When You Put Yourself On 'HOLD' For Others, Mom And Dad's Journey

You never expect your parents to age. When they do, what a shock.

Mom and dad still live in their home where you grew up. You moved out of town for a job after university. So did your siblings. You got married and had your own kids. So did your siblings. Everything was going along tickety-boo. And then...life changes. And boy, does it. You suddenly wake up one day and realize your parents are elderly. 

You think, and know, they need some help. They don't think so. Ok. Just a speed bump. Health issues get bad for one parent. The other parent is refusing help but still doing an amazing job of trying to cope without 'bothering' anyone in the family. You try to convince them there is help available. Your siblings do the same. Resistance. Placating us. Oh dear. It's getting really tough for them. 

You have your own health issues, diabetes. And your kids have occasional rough patches. 

Your siblings are dealing with their own health issues. They are dealing with their own family stuff, mostly good, a little not so much.

For 8 years following my diagnosis, I did a bang up job of looking after my diabetes. The next two years were burn out and denial. Now, just when I thought I was ready to deal with my diabetes seriously again, my parents' reality came to light. The next two years were going to be hell for all of us.

And hell it was.

I, we, watched dad deteriorate very quickly. This is not unexpected given the disease. Mom was in shock. Mom was living in a world so very foreign to her. They had a very traditional marriage. Dad made all the decisions, mom had input but, dad ultimately made the final decisions on everything. They had, have, been married for 65+ years. This was how they lived. But dad could no longer make decisions. Mom didn't know how to make decisions she told us. She never had to. Mom found it very difficult to make even small ones. What we all realized is that mom could make decisions. Her decision was to do nothing, even when something needed to be done. Dad needed a safe place to live.   Mom needed rest, sleep, food, a break. She married dad for better or worse. This was the worse.

The 'we' I mentioned earlier--my hubby and kids, my two brothers and one wife. My husband and kids were my very large shoulders to lean on. My brothers--I saw a side of them I'd never seen before. I don't mean that in a bad way, no, just the opposite. I'd heard so much about how illnesses like dad's divided family or made family walk away leaving one kid to deal with it all. That did not happen in my family. My brothers and I were there equally every step of the way for mom and dad, and for each other.

During this time, I didn't feel well a lot of the time. I didn't sleep. I cried a lot. I basically didn't, maybe couldn't, look after myself. Oh, I tried but it was easy to forget I had my own health need. My diabetes did not take the break I was. I had gained weight, about 25 lbs and holding. When I tested my blood sugar, I never saw anything below 11-12 mmol. Even saw a number of 14-15's. Still, I couldn't rally to help myself. I was just heart sick over what I couldn't control 2 and a half hours away.

My diabetes was a mess. 

The "I Don't Care" Years

Two years is a long time. A long time to ignore your health, your body, your thoughts. I didn't know it at the time but I was burnt out. I was living with diabetes burnout.

What is diabetes burnout? Some have defined diabetes burnout as: 

- "a term given to the state of disillusion, frustration and somewhat submission to the condition of diabetes"

- "a state in which patients grow tired of managing their diabetes and ignore it for a period of time"

- "can mean so many things to anyone who lives with any type of diabetes, and it can be triggered by any number of events or by nothing more than the daily physical and mental burden of living this disease" 

Was I disillusioned and frustrated? Yes. For several reasons.
Was I tired of managing diabetes? Yes. Eight years of vigilance.
Was I tired mentally? Yes. It was always on my mind, both in good ways and not so good ways. I just wanted to be like everyone else.

And I chose to ignore it, for a while. Two years.

Oh, I told myself I was going to get back on track. I told myself I would start testing. I even went back to the specialized services for some help. I had very encouraging news: after ten years with diabetes, the pancreas usually wears out. Because I had done such a great job, I had preserved about 80% of my pancreas. WOW!!!

Did that get me back on track? Nope.

Maybe I should see the Registered Dietitian-CDE...ok, but I know quite a bit...saw her, nothing new. That's good, I'm motivated now. Lasted a couple days.

I'm going to start walking again, but, my feet hurt, I have shin splints and my back is killing me. And the weather is bad--too hot, too cold, too rainy, too much snow...no, I think I'll stay home. 

I went back to LoseIt! Connected with app friends again. Promised I'd stay. Nope.

And the whole time, I felt emotionally exhausted. I just didn't want to do it anymore. Were the professions right? Was it because I was testing too often? I don't think so. I just think I was tired. Sick and tired of it all.

I'd watch my family eat whatever they wanted, whenever they wanted. Many people say, just don't bring junk food into the house. Easier said than done. I'm the one with diabetes. Not my family. Don't get me wrong, they were and still are very supportive. But I'm the one with the disease. I should have enough control in my life. To look after myself. To avoid the junk. To eat healthy. To exercise. It hurts my brain just thinking about it.

As an aside, isn't the word 'should' just filled with all kinds of nasty guilt? Ya, like I couldn't feel guilty enough without something else to feel guilty about!

I kept wanting to be back on track but it just didn't happen. I couldn't make it happen. Then life got in the way. Other things in life took over. My elderly parents were in a bad way. Dad's health was not good.

My Regression

Regression is a tough one. In my first post, I referred to my diabetes regression. I mentioned that I behaved like I was in my teen years again: rebelling, ignoring, pretending the obvious didn't exist, etc. Now if you're a teenager, those temporary behaviours are what help to shape you into an amazing adult. Rebelling makes change in the world. Ignoring teaches patience. Pretending things don't exist is a way of giving yourself a time out while you figure out what your opinion is. In a teenager or young adult, these can be/are positive attitributes. For an adult with a significant health concern, not so much.

