Another letter from John that really made me think......

He said,

"My kids are used to her testing and needles and know if mom is low they need to get surgar..."


I had never even considered how it must be to be a child and have a mom who you have to care for.  My mom always cared for me, not the other way around!  And how frightening it must be when mom passes out.  Geez!  I have such a needle phobia (and my own mom was a nurse) I simply can't imagine having needles all over the house.  I know it's not just John's kids....it's hundreds if not thousands of other kids who live with a diabetic parent that have to go through this.  Childhood should be a time to play and be a kid....not a time to care for a sick parent, that's for sure!


i keep thinking back to the move "Steel Magnolias" where the little 2 year old was sitting there crying his heart out when dad came home and found mom passed out.  As a parent, that has to be the last thing on earth that you want to happen.  So as a diabetic parent, how on earth could you be non-compliant?


Yet I understand that there are those spouses and parents who are non-compliant for their own reasons.  It's just so hard for me to understand why.


John said,


"But even for me after 10+ years of this, you just start to get worn out, That is when I searched for a support group for diabetic spouses and just found information on how to support the diabetic.... Your blog was the only source that I could find were someone anyone can relate in someway anyway..."


I think all of us have been so disappointed in support groups.  They really do just tell us how to support the diabetic.  And I have to agree.....I'm beyond exhausted from this disease....and I'm extremely healthy.  The last 3 years have been beyond stressful here with hubby's heart attack in 2009, triple bypass in 2010 and double spinal fusion surgeries in 2011 with 8 dialysis treatments to get his kidneys functioning again.  No one should have to go through that much care-giving on top of the normal everyday diabetes caregiving.  And I wake up some days thinking that I can't move....I'm just that tired.  


Yet, if I went to a counselor, they would just tell me that my role in life has changed and I'm now a "caregiver".  So yes, John, I truly understand - there isn't much (if any) support out there for those of us who's role has changed......against our wills....and in an untimely manner.  (I'm not ready to be this "old" when I'm still this "young".)


So, while John's life is much different than mine - I don't have kids, I don't work....and I do have time to write about this disease, he probably doesn't.  He has TWO full time jobs (work and home) and I'm surprised that he's had time to google and find my blog.    But I can relate to that as well.  When my hubby was so sick....I really had no time to blog. It was just short little bursts, not feelings, fears or thoughts.  When I go into times of 100% caregiving, there is just no time for anything else and I am truly grateful that I am retired because I know there are days when I could not go to work.


John, again, I just wish you the best.  I hope you will keep writing and sharing and that maybe others who read this blog can write in their suggestions.  I know it really helps to know you are not alone and that there are other spouses going through the very same emotions that you experience.


Hugs,


DW

A letter from Geri

Geri wrote this to me as a comment on "A letter from John" - but I decided it needs it's own blog:


Dear DW,


I'm glad I found your blog. I used to be a non-compliant diabetic. I have had type 1 Diabetes for 10 years and no matter how high my sugar would go, I would deny that I was doing damage to myself and shortening my life span.I ate whatever I wanted, whenever I wanted, did not test my sugar levels, did not go to the doctor regularly. I am sure my sugar was in the 300's on a daily basis.

I take 4 shots of insulin a day and I am overweight. A year and a half ago, my husband of 13 years got angry with me and refused to support my lifestyle any more. He was my enabler, just like a drug addict has an enabler. But he had had it. He did not want to see me leading myself to an early grave. 

Thanks to him, and his 'hard' tactics I went to a good endocrinologist. My A1C was a 9.5 when I started seeing her. My last visit a month ago it was a 6.0. I test my sugar 3 times a day, I watch what I eat, but allow myself a day for carbs so that I don't go crazy. I have lost 45 pounds and I just feel so much better than the fatigued, lethargic mess that I was. 

I found that the healthier diet and no junk food, has brought my own stomach issues , high blood pressure, cholesterol problems, under control. 

Most of us diabetics are in some state of constant denial about our disease. I went to classes on how diabetics affects us, inside and out and it really opened my eyes. I wish you luck in your own struggle with living with a non-compliant diabetic. I hope he gets the help he needs to get his own diabetes under control. Trust me, he is the only one who can take control...when he wants it. 


Geri




Dear Geri,


You are so brave and so wide to be doing what you are doing.  I know from my own hubby that it is not easy to lose weight, eat healthy and do the things you need to do to be compliant....so huge kudos coming your way from all of us!!!  Congratulations on getting your A1c down so far!  That is amazing!!!


It is nice to hear from a diabetic that you think most diabetics are in some state of constant denial about the disease.  I have been saying that for years now.  I don't see how my hubby can eat and live the way he does without being in a near constant state of complete denial.....let alone "some" state.  I'm the one who has had to learn that he has to take control.....I can't.  


You didn't mention - is your hubby still with you?  I do hope so.  And I wish you continued success with your "awakening"!!!


DW

A letter from John

Dear DW,

I have read thru most of your blog here and ALOT of what is posted is so true. My wife is a type 1 who has had diabetes for the last 10 years. She does try to control her numbers because she is forced to but the side effects and the laziness/not exercising is just as bad as your husbands.

I feel your frustration of having no place to vent and always having to be supportive. It does not end ever, you never know when a (for me) low number is going to show up! I can relate to so much, the yelling and fights over the dumbest things and then once you figure out that they need to get out of a low they act as if nothing happened, just gets me so mad!

My wife never sees my anger or hatred. We have 2 young kids and I have to explain that mom is not mad at them but it is just part of diabetes. I try to absorb as much of this hatred and anger to me. She also tries to pass tests, for her A1C if she wakes up and her numbers and not in the normal range she will go and get the lab work done on a day when her numbers are good. It’s Like a denial, throw in the depression and I never know what kind of day that I am waking up to.

 I am also always phoning the house just to make sure she is alive. It's like I have 3 kids and the worrying never fully leaves you. And the sleeping on the couch! I am a really light sleeper and have lost track of the number of times that I would wake up and she would be in a low induced coma, the glucagon needle has saved us so much on ambulance costs! She would be low and with this sugar needle in 15 mins she is up and working normally, give her some food to stabilize her and she is fine. And I love how she is mad at me for waking her up in the middle of the night and can’t recall a damn thing.

Sorry if I am going on and on and my thoughts are jumping all over the place but it has taken me a while to go thru your blog and I did not want to add comments all over the place. I am in my 30's and there are days I just want a normal life. Where did my 150lb working wife go? She is so over weight and the things she eats, just boxes of chocolate and candies, she always tells me that she is in control of her numbers but she is not. I hate to argue and fight! it is not in my personality! The times I have tried to reason with her have just ended up in disaster.

The hate tread that is directed to me! I work and do all everything, cleaning, cooking,  you can tell what rooms I have been to by if they are clean or not! and she just found out that she is getting kidney problems. I read where you are in your life and it is where I am going. I will keep working my butt off and taking care of my kids and wife but she is slowly starting to die.

There is no way she will hit 55 at this rate. I would never tell her any of this, I always have to be positive to her even with the screaming that I get. Again sorry if this is going on and on but it is the truth. It is amazing that we were able to have kids who are pretty healthy but there is NO support for the spouse's of diabetics. Every day she is getting bigger and with the depression you get laziness and sleeping in. Say the wrong thing in the morning and your day is shot. I find it very frustrating that she no longer gives signs of going low! No more sweating or her telling me. It’s just down to her yelling and or just little things only a spouse can pick up.

 I wish I had family that could help me so I could get 1 day off from this, But our family have no idea on how to handle the simple things , like use a meter! They call me for instructions. I love the kids that we have but on a personal basis. There is a point where I want to put myself first for once!

