type 2 diabetes

by

Always Hovering

On December 10th, Sophie Kinsella died at the age of 55. She was a bestselling novelist who wrote the “Shopaholic” series. Her real name was Madeleine Wickham. She wrote a few novels under that name, too. She had 5 children, a husband and countless friends and fans. When I read the news of her death, one of my staff and I made a quick “In Memoriam” display at the library. A few hours later I was racing home after a phone call from my breathless husband, and I wondered if I’d always remember the day Sophie Kinsella died, because it would be the same day of my husband’s death.

These are the thoughts people have when they love someone with a chronic or terminal illness.

My husband did not die. His heart rate was in the 200s and his oxygen in the 80s–to say it lightly, both of those things are very, very bad. He was vomiting and shivering uncontrollably. (Thank you to my favorite sister for staying with him until I could get home.) He didn’t want to go to the ER yet, so I sat with him, rubbed his back, emptied the bucket, and wiped his face. He was dizzy and dehydrated, so helping him to and from the bathroom was a herculean task, but we did it. Twice!

He made it through the afternoon and both his oxygen and heart rate started to improve. I slept on the couch that night so I could be close to him. I had still planned on going to work the next day because that was what I did, you know? Then I awoke at 3 am and realized that I couldn’t leave the house if he couldn’t get to the bathroom by himself. Plus he hadn’t eaten anything since that previous morning, so I knew he’d still be very weak. Because I am my mother’s daughter, I hated to call into work, especially if that would leave them a bit shorthanded. But as usual, my staff are awesome and were just fine without me.

So, I hovered near my husband all day instead of working. It had snowed so I needed to shovel the steps and clear off the cars, but I waited until he was napping to do that. It reminded me of one of my hospice clients. His wife used to hover nearby and only went outside to get the mail or shovel or garden when her husband was napping, too. We want to be there if they need anything, but also we want to be there when they die.

Although Wal is better today, we didn’t get to do what we had planned. Each year we drive around and look at some of the cool holiday lights folks have set up in the area. We drink hot coffee or cocoa and listen to Christmas music in the car. It’s been an annual tradition with the two of us for a while now, and although he says he likes the lights, I know Wal does this because of how much I love it. But this year? I’m not sure we’ll get to it. We were going to go tonight, but he just felt too awful. I had already planned to bring a bunch of homemade treats to our son and his friends, so I still did that and drove about to see a few lights on my own. I still got a hot coffee (peppermint mocha, because c’mon, it’s Christmas!) and listened to Christmas music, but it wasn’t quite the same.

One of the light displays I drove out to see in Milford. It’s wild.

I wonder if this is a peek at my future Christmas seasons. Still somewhat enjoyable, but laced with melancholy and loneliness?

Maybe.

What’s interesting about the timing of this sickness, is that earlier this week, Wal and I had argued (or rather, I barked at him and he stayed calm) about his lifespan. I think he has much less time than he thinks. When you’ve already made some decisions about your health that leads to palliative care…which is the step before hospice care, then more than likely you do not have a decade left to live. My frustration at my husband’s denial was…tremendous. I hadn’t been that angry at him in a really long time. After a therapy session on Wednesday morning, I understand my anger a bit better and understand where Wal is coming from.

Then that same day, that afternoon, he got violently ill and could have died. I think these few days have put everything into a different perspective for both of us. Wal knows how sick he is but hopes for more time. I will try to be at home more and will take time off when he’s having difficult days. I will do my best to not be angry at him wanting to live longer. I mean…why get mad at that? That’s what we all want, right? I won’t get into why I was so mad, but I do understand it. And I’m now letting some of that shit go. Because how much time do we have, and why be pissed off through any of it?

But for now, we’re still here. The kid comes home for winter break next week and our house will be loud and messy once again. As much as I like quiet and a clean home, I’m looking forward to having our boy here to fill our place with that beautiful energy he possesses. Wal and I can’t help but light up when he’s here. We look forward to seeing him each day, and even our exorbitantly high grocery bill we always have while he’s home will not dampen our mood.

Happy holidays, friends. Find all the light, love and peace that you can.

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Dysfunction Reports

If you’ve ever had to apply for disability for a physical ailment or diagnosis (Social Security Disability Insurance–SSDI), you know that you need to fill out a shit ton of paperwork. Oddly, I typically love doing paperwork. I love surveys and questionnaires and I’ve helped my husband fill out many kinds of paperwork throughout our entire marriage. It brings me a little joy.