I think my diabetes regression started around the time the new Canadian Diabetes Guidelines came out. I had been testing my blood sugars approximately seven times a day. Sounds like a lot, I know, especially since I wasn't on insulin. In my defence, another teen trait, that is how I went 8 years with just diet and exercise as my treatment. I knew my body very well. Not to offer TMI, but I could even tell when my periods were coming by the slight rise in my blood sugars! Now that is amazing info coming from one tiny drop of blood!! None of the health professionals in my care circle were concerned about the amount I was testing. Neither were the benefits companies my husband and I belonged to that co-pay for my supplies. Everyone was so supportive. I'd upload my blood values and enter my food data into my apps in the evening. This kept me busy after my walks. If I was busy, I wasn't thinking about snacking in the evening. It was all good. Everyone on my diabetes team was cheering me on. 

Then the Canadian Guidelines for people with Type 2 diabetes changed. 

The recommendations: if not on insulin, testing randomly 4 times a week at varying times is what was now expected. I was told there was "no need to test so often"; "not type 1, not on insulin"; "testing too often"; "don't be so focused on testing", etc. 

My husband's benefits company was now sending me letters of warning that soon they wouldn't be covering the test strips when I reached the limit they will co-pay for. I didn't even know there was a limit but apparently it had now been lowered based on the GUIDELINE which now became the absolute "RULE". The guideline was now carved in stone for that company. 

In a few moments of "ohhhh, crap" I decided to call my own benefits company. I hadn't gotten a letter from them. There was no issue. They will pay for the strips and supplies I need, even if they have to pay the full amount. Whew. Dodged that ball.

The message my diabetes circle of professional care was giving me had changed based on what was now considered best practice. Now, I understand what best practice means. Yes I do. I also understand how my team needs to promote best practice that is based on the current evidence. But 'best' practice is not the 'only' practice. Since I had been told I was unique in that I managed to keep my diabetes in line, I had preserved at least 80% of my pancreas from all my hard work then I failed to understand why I should fix what isn't broken. Diabetes is individualized care, right?

But. They are the experts. I go to them for a reason.

I found myself listening to the folks who knew, I found myself not testing. I found myself somewhat relieved I guess. I was being given permission. I found myself not caring about my diabetes. I heard myself saying things like "I'm not diabetic today" or "I'll test my blood sugar tomorrow" as I scarfed down whatever I saw that looked good. There were pangs of guilt, yes. Those pangs became very easy to ignore, especially since I was doing what was recommended. A very slippery slope indeed. 

Looking back, with the exception of my family doctor and my benefits company, my team all kinda missed the point. Diabetes is supposed to be individualized care. Testing is what kept me on track. It kept me healthy by keeping my eating and exercise in line. Testing was MY medicine.

The next 4 years were a struggle. 

My Journey Began With Gestational Diabetes

Diabetes can happen when you least expect it. You have no family history. You had no real idea you could be affected by it. You have one baby. All goes well. You're pregnant for the second time. All is going well now too...and then...you find out you have gestational diabetes. It's late in the pregnancy. You're tired. The baby...is the baby going to be ok? You can't think about anything but the baby. Testing your blood sugar? Ok. Eat then walk. Ok. But you're oh so tired. But it's for the baby. You're officially being told, no worries, the baby is fine. Once the baby is born, all will be good...

Did I know that having gestational diabetes would change my decision regarding how many children I'd have? It did. Now, let's not blame diabetes for everything. I will do that later on. I was 34 yrs old when I had my first baby. I was 36 when I had my second. To be honest, that also was part of the decision to not have the 4 kids I wanted. I don't think it was ever my husband's plan to have 4 kids, LOL. What surprised me was how much my parents were concerned about me having another baby because of the diabetes. I explained to them that I would be ok. It became a non issue pretty quick though. My husband and I were just plain tired at 36 years of age with two young kids.

Fast forward 10 yrs. You don't feel well. Must be some kind of bug going around. It will pass. Three months later it still hasn't passed. Hmmm. What else could it be? It's now November. There seems to be a lot of information about...diabetes...could you be...? Off to the doctor. If  we are going to test for diabetes, we should also test for any cardiac issues. Oh. Now that, you didn't see coming. Where do you begin with all of this? What do you have to do for you now? It's not for the baby. It's for you.

That's how my journey started. Was it a tough journey? Yes at times. Was it horrible? Not at all. I wanted to know from my doctor, do I have time to make some changes? Yes.

Let's give it 6 months and see what you can do. Ok. Now that sounds great.
Let's get you a blood glucose monitor. Check.
Let's get you testing. Check.
Let's get you some diabetic education. Check.
Let's get you some help from a registered dietitian. Check.
Now the hard part. Lose some weight. I'm 5' 8" and I weighed almost 230 lbs. Yikes.

I lost that weight, well, at least a good portion of it. I got down to 169 lbs. Yay me!
I tested.
I ate the way I was supposed to.
I walked.
I felt great. I had control of my diabetes. For 8 years, only diet and exercise.
Eight years??? Yes, 8 years.

Did you know that in 8 years, you get older? Me? Get older? I don't think so. I'm working full time. I have two children that have grown into amazing young people. We are a family on the go. It's all good.

Then after 8 years, I gave up. I now know, I burnt out. I had no idea that could happen. I had diabetes burnout. I was tired of being so regimented. I was regressing into my teen years. I was acting out. And I didn't care.

The journey continues...