How to help the newly diagnosed and their family
It's just a bit more than two months since my two-year old was dx. I'm stunned by the lack of support I've received from some family and friends. Thank goodness for online support and Tu Diabetes.
To be fair, I think most of my family and friends are simply clueless. And reportedly my husband and I "seem to be doing just fine." My toddler certainly appears to be well; she's a joyful child who often performs her own happy dance. So, I think it's easy to simply treat us as if "no big deal, nothing's wrong, just treat them like everyone else."
But to us that feels like being ignored and unloved. We're really not that great. We're deeply hurting and we could use some nurturing. Make that, A LOT of nurturing.
So I thought maybe we could put together a "TO DO" list that could be handed out to family and friends of those dealing with a new diagnosis.
I'll start -- and my list is a bit more for parents of kids with type 1 -- but ideally this list could be handed to anyone. If it looks good I'll compile it together in one entry. And if someone has already done this, feel free to point out a link.
Here's how you can support someone dealing with a new diagnosis of diabetes :
1) ASK how they are feeling. ASK if they are OK and would like a shoulder to lean on. ASK how you can help. But then also go ahead and do one or more of the following:
2) Send a letter, card or e-mail. Let them know you are thinking about them in this trying time. Bonus if you do this more than once!
3) Give a donation to JDRF or somesuch (even $5 is meaningful) in the name of the person newly diagnosed.
4) Bring over a meal. Maybe ask first if certain foods are now to be avoided, but you can not go wrong with a gorgeous veggie salad topped with grilled chicken.
5) Offer to make a grocery run, a load of laundry, walk the dog or mow the lawn.
6) Ask if there is anything you can read (book or website) that would help you understand more about diabetes. Understanding translates to nurturing!
7) If the newly dx is an adult you're close to; ask what you can do to help with the daily management. How can you help recognize lows and help in that situation? Offer to be an exercise buddy or diet buddy.
8) If the newly dx is a child or toddler then their parents are likely overwhelmed. Nothing would be more helpful and loving to these parents than having another adult trained to care for their child. This is a huge responsibility but would be the greatest gift of all. However, don't be insulted if the parents simply can not trust anyone else to manage their child's diabetes.
9) Don't push miracle cures. Those newly diagnosed are starting their own PHD education in diabetes and will seek out the medical care they need. Trust that they already know more about diabetes than you do, unless you have first-hand experience.
To be fair, I think most of my family and friends are simply clueless. And reportedly my husband and I "seem to be doing just fine." My toddler certainly appears to be well; she's a joyful child who often performs her own happy dance. So, I think it's easy to simply treat us as if "no big deal, nothing's wrong, just treat them like everyone else."
But to us that feels like being ignored and unloved. We're really not that great. We're deeply hurting and we could use some nurturing. Make that, A LOT of nurturing.
So I thought maybe we could put together a "TO DO" list that could be handed out to family and friends of those dealing with a new diagnosis.
I'll start -- and my list is a bit more for parents of kids with type 1 -- but ideally this list could be handed to anyone. If it looks good I'll compile it together in one entry. And if someone has already done this, feel free to point out a link.
Here's how you can support someone dealing with a new diagnosis of diabetes :
1) ASK how they are feeling. ASK if they are OK and would like a shoulder to lean on. ASK how you can help. But then also go ahead and do one or more of the following:
2) Send a letter, card or e-mail. Let them know you are thinking about them in this trying time. Bonus if you do this more than once!
3) Give a donation to JDRF or somesuch (even $5 is meaningful) in the name of the person newly diagnosed.
4) Bring over a meal. Maybe ask first if certain foods are now to be avoided, but you can not go wrong with a gorgeous veggie salad topped with grilled chicken.
5) Offer to make a grocery run, a load of laundry, walk the dog or mow the lawn.
6) Ask if there is anything you can read (book or website) that would help you understand more about diabetes. Understanding translates to nurturing!
7) If the newly dx is an adult you're close to; ask what you can do to help with the daily management. How can you help recognize lows and help in that situation? Offer to be an exercise buddy or diet buddy.
8) If the newly dx is a child or toddler then their parents are likely overwhelmed. Nothing would be more helpful and loving to these parents than having another adult trained to care for their child. This is a huge responsibility but would be the greatest gift of all. However, don't be insulted if the parents simply can not trust anyone else to manage their child's diabetes.
9) Don't push miracle cures. Those newly diagnosed are starting their own PHD education in diabetes and will seek out the medical care they need. Trust that they already know more about diabetes than you do, unless you have first-hand experience.
