal pain in this journey.

But then I remember the very reason why I started this blog. There is so very little written from the view of a spouse of a non-compliant diabetes. There is no help. No support. And prior to this blog, I just felt completely alone in this. I felt like no one understood at all. And now, I do know differently.

It is extremely hard and painful to write what I write. There are so many hateful comments, people who say I don't love him, people who claim it is all about me, people who tell me to leave him. But there are also those who write a simple "I understand" and I know they do and I know I'm not alone in this.

Very few people write about their feelings when they lose their child to death in a car accident. Fewer write about their pain when a child is murdered. I imagine this is similar. It is hard to find the words to express the pain, the loss, the grief. I write about him killing himself one cell at a time. I write so that his children might one day read and know that he did this to himself. I write so that when he dies, I will reread this and hopefully understand and remember that there was not a single thing I could have done to help him, that these are his choices and that I cannot change him. I write so that I will not blame myself, that I will remember that I cannot blame him, that his disease has progressed to the point where there is no one to blame, it is just what it is and we live one day at a time.

I write so that others who are seeking answers can know that there isn't much out there on this topic written from the perspective of someone actually living this on a day-to-day basis.

And I write most hopefully so other diabetics will read this and take care of themselves so that their spouses do not endure this most horrible pain of watching the person they so desperately love, die, one cell at a time.

Tonight, I am on the second night of a 2 day break away from home. Taking care of the caregiver, giving myself a mini respite at my sisters. One of my most important lessons. Take care of me so that when I get home, I can smile at whatever faces me.

DW

How do you tell

if he's getting worse or not? It's like he bounces from one problem to another. This morning, I think he was having a high. Extremely sensitive. And to top it off his desktop monitor quit working and of course, he blamed it on me. Started yelling and I made up an excuse to run to Walmart to get out of the house. Came back an hour later, monitor working and he was just all happy to see me and started talking about renewing our wedding vows in 3 1/2 years at our 10 year anniversary. (While my brain is thinking - we'll be lucky if I'm here in 3 1/2 months! LOLOL!)

About 1:30, I saw him eating some smarties and asked if he was having a low and he said he was starting to crash. So there's today's high and low that average out to a normal A1c. Sigh.

He decided he wants all new office furniture - and just a year ago he threw a fit when I suggested he get new furniture. (More of the roller coaster ride).

His back is hurting him so much he can barely move. Lower back. He said he called the doctor and they scheduled him for an appointment in 3 weeks. I suggested we go to the ER. I mean - he can't move! So then he started moving. Well, you can tell that it hurts, but at least he is moving. I suppose if it gets real bad, he will call the doctor back. And of course, he could well be lying and never have called the doc at all.

It just seems like he is having more and more angry then happy spells, changing his mind on things, and loss of memory. I am trying my best to just roll with the punches, not take anything real serious, and take care of the caregiver - as much as I can. And pray. I do think prayer has become a much bigger part of my life. After all, it is a form of meditation and that helps.

DW

Dear Widow of Diabetic,

Where do I start with my questions? I must have thousands. How do you stay aware of the difference between changes in his personality that are directly related to diabetes and those that are just part of the aging process? When do they start dialysis? Do you share with anyone else that he is incontinent? How do you tell your own mother that you are doing great when she can read you like a book?

What are the things that happen to him physically before they diagnose him as ESRD?

I keep thinking nothing else can go wrong, but then it does.

How do they go blind? Overnight? Both eyes at the same time? or does the vision just progress until they can no longer see with correction? My DH has had cornea transplants, wears hard lense over soft lenses and readers. I just don't know how he sees a thing. He spends an absolute fortune on the latest in HD TV stuff. Movies are his life. What happens when he can no longer see them?

When do you say "no" to caring for him? To doing all the driving? To running up and down the stairs fetching whatever it is that he wants?

OK, those are just for start.

This week, he is still having wild, strange dreams all night long and is not getting any rest. The skin around his eyelids is looking very pink - compared to the rest of him looking gray/white. He has slept almost this entire weekend. It's 7:30 pm and he's gone to bed for the night.

I think I'm just tired. :o)

DW

Father's Day blues

This has nothing to do with diabetes, but everything to do with how a non-compliant diabetic reacts. He woke up in a totally foul mood today. Just a completel grump. I thought he needed to eat, so offered to take him out for Father's Day. Seems the problem was that his 33 year old daughter had said she would come visit today and then he did not hear from her after that conversation a month ago. But then, he did not call her to follow-up either.