 My reward will be kids grown up and moved out, dead wife and I will enter my golden years without a spouse. I look forward to the break from the diabetes but the cost will be me on vacation by myself and  I will not want a companion (my love).

There are days I am so tired, tired of the yelling, fighting, depression, worrying, responsibility , work, no sleeping, It does not end. My personal drive of being forced to get stuff done because there is no one else some days are the only thing that keeps me going.

The brief moments of a normal life are so far and between, just enough to reminds you and tease you. Only a spouse of a longtime non-compliant diabetic will ever understand the rant that I just posted. Keep up with the blog, it is my future!

Best of luck, I fully understand and feel for you!!!!! - TYPE_1_DH

I wrote back and asked John if I could post his email here and he said I could.  Of course, I wrote back much more than that.  But I wanted to share his email here because I just think there are more and more of us spouses with no way to connect, no resources, no one listening to us, and John is just another example.

My heart goes out to him because he has young kids. And while his wife probably can't help here highs and lows if she's non-compliant....the end result is that the kids get the brunt of it.  We all know how our spouses get towards us - imagine a small child seeing mom in a high or low.  Just breaks my heart!

And John is just so young.  He is doing exactly what I do. He is venting here....and then being a loving, devoted, helpful, caring spouse in real life.  I think that's what all of us do.  But we need a place to vent, that's for sure!

When John replied back (I won't post all of what he wrote) he hit me in my heart when he said,

" I just want to yell at her " Is this not a team effort? do your share of the work around here and free up some of my time!" But if I even hint to that, she will get very depressed, bla bla bla and I can see her or some family memeber will pull out the diabetic card on me!" I would be such a evil person for being unsupportive. "

Isn't that the truth?  Diabetics pull out the "diabetic card" and make us, the spouses, feel like we are evil, unsupportive, uncaring.

To John, you and your kids are in all of our prayers.  Write back and let us know how you are.

DW

Physical was today.....

and the GP said he needs to talk to the Endo and the Nephro.  But he did tell him that the problems he's having with his digestive system are related to his diabetes.  Told him that he needs to get his sugar levels down and lose weight.

Anyone want to take bets on this happening?  Sad, just so sad that he won't do what he needs to do to make his own life more comfortable.

New labs

A1c is 10.5.  It's continuing to climb upwards.
Triglycerides are climbing - up to 1451.

He has his annual physical tomorrow.  I'm not going.  I sure hope he talks to his doc about the gas he's been having.

My sis is here and we are having fun.  We are converting the exercise room into a studio/bedroom.  I am already sleeping so much better and I think he is too.  I think he wants me in the same room with him, but he is really understanding that at this point, we need separate rooms.  We have sort of converted the MBR into a man-cave and he likes it.  We are painting browns, blacks, creams and arranged the furniture so he has a big overstuffed recliner he can rest in as well as his bed.

I'm doing so much better now that I'm sleeping all night long.  I usually spend an hour or so watching TV with him before I head off to bed - that seems to keep him happy as well.

It also seems that when my sister is here, he is on his best behavior.  So life is good at the moment!

Allowing the diabetic to drive

Dear Tom's wife:

In Europe, people who have had 2 hypos in a year cannot drive.  Link here.

The ADA says to pull over if you are low.  They tell you it's similar to driving drunk.

But we know that seasoned diabetics cannot always tell when they are going low.  They become immune to that sensation.

The ADA explains the risks here


Each state here currently has different laws.  Here's California's matrix.  If we lived in that state, which we don't, hubby would not drive!

If you take insulin and live in Texas, you need a medical evaluation.  You can click here to find your state.

But here's the deal.  My husband would never admit that he takes insulin.  He thinks it's none of their business.  And to top it off, I'm pretty sure his doctor would put down on a medical evaluation that he is perfectly capable of driving!

I know that my hubby should not ever be behind the wheel of a car.  But that does not prevent him from driving.  If I go with him, I drive.  If there is anyone else in the car with us, I drive.  That is my rule.  I/we will simply not get in the car with him if he is behind the wheel.  And yes, I get terribly tired of doing all the driving.

And yes, it was my sister who brought about this change.  Was I upset with her?  Not at all!  I am eternally grateful that she said to me, "I will not ride if he is driving."  I needed to hear those words.  I needed to be made aware of just how dangerous it is to get in the car with someone who has diabetes behind the wheel.  It really is like driving drunk.  Some drunk drivers never ever get into a wreck.  But you just never know when it could happen.

For the past 2 years, my mantra has been that if he gets behind the wheel, he takes his life into his own hands.  But he will not take my life, my friends or my family's lives into his hands.  It's just not allowed.

Yes, he fought me tooth and nail on this one.  He got mad.  He threw a fit.  He refused to get into the car with me behind the wheel.  But he did get over it.  And he no longer drives my car.  And I rarely if ever get into his truck if he is driving.

Read the links.  I think it will be a real eye opener.  It was for me!

DW

How many ways are there to handle your spouse's diabetes?

My dad's brother is married to a wonderful woman. They are in their 70s.  She has had diabetes all her life and recently had her leg amputated.  Prior to that, she had multiple surgeries trying to save her foot....cutting bits and pieces out at a time.

My uncle has always had a funny sense of humor - he simply can make any situation funny. He laughs a lot.  He never gets upset.  He has been that way my entire life.  And that is how he handles her diabetes.  Everything is a joke.  Everything.

And while that is how they get through every day or their life....that does not work for me.  My aunt has pretty much always ignored her diabetes.  Overweight.  Eats anything she wants.  Does not exercise.

I've been off for a visit with my mom and she made a comment that I found quite interesting.  She said that my aunt's daughter should go move her computer from the back bedroom to the living room so my aunt and my mom could email each other.  Apparently my aunt can no longer physically get to where the computer is.  They live about 1000 miles away from my mom.  And that gave me even a different perspective on different lifestyles.  My mom has her computer in her living room.  Skype is always on.  You just ring her up and she's there.  My aunt, has her computer in the back of her house, via a maze that she can no longer get through.

So is the way each family handles diabetes the way you handle your life as a whole?  To some is it a joke - to be written off completely?  To some, you hide it in the back corner of a room somewhere - out of sight, out of mind?  To others it's in the center of the living room - in the middle of your life and something you deal with every single day?

Oe does it move around?  Some days it's right there in front of you and you deal with it - other days it's hidden away and you don't even think about it.

Interesting thoughts.

Having been off on a visit to my mom and then my brother - I've escaped the whole diabetes thing for a few days.  Life is pretty good on the road!  LOL!  Back at home, I'm again painting walls and ceilings, moving entire rooms inside the house.  Exercise equipment is going to the basement and the front bedroom will be a studio/bedroom.  The current studio is getting turned into a library where I'm hopeful I can easily access cookbooks and medical reference books.  So loads of painting to keep my days occupied.  When done, I should have my own bedroom I can sleep in and we wills till have a guest room for when my sisters come to stay.

Hubby is still having horrible flatulence.  Doctor's visit is next Tuesday.  He still hasn't done labs that neuropathy requested he do a month ago.  We both got off track on the heathy eating while I was gone, but will start back on again today.  It's good to have goals!

DW

3 am low

My nightmare.  We have 2 tiny dogs that go in a crate at night between our beds.  For the last 3 years, I have gotten up and taken them out to potty anywhere between 5 and 7 am.  Last night they started scratching their crate and whimpering at 2 am.  I ignored them.  I just think that it's time that he take care of them.  Note, I have never had indoor pets in my life until I married him.  

