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At a Distance

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02 January 2006

At a Distance

I rarely write personal accounts on my blog, but I will today.

Christmas 2005 was uneventful, and yet (aside from my gregarious and absolutely yummy 5 year old daughter’s wide-eyed grins and antics!) -- difficult. I spent Christmas with a Type 2 relative who stayed here in London as a guest in our home for the holiday.

It was difficult because I could see how diabetes is killing him. I read the prescription on his insulin vials which he kept in my egg container compartment of the fridge Lente insulin twice a day – 30 units in the morning and 10 units at night. In fairness to him, it is not an easy regiment to follow and is rife with hypos if mealtimes are not kept on routine. Obviously, this is even trickier if travelling abroad. I asked him about other treatment options. We had a short discussion on how his health insurance in the States was on a formulary system which would only give him other treatment options if he failed on the lente.

All at a distance, I watched his eating and drinking habits. Not good. I saw mood alterations. I watched him having a very difficult time at mobility, as we took short walks around London Parks -- which for a 65 year old man in the Noughties should be a pleasure not a task. I tried to discuss things in an intellectual manner, and also pleaded with his son (my husband) not to leave the Christmas cookies in plain site. My husband responded rather surly by telling me it went against all my own personal philosophies of self-management – ie, to deny and forfeit goodies, thereby treating the diabetic like a child. I agreed, but stashed them away anyway.

I was kept up at night by his wanderings around the house and his use of the bathroom at all hours of the night. I asked his wife, my daughter’s grandmother, what his “number” is. She responded by telling me his numbers were good.
"No,” I said, “not numbers. How is his A1c, his glycosated haemoglobin?”
“Never heard of that one.” she said.
“It should be around 7. Listen, find out what it is, because it is the best indicator of his health status.”

She said OK. But I never heard anything more about it. They went home. My daughter, their grand-daughter – was sad. She won’t see them for awhile. I know she will never forget taking her grand-mother and grand-father to the London Eye; they all watched the world as they loomed around from a rather unique distance. But I wonder how many more visits we will actually have with her grand-father. Triple by-pass surgery, peripheral neuropathy, autonomic neuropathy, and enzyme problems with digestion all make it a very heavy case.

I absolutely failed at helping him. However, it has led me to more closely look at the reasons why people with diabetes fail at self-management and seek isolation. My father-in-law watched me take my blood sugar at every meal. We could have done it together. I didn’t want to ask him where his glucometer was – but maybe I should have.

This personal issue of compliance and why it is such a huge problem for so many people with diabetes is going to be at the core of many of my articles in the future.
On another note, and to follow-up on my post("Who is the Leader of the Sugar Police in NYC") regarding the NYC Department of Health, I received this email:
Dear Elizabeth,
Thank you for for e-mail to the NYC DOHMH. Although the A1C registry has great potential to improve the quality of care and quality of life for people with diabetes in NYC, I recognize your legitimate concerns and will take your comments into consideration as we move forward with the initiative.

Diana K. Berger, MD, MSc
Medical Director
Diabetes Prevention and Control Program
New York City Department of Health and Mental Hygiene dberger@health.nyc.gov
(Tel) 212-676-2157
(Fax) 212-676-2161

2 Lafayette St.,
20th Floor: CN # 46
New York, NY 10007
With the knowledge of NYC’s desire to achieve better healthcare outcomes with difficult diabetes cases and post-visit with my in-laws, now I am not so sure it is such a bad idea after all.

13 Comments:

Anonymous wilson said...

Hi Elizabeth,
I subscribe to a diabetes mailing list which is very busy and predominantly American and stories like that of your father in law are all too frequent. This is usually because of difficulties with Health Insurance, where sometimes (heartbreakingly) people just cannot get access to test strips or even medication because they are poor. There is also a lack of good basic diabetes education in many places (and this applies to the UK too).
Those of us who are lucky enough to be well informed about our condition, living in a country with a National health Service and motivated enough to treat ourselves should be truly grateful.

9:42 PM  
Anonymous wilson said...

Oh . . .
and further to your earlier post which I already commented on rather hastily by calling type 2's "fatties". (Sorry :-)
Y'know when someone asks about your diabetes and they ask if it's "the bad kind"? Or they find out you are on 4 or more shots a day and they are visibly shocked? I'm sure it's happened to us all. But it's understandable for the general public to be ignorant about diabetes. I think it is unforgiveable for a diabetic person to be ignorant about his/her condition.
This is why I am in favour of the NY Health initiative even though it goes against almost everything I believe in about freedom from the state and personal privacy.

9:53 PM  
Anonymous AmyT said...

Ooh, Elizabeth, you hit home with this one. I am, in principle, outraged by NYC's program proposal.

But my father died of the effects of poorly cared-for T2 diabetes DECADES before he should have (before I was diagnosed myself and therefore knew nothing to help him). Now I too feel that maybe some tracking program would/could have made a difference...?

11:39 PM  
Anonymous wilson said...

My father (type 2) died early too, never understanding and never knowing how to take care of his diabetes.
My cousin (type 1) died at the age of 13 (she was 1 month and a day older than me) as a result of diabetes.
I guess this is why I feel it is absolutely vital to understand and aggressively treat this condition.

10:46 AM  
Anonymous Lara said...

Hi, Elizabeth: Great post. Two thoughts:

1. Do you really think the NYC registry program would help folks like your FIL (and there are a lot like him)? I mean, so he gets a letter in the mail saying your last A1C was blah blah blah and you really should meet with a diabetes educator... Would a letter like that even get through to him?