My son (his step-son) called to wish him a Happy Father's Day and that at least put a smile on his face. But he sat here and sulked and sank into an even deeper depression as the day went on. He didn't want to do a thing (was waiting for the phone to ring) and the longer it went without ringing, the worse his mood got.

I can't help but think part of this is just normal, but part has to do with sugar levels being out of whack, on-going depression already in place due to meds, and his recent state of being lethargic all the time.

His son finally did call him at 9:30 pm tonight. His daughter never called and never showed up. I feel so sorry for him. I know he dearly loves his kids and they treat him horribly. I'd have to say that overall, today was about a minus 10. I'm so tired. I think the caregiver needs to take care of herself tomorrow.

No energy to even think about posting.

I just can't do this. I can't keep up with him, with my life, with our existence. I am beyond exhausted. Just cleaning up the crap after him. The whole house smells of urine and I know it's from the depends. He refused to take the trash out and I find myself going nuts taking out the trash, washing his sheets, just trying to keep up with the smell and nothing else. I don't know what I'm going to do. Tonight is really bad.

I have moved into the guest bedroom and it is pleasant in here. But the moment I walk outside, I smell it. We have a trash can for the upstairs out in the hall and I guess tomorrow I will move that into the master bedroom. At least get that smell out of the hallway. Sigh.

He is sleeping almost all the time these days. Part of me thinks that's a blessing. The other part of me is just so bored I could just scream. When he is awake, he just lays on the sofa and watches TV. Today, he got up at 11 am. Went back to sleep at 2 pm. Woke up at 5 pm. and then dozed until 7:30 when he went upstairs to bed. This seems to be a daily pattern. He says he is not sleeping well at night, is having really strange dreams. I suggested it might be side effects from some of his drugs. He said "no".

I do think he is really depressed right now. And he refuses to tell his doctor. I have been doing all of the yardwork this summer and I know that has me worn out as well. I just can't maintain a yard that is over 2/3 acre. Those weeds grow way faster than I can move these days! LOL!

It scares me to think about what we are going to do next. I'm having a terrible time just sorting through things trying to downsize. It seems to be taking forever. But I am working on it, slow but sure.

Got an offer to travel and demo with a manufacturer for the rest of the summer. Will make 5 or 6 weekend trips with them and I totally jumped on the chance to get out of the house even for a few weekends.

Oh, he said he went to his doctor this week and there have been no changes in any of his levels. I really wish I could see the lab results, but he won't share them with me. I just have a feeling in my gut that he is not telling the whole truth. Someone said they think he treats me like an employee - he only tells me what he wants me to know. My thoughts - employees do quit! :o)

DW

Kidney stones

This morning he went to bed about 9:30 am and did not get back up until about 2:30 pm. Tonight he told me he thought he had been passing a kidney stone. He said he hasn't had one in about 20 years. He thinks it has passed.

He is just not sticking to the "diet" at all. Tonight we went out and he had a hamburger and fries. Exactly what he does not need.

He said he thought he might be depressed. I suggested talking to his doctor and perhaps going on meds for that. He just blew me off. As usual. But he did say that he wondered if that is why he sleeps all the time.

He has also reversed his position this week on downsizing and moving to a 1 level condo. Now he says we are staying here and installing an elevator. But I think that's ridiculous. It doesn't solve the issues of getting a wheelchair into a bathroom. Just trying to think about what is best for us for the future. I just can't keep up with the cleaning, gardening and yardwork. It is exhaustive.

optic migraines

Yesterday, he said he was having a whole series of optic migraines. He described them as huge white spots in the middle of his vision. He said he has had them in the past and has talked to his doctor about them. He just sits for about 15 minutes and they go away. No headache with them.

And his right rotator cuff is giving him fits. This morning he said he did not sleep for the pain. So I asked if he needs to go see the doctor for that and he said, "I might".

I'm wondering if optic migraines are a precurser to diabetic blindness.

DW

Change?

We have booked a cruise for this fall and he has started a diet. He has stuck with it for 4 whole days! And he says that on June 1, tomorrow, he is going to start and exercise program. Of course, I am joining him. I am soooo excited! I hope and pray this is what he needs to turn his eating around and take off the 50 pounds he has put on in the past year.

Good things this week!

DW

quiet week

Things are going pretty well. He still has lows and I go for a walk, get out of the house, etc. His next round of medical appointments starts some time in June. We are eating out less, eating more fresh fruit and veggies. He promised to walk today, but didn't. We'll see if he walks tomorrow.

