congestive heart failure

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Trying to Look Ahead…and Failing

Hi friends.

I am struggling.

There is no other way to say it.

I am trying to look to the future to give me some positive vibes. I know I have a lot to look forward to this year–a trip to Belize with four of my best girlfriends, touring colleges in Washington, D.C. while also visiting another one of my favorite humans, watching and preparing my son to apply for colleges all around the northeast. This should be an exciting time.

But while I am at home I feel…stuck? Unmotivated? Sad? Living with and loving someone who has a chronic illness and will eventually die from that illness, is incredibly difficult. There is so much anger to go around–from myself, from my son, and sometimes from my husband. Watching my husband shuffle when he walks, take naps every day because he doesn’t have the energy to do much, and come to terms with the fact that there is only so much he can now do to fix his health is heartbreaking–and honestly rage-inducing.

Here’s the thing: I want my husband to try and enjoy whatever life he has left. Hopefully that will still be 8 or 9 years, but at this rate, I doubt that figure. I know that for him, enjoying his life means he’ll watch films he loves, spend time with our little family, listen to a variety of music, and dream about winter camping. Little things bring him contentment. But to enjoy this life, it also means that he’ll eat basically whatever he wants. And in doing so, his diabetes is not under control and his congestive heart failure symptoms have increased.

This is the part that frustrates me to the nth degree.

Living our lives, no matter how we live them, brings consequences to not just ourselves, but those around you.

I am relying on my partner for not only emotional support but for financial support. And with the many days of work missed and a few unpaid hospital bills, it has created a tremendous stressor in our household.

Our son, a junior in high school, has begun applying for scholarships for college. I set him on this path because every school he’s interested in is out of state and all have hefty price tags. But now he’s become obsessed with applying for the big scholarships, the ones with full tuition that are so dang hard to come by. And I know that that is my fault. I honestly do not know how we will help pay for his schooling.

Currently my son’s main goal after college is to make sure he has a job that can pay his bills. He wants to love what he does but right now that does not seem to be his main concern. He has watched us struggle financially his entire life due to bouts of unemployment, short-term disability, or my choice of career that has never paid what I’m worth. And now that he is on the cusp of adulthood, he will do whatever he can to not live that life.

I am frustrated, scared, and just so unsure of what our future is. I tried to start a vision board for this year. I had ideas a few days ago and now I just feel lost. The one thing I wrote on it was about making and feeding my son healthy meals. Do you know why I wrote that? Because he asked me to feed him well so he could concentrate on his studies, work, applying for scholarships, and to start exercising again. 

Recently I was doing laundry and I told him I would do his laundry for him, too. But later that weekend, I fell in some kind of awful dark place. and I didn’t do the laundry. A few days later he called me while I was at work and asked where his work pants were. That’s when I realized they were still in the hamper because I just couldn’t function that weekend. So? I told him the truth. I said I had a depressed episode (I don’t really know what to call it, but that sounded accurate) and I didn’t do the laundry. Do you know what he said? He said, “Ah. Ok, I get it. That’s fair. I will just wear dirty pants to work. Love you, Mom!”

I love this child with every cell of my being.

Just a month ago I would have turned to running to help with all of these feelings. But I just don’t have it in me to do that right now. I did run one day this week and took a walk on a few others, so I’m moving at least. But something has to change.

I am grateful for my work, because that has become my sanctuary. I get to be with people I care about, I get to help others, and I just feel…useful. I feel like I make a difference. I don’t always know what I should do or how to do things correctly, but thankfully I have a team of people who support me and help me find my way.

If you have ever cared for another individual during their sickness and have felt this helpless and sometimes hopeless, I’d love to hear from you. Or if you have some wise words of encouragement, I’ll take those, too.

Thank you, friends.

Hugs to you. ❤

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Reality Check

I’ve been running a lot lately–for me, that is. I ran just over 15 miles each week for the past two weeks. They all felt just so…good. I ran in Springfield, Massachusetts two weeks ago while I was at a conference, and it was so atypical of my runs while traveling. Usually I’m over tired and cranky but desperately want to be outside for a bit and log a few miles. But this time it was just….freeing.

The Lorax at the Dr. Seuss Memorial Sculpture Garden in Springfield, MA.

I am trying to be present in not only my running, but my life. Breaking up with social media has helped me do that. When I run, sometimes I can’t really be where I am or be fully conscious of each step I take because it can be torturous and I just need to finish, damn it! But sometimes I can really enjoy my surroundings, the wind on my face, the sight of the gorgeous fall foliage, the way the light has changed now that we’re into autumn, the crisp smell of the air–it’s all really quite wonderful.

And sometimes, you just have to drag your ass downstairs and onto the treadmill because there’s a nor’easter and the rain is just a bit too much. Whenever I run on the treadmill, I try to be elsewhere in my head. Just focus on that ink blot kind of spot on the basement wall and think of running outside. The other day, though, in that rainy weather, I was halfway through my run, when my husband came downstairs to continue to sort his father’s belongings. After his father died in March, his mother moved back to Maine and brought much of their “stuff” with them, which is currently being housed in our basement. My husband’s job is to look through what’s here and determine if anything should be kept, donated or thrown out. Watching this man, whom I’ve loved and spent nearly my entire adult life with, slowly pick up every one of his father’s items and toss in one bin or another, was difficult. I saw this wide range of emotions pass over his face (grief, apathy, confusion, joy) and I couldn’t help but wonder if some day, I’ll be doing the same task with his things.