Replies to This Discussion
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Permalink Reply by Libby on
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Your list seems very comprehensive. I am a newly diagnosed adult and feel overwhelmed at times. My son was diagnosed with severe asthma as a toddler and I think I have some idea of what it is like for parents of Type 1 children. (He is now almost 21 but still on medication- he never "outgrew" it, which was the most frequent response from concerned friends and was not a helpful comment.) I agree that small acts of kindness can really help: I'm a teacher and one of my parents brought me a gift of prepared food after school one day. I almost cried because food prep is one of the things that is really time consuming. And it does help to have people ask how you are feeling/coping and if there is anything they can do. I might phrase #9 more broadly to ask people not to make any treatment/dietary suggestions or theories unless they have direct experience in the same type of diabetes. Most people think their ideas are legitimate alternatives and not "miracle cures" and might therefore feel free to tell you all about them, and urge you to try them.
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Permalink Reply by StellasMom on
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I like your wording for #9 better. And we are getting a lot of questions about when Stella will outgrow her diabetes. When there's is a cure!
I hope you're doing well with your new dx...maybe you could hand this list to some people and it'll help??
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Permalink Reply by Kimberly on -
My main concerns are actually that when I say excuse me and go straight to my purse/desk/whatever and start testing, don't look at me like I'm the rudest person you've ever met. And if I say I need to eat right now, I need to eat right now and we can continue on in a few minutes. I guess it's really more for co-workers - they all know I've got the D but since I don't "look sick", they don't seem to understand there is anything different w/ me. I have gotten this from family members, too.
As for the asking how I"m doing and sending cards, etc., that is nice and thoughtful, but I'm not sure all adults would want people doing that sort of thing. I'm a ferociously independent single woman and that sort of thing would eventually drive me insane. But that's just me. I'm sure parents of type 1 kids are a whole different ballgame than those who are diagnosed as adults.
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Permalink Reply by Chloe on
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I'm sorry if you are not getting the support you need, but I'm glad you found this site. The people here are wonderful.
Your list is very thoughtful and thorough, and it sounds like you have everything pretty well covered. This isn't as polite, but I found a "cheat sheet for family & friends" recently after I was diagnosed. I printed it out just is case I felt I wanted to use it. Here is what it said:
cheat sheet
for family and friends
So someone you love (or like) has just been diagnosed with Type 1 diabetes. To save them explaining it again and again here's a quick rundown.
Type 1 Diabetes IS:
> An autoimmune disease
> The type of diabetes that children most commonly get BUT you can get it at any age
> Chronic - it does not go away as you get older
> Treated with multiple daily injections of insulin
> Often a HUGE lifestyle change and a big deal
> 50% genetic and 50% environmental
> Sometimes a very challenging adjustment and hard to cope with emotionally
Type 1 Diabetes IS NOT:
> caused by anything you ate
> related in any way to obesity
> easy to manage - it's very complex
> strongly genetic - even if a mother has diabetes there's only a 4% chance her child will develop diabetes, if the father has diabetes it's a 7% chance.
> cured by taking insulin
> a sentence to stop living, travelling, playing sport, drinking and having fun (you can still do all those things)
Some Common questions:
Have they got too much sugar or not enough?
Both! A person with Type 1 diabetes produces no insulin. This means they have to inject insulin, and then they have to carefully balance what they eat, how much exercise they do and other factors to keep the amount of sugar in their blood stable. This is very hard. At times, a person will have not enough sugar and URGENTLY need some. At other times they will have too much sugar and not feel too great and need to top up on insulin. It's not easy!
Will they have fits or pass out? What do I do?
If a person's blood sugar drops very low they may lose consciousness. Lie them on their side and call an ambulance.
In most cases, emergencies can be avoided by a treating a hypo quickly BEFORE the blood sugar level drops so low that the person loses consciousness.
Some Common Early Warning Signals of a 'Hypo' include:
> Sweating
> Trembling
> Hunger
> Headache
> Tiredness or Weakness
> Tingling around the lips and mouth
> Difficulty concentrating
> Paleness
With more severe hypoglycaemia, or without treatment, it is possible that the person may progress to more severe symptoms, such as:
> Confusion
> Behaviour changes
> Slurred speech
> Marked drowsiness
> And eventually unconsciousness
If in doubt whether a person is having a hypo, and they are conscious, give sugar - you can do no harm. Where possible do a blood glucose test. A result BELOW 4.0 indicates a hypo.
Hypos should be treated promptly.
The treatment is to give quick acting sugar of any kind.
If conscious, give any of these:
> glucose tablets
> sugar or honey (2-3 teaspoons)
> jelly beans or jelly baby lollies (7)
> sugary soft drink - not diet (1/2 can)
Symptoms should disappear in 10 -15 minutes. If not, give more sugar and check the blood glucose level.