So, at 3 am, I decide I have to get up and take them out to prevent an accident.  So I turned the light on.  I never do that, but yes, I was mad and felt that if I had to wake up, go downstairs, wait til they got done, and get them back inside, he could wake up, too.

Well, he simply went ballistic.  And since we are eating healthy, I know he is going low as he is not adjusting his insulin downwards for fewer carbs.  He was just screaming his head off.  And I very quietly said that he was free to take them out if he wanted.  ha ha!  Of course that's not what he wants.  He wants me to do it all for him.

And after 3 years of doing everything for him, I'm sorry, but I'm done.  

Tonight, I'll sleep in the guest bedroom as I need a good night's sleep  He will simply have to contend with the dogs and if they pee in the crate, I will let him do the laundry for that as well.  

Over the past few months I've come to realize that I'm enabling him in so many areas.  I set the thermostat to 60 degrees to help save on heat costs and I walk around half sick because it's so cold.  Today I raised it to 67 degrees.  I run up and down the stairs at a whim to get him whatever he needs - that's stopping.  I take the dogs out to go potty all the time - well, I will still do it in the day, but not at night any more.  The arthritis is growing in my hips and he needs to realize just how much it hurts me to go up and down the stairs.  

I think 2012 is going to be about change.  Maybe more than I want.....but this is a start.  Hopefully he will get on board before it's too late!

DW

24 hours later

He was so much better this morning!  I love that Sudafed.  He loves Nyquill.  ha ha!  We ended up going out to lunch today and to a movie.  But we both managed to stay under the points limit on WW.  It was a pretty good day.

DW

Happy New Year's

It's New Year's eve here.  Hubby caught a cold and is in bed, sick.  Tomorrow is our anniversary.  He said, "pick yourself up a really nice anniversary card."  I laughed!  Poor guy - at least he's thinking about it!  I hope he's better in the morning.  Obviously we're not staying up to watch the ball drop.

Tomorrow, I am starting a healthy eating plan.  It will be interesting.  He will either have to eat what I do, or fix for himself.  What do you think?  I'm also going to ask him to get on the treadmill every single day.  I'm hoping that if I do it, he will....even if it's out of guilt.

Here is wishing each of you a year where your spouse follows the "rules" and does whatever it takes to keep his/her diabetes in control.  Let's hope the roller coaster is a flat ride in 2012!

DW

flatulence

Last night, he literally blew me out of the room.  I woke up nearly vomiting in my sleep from the smell.  Beyond anything I have ever had to smell.  Fell asleep on the sofa and my back has hurt all day long.

My sister and brother-in-law surprised us with a visit today. It always helps when she comes to town.  She is my best friend and really understands everything I'm going through.  She's also an incredible artist, so there's no end to the fun we can have together.

Hubby stayed up with us til 9 pm and then went to bed.  No idea what I'll do if he "blows" me out of the room tonight.  He really needs to go see his doctor(s), but I don't think he's going to.  He was supposed to get labs done this week and didn't do that either.

DW

Cataracts

He went to see his eye doctor today and he has cataracts.  Now, that wouldn't be any big deal, except he has had his corneas replaced, so removing the cataracts will be a bit more complex than normal surgery.

The doctor said he can put it off til summer.  I think the guy just doesn't want to have any more surgery of any type.

So, until then, I will be doing all the driving.

What next?

Christmas with his grandkids

Today is our only holiday celebration. His kids and grandkids were here.  I had let him order all their gifts online - he used Amazon and they came already wrapped.

Well, there were mistakes. The oldest granddaughter got 2 Wappydogs, so the youngest grabbed one for herself.  The 2nd wappy was supposed to be something else, so basically, the oldest only got one gift, while the other 2 got several.

And you could see the disappointment in her eyes.

I pulled hubby aside and handed him a $50 giftcard that I was going to mail to my son and told him he had to give it to her.

He did....and she was thrilled!!!

But it hit me that I think the problems with cognitive skills may have started, so I need to start writing these down as well.  I checked his online orders and he had ordered 2 of the same thing and none of the order. Yet he has proclaimed over and over all afternoon that the toy store messed up.

We had gone to the grocery store this morning to pick up last minute things for lunch.  We were at the checkout and he was behind me and I said, "do you want to go ahead of me and give her your card?" meaning the discount card for that store.  He started digging in his pockets and asked me if I had my car keys.  I asked him why he needed my keys.  He said to go get the car.  So I realized he thought I had said "car" not "card".  So I said, "No, I didn't say car....do you want to give her your grocery card?"  and he just stood there and stared at me.  It did not register to him what I was saying at all.  So I said, "You know, for the discount on what we are buying today?"  and he still just stared at me.  I started to ask him for his wallet and he blinked and said, "Oh - my grocery card!!!"

Now, we have been doing this 2 - 3 times a week since his last surgery - it's become almost a daily thing this past month.  At first I thought it was just the hubub of so much going on, but now I'm starting to wonder.

I've read as much as I can find about neuropathy of the brain and what to expect.  This really is a new kind of stress.  And it seems to be the simplest things.  Trying not to have any frustration in my voice is so hard....but so far, I'm doing ok.

What I'm learning more and more is that this really is not easy. There is no text book to prepare you or even help you.  There are no guidelines.  No rules.  you just fumble your way through it the best you can....knowing that it is only going to get worse.
DW

He can't stop

Tonight he ate a 1 pound of box of specialty chocolates after lunch and dinner at restaurants.

All I can do is pray.

He is so on edge

and I'm pretty sure it's from the constant high sugars.  Everything upsets him.  Yesterday, I didn't say "good morning", but started out my day by letting him know I was running to the post office.  He came completely unglued because I didn't say "good morning" first thing.  Not his typical behavior at all.

Today, he wanted to follow me around the grocery store.  He has not done that in 3 years.  He always sits in the chair and waits for me to finish.  Today, he bought everything in sight.  Literally.  I finally had to ask him to go sit and wait for me....and then I started putting thing back on the shelves!!!

The past couple of weeks have been like this.  Everything seems to upset him.  News.  Weather.  He just gets mad at the drop of a pin.  I've been very quiet, not saying much of anything.

But on the opposite end of the spectrum, he's been putting in movies that I like.  He never does that.  He hates chick flicks...but he's been asking me what I want to watch (not typical behavior either.)

I'm just making my observations.  The other weird thing is his body heat.  He has been hot this winter. He keeps turning the thermostat down and I turn it up.  He sleeps in his shorts with no blankets while I'm bundled up in jammies and a heavy blanket.  Completely different from past winters.

I feel like there's a time bomb ticking in him and it's going to explode any minute....but then it doesn't.  It's just that "feeling" is there all the time - he's that much on edge.

DW

On her birthday - she writes to me - I hope we can help her.

From another wife:


I sit on the couch in the dark frustrated over the same life that you seem to describe in this blog. I have been a coach's wide for what will be twenty five years in July of 2012. My husband has been a diabetic since his early twenties and is now fifty. He almost died before my eyes twice since December of 2010. He had a stroke at 37 and miraculously had no deficits except numbness to slight numbness to left side. After his heart attack, he was put on ventilator and went to a rehab facility. I have had to stay in a icu waiting room praying he would live. He has been life back three times but still does not appreciate it as evidence of not adhering to a diet with blood sugars running over 600. He is on a large amount of insulin daily. Likewise, he has very bad mood swings. I have been told when I kindly commented to him to watch his carbs out if love and concern to only be told could he "just eat one time in peace". If I suggest or show concern then he just says he is tired and ready to go "home" which he means to heaven". He weighs 280 and is 5'9". His family history includes deceased parents, both of which died at age 59. His brother who I love like he was my brother has just been told has about five years to live because his heart is severely diseased. He will need a heart transplant. His son is nine and has been a juvenile diabetic since three. I get mad at him on the inside because I feel it it selfish of him not to want to manage his diabetes. Does he not love me? I am his primary caregiver. He is legally blind and requires assist with daily living activities. He walks very limited and has bad neuropathy in his lower extremities. I know this a long comment but I am lonely and depressed and today is my birthday. I wish I had more control of my life!!!!


