Saturday, January 09, 2010

The Wheelchair discussion

First, Mary wrote:
Hi DW,

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

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

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

You shared a quote back in Nov. 2009: "You need to find a goal in your life. That can be to get a job, to get a career, to volunteer, to have a hobby, to work for a cause. The goal is to get you something else to focus on. Something that you can devote your attention to. That way the ['diabetic's problems'] isn't the only thing in your life."

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

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

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

Once again, thank you for your blog.


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

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

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

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

We need a ramp up our front steps.

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

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

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

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


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

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

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

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

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

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


Tuesday, January 05, 2010

A frightening post about the reality of this disease

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

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

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

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

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

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

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

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

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

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

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


Sad comment from a spouse so young

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

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

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

Don't expect her to be honest with you.

Don't expect her to take her meds.

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

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

And I believe that is what he honestly thinks.

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

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