He's back

Pretty funny. He liked what i had done with the dining room. But claimed the guest bedroom is too "feminine". Well...it's where I sleep now...what did he expect? LOL!

He is sleeping. I knew he would. Travel drains him. He carried his bag upstairs and then had to sit on the corner of the bed for 10 minutes trying to get his breath. I almost asked him if he needs oxygen. His toe is still horribly infected and it almost looks like he has a gout infection in his right foot. He said that both of his hands are just wracked with pain. Well, that's a new one for me, but I took a look and sure enough, he has gout nodules all over his fingers, just like on the bottom of his feet.

Poor guy! I can't even imagine what is next. But we will continue to take this one day at a time.

Cpap machine

Sometimes, I just don't notice much in life. Today, for some reason, I woke up and saw his cpap machine sitting beside his bed. That means he went on this trip without it.

One more indication to me that he has no inclination whatsoever to take care of himself.

update

he flew home Monday and back out this morning. This is a business trip and he's gone for a week. He wasn't home long enough for anything to be discussed...but I'm making changes in my own life. Going to cut back, clean out, downsize so we can hopefully sell this house next year and move into a condo...or a 1 level house.

He has a horrible infection in the 2nd toe on his left foot. Is oozing puss. He is limping when he walks. We did go to the store yesterday and he bought new walking shorts....size 40 waist. 3 years ago his waist was 34. He did not use his CPap either night he was home. But he only had one giant Milky Way bar. I can only imagine what he will eat this next week. Somehow, I just don't care. I plan to just enjoy the solitude, work in my studio, continue to finish remodeling the guest bedroom, and take care of me.

DW

Mother's Day

He has flown to be with his mom....I spent today with mine. Tomorrow, I plan a very quiet day of solitude, totally alone, in my own home. My "gift" to me on Mother's Day!

I think it will be wonderful!

I'm sure my boys will call. But other than that, I plan to sit back and enjoy the quiet. Perhaps a long bubble bath, maybe a full day of chick flicks.

I wish each of you a truly peaceful, quiet, non-stressful day.

DW

How can he not know?

It truly does amaze me at times. Ok, all of the time. I joined his staff for a "happy hour" last night and one of his employees was telling me how my hubby was slurring all of his words in a staff meeting 2 weeks ago. I explained that was the meds he wason for his cracked ribs.

My hubby is sitting right there and he says, "I did not slur my words!"

So not only have I told him that he did, but a co-worker also told him. And he still doesn't remember, or worse yet, believe, that he slurred them so bad no one could understand a thing he was saying.

I'm starting to think that the nerve endings in his brain cells are dead! LOL!

And ok, I have to LOL or I'd be sitting here crying.

Current status:

Sleeps in til about 8 am, gets on morning business calls. Takes a long nap from about 10 am - 1 pm, eats a bite, gets on afternoon calls. Day ends about 4 pm and he takes a nap til 6 pm. Dinner. Upstairs in bed to watch more TV about 7:30 pm.

His eyes are looking quite pink around the eyelid this week. But the rest of him is a grey/white. Still in depends 24/7. The tale-tell signs of the toilet bowls are an indication that bowel incontinence is still here. I don't think the meds are helping a bit. He's been on them at least 6 weeks now. No idea how he thinks he going to take 2 trips in the next 2-3 weeks. We will see how he manages.

I plan to bury myself in my art and with my friends while he is away. :o)

Home

I think the man missed me! LOL! But he is in pretty bad shape. His ribs have not healed. Every sneeze, cough, movement makes him wince. I can almost feel the pain. Poor guy.

On the drive home from the airport, I just decided to be gutsy. Told him all the changes I wanted to make. He didn't agree. But he did not disagree. I told him I'm going to go to every medical appointment he has...I don't care what it is. And that he should call his doctor tomorrow and get and OK to fly to visit his parents this week as I don't think he's well enough to go. Wasn't really a demanding conversation as I was joking quite a bit. But I do think he at least heard me. We'll see what happens. But I'm going to push him tomorrow to call his doctor.

He's just so happy to have me home I think he'll do anything I ask....for the next 2-3 days.

Why do I stay?

L wrote:

"May I ask, honestly, why you won't consider leaving permanently?

You are very frank in your blog about your unhappiness and your husband's inability to change his ways. It sounds like you are really a different person being apart from him.