You poor dear.  Happy birthday.  But how sad that you write to me on this day that should be all abou tyou!  All I can say is that you are not alone at all.  I have often asked myself if my husband loves me.  And I believe that he does.  Perhaps the issue is that he does not love himself?  I don't know.  Why does anyone who has a disease or medical condition of any kind decide to not take care of themselves?  Diabetes is a little harder because it is every day, all day long. It is controlling and limiting what you eat and when you eat, and dealing with so much loss of things you used to be able to do/eat.

I am so sorry that your husband is blind.  I know it is in the future for me and I don't know how I will be able to take care of him once he gets to that stage.  How do you do it?  Would you consider starting a blog to write about your experiences?  Tell us how he gets through a day, what you do and what you can't do to help him.  I'm sure there are plenty of blind people out there and their spouses probably write about it, but I think it's different when you know your husband brought this on himself because he didn't take care of his diabetes.  How do you not feel resentful towards him?

I do believe that you can get some element of control over your life.  While I struggled with that for such a long time....at the moment I at least feel I have a bit of control.  I set goals and work towards them.  This winter I am working on finishing painting the inside of the house.  I've recently taught myself how to make candles.  I schedule time with my friends at least once a week and leave the house.  I have 1 day of shopping a week.  I hardly ever buy a thing....but I will walk a mall, go to a thrift store, go to an antique shop, just get out and look at things.    And I blog.  Not just this blog about diabetes, I have one about my art, one about my religious beliefs, and I'm going to start one next year writing reviews of local restaurants.  No, I do not get paid for a thing that I write...I do it just for fun.  Oh, I also am very involved in a huge genealogy project.

So I think having something to do, having goals, being with friends - those are the main things I've done to get control of my life.

And yes, when he crashes, is sick, needs surgery, has a heart attack, has an optical migraine headache where he loses his vision.....I stop what I'm doing and turn into his caregiver.  And I do have to push and struggle to get him to take charge the rest of the time.  Leaving him alone to go spend a week at my mom's or my sister's has been wonderful.  It gets me away and forces him to take over.

So, can you get homecare to come in so you can get a break?  Does he have family that will come in and give you a bit of respite?  Can you get counseling?  Find someone who can help you find ways to get a break from him because you have to keep yourself well, both mentally and physically, in order to care for him.

DW

Finding balance

My sis surprised me with a visit this week.  I think she just sensed I needed her here.  It's been wonderful!  We've been shopping, creating a bit in the studio, watching movies and just enjoying life.  Such a great break!

Now, hubby is always on his best behavior when we have company.  But even my sis made a comment (and she never says a thing) about how snippy he has been this week.  So if she's noticing it, it's really bad. I explained to her that he has been eating like crazy and she said she had noticed that.  We had a lengthy conversation on "why does he do that?" with no answers, of course.  But it was nice to have her here to witness his behavior and attitude.

She went home this morning and I'm hoping for a quiet day.  Planning to spend some more time in the studio being creative.  I think when he had his first minor heart attack (next month will be 3 years ago) I backed off my art.  I had to in order to become a caregiver for him.  I realized this week how much I've missed it.  And I know I have been struggling between finding some balance between getting older and slower, caring for him, not stressing out over him, and having time to design and create.

Yesterday, one of my long distance art pals skyped me.  She made a comment about how long my hair had gotten and I realized just how long it had been since she had seen me.  We probably spent an hour showing each other creative things we were working on.  It felt good.  We used to skype for a whole day at a time, each of us in our studio, creating together long distance.  I realize that I need that.  So I'm going to try harder to find that "balance" that will allow me to do a few things I really want to do.

Perhaps being the wife of a non-compliant diabetic is more about finding balance than anything else.  Letting go of them, knowing they are not going to make the long haul if they don't change.....changing from whatever you were to a full time caregiver.....changing how you accomplish your own tasks as you age and your own body parts start to be less reliable.....but still resolving to be yourself, doing the things you love to do, having your own life.

Wishing you great "balance" this holiday season

DW

Tis the season

for diabetic insanity!!  I mean seriously.....get a grip on the sugar eating!  If you're going to carb-out....test!  I think a diabetic coma is just around the corner most moments!  This guy of mine is eating like he will die in the morning....and he just may well do that!

We stopped at our fav Japanese place today for a little dim sum.  Ok.....he gives new meaning to the word "little"  3 huge stemmed pork buns, 12 small (variety) fish dumplings, 2 egg rolls....and 5 hours later, he is eating again??? No, I'm not cooking for him - he's doing his own!   He is truly carb loading which would be appropriate if he were running a 10K tomorrow.  But he's not!

So here's the problem. He has severe diarrhea.  Liquid blowouts.  I know - it is gross.  But I'm trying to be honest about his symptoms and problems.  He used to wear pajama bottoms to bed and recently started wearing briefs at night. I thought it curious.  Then discovered he has been having accidents nightly.  So more for me to clean up in the laundry. I know he does not want to go back to depends.....but he may have to.

And why won't he go to the doctor and at least see if there's anything that can be done?  The smells are worse and worse. Glade works much better than Febreeze.  In case you need to know.

So with all the extra sugar and carbs....I think we're in for a true roller coaster ride this season.  I wish there was a button I could push to make it go away, but I sort of think it's just going to get worse.

I have declined every holiday invitation in an attempt to limit sugar.  We have nothing in this house.  And my next step is to be too tired to go out to eat.  Trust me, he will go without me!

Hope we all survive the next 2 weeks!

DW

Staycation

Hubby is officially on vacation.  But it's a working vacation.  Only difference is he shut off the alarm. But he forgot that the dogs still wake us up. LOL!!!

Things are going calmly for the moment.  I always tend to brace myself for a storm when it gets calm.  It's that roller coaster thing.  You never get used to it, but I am trying to prepare for it a little more these days.

He's still fixing himself an egg, bacon muffin every morning.  Triglycerides over 1800.  Yumm!!!  I have to laugh or I would cry.

A1c at 10.1 and he's still eating candy and cookies.  Probably more so than ever before.  Don't even know how high is carb count is every day.

But tis the season to be jolly, to eat way too much, and he has delved into it like there's no tomorrow.

I'm back to crafting and creating and losing myself to the artistic process.  Think I like it because I can forget everything else!  I have a board meeting tomorrow and a genealogy meeting on Sunday.  Meeting an art pal in the morning.  Going to be a fun weekend! Life is good at the moment!

DW

Holiday horror-days

ha ha!  My new title for the month of December!  Not just the sugar highs from eating too much sweet stuff, but the stress of families.  Totals up to horror-days!  LOL!!!

So, his kids and grandkids have all agreed to come here on the 24th.  That eliminates any possibility of him going to visit his parents until next year.  Kids and I have worked out everything and I think it will be great with limited stress.

But he says,"they won't stay more than half an hour"

I said, "no, they are coming for 4 hours.  Buffet style lunch, then open presents, then craft time with kids"

He says, "we'll see if they stay"

But he's right.  Usually the open gifts and leave.  So he has reason to say what he did.

Sad that I have to plan an actual agenda to keep them around.  But I am.

Now to find craft projects for the little ones.

We had a busy weekend with all this.  My youngest sister, her boyfriend and her best friend from 1000 miles away were all here.  I had such a good time. It's always good to reconnect with childhood friends.

And hubby is always on his best behavior when company is here.

Things are going well at the moment. Not withstanding that his glucose is still over 200 every time he tests.

I'm trying to just take it one day at a time....keep carbs in him to keep the lows away, and keepthe conversations pleasant.  It's a full time job!

DW

PS.  Thanks for your compliments about me starting this blog.  I don't think it was courage near as much as it was survival.  I know that writing down your thoughts and feelings is one of the best forms of therapy.  Meeting each of you is just the icing on the cake!

Another DW added a comment

Ro ro wrote:
Thank you for this blog. I just stumbled on it. A lot of people don't realize all the complications that come with diabetes. They just think it's a high low sugar thing and ur is sooooo much more. As the wife if a diabetic myself I totally understand what you are going through. Thank you so much for sharing, now I know that I am not alone. It can get lonely sometimes cause the diabetes affects their memory so constantly arguing or repeating the same things. Erratic sleep patterns and bathroom patterns, don't take his meds like he should(it's a fight), and it always seems like they don't care about their health or yours. it takes a toll on you being a caretaker. So sorry for going on. Just wanted to say thank you. Crying tears of relief cause I thought I was alone.

Know that you are not alone!  Just scroll down the right side of my blog to find other spouses of diabetics who are blogging as well.  I agree, it's nice to know we're not alone.

I was researching last night to find out if there are any professionals who understand any of this.  They just focus so hard on the diabetic....but not on the caregivers.  Truly sad.

My hubby was much better yesterday.  But today, he is back horribly depressed.  Yelling at me.  Upset with the world.  His brother called and told him they were at his parents, cleaning out, having a garage sale, trying to talk the parents into moving somewhere else.  So nice that he let us know ahead of time - they've been there a week.  Put my poor hubby in tears.  He's back to that "no one loves me" depressed state that he goes through so often.

I do feel sorry for him.  My heart just breaks.  But I think his brother's heart might be in the right place.  He's younger and he knows what my hubby has been through in the past 2 years and I think he's just trying to take care of things and not involve hubby.  And I truly love him and appreciate what he's doing.

But hubby sees it as being left out, not consulted, that his brother is trying to "take over".  Even though I told him I thought his brother was doing him a huge favor, he doesn't see it that way at all and now thinks I'm against him.  I just can't win!

So Roro, yes, it is so lonely at times.  It's so impossibly hard.  Today I think I just cannot live one more day with his depression.  But yesterday, he was his happy self.  I know there are no answers.  I know this hubby taking care of himself.  Yesterday, I caught him sneaking a half a raspberry cobbler!!!  Now, he knows better than that!  And there are those who would say that if I truly love him, I will not even allow anything sweet in the house.  But I have to ask why should I give up food that I like?

And now I'm right back to the professionals.  They all seem to say that the spouse should change her diet for him, support him, love him.  I do love him, I do support him, but I am not going to change who I am just because he has diabetes. And that's the part no one seems to really "get".

I think tonight I'm just in a mood!  LOL!!!  Brought on by his depression, I'm sure.  How on earth does a person keep their chin up when the other half of them is about 30 feet under?

DW

Impossible

He did not eat last night - nauseated.

He did not sleep, went from hot flashes to chills to sweats.

Today he has a migraine headache, a stiff neck, entire body pain,  is having chills at the moment and said the back of his head and neck feel like they are going to explode.

"you could be having an aneurism, or scar tissue in your back could have dislodged.  do you want to call your doctor?"

No, I just want to sit here - his reply

I said, "do you want me to call your doctor or sent him and email?"

No, just let me sit here.


Impossible.  He expects me to just let him sit there.

OK, I am going to just sit here with him.

For an hour.  If it's still this bad in an hour, I'll start to push.

On the other hand, should I push him to call the doctor?

Just a completely impossible situation.

Update on spinal stenosis surgery

Because Lilly was asking, I thought I'd post an update on hubby's surgery in February.

You know, I think the surgery really did help the pain he was having in his lower back.  It has taken forever for him to heal.  There are huge long scars running down the front and back center of his body.  But they are healing nicely, now that it's been 9 months.  The wound that is still healing is the one on his ankle where they took the vein out for his open heart surgery in March 2010!

When they fuse the vertebrae, there is limited or no movement in those areas.  So other joints have to work harder to compensate for what doesn't move.  We were told this.  It was all explained quite clearly by the surgeon and I was present at all of those meetings and remember the conversations.  Hubby doesn't remember them.

His lower back was fused, so of course, 4 months after the surgeries, his upper back started hurting.  As did both of his hips.  But now, one of his hips is so painful that he's back to not moving.  Which means he is putting on weight.  He's probably around 280 pounds at this point.  So this weight does not help with the joints hurting either, but because he hurts, he won't move....and he just eats and put on more weight.

Was it worth it?

Absolutely not.  But then he is "special" in that all of his internal organs shut down and he needed multiple dialysis treatments to get his kidneys to function again.

Does he think it was worth it?  He said that considering what he went through and his current level of pain - probably not. But we both agreed that when you are in the moment and desperate for pain relief, you do what you think is best not really thinking that there's going to be more/different pain down the line.  I hope we have both learned that lesson at this point.

If I were to compare him to a year ago, I'd say he's worse off.  He doesn't have the back pain, but he has worse hip and upper back pain (2 locations instead of 1).   He is no more mobile than he was a year ago, but this extra year of not moving has put more weight on his body.  His A1c is higher than it's ever been.  His determination to avoid doctors is greater.  And because he's still not mobile, his depression has increased.

Would he do it again?  At this point he is saying "no".  I asked him if he wanted to start the process of getting his hips replaced and he said no - and it was rather adamant!  LOL!!!   But I have to wonder as time goes on, will he change his mind?

Of course - neither of us are going to make a decision right now.  But the less he does or is able to do, the more it all falls on me and I'm afraid it's going to wear me out over time. There's only so much one can do - especially when they become a full time caregiver for another.

But now worries - I've slept good the last 2 nights and today I'm off to work in the garage - taking advantage of a warmer day weatherwise!!!

DW

It's a hard-knock life.....

Remember the song from Annie?  Think it's my theme today!  I'm looking for the sun to come out and trying to find the will to sing!

When he went in for open heart surgery last year, he gave me all the passwords to his accounts, so I can go in and look at his health insurance.  It's a pretty cool system.  The doctor's leave messages and the line is in bold until you open it. When opened, the bold goes away, so I can see when he reads notes from his doctors.  I never open them first.  But after those last labs, he got messages from his endo and his cardiologist.  He's read them - that's good.  He did not respond to them - that's bad.  The endo asked him to email in his glucose levels and again, I can see the notes he sends back to his doctors.

I also know that I cannot nag him to do anything.  He has made the choice to move forward ignoring his A1c as evidenced by the 2 pound bag of Reeses pieces that he has eaten this week, the pumpkin pie he bought at the store and has dived into, and the apple crisp he gobbled down last night.  He just has no intention whatsoever of getting his glucose under control.

Both emails - the doctors said they have been trying to reach him by phone with no response.  And I know there are many calls that come in where he doesn't answer his cell phone - but he makes me think it's someone at work that he just doesn't want to talk with at that moment.  HA!  It's a doctor that he doesn't want to talk with!!!