Never try to give food or drink to someone who is unconscious, instead call 000.
A person who has had hypoglycemia should not be left alone. They should NOT be sent alone to a sick bay or sent home from work or school immediately after a hypo. At least 15-30 minutes is required for the blood sugars to return to normal.
What is Diabetes?
Diabetes is a condition in which the body cannot sufficiently convert food into usable energy. The reason for this is a lack of insulin - a hormone produced by a gland called the pancreas, or failure of the body to respond normally to insulin.
When starchy food is digested, it breaks down into glucose. This builds up in the blood stream. Insulin controls the level of glucose in the blood by helping glucose go from the bloodstream into the body's cells. Once in the cells, glucose can be used for energy or stored for future needs. With some people the above process fails to work properly and this results in the condition known as Diabetes.
The common factor in all types of diabetes is the need to keep blood glucose in the normal range. This will help reduce the likelihood of long-term health problems or 'complications'. The treatments that exist now are not a cure. Diabetes is a chronic illness. Until a cure is found, treatment must continue throughout a person's lifetime.
The Types
Type 1 or IDDM or Juvenile Diabetes : The pancreas ceases producing insulin. Those affected require daily insulin injections to survive.
Type 2 or NIDDM or Mature-Onset Diabetes : The pancreas fails to produce enough insulin to meet the body's needs or the body is unable to respond normally to insulin (insulin resistance) and the pancreas fails to produce enough insulin to meet the body's increased needs. This most commonly affects older and often overweight people.
Gestational Diabetes : The hormonal changes in a woman's body during pregnancy sometimes cause insulin resistance and again the pancreas fails to respond adequately, blood glucose levels rise. All pregnant women are tested for gestational diabetes.
Type 1 Diabetes
Approximately 100,000 Australians have Type 1 Diabetes. The cause of Type 1 Diabetes is not totally understood. However, it is believed that people have a genetic predisposition to developing diabetes. A trigger factor such as a virus then causes the body's own immune system to incorrectly identify the insulin-producing cells as foreign and destroy them.
Managing Type 1 Diabetes is a complex question of balance. Type 1 Diabetes is treated with multiple daily insulin injections, healthy eating, regular exercise and constant monitoring of blood sugar levels through taking small samples of blood from the fingertips.
High blood glucose level (hyperglycaemia) causes one to feel fatigued, dehydrated and ill. The kidneys filtering the blood collect more glucose than usual. This glucose must be removed from the body. You pass a lot of urine. You need more water, get thirsty and drink a lot. People with Type 1 diabetes are generally able to treat hyperglycaemia by increasing the amount of insulin at their next injection or having an extra insulin injection. Symptoms of hyperglycaemia are initially relatively mild. If a person becomes ill or omits their insulin dose, the body is unable to process glucose normally.
Low blood sugar level (hypoglycaemia or hypo) also affects the body. Initially the sympathetic nervous system responds, with symptoms such as sweating, shaking, rapid heartbeat and pallor. The brain, which relies heavily on glucose to operate properly, can also be affected, leading to tiredness, trouble concentrating, mood and behaviour changes and eventually possible coma. Treatment of mild hypoglycaemia involves consumption of sugary food or drink followed by something more substantial such as bread. If a mild hypo is left untreated, the blood sugar level will continue to fall, starving the rest of the body of glucose and energy and leading to serious episodes such as blacking out. In most cases, the early symptoms can be recognised and treated without further problems.
A complex balancing act!
There are a large number of factors which influence blood glucose levels. They include the amount and type of food you eat, the amount of insulin you inject, all forms of exercise, drinking alcohol, and taking prescribed and recreational drugs. Many less tangible factors are also involved, often relating to the interaction of hormones in the body, such as those produced during periods of stress, anxiety and menstruation. A reliable but unpredictable part of every day life for most people!
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Permalink Reply by Meredith on
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I know what you mean. My son, Reed was diagnosed @ age 3 (1/6/06) and we were devastated. More than our family being clueless was the doctors and nurses being callus about it. While we were in the hospital (we had to stay almost 1 week to learn about it) they were so rude and thought we were completely insane to be upset about it. They felt like we should be grateful that he wasn't diagnosed with cancer! I called about support groups....there are none and everyone acted like I was crazy for asking. It's been a long road, but it does get easier as time passes. He switched to the pump a few weeks ago and his BS has been better. Our new dilemma is going to school. He is starting Kindergarten and there are no nurses in the zone that we are in. Crazy!! I am willing to chat anytime! =)
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