But the function reports you fill out for Social Security are so…depressing. The questions asked are to show the government what you *can* do, but also what you are no longer able to do. As we went through the list of questions, my mood dipped lower and lower and lower. He talked about how things have changed. He used to make dinner on a regular basis, and still does occasionally, but now he has to do it sitting down on his walker. Often he can’t stand for more than 5 minutes, and if you’re boiling or frying something, it would be silly (and dangerous) to sit in another room if you can’t see or hear what’s happening on the stove.

On the form, there’s a question that asks you to describe your typical day. As Wal described his day, and the amount of dozing and napping and sleeping that he does, I just got really sad. Between his heart not working well, his chronic pain and the medications he has to take to keep living, he is *literally* sleeping much of his life away.

Then we got to the question about what he can no longer do. He listed off a bunch of things, first the work-related activities, then many of the tasks at home he can’t do any longer. This is when I cried just a bit, and he started to sigh more.

As you age, you expect things to change. You expect to not be able to physically accomplish what you once did. But when you’re ill, you realize that you can’t do what you did just last year. Or even 6 months ago. I don’t feel like I’m been particularly naive about Wal’s sickness, but crikey. Filling out these forms and seeing in black and white how far he’s deteriorated, was still a surprise.

Yet when the opportunity came up to visit with a dear friend and for Wal to meet my friend’s family for the first time (and go to the coast!), he was up for the challenge. I drove us to Bar Harbor, and I loved how he kept the window down and did what I typically do when we go to the coast. He inhaled deeply as we neared the ocean and exclaimed how good it smelled. The salty sea air always rejuvenates us!

We met our friends at Acadia National Park and I rode up to Cadillac Mountain with them as Wal drove to the restaurant we would meet at for dinner. (Walking at all on Cadillac was not something he felt he could do.) I had a lovely time with my sweet friends, then we all met at the restaurant where we ate, drank, talked and had a good time. It felt like years had been rewound and my husband was more like he used to be. Not the chronically ill man who is in near constant pain, who gasps for breath when he naps, who *has* to nap, whose hand tremors often make him have to eat with his left hand instead of his usual right. He was just…Wally.

After we left our friends, we did a quick stop at the grocery store to pick our boy up something for dinner. But as we made our way to the check out, it seemed like Wal’s energy was draining and his pain was ratcheting up. The way he walked started to change, the grimace formed on his face, and he was back to the man who can no longer work, the man who doesn’t eat much anymore, the man who can no longer take short walks with his wife. By the time we arrived home 90 minutes later, it was an effort for him to get out of the car. It was time to take his medications and hope his pain would not be so bad through the night so he could sleep.

Then it was back to me watching his chest to make sure he was still breathing, back to counting out his meds and placing them into the pill caddy, and back to helping him in the shower.

But…it was the perfect respite for both of us. He felt like he was living again, and I got to remember what life used to be like. Our days may not be like they used to be, but that one evening gave us our lives back for a little while and it’s made both of us grateful for those fun and sweet moments we still have.

And the kind, kick-ass friends we have in our lives.

Thank you, Jo, Ray & Freddie for a fantastic evening. And thank all of you friends and family who continue to support us by listening to us, loving us, and lending us a hand when we desperately need it.

I feel very, very lucky to have all of you in my life.

*hugging you tight*

❤

by

Just Awful

Yesterday morning, as I sobbed and hiccupped on my couch, I told my husband I was a horrible caregiver. “I’m too selfish to do this,” I cried.

Just when I think things are ok, they’re really not.

My mother has Type 2 Diabetes, and before she had dementia, it wasn’t a huge problem. She didn’t eat very well, but she took her medication and it was manageable. Then we realized that she hadn’t been taking any medication for nearly 5 months, things were bad. So my caregiving duties were upped a bit and I started religiously visiting my mother at least once a week to fill her pill container and to chat and just see her. Yet in the past month, the situation started to decline. Mom just hasn’t been taking her medication. Maybe twice a week, but that’s all. I don’t know why, but something changed. The first week it happened, I hoped it was just a bad week. And the next week she did take all of her meds, so I thought indeed it had been a snafu. But then for the next 3 weeks, she only sporadically took everything she needed to. And only once did I say, “Mom, you really need to take your medicine, ok?” But why? Why did I only ask her once? Because although I am 43 years old, I still don’t want my mother mad at me.