What keeps you there? Is it shared history? Religion? A fear of how he will manage without you?"

Well, in all honesty, I have truly, deeply, honestly considered leaving him. More than once. And it was a huge part of my extended 3 week vacation right now. I needed time to think and come to a turning point in my life. Religion has no part in this. Fearing how he will manage without me isn't a consideration either. Shared history is a big part. Love is a huge factor. I truly do love him. When he is "normal" he is a complete delight to be around. When I have the man I fell in love with....I am at my happiest.

And for now, the times that he is still "here" are worth staying for. I know...love is blind! LOL!

I think what I have learned these past 3 weeks is that yes, I need to take care of the caregiver (me). I need to take a few more breaks. I need to develop a little more of a career/job/occupation for me. I don't know if that will be in art...or if I will return to the workforce. But I need to do something to have a goal, or a reason to be busy a little bit more.

Aren't we all different when we are away from our spouses? I know I'm more rested. I do believe I'm finally over my pneumonia. My chest feels fine....not tight like it was. No wheezing sounds. It's warm here and I've been out walking as well which is great. I forget how much I miss walking when I get cooped up inside the house during the winter snow months. And I've been surrounded by great friends, lots of creative play, loads of smiles and warm hugs, happy reunions and such.

I'm going home tomorrow and I'm going to stay. But somehow, I feel in my bones that things are going to be different. Maybe they have to be. And I can hear a little something in his voice. He had a sneezing attack yesterday and really hurt his ribs again, so he took another pain pill...it made him loopy again. Today, he said he wanted me to come home and tell him if he was ok or not. I told him that from the sound of his voice alone, I could tell that he still had the drugs in him and I asked him to not take another one of them until after I got home. Do not need him driving to the airport under the influence of something so strong. 22 hours after he took the pill, he was still slurring his words. Truly scary.

But my saving grace is the fact that I do know I can walk out any time. I won't do it on the spur of the moment. I will take another break and seriously think about it. But I do have that option. Every single one of us has that option every day of our lives. And I can stay another day knowing that I have that option.

DW

Surviving vs Living

I thought the comment that ended in "we all survive" was so interesting. It got me to thinking about this. Yes, I do know that as spouses of diabetics...we all survive. But do we live?

I've got just a few more days before I go back home. I have been "living"......TRULY living....for the first time in a long time, while here. I haven't had to listen to his angry outbursts. No one has been flopping their body in my bed at night. No sleep apnea with all it's gasps for air. I haven't woken up in the middle of the night for a single thing. Haven't seen a needle, a pricker, any prescription bottle.....

I have been living.

And it's been wonderful.

I don't want to go back to "surviving". I want to continue "Living".

But I know if I go back to him, which I will do, I will go back to just surviving.

I do feel renewed. And I'm hoping it will last a few weeks!

I will probably go into a depression and a deep funk when I get back. You all will have to pull me out of it! :o)

For the moment....I'm going to enjoy the heck out of the next few days!!!

How to contact me

Anonymous. I was starting to worry and am glad you signed on. But I understand, it is a huge risk.

My whole blog is a HUGE risk on my part and it's a very big part of why I do so much to keep my ID hidden. If my hubby could ever prove this was me (like he is going to go search the net regarding non compliant diabetics???) he would kick me out in a heartbeat! And probably threaten me in the process.

A few of my close friends know about this blog. No one else in my immediate life.

But....you can email me :

diabeteswife@yahoo.com

I will check there about once a week to see if I have any notes. And I can share my telephone number that way.

I get tons of anonymous emails, so be sure to let me know who you are!

And anyone can create an email acount via yahoo. I know many do not like to use yahoo....but it really is a safe way to email via the internet in an anonymous fashion.

I know that talking...just hearing another voice, does matter. Knowing that we are not alone...that there are others who share our same fears and concerns, hearing their stories....does help.

I think in the 2 years that I have blogged here, only one other spouse has posted that they stayed with the diabetic until death. I can certainly understand why. It is not an easy journey.

And yes, I know you love him. Just as much as I love mine. But love does not make this an easy life at all. It doesn't ease the pain...if anything, it might make it more difficult to sit there and watch the person you love so much let their life go one cell at a time because they won't follow the rules!