He bounces from being extremely quiet (depression) to being horribly angry (low sugar) to just sleeping non-stop.  My life just keeps moving forward.  This morning I was up sweeping and shampooing carpets.  Next I need to go do some work in the garage.  He's already upset that I'm making "noise" (he's in bed with noise-buster headsets on, his CPap running, and an eye mask on.  Not sure how he can hear anything!  LOL!!!  But I know, it's just his sugars out of whack.

And if they go low, imagine how high they must go to have an average of 243?  WOW!!!

Just another day in the life of a diabetic spouse (when the hubby is non-compliant)
DS

What is he thinking?

Today at lunch, he said that he is going to call his parents this evening and see if they will consider moving here.  What the heck???

They are 78 years old.  With more physical problems that I can begin to list.  His dad is a diabetic.  His mom is blind in one eye....and I KNOW they need help.  But he is not even able to take care of himself.....why does he want them to move here???

I know he feels guilty about not seeing them.  It's a 15 hour drive to their house.  Far away enough that this is a different climate and altitude from what they are used to.

They absolutely hate me beyond words....for a multitude of reasons.....the main one being that I won't move to where they live!

This may be a ploy to keep from selling this house and moving 3 hours from here to help take care of my mom.  If I tell him he can't move his parents here, then he can refuse to move closer to my mom.  So, I suggested that we buy a duplex close to my mom and move his parents into the other half.  Well....that would never work as it's too far from his grandkids.

The grandkids that he sees twice a year!

He is absolutely not thinking this one through.  I'm praying that his parents tell him they won't move.  If they agree, it will be the end of this marriage for sure.   I have visions of "Everybody Loves Raymond" if they agree to move!  LOLOL!!!

I suppose it could be a good thing.  If they agree to move here, then I will just up and move to where my mom lives using the same excuse....it's time I take care of her.  She's 3 years older than his parents and deserves our help much more than they do.  If he won't move all of us to her town....I see no reason to stay put.

But I'm sure he didn't hear any of that in our conversation today!  So all I can do is pray they tell him "no".

I even asked him what would happen if he took a turn for the worse and couldn't help them.  He said it would be no worse for them than where they are now.  Really?  They have lived in their home for over 40 years and he wants to uproot them, move them all this distance, and thinks it will be no worse for them???

Proof he's not really thinking about anyone except himself at this point.

DW - exhausted

He got his labs yesterday.....no surprise - A1c is 10.1

CK is 370
Cholesterol is 192
Triglycerides are 1438
HDL is 21
LDL is 171


But an A1c of 10.1???  I'm positive that's what's causing the horrid smells.  Ketoacidosis?  The beginnings of it?  I am just hoping that his primary doc will see these labs and call him in.  Or that the endo will see them.  I'm really thinking a psychiatrist needs to see them!  Why is he doing this to himself?  A death wish?  I know he is in denial....but how can you deny the numbers?

Well, I do know.  He has always said that "9.0 is high for me".  He doesn't ever look at what the "charts" say is high.....so he thinks and A1c of 7.0 is OK for him.  Well, at the moment, I'd be delighted with a 7.0.

No wonder he is so tired and sleeping so much - his poor body is trying to work around such high glucose.

And let's not even talk about insulin.  Remember, he's on the 5x concentrated dose and at the highest dose he's ever been on that.

I'm going to go into denial for today and go be creative.  I don't want to deal with anything.

DW

And still

He won't get labs

He won't call his doc

He still has diarrhea

He still has that rancid acidic smell

I'm going to visit my mom the rest of the week.

I am getting sick to my stomach from the smells

Glade can only cover so much

Dw

I'm so sleep deprived

Awake at 2 am this morning as he was up sick.

Awake at 3:30 am yesterday morning as he was up sick.

It's been a repeat every day this past week.

And he is refusing to go get labs done.  He won't call his doctor. He is sick to his stomach, diarrhea (and I'm so tired of cleaning toilets!) and nothing sounds good to eat.  Except potato chips.  :o)

Pretty certain the neuropathy has found it's way to his intestines.  But of course since he won't go to the doc, we don't know.

I really try to be supportive.  It's so hard.

I really try to show compassion.  But when he refuses to take care of himself and now he refuses to call the doctor, it's even harder.

And I know I'm just exhausted.  I try to catch little naps during the day when I can.  But it's not the same.    I sleep more on the sofa than I do in my bed.

And my own pain has returned.  I'm sure it's because I'm not getting enough sleep.  I am trying to stay as active as I can, but I hurt so bad.  Today I managed to prune the apple tree, cut numerous limbs off a peach tree and oak tree.  Cut back all the raspberries and cleaned out one flower bed.  But there is just so much more to do and I have to wonder how much longer I'll be able to do all this.

I find myself praying for a good night's sleep and no pain.  It's what I need more than anything.

DW

Comment on comments

Thought I should let my readers know that if you post a comment that contains a link to any kind of product, research group - anything wanting money, I will not approve the comment.   I'm sorry, but this is not about money and I don't feel right about assisting you in making money.

To the last comment - why would you even think my husband would get his hip replaced?  Obviously you have not read much of this blog and do not comprehend that he has decided against any future operations for any reason.  We will call hospice instead.  His choice.  But after what he went through in February, I do not blame him whatsoever.

I'm actually starting to wonder if his current intestinal problem is related to the surgery.  They did take his stomach, liver, intestines completely out of his body, then put them back in.  He had an ileus that did not want to heal.  I'm wondering if all those complications have lead him to where he is today.  He had a bowl of vegetable soup and passed gas all night long.  Non-stop.  It was so bad that I was sick to my stomach this morning from the smells.

He has given up all milk products because of this.  Then he gave up bread.  Soup should not cause this.  Bread should not cause this.  I asked him this morning to call his doctor because I know this is not normal and it's been going on for at least 3 months.  He did not call.  Tonight he had a steak and if he is awake all night again, I'm going to really push for a doctor's visit.

I also wonder if it could be neuropathy in his intestines.  His glucose is still running in the upper 200s.

It's interesting to keep a diary like this on the decline of body functions due to uncontrolled diabetes.  I wonder if anyone else has ever done this for their spouse.  It's not easy.  Sometimes I get so used to what' s going on that I don't think it's worth noting.  Other days there's so much going on I don't have the energy to write it down.  I apologize for the grossness of some of what I write, but it is reality.

We are now to the point where finding something that he thinks he can eat is getting rather difficult.  He has quit bread, dairy, most tomato based foods and a few other things that he thinks has made him have gas.  But he still eats sweets and potato chips by the bag.  Go figure.

DW

How much stress can one take?

I often wonder. My hubby has had such a stressful week at work.  In a nutshell, it started last Saturday night when one of his employee's spouses called here at home.   I can't go into details, but in the 12 years I have been with this man, I can honestly say he has been more meetings, dealt with more divisions, talked more on the phone that I have ever seen him do in a week.  I literally thought on one morning that I'd find him dead from stress.....and he is dealing with it all fairly well - it's just the volume that I'm concerned with.

Needless to say it's been a difficult week and I've been walking on pins and needles all week long, trying not to do or say anything that might add to his level of stress.  But I also think this is what brought on the last blow-out, his stress.  So we did sit down and talk about that and it's been a much calmer week.

I worry that his adrenaline levels have been sky high all week long.  I don't believe he has tested his glucose at all.  He ate a huge pan of cinnamon rolls that he picked up at the grocery - one of those 9x13 aluminum trays.  Last night he ordered bread pudding at the restaurant after eating a huge platter of ribs, pulled pork, potatoes and cole slaw.  I know he is stress eating.