I am very rarely the recipient of my mother’s wrath. My sister has been the unfortunate one in that scenario and it can be awful. You can practically eat the silence that invades the room when she’s angry. It’s thick and dark like molasses. Or the look she gives you. Christ, a person could burst into flames if they get that look.

But I mean, really, who wants their mother mad at them? No matter what age? But….I know I need to ask my mother if she’s taken her pills…and I need to ask every day….which, in my opinion, is completely awful.

This all came up at Mom’s doctor’s appointment a few days ago. Her glucose levels were off the charts and Mom’s healthcare provider asked my mother if it was ok if I asked her to take her pills. “I know you care about me. I know why that’s the reason you’re asking, so it’s ok,” Mom said. So that’s what I’ll do.

And then I get a late night phone call from the on-call doctor at Mom’s doctor’s office. He tells me Mom’s glucose levels are in fact over 600 and she should go to the ER and get insulin. So…here I am, 35 minutes from where my mother lives. I know that if I call her and wake her up, she’ll be confused and probably hang up on me. If she’s still awake, more than likely she will refuse to go anywhere because it’s late at night and she’s not going to wake her friend and have him take her. So…I don’t call my mother. I wait until the next morning and explain the situation. She says she’ll go to the ER. She then calls me back 10 minutes later, asking what she’s supposed to do at the hospital, what to say, what will they do. Then calls back one more time to say she’s leaving for the ER, but says, “But I’m not staying!” I reassure her that they’ll probably only give her an IV for fluids and some insulin then she can go back home. Which is what they did. They brought her levels down significantly and she’s ok.

But I burst into tears after that last phone call. The self-doubt and guilt completely overwhelmed me. Should I have called her the night before? I could have driven over there and taken her, right? Why didn’t I at least give her the option the night before? I want to say it’s because I knew she wouldn’t go. But I don’t really know that, do I? I was tired, I was on my way to bed, and I didn’t want to deal with one more thing.

Do other caregivers go through this? Do they do stupid, awful things and continuously wonder what the hell they’re doing? This is so much like being a parent, but not. I feel like I have the same amount of responsibility as with my child, but yet more urgency and less power. I am still my mother’s child. I don’t want to make her angry or upset and yet I don’t want to fail her, either. And if I don’t step up my game, I think I’m going to do just that.

 

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Duped

What do you do when you feel betrayed by someone you love? Do you get angry and lash out at that person? Do you stop talking to them? Or do you try and discuss the situation and attempt to forgive?

How about if that person has dementia? Then how would you react?

Today I took my mom to an appointment with her doctor. This was no big deal, just a quick check up to see how everything is going. The doc decided to check Mom’s blood sugar since it had been a while, as well as her A1c number. (If you’re not diabetic or don’t know one, the A1c number is basically a test to show how your blood sugar levels have been for the past few months. The test should be done every 6 months, but possibly every 3 if things are not great.) First the nurse did a quick test of Mom’s blood sugar–it was over 300.  For an average person, 100 or below is good. Then she tested Mom’s A1c. A 6 or 7 is good, and Mom’s was above 13.  In other words, it’s a shit storm.

After a little investigating and questioning both Mom and myself, the doctor discovered that Mom’s meds should have needed a refill at least 8 months ago. EIGHT MONTHS. The doctor turned from her nurse to look at both Mom and me. She tilted her head and had this smug yet pitying look on her face. I wanted to smack that look right off her face. Was I defensive? You bet I was. I fucked up, but I wasn’t going down alone. “So…how often are you supposed to check Mom’s A1c?” It had been nearly a year since they checked it, so we all fucked up.

Now the question was, why was her blood sugar so bad? Was she eating well? Probably not, but that’s a given. Was she taking her medication? Mom certainly thought she was, as did I. That’s the one thing Mom had always been so good about was taking her meds. Or was she? Did I just believe her because she’s my mom and she’s so damn convincing? Or because I didn’t want to take on any more responsibility?

JACKPOT! Finger on the nose!  You got it, Holly!

I wasn’t ready.

So. After this visit, I took Mom home and we went through her medications. She actually did have some of her diabetic medication left from over a year ago, which means she only took it sporadically. But her other meds? Oh my god, her other meds. Like the pills she takes for dementia?

Not one pill had been taken. Not one. In 5 months. Not one.

I am an idiot. I am not a good caregiver. It’s obvious to me now, in fact, that I suck at it.

wrong

I’ve wanted my mom back for so long and kept hoping things would just stay at this even keel for years and I could keep pretending that things were good and I was just her daughter and not her housekeeper or nurse or parent.

