Another break from "real" life!

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

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

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

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

DW

New foot problems

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

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

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

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

DW

The amazing body

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

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

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

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

DW

A new day -

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

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

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

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

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

DW

I'm so sick....

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

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

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

denial vs escape

Anonymous wrote:

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

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

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

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

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

Not much difference at all.

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

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

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

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

I thought we were going to die!

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

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

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

Vacation time

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

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

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

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

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

Diabetic parents of diabetic children

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

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


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

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

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

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

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

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

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

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

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

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

Where are all the resources for spouses?

I see loads of stuff for parents of kids with diabetes. I see loads of stuff to support families of compliant diabetics. But where are the helps, the supports, the suggestions, ideas for spouses and adult children of non-compliant diabetics?

I have read thousands of webistes that tell you what to do to get better if you are the diabetic. But nothing that tells you how to live with a person who doesn't follow those suggestions.

I've read all the books written on this subject (I think) and only one barely touched the subject - and it was written for adult children of non-compliants (don't ask - I wouldn't remember the book!)

I've read so much about how to prevent diabetes as well.

I've also found frightening little about ESRD - from the standpoint of family life once that sets in, caregiver help, etc.

I've read lots of stuff where they tell the family to be supportive of the diabetic person. Tells you to change your own diet to match that of a diabetic, to only stock the foods they will eat in the house,

that all assumes that the diabetic will be compliant. I see no reason to give up chocolate any more. I gave it up for 7 months and he simply went to the store and bought candy and cookies whenever he wanted them and ate them in front of me!

So, where is the support for families of non-compliant diabetics? Anyone found it yet?

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.