So I have to wonder how much one person can take?  I wish I could make it go away, but I can't.  I'm praying that the worst of it is over, but I don't think it is.  I think this is the week of the "car wreck" and next week will be like day 2 - when the pain really hits you.

I've managed to paint a couple more walls this week, so making good progress on getting this house painted.  More therapy in a paint brush than I ever knew!  Plus I made huge strides in a genealogy project and managed to fire a perfect kiln load of glass pendants.  Here's hoping next week is a good one!

Another blowout day

I'm getting numb to these rages.  So I think that's an improvement.  Today, he exploded over the dogs.  Stupid stuff.  I assume he was low, but who knows - he's back to not testing.  It's been awhile since he's gotten this upset over nothing at all, but I need to post so that I have a record.  He truly needs to go to the doctor as the diarrhea has been non stop for nearly a month now, maybe longer.  Last night he was feeling sick to his stomach.  Could be symptoms that his kidney function is declining again.

Tomorrow I will get back to painting the inside of the house after about 2 months of distractions.  I love how clean it looks when there's a fresh coat of paint on the walls.  Plus, it takes my mind off everything else.

DW

Can you "catch" depression?

"Waiting for life" wrote:


I knew I could not be alone with this..although the last post was over a year ago. My husband was diagnosed type 2 12 years ago. Probably had it for 18 months undiagnosed based on the jerk he all of a sudden turned into. I had about three years of normality before that. i cannot now remember how I felt for that person,he rarely shows up that way. We are finally living somewhere where the drs are better; but it seems too little,too late. i did not put my foot down 10 years ago(well, i tried,, but he knows it all..stop nagging,yada yada). Now his neuropathy has him in total pain, just been diagnosed with sleep apnea, and we are trying to figure out how to pay for the omnipod(he is unwilling to mess with tubing). He has a sixth nerve palsy(stroke of the eye) that will supposedly cure itself 3 mmonths-1 year. I think the worst part is the depression that he refuses he has. It is catching..I left one time to try to save myself, but only moved a few miles away and got sucked back in when the economy tanked. Had devoted myself to taking care of him and found myself unmarketable. Am thankful every day that we were somehow unable to have children-would hate to have them subjected to this. I stay for my dogs and because the whole situation has isolated me so much that i would have no support system to try it on my own. lately he has threatened to drive his car off a cliff and make it look like an accident; i say nothing. I do not see the dr myself(except gyn). It is all about his health;quite frankly I am scared, cause they always find something wrong. People that do not know a diabetic are useless to talk to about it. They ask questions like how is he feeling? how do i answer that? Noone asks how am I feeling? I am just trying to hold on to myself so there will be some me left to go on after. My worst fear is that he will continue to live forever and I will be taking care of a blind amputee with alzheimers ( and of course, diabetes)

WOW! I had never stopped to ask the question....can I "catch" depression from him?  But you know what, I think you can - to and extent.  I think the nature of living with another person who is always in a depression can bring you down.  I have learned how to fight it and refuse to allow myself to sink into that hole with him.....but I didn't always do that.  I would find myself being so "sad" when he was "sad".  I turned quiet when he got quiet.....I think it's the nature of being married - you do things together.

When he was diagnosed with depression, I realized what had been happening to me and snapped out of it.  How?  I found something else to do with my life to keep me busy, I set goals for myself, and I started working at helping other people outside of our family circle.  It worked!

Over the years, I have turned to art, genealogy, history....groups that involve these topics.  Once you join and become active in a group (serve as an officer or volunteer on a committee) you meet other people who have a similar interest.....and these groups are completely outside the world of diabetes.  It's been refreshing and inspiring!

Yesterday, I spent the entire day visiting with an 81 year old woman, helping her seek down her family tree.  She was thrilled with what we found and we set up another date for next week to do some more research.

I've also started a huge genealogy project that may well lead to writing a book about the project.  I find that the more I delve into something like this the less his diabetes interferes with my life.

BUT....on the other hand......this ongoing problem he is having with his digestive system is keeping me up at night.  Seems like no matter what he eats, he has explosive diarrhea all the time.  And the smell is horrible.  I no longer invite anyone to come here. I go "there" wherever it is.  I haven't slept all night since I got home because of the sounds and smells.  I asked him last night if he would go to the doctor and he said, "I'm thinking about it."

Sigh.

Today, I am rewording our wills - it's been 10 years and it's time to just update them.   Reading though the medical power of attorney, I see that we need to make some changes and will get that done.  I'm hoping that each of you has an updated will in place including a DNR, medical power of attorney, financial power of attorney - everything in place in case it's needed.

DW

I never check my emails

for this account!  Just found this one:

Hello my name is Elizabeth,

 

     I was looking for help on the internet and found you.  My husband is only 47 years old and is also a very bad diabetic.  He gets so angry and just starts yelling about stupid stuff.  He hates everything and everybody.  He cannot swallow a pill so he will rarely take his meds.  His a1c is 11.3 Triglicrides are 953 and the protein in his kidneys is 3133.  He has a long family history of the same health issues.  The more I try to talk to him the worse it gets.  I love my husband very much and we will be married 23 years in November, but I don't know if I can keep this up.  I am very depressed all the time because I never know what kind of mood he is going to be in.  His father passed away when he was about 23.  He thinks because of this that he also will die in his 40's and just doesn't seem to care what anyone says to him.  How do you deal with this?  I have been for about 7 years not but it is not getting any better.  I told him today if he doesn't start doing what the doctor says I am going to get a mental hygiene warrant on him.  If he would at least just try I could feel bad for him but as of right now I am just angry with him for not even trying.  Please give me some advice.

 

Sincerly,

Elizabeth

First off, I don't give advice.  I just tell you what I think, and what my own personal experiences have been.  But I can tell you that an a1c of 11.3 is too high and he needs to se a doctor.  Like now!!!  

I can also tell you that I don't hesitate to schedule an appointment with a mental health provider when things get really bad around here.  It always helps to talk with someone else and often, they do have some good ideas.  Sometimes you have to ask for suggestions.  Sometimes you have to switch providers.  Sometimes you get really bad ones....but you do have an option to find someone else.

Most likely, you are, like me, going through the grief process over and over and over.  And that's where the anger comes in - it's a natural step in the process and we have to go through it.  Problem is that with each loss of function, both my husband and I have to grieve that loss. At this point it seems never ending.

How do I deal with my hubby and the fact that he doesn't even try?  Well, mostly, just day by day.  He has the right to make that choice because he is an adult and I can't change him.  I had to make a choice to accept his decision or not, to stay with him or not.  Most important I think, I had to make a decision to get back to living my own life, create goals, find a hobby, keep active and busy.  And while I know that he would prefer that I stick tohis side like glue....I've learned that I can't be here every second of every day.  I have to get out and live my own life.

Good luck,

DW

Loved the respite

Back home and all is as well as can be.  Was so nice to get away for a whole week - visiting with my siters.  Hubby came Thursday afternoon and we were all together to celebrate my birthday.  Laughed all evening long!  We both came home on Friday.  My sis has a single queen bed so we tried to sleep together, but his restless leg syndrome is still just as bad as it ever was so I ended up on the sofa.  What would we do without sofas?  LOL!

I'm getting better, stronger - my pain is going away.  I'm moving better and I really think it's because I'm letting go, getting away, taking breaks, taking care of myself.  And he can tell a difference.  When I can move, I can do more for him.  And when I can't move, he has to do more for himself...so I think it's helping him as well.