I had dinner last night with a very special friend of mine. He used to be my church choir director. He is a diabetic. He said about a year ago he got so frustrated with all the meds that he quit them cold turkey. His sugar went up to 600!!! I just about came unglued! I told him everything that was going on with my husband and said, "Do you want to be walking around in depends all day long in 6 years???" I could see in his eyes that the "light" was turned on. I think he made some life changing choices last night. It was the first time I had told anyone about my hubby's depends. But I do not want another person to go through this. He is 6 years younger than my husband.

I feel my blood pressure going up just thinking about it! LOLOL!

I think I'm almost ready to go home! 3 more days of teaching classes and shopping, resting by the seashore. It's all been amazingly wonderful!!!

DW

Researching insulin pumps

I guess I should share some of my past "medical research" history. I raised a son who was a severe asthmatic before internet access....and a son who had a severe seizure disorder. In the days before patient advocates. I was their only advocate and spent hours in medical libraries doing research on both their medical conditions. And simply asking pointed questions to their providers in order to get them to think about proper treatment plans.

So I've done the research on this as well. And when someone who provides medical equipment wants to post that 100% of thier patients have had success with their pumps....I will simply hit the "reject" button.

Why? Mainly because I want to hear from the SPOUSE....NOT the patient...that it was a success!

Have I learned my lesson with this disease or what? Non-compliant diabetics are in such denial they will claim success with anything and everything! So if you are a provider....take note, start surveying the spouses. IF the patient even still has a spouse! Talk to the children, How about co-workers? A much better judge of "success" than the patient.

And "Joel", I have an MBA. I know full well that you can make statistics say anything you want. :o) My hubby has a perfect a1c because he has enough highs and lows during a 24 hour period that they balance out to a normal average. So much for numbers!

to quote part of what you wrote, "Diabetes is just a word, not a sentence". I disagree. Diabetes IS a sentence. Every remaining moment of your life totally depends on whether you choose to be compliant or non-compliant. Your moods, your anger, your attitude....is all completely controlled by whether you manage your highs and lows, or choose not to manage them. Diabetes in a non-compliant person is truly a sentence for their spouse and their family.

Anonymous: Yes, it probably is too late for an insulin pump for hubby. If you took one look at his feet, you would wonder how he has managed to escape amputation to this point. Again, hubby refuses to test even once a day. He will only test when he "thinks" he is high. Sigh.

Christine. I think from my research, you are right on. Thank you fo rposting what you wrote. My hubby is not willing to do any o fthis. Perhaps his physicians recognize this and it's why they do not push him to get a pump. Count carbs? He would just guess and enter a number. So I agree, he would be worse off doing things like that.

I know many of you do not believe me, but I am seriously trying to paint a picture of what life is like with a totally non-compliant diabetic. I'm sure each one is different. But I'm getting enough comments from other spouses to start to think there are quite a few common threads that we all experience. Perhaps it's just a whole different world trying to live with someone who is non-compliant. Probably much like an alcoholic who won't quit drinking and is drinking himself to death.

Today, he was in a pretty foul mood on the phone. I could tell he's not doing well. So I'm glad I'm still on "vacation" and don't have to deal with his moods. I'm almost dreading going home. 5 more days of peace and quiet. I'll enjoy every moment of what's left!

Now, you also need to remember that I have a husband who's test strips...the Rx box....is dated 2001!!! That should give you a clue as to how often he will test himself. To even think that he might test once a day? let alone 6 - 8 times a day.....simply put....insane! He is NOT about to do that. So how could putting him on a pump work? It would truly have to be 100% maintenance free. Testing equals maintenance.

insulin pumps

I thought I'd write about them today. My hubby does not have one and REFUSES to get one. Why?

They require "work".

They are not 100% maintenance free.

It is an outward sign of anotherwise unseen disease.

It is an admission that you have this disease, so you really can no longer deny it.

Now remember, this is a man who will tell you that diabetes is a disease of the pancreas AND NOTHING ELSE!!!

And although his kidney function is down to 25%....he will repeat over an over that this is NOT diabetes because diabetes only impacts the pancreas.

He truly is brilliant at finding ways to deny there is anything wrong with him at all. And I do have to giggle....ok, admit it...what guy ever admits his own faults? And I'm sure my hubby sees his low functioning kidneys as a "fault".

And once again, I cannot make life choices for him. He has to do them himself. He has heard the advice of his doctors. He refuses to accept what they tell him is best for him. So no pump for now for all the reasons above. I'm living with a man who has made a choice to die, to live the remaining time he has the way he wants, gobbling down one bag of potato chips and chasing that with a bag of chocolate!

How sad is that?