I have to stop thinking that way now. It’s all a bunch of damned excuses!! I have to suck it up and help her.

I don’t blame my mother for this. Not at all. For just a moment I felt duped. Like she had stopped taking her medications on purpose. But that feeling only lasted a moment. I knew it wasn’t true. I knew the true deceiver in this situation was me. I felt a betrayal, but it was on my mother’s behalf. I didn’t keep her safe like I was supposed to.

You know, I realize how selfish I’ve been and still am. Even today after all this. I know I need to go over to Mom’s place once a week and make sure her meds are all set and ready to go for the week. It’s not a huge deal. It means either I need to take my son over on the weekend after his soccer game or skip a morning exercise routine during the week. When I say it out loud, it’s so little I’m giving up to help her…but why does it feel so big?

I feel like I’ve taken one more step closer to….I’m not sure to what or to where. Maybe just feeling like I’m more of a parent now? Like before I was parenting a teenager and now we’ve gone backwards and it’s closer to parenting a Kindergartner?  Or maybe it’s because it is another step.

It’s one more step towards the day my mother won’t know who I am.

 

 

 

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In sickness and in health….

This afternoon, in a quiet voice with tears building behind my eyes, I said to my husband, “I hate you just a little bit right now.”

He replied with a sigh, “I know. I hate me right now, too.”

Today, due to years of unhealthy habits, my husband was required to start using insulin.

He’s been diabetic for quite a while now and has taken medication on and off.  He’s overweight and unhealthy and has done nothing about it.  He eats a lot of fast food and drinks soda and never exercises.  His favorite pastimes are playing video games, watching movies and reading.

And you know what?  I am royally pissed off right now.  Both my son and I just watched my husband, as he injected himself in the belly with his first shot of insulin.  My son couldn’t watch and turned away while plugging his ears, asking me to tell him when it was over.  But I stood there and watched.  I wanted to see this.  I wanted to show him that yes, I will watch him do this to himself, like I watched him consume tons of junk food and sugar and carbonated beverages over the 19 years we’ve been together.

Did I ever try to help him, you may ask?

I

tried

everything.

I sympathized and offered to make him better lunches.  I empathized and asked what can I do to help.  I asked him to walk with me. To run with me.  To lift weights with me.   I carved out extra money from the household budget to buy healthier foods.  I begged, I ignored, I yelled, I cried.

What the fuck else was I to do?!?

I kept thinking that once we had a child, my husband might start to eat a little better or try to get a little exercise.  I thought that having the responsibility of caring for a little person, and being a good example for another human being, would be enough to *want* to change.

But it wasn’t.

Yet the thought of possibly going on insulin made him change, although it was already too late.

Last week, he began nutrition counseling for diabetes, and since then has attempted to cut soda from his life and start eating well.  He’s keeping a food diary and for the first time in many, many years, I can see that he’s really trying to do this right.  The other night, he called on his way home saying he was bringing dinner.  I thought it might be Chinese food or some kind of takeout, because that what it would have been a month ago.  Yet he came home with a roasted chicken and grapes and all the fixings for a salad.   I was stunned….and a little bit giddy.   Is this his tipping point?  Is the threat of insulin shots what he needed all along?  And now that he’s officially on insulin, will he continue to eat right (or attempt to) and maybe exercise?

I have hope.  I have a lot of anger, too, but I’m trying to let that go. (I’m especially angry that I need to learn how to inject him with the “special” syringe if his blood sugar becomes so low that he goes into a coma.  I’m not happy that I have to even know about this, but I’ll learn it because I don’t want my husband to die.)  I know he’s a bit depressed right now, and he’s angry at himself, too.  He can’t believe that he let himself get to this point…and honestly, I can’t either.   I had hoped he would have learned from his father (who is also on insulin).  So to try and break this horrendous pattern, my husband wanted Bri to watch him take the insulin shot, hoping it would scare him so much that Bri would eat better and become more active so he wouldn’t ever have to take insulin himself.

Want to hear my theory?  You need to set a good example, be a good model of behavior, then perhaps your children will follow your lead.  But do as I say and not as I do?  Bullshit.

So…where does this leave us?

Exhausted and sad but hopeful.  With a weight loss of at least 50 pounds, maybe he can get off of insulin.  It can happen.  But I can’t make my husband eat right and exercise.  My son can’t make his father healthy.  There’s only one person who can make this happen.

Just one.

You can do this, Wally.  I have faith in you. ❤