We have family coming from out of state next weekend and after that..I'm hoping life will settle down for the winter.

His glucose is still running at 300 way too often.  He has way too many digestive problems which I'm pretty sure is simply the nerve endings dying off.  Almost daily he adds something else to the list of things he can't eat.    The gaseous odors are still almost unbearable.  Diet modification hasn't really helped with that.  I assume it is all just part of the process of uncontrolled diabetes eating away at his body.

And yes, that is truly sad.  But he has made a choice to simply do what he wants rather than try and take care of himself.  So life has to go on as normal as it can as long as it can.  And truly, overall, we are doing fine at the moment.

I've had my week off and have much renewed strength.  Life is good!
DW

Such a sad comment from someone so young

Jeannette wrote:

I googled "diabetic yelling" and found this page. I'm sitting here shaking and crying because my stepdad is currently recovering from one of these low-blood-sugar, yelling-at-the-top-of-his-lungs sessions. I can't handle it when he gets like this. Just for a bit of a back story, I hate the man's guts. He has always had a temper and been abusive even when he wasn't low. The screaming sessions he has when he's low are the worst because he doesn't remember anything, like you said. He acts like nothing happened, and we're supposed to do the same, even though the screaming sessions open old wounds. I'm getting married next year and moving out immediately afterward. I'd move out sooner if I could.

How terribly sad that you are living like this.  Trust me, I know.  Here's the question I've always asked myself....what keeps "him" from limiting it to verbal abuse?  At what moment will it turn physical and will that be too late for me to leave?  Will I end up getting hurt?  Trust me, I hate pain.  I can handle the verbal stuff but if my husband ever turned physically violent - I would leave.

And that's the hardest part as no one know when it might turn physical.  How low do they have to go?  How angry and frustrated before the verbal turns physical?  I don't have an answer - no one does.  But it is something each of us should think about and prepare for.

There are temporary safe houses.  There is counseling. When you think there is nowhere to go....there always is someplace safer than where you are right now.

Verbal abuse can really take a hard blow to a person's self esteem.  I'm obviously older, have survived enough in my life that I have become a powerfully strong woman and words are not going to hurt me.  They bother me - but don't hurt me.  Had any of this happened when I was young....I'm not sure I'd be the woman I am today.  I had nothing but positive support and feedback when I was your age.  And that can make a huge difference as to the path you choose later on in your life.  Without self esteem, we often make poor choices because we make choices trying to make others say good things to us, stop verbally abusing us, to get out of a situation.....it's that old fight or flight thing.  If all you ever hear are negative things about you, then you start thinking negative things about yourself.

At my age, I ignore his outbursts.  I walk away.  I go to Walmart and walk, or to the park and walk.  Sometimes I leave for half an hour, other times I leave for 2 hours or more.  Sometimes he calls and asks me to come back - other days I don't hear from him and wonder if he's gone into a coma.  But I walk away.  If there is no one for him to rage at - I assume the raging stops!  And while I am his caregiver....I have to take care of me first and that really does mean that I have to walk out if the raging starts.

I find it interesting that I now have to "time" conversations with him.  Is he low?  Has he just eaten?  Is he tired?  I had an issue this week that I needed to discuss with him and I didn't want to do it when he was low as I needed him to remember the conversation.  Sad, but it really has gotten to this point.  And I'm still not sure it was good timing as he's not testing again.  But I had the conversation in a restaurant in a public place and there was no rage.  He got pissed at what I was saying and I knew exactly when to stop the discussion to prevent an outburst.  Only time will tell if he "heard" me or not.  But there was no rage, so we are making progress.

Counseling is so expensive, but it might do 2 things for you and I would ask myself these questions:

1.  Am I getting married to get out of this house.  In any way, shape or form?  Is it even 1% of the reason you are getting married?

2.  If you hate this man so much and he is verbally abusing you, why are you still living there?

3.  What can you do to proactively protect yourself in the event the situation turned physical?

Now, remember, I'm not a therapist.....but I believe a good counselor should be able to give you direction and assistance on the first visit.  If not, find someone else.  And I also know that when you have been verbally beaten to a pulp, it's the hardest, most difficult thing on earth to try and seek help.  I've been there.

Here's wishing you the best. I' will keep you in my prayers.

DW

Respite care for the caregiver

I didn't get to go camping as my brother-in-law got sick.  But I had a blast.  Mom and I picked up pizzas and went knocking on doors and had a party with some of the other residents in her retirement home.  One of the ladies said, "this is the most fun I've ever had on a Friday night!"

The next night, we made about 50 cards for them to send to their friends.

Then I took a very long drive, about 5 hours, and went exploring areas where I used to camp in another lifetime.  Great fun going back to old haunts.  Ended up at my sister's and decided to stay there a few days.

Yes, my hubby missed me something awful.  I think he is rather afraid to be home alone.  But I tell you, these respite breaks are doing me a world of good!  I used to think I had to stay by his side 24/7.  After this last surgery....I decided I simply couldn't do it any more.  And I think I am so much better for this decision. I am getting out, doing things I really want to do, having a great time.

And I know he is jealous.  He doesn't feel like getting out.  I don't feel like sitting home.  So for now, this is the solution - I just go alone.

My sis and I had so much fun shopping and gabbing.  It is such good therapy to get completely and totally away from diabetes.  And I think that's what caregiver respite is all about - to get so far away that you completely get it all out of your mind, get refreshed and refueled....and when you come home, you are ready to go full steam ahead.

I'm going away again the last week or so this month.  It's my birthday and I've decided to indulge in a full week at my sister's.  We are going to go walking, hiking, trekking, exploring and might even go camping if everyone can stay well.

In the meantime, hubby is stable.  The pain in his hips is still there as in his upper back.  He doesn't do much, just goes from his chair to the sofa and back.  Watching way too much TV.  I feel so bad for him, but at the same time, I am learning to let go, that these are his decisions, his choices, not mine.

If you provide care to someone who is ill.....give yourself adequate time off.  Get far enough away that you can completely forget your normal life.  Do something that is so not the norm.  Enjoy your own family and friends.  And if it's only an hour, just do it.  But I'm learning that I need 4 - 7 days away to really come back ready to tackle the daily caregiving.  Because afterall, if you don't take care of you, who will take care of them when you get sick?

DW

Home alone!

Well, for a little bit. He got called in to jury duty.  He never leaves home. He works from home. So I am guaranteed at least 3 hours alone at home this morning. LOL!

I don't know what to do first!  I think I might take a long hot bath. Or play the piano and sing my heart out!

This week's update:

I cannot believe how time flies. He is still having smelly farts. Long nights of diarrhea. I have learned to sleep through most of it. I have decided that unconsciousness is a good state to be in! :o)

His hips are so bad now that he is limping and hobbling when he walks.  He agreed that when it gets bad enough, he will most like call the surgeon.  I gave him my blessing and reminded him that I would not be in attendance.  I think he doesn't really believe me.

We are finding more and more things he cannot eat. I think this is a normal process as the neuropathy of the intestines increases.  Those nerve endings are being killed off little by little, so less that he is able to digest.

Sugar still running around 300. BP still high even with 4 meds.  Still making adjustments. Will it ever end?

We had a very quiet Labor Day weekend. He laid on the sofa and watched movies the entire time. I kept myself busy with ebay and sorting/cleaning out. I enjoy quiet weekends. I plan to enjoy today, no matter how long my respite lasts!

I will head to mom's, then camping, then time with my sister later this week. Will be great!

DW