chronic health conditions

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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*

❤

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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. ❤