relationships

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*

❤

This weekend, my husband and I had “the” conversation. Within any marriage or long-term relationship, there are many types of big, important discussions. Before we were married, I told my husband I did not want children. I knew that he did, but it just wasn’t something I wanted when I was in my 20s. He loved me enough to marry me anyways. Then in 2002, five years after we got married and a few months after my stepfather died unexpectedly at the age of 58, Wal and I were sitting in a Wendy’s in Bangor. We were reflecting on my stepdad’s life and talking about my mom’s future, when I blurted out that I think I wanted kids after all. My family is so wacky and weird and wonderful, why wouldn’t I want that to continue? Of course then it took 4 more years until my boy was conceived due to my endometriosis, but he was well worth the wait.

We’ve had other conversations that should have been tremendously impactful for us both, but often they were not. Talking about debt, sharing household chores, and parenting are the first ones that come to mind that have had only short-term effects.

But in the past few years, Walter and I have talked a lot about end-of-life. This is partially due to my brother’s death, then my parents and my father-in-law. We wrote out our living wills the month after my mom died in 2019, which happened to be just three months before Wal ended up on a ventilator and in a coma. We’ve both changed our living wills a bit since then, having learned the hard way what we want and don’t want our bodies to go through.

This past year, though, has been particularly difficult to talk about death when it seems like it’s much nearer than we thought it would be at this time in our lives. I may have been volunteering for hospice for nearly two years now, but it’s so different when it’s your own spouse. This weekend, my husband admitted that he’s finally seeing how sick he really is. He realized that some of what he was able to do last summer he can no longer do. “I hope I’m here at this time next year,” he said to me last night. We started to talk about his beliefs after death, how he’s not scared to die but doesn’t want to. But also how tired he is. When you have congestive heart failure, your heart WILL stop working at some point, and right now, his heart is working overtime.

Most of the time I have faith that my husband will live another 6 or 7 years, maybe even 10. (He does have incredible longevity genes, and most people in his predicament would have been dead a year ago.) But after the week we’ve had, with constant pain, tremendously high blood pressure and heart rate (but not quite enough to go to the ER), and high blood sugar levels, I’m not so sure about the number of years anymore.

There was a LOT of caregiving to do this past week due to a wrist injury Wal incurred a month ago. It gave me flashbacks of when my mom lived with us for those two short and exhausting, stressful months. And possibly a glimpse into our future? I can already see that I will either need to change my work schedule or honestly, not take care of myself as much as I do right now. I’m fortunate that I have the time to walk before work (unless I don’t sleep well, which is happening every other night lately) and I sometimes walk at lunchtime while the weather is still good, then workout at the gym after work a few nights a week. But that’s leaving my husband alone a lot. Am I frustrated by his lack of social circle? You bet your ass I am. I can only encourage so much, then I have to let it go. But…the guilt does set in. He’s told me before that he wants me to live my life but then admits he gets lonely.

And I keep thinking, “What if this really is his last year?”

I made time for my parents and brother in the last years of their life. I didn’t realize it was the last year for my brother, but I made time because I loved being with him. I knew my parents’ time was short, and I wanted to make sure I did right by them. And although I often enjoy time with my husband, this just feels complicated. Maybe because there’s a lot of anger towards him for not taking care of himself for our entire marriage (and before)? And because our son won’t have his dad around for much of his adulthood? Probably.

But…I still want to do right by my husband. We’ve been together for 29 years, married nearly 27. When you’ve been with someone that long, you know so much about them, including when they are scared or hurt. I have a lot of empathy for people, but I feel the pain and fear and disappointment that my husband is feeling. So I’m trying to make his life AND death to be whatever he wants it to be, but it’s not easy. I often feel helpless and frustrated and sometimes I just want it to all be over.