As many of you know that read this blog, my husband has had a variety of health challenges over the past four years, with the worst being congestive heart failure. Just this summer he has finally gotten control of his diabetes, which was a huge contributing factor to his worsening health. He feels better now that his blood sugar is where it should be, doesn’t ache as much, feels like living again. And yet…he has chosen to face up to the fact that he may not live another 10 years. In this day and age, when you’re 55 you think you might have at least another 20 if not 30 years left. But when you have a chronic health condition, especially one like congestive heart failure, living to a ripe old age is just not reality.

But while he was sick, he didn’t want to talk about, nor was honest about his mortality. Nothing. And now? This weekend I mentioned that one of the retirement accounts I have, I can actually start withdrawing from in 10 years. He said, so matter-of-factly, “I’ll never see you do that.” At first I didn’t know what he meant. Then I asked, “Because you won’t be here?” He replied that yes, he’ll be dead before then. There was no joking, no laughter like we often do when we talk about our health or aches and pains. It was just a fact and nothing more.

For several years, I’ve known that my husband will not live to be a very old man. And I’ve been ok with that fact. Sound cold-hearted? Maybe, but I come from a long line of women who outlived their husbands and kept living anyways. It’s what women do. Plus, in all honesty, I am very different from my spouse and live a different life, a healthier lifestyle for sure.. I am more social, do different activities than he does, often eat different meals.

But the reality of living alone, after our son has grown, isn’t the most welcoming thought I always figured it would be. Just the other night, I was lying on the couch, reading, with the tv fireplace glowing. My kid was out and my husband was sleeping, so I felt like I was all alone in my home. And for a few minutes I just sat in that feeling of being alone, or rather, being widowed. I have my son and many friends and a few family members, so I am not lonely but often enjoy being alone. This night, though? It was a little scary, a bit sad, and not the best feeling. It’s something I’ve been talking to my therapist about, to understand what’s going on in my brain and heart.

So now, I really, really try to enjoy my time with my spouse. There will always be moments and hours that I’m angry with him or frustrated or fed up, but that’s ok. We’re humans and living with and loving someone for decades is not an easy thing to do in all honesty. I think it’s tough as shit. But we do our best, right? We carry on, we try to live our lives as well as we can, and we love as much as we can, too.

So that’s what I’m going to do.

Love well and carry on.

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Hold On Hope

Habits are hard to break, aren’t they? I’ve bitten my nails for my whole life and I’ve finally stopped doing that…mostly. But now I tear at my nails instead. It’s marginally better? I drink coffee each morning before I do much of anything else. It’s not really the best habit because I use sugar and creamer. I’ve cut my sugar in half, but I can’t seem to get any further than that. Honestly, it’s a habit I don’t want to break.

What do you do when your habits seriously hurt your health? Smoking, drinking excessively, eating fatty or sugary foods–not to mention addiction to illegal drugs or pain medication–are all activities many of us participate in, but when your health is deteriorating due to these habits, how do you stop?

What if you are the partner, friend or child of the person with these harmful habits? How do you help the person? When is the time you step back…or turn your back?

In August of last year, I wrote this: “But…shouldn’t there be a time when we finally say, ‘I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.'”

I’ve discovered that there is indeed a time when I will say these sentences and that time is now.

After a recent hospital stay for my husband due to a medication failure, a diagnosis of congestive heart failure and a disastrous and degrading (to me) doctor’s appointment, I am stepping back. It is now up to my husband to take control of his life. He knows all of this now. We’ve had a “come to Jesus” meeting as my old boss, Bill, used to say. I won’t attend any more of his appointments unless he is physically unable to drive. When he asked if I would go to an appointment if he asked me specifically to go, I told him I’d have to answer that later. Right now, the answer is “no.” I have a list of his medications, but it’ll be up to him to let me know if anything changes. When he asked me yesterday if he should pick up canned hash to have for breakfast the next day, I told him I wasn’t answering those questions anymore. He could make that decision, that choice. And he did.

Does all of this seem too personal to put out into the universe? It is. It’s also really difficult. I know I have at least one friend who understands everything I’m feeling right now, and maybe there are more people out there who get it, too. You’re not alone.

Marriage is hard. Relationships are hard. Parenting is hard. Co-parenting is even harder. Watching someone hurt themselves when you know it affects more than just themselves, is rage-inducing.

Over the past few weeks, I’ve found myself falling back into that bad habit of emotional eating. I’ve always done that when I’m angry, and these past 2 weeks certainly proved that. Fortunately, I’ve been able to attempt running once more, and that has helped my moods tremendously. I wish it could help everyone, but at least I’m able to find patience as the result of my exercise and can listen to my son and husband when they need me. At this point I’m not sure I can do much else.

I know for a fact that some people will read this and think I’m heartless or selfish and should do more to support my partner. “You’ve been married for 25 years! You don’t just sit back while their health is in jeopardy!” But what if your own health, albeit mental health, is in jeopardy? What about your child’s? The old man can do this. He is completely capable of making good choices. I don’t care if you think I’m heartless or selfish. I know I’m not. I love my husband. I will until I die. I am still here. But right now, he is the only one who can help himself. Will I give him a pat on the back when he does well? Absolutely! But will I criticize him when he doesn’t? Nope. I’ll do my damnedest to just nod my head and say “ok.”

These changes will be damn difficult for everyone in our household. I will hope for the best, but expect the worst, which is my usual M.O. 😉 Now enjoy this song about trying to find some hope in a messy situation. Hugs to you all.