2. Your FIL will be off Lente very soon since Lilly stopped sales of it Dec 31.

Lara

1:33 PM  
Blogger Kerri. said...

Lilly stopped the sale of Lente? This doesn't affect me too much now because I'm using an insulin pump, but I took Lente as a kid. (I think I've taken all the different types of insulin -- I remember being on the pig insulin when I was first diagnosed. And mildy grossed out at the idea, but I digress...) What was the problem? Are they still manufacturing UltraLente?

Good morning, by the way.

3:35 PM  
Blogger Kassie said...

It sounds like he's been set up to fail, with a regimen that encourages running high (because who can keep meals 100% routine?).

You certainly can't fix him over the course of a holiday visit (and I know you know that). My (unsolicited) advice is to be in touch with him one-on-one. Offer support, a 'blood sugar monitoring buddy', offer to share recipes with him or challenge him to a week of walking (or have his granddaughter challenge him). Annoy your MIL by sending recipes and recommending books or offering to answer any diabetes related question she might have.

If none of that is helpful, then you can be pretty sure the NYC registry program won't make a dent, either.

I can pop a marshmallow into my mouth within seconds of reading about diabetes complications. Staying motivated is really tough.

10:27 PM  
Blogger Elizabeth Snouffer said...

I have sent this post off the NYC DoH and Mental Hygiene so perhaps we can keep the dialogue going. I am beginning to feel as though coaching for partners of people with diabetes in the over - 65 years bracket - is one way to make a difference.

Kassie - I loved your comment - about the marshmallow. Our intellectual minds and are emotional states don't often click.

This may be the issue. How can we teach ourselves cause and effect with a silent killer like diabetes?

10:50 PM  
Blogger Kassie said...

This may be the issue. How can we teach ourselves cause and effect with a silent killer like diabetes?

Figure that one out and you'll be rich and famous!

Personally, I can't focus exclusively on the long term. But how I feel day to day is a big motivator - when I pay attention to what my body is saying.

It's pretty easy to tune things out, though, given all the demands on a person today.

3:52 AM  
Blogger Keith said...

Elizabeth:
I think educating relatives, particularly w/type 2 is a long ongoing process. As I type this I have a T2 sister-in-law in WV w/a venus port administering a bag of antibiotics once daily for the next six week in an attempt to save her toes. The bad thing is her late onset T1 husband lays around in the other room taking 200-300 units of Humalog while eating bags of candy all day. They skip meals and then follow them w/huge meals and I could go on. I talk to them about control every time I see them but they don't listen... well, she is starting to, I don't think he ever will.

I think this is all we as 'controlled' diabetics can do. You and I have both had this disease a long time and we're doing well because we are doing things right, but we can't force others to follow ... even loved ones.

9:15 PM  
Blogger Elizabeth Snouffer said...

I completely agree...sometimes people must hit rock-bottom on their own in order to change behavior. Behavior modification is so tricky, but numerous studies have shown that National anti-smoking campaigns and the now negative social stigma attached to smoking has had a positive effect on the decline in numbers.

Is there something to be gained from this? Perhaps diabetes advocacy organizations are being too soft (?)

Thnaks for your post! I hope your family in WV won't suffer too much before they begin to accept.

9:50 PM  
Anonymous Anonymous said...

Elizabeth,

Type 2 diabetes, particularly the kind I got, is very easy to control. My diagnosis fasting sugar was so high (468 mg/dl) that our family physician got very scared for me. Doctors don't usually call up their patients, but he called me up and asked me to see him right away. He ordered me to take diabetes pills right away.

I requested him to give me a week or two to try my own t2d control. Luckily, he agreed on condition that I pass first a stress test.

In less than 2 weeks after passing the stress test, my sugar readings were in the normal range. All I did was exercise. Since then (July 1991) up to now, all I have been doing for diabetes control is to exercise. Instead of doing 2 hours/day which was my routine in the beginning, my daily exercise now has been greatly reduced to 4 sessions/day, 12 minutes/session. Heart-healthy foods are for my overall health and not necessarily a part of my diabetes control.

I have never had any diabetes complications. My only diabetes medication (exercise) has been very safe and very effective that I feel like I am only 30 when actually I am already 70 years old.

Am I a freak or I just got lucky? I don't think so. There is the governor of Arkansas, Gov. Mike Huckabee who claims that his t2d got cured thru exercise. There is an Australian Endocrinologist, Dr. Nic Kormas who encourages his diabetes patients to use exercise instead of diabetes pills and insulin.

Bonny C Damocles

4:18 PM  
Blogger Scott said...

No offense, but the NYC A1C Registry is an absolutely disgusting abuse of government power. While the objectives may be noble, the means used to implement the program are objectionable. For example, the NYC program is supposedly modeled after the Vermont Diabetes Information System (VDIS), but differs in a vital way: patients in Vermont are permitted to have their test results excluded from the registry, NYC patients are not afforded the same basic right. Also, keep in mind that control of the condition must be assessed in the context of a number of factors which will not be considered in the NYC registry. For example, recommendations published in The New England Journal of Medicine and the Journal of the American Medical Association indicate that patients who are suffering from renal (kidney) failure must maintain a much higher A1C than patients without, yet patients on dialysis are going to be flagged as being in "poor control" on the basis of the A1C alone. Affording patients with a basic right to be excluded from the registry (which is different from opting out of receiving communications from the NYC Dept. of Health and Mental Hygiene) would not impose a significant burden on anyone, yet NYC has instead chosen to ignore patients' right to be excluded in the name of "public health". So much for the hippocratic oath that Dr. Berger and Dr. Frieden took in medical school.

8:22 PM  

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