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
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I will be writing (emailing) you sometime soon; SO's mom died and we are flying out for the funeral for a few days. Meanwhile, just know that I have checked in here and am thinking of you and your trials.
SueB
Dear DH (and other curious folk: I've included your questions with my answers.
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?
That’s tough to answer…I really didn’t know there was an associated personality impact with diabetes until I read your blog and then started talking with others who live/d with a diabetic. Looking back now (hindsight being 20/20), I can now see that the impatience and irritability were, for the most part, diabetes provoked. Mind you depression and fear do allot to this end also. All I can advise is that remember that man who you fell in love with and speak to him. When I decided that his complaining and venom were too much, I reminded him that I told him that I would stick by him and see him through anything, as long as we did it as a team and he didn't give up…otherwise, I’m gone…I warned him to stop worrying about what he lost and enjoy what was still right in front of him. Adjust to the “new normal” that was our life.
What are the things that happen to him physically before they diagnose him as ESRD? When do they start dialysis? Do you share with anyone else that he is incontinent?
Signs of ESRD: weight gain, pitting edema, metallic smell and taste in their mouth, a salty smell to their skin, frequent and severe leg cramps. Our doctor did a test and his kidney number was very low (like 12% function) and he went into surgery to get a temporary port and to build a fistula the next day. As dialysis progressed, he lost over 80 lbs. the first three months. He was never incontinent, however, I rarely told anyone – even my closest friend of 28 years – of how severe things were. I thought I was protecting his dignity.
How do you tell your own mother that you are doing great when she can read you like a book?
I smiled and change the subject….allot.
I keep thinking nothing else can go wrong, but then it does.
Amen to that. I asked tons of questions….I think the residents and interns at the hospital saw me and ran the other way….there was a note on his chart that I was friendly, smart and took no prisoners.
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?
They go blind because the vessels in the back of their eyes burst and reabsorption of the blood doesn’t happen. Regular eye exams by an ophthalmologist (preferably one with retinopathy experience) can detect problems early and hold off blindness awhile. The procedure may or may not be painless. He left eye hurt so bad – he threw up…the right eye was a breeze. A small decrease in vision happens directly after the procedures, but it holds off total vision loss. The timeframe for him was (he had correctable vision to start with…glasses from an early age) 1992 when we did the first laser procedure until 2003 when he could no longer read and at the end of that year he only listened to TV. My husband was an AV geek, too. All kinds of gadgets and computers. This was a depression trigger for him. We got books and a reading machine from the Library for the Blind. They’re fantastic. We would sit and “listen” to a good book together.
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?
I said no when he pushed me too far…I need rest, I have to go to work, etc. I always made certain his sugar levels were good before I wouldn’t wait on him hand and foot. I gave him choices (of 2 or 3) for snacks or whatever and once he made the choice, we were done. I lucked out his vision was too low when he license was up for renewal and I said if he could pass an eye exam, I would send in the money. I also reminded him that our only child would be in the car with us. That was that…I was officially the chauffeur.
I loved my husband very much….he could be a real handful, even before things got complicated. But, I never let him play the pity card, I yelled and swore back when he yelled and swore and then would remind him that we stood in front of God and everyone and said, “for better, for worse; in sickness and in health” so keep your promises and be my husband.
I will check back for more questions. Anything I can remember, I will share.
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