hospice care

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Checking In with Myself

At therapy this week, I told my counselor about the breakdown I had a week ago. The increased caregiving tasks had me feeling overwhelmed and I wasn’t sure how much longer I’d be able to do them without going mad. I cried to a friend and then cried with my husband. He feels awful in a variety of ways but said to me, with his eyes welling up, “You won’t be able to rest until I’m gone. I don’t know what I’d do if our roles were reversed.”

This made me sob harder. Our lives are filled with such horrible paths sometimes, aren’t they? I’m trying hard to enjoy the good moments while stumbling through the shitty ones.

After I told my therapist about this, she ended our session with advising me to “check in with myself” each day. How am I feeling? What do I need right now, but what can I actually get to fulfill that need? For instance, I really need a few days away from my reality. But instead, I’ll sit in the sun with a San Pellegrino lemonade and a handful of smoked almonds and pretend I’m on vacation for a few minutes. (Although it’s already fall weather here in Maine, so that might be changed to drinking a cup of delicious espresso and eating a piece of pumpkin bread….and dreaming of the lemonade & almonds and warmer days we had in the summer.)

The problem with me checking in with myself? My real feelings start to seep in, spill over, then gush out of me.

I am so angry. I have a LIST of things I’m angry about that don’t even include our current fascist POTUS and government, or local politicians who don’t think trans people should have the same rights as everyone else. That’s another entire list that just keeps getting longer and I’m sure it adds to the simmering rage many of us feel.

But my other list is about my life, the Healthcare system, my husband, caregiving, all the things that are currently affecting my family every minute of the day.

Since my last post, my husband finally came home after 18 days in the hospital and we were able to keep hospice care services. This was our goal for multiple reasons, but primarily we needed the tiny bit of extra help we get with hospice and the medications he takes are all covered under that umbrella. So I was grateful for keeping hospice for Wal, but also knew my caregiving tasks would increase.

I learned a bit about PICC lines and administering IV meds those first two days, made a few mistakes, but we finally have a routine. Every 8 hours, I have a list of procedures I have to follow. For any medical professional, this would be second nature–clean the table, take his arm out of his hoodie sleeve, wash your hands, gather the antibiotic & saline & heparin & alcohol wipes & IV caps, lay it all out on the table, unwrap every syringe, sanitize hands, uncap IV (PICC) line, wipe the end with alcohol, break the seal & uncap saline syringe, push any air bubbles out, screw onto PICC line, release IV clamp, slowly push the saline through, close the clamp, unscrew the saline syringe from IV, throw syringe away, wipe the IV cap with alcohol wipe, uncap antibiotic syringe, screw onto IV, release the clamp, VERY slowly push antibiotic into IV (5 minute push), watch husband get sicker as the antibiotic courses through his veins, close clamp, unscrew antibiotic, throw it away, sanitize hands, repeat saline process, then lastly heparin and finally top it off with a new IV cap and put husband’s arm back into sleeve.

This whole process takes about 10-15 minutes. It’s really not horrible, except when I watch him deflate and start to feel sick when those antibiotics go through him. He’s now drinking a bit of chicken bullion during and afterwards which seems to ward off the worse of the sickness.

It’s just…I get up at 5:30 every morning to take his first batch of meds out of the fridge to let them warm up for the 6am dose. This happens again at 2pm and 9pm. Some days? I honestly resent it. I shouldn’t, because this is what I signed up for–in sickness and in health and all that jazz–but I’m human and I can be angry at the whole situation. I think the combination of administering meds, bathroom duty, hygiene helper, appointment keeper, driver, cook and server, all just got to me. That and the fact that I’ve been putting my life on hold. I haven’t been “living in the moment” like I wish I could do 24/7. Instead, I’ve thought about the trips I can’t go on and the classes I can’t take right now. This is where the resentment lies and it’s not fair to my husband, nor to me. Someday he won’t be here and I’ll wish he was. My life will be different then and although I will have more time to go on day trips and possibly take classes, I’ll need to do it without him in my life. And that’s a weird thing to think about.

Finally though, over this past weekend, I found myself smiling more and once again enjoying the small moments of taking a walk or reading a good book or chatting with one of many loved ones I talked with over the weekend. When I checked in with myself those days, I could feel the stress I carry with caring for my husband, but I could also feel the lightness of joy in my chest. It’s hard to balance my emotions when I go about my day because it can feel like whiplash sometimes. But I’m doing the best I can, like we all do. I hope you can find that balance, friends.

I know loads of people hate that “finding joy” phrase, but fuck ’em. You do you, boo, and don’t worry what the rest of ’em say. Find that joyous moment and celebrate it. Eat those smoked almonds or cheesecake or greasy french fries, and wash it down with a San Pellegrino lemonade or a hot cup of chai tea or a sweet hard cider. Or watch a show, listen to music, read a book, dance in your kitchen. Do something that gives you a few minutes of happiness and swim in it. Soak it up and hold onto it until you can do something that gives you joy again. It’s not an easy way to be sometimes, but hopefully it can get us through.

Let me know what helps you through the hard times and what moments of joy do you hold onto it. I’d love to hear them. And as usual, hugs to y’all, friends.

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Losing Your Independence Days

As my husband’s health declines, so does his independence. He recently looked through our closet and took out a bunch of clothes that he used to wear to work. He doesn’t need them anymore nor do they fit him. He’s lost nearly 60 pounds since he wore those clothes. As he looked at all the pants and shirts he no longer needed, he got really sad. He said he felt like he was losing some of his “manhood,” not being able to provide what he used to for our family. I didn’t make many comments, just told him how sorry I was and cried along with him.

This week, he’s decided he can no longer drive. Due to his diabetes, Wal has had shots in his eyes to make him see better. But now since the cost of each shot is over $4,000 due to our crappy health insurance and the fact that his diabetes is no longer controlled in any way, he’s nearly blind in one eye. The last time we were out for a drive (I was driving) he realized he couldn’t see the pedestrians on the side of the road. He knew at that point that his driving days were over, but he waited a few weeks with no driving to finally say it out loud. He’s always been a person who really cared about safety of his work place, his home, and his family, so he knew he made the right decision. But it still hurt both of us deeply.

Wal can no longer read due to his vision. He listens to audiobooks constantly, thank goodness, but he does miss the act of reading. (And many of his favorite books are not in audio version.) Whenever he needs a prescription called in, I typically do it because he can’t see the numbers on the bottle well enough. Whenever we watch the national news, there are headlines on the bottom of the screen which I now read out loud to him. It really feels like we became an old retired couple overnight, you know?

Yet even with all of these small but significant losses piling up, we found something that made us happy and gave us both a little more freedom.

His first ride

These electric scooter carts in some stores opened up both of our worlds. Usually, when we go shopping of any kind, I go into the store and Wal either stays in the car or stays at home. One day, he was feeling good and went into Home Depot with me. There in the front of the store, were several scooters. He leaned on his cane and just stared at them. A lovely gentleman came up to us and asked if we’d like him to show us how to use them. Wal immediately agreed and before you know it, he was speeding along the aisles. We loved it! I was free to wander on my own and not worry about him, and he was finally able to browse like he used to. We were both in such good moods after our little trip. Neither one of us felt rushed, and in an odd way, it felt a little like when were first married. We were enjoying our time together, even while looking at light switches.

This past weekend, we went shopping with our son and Wal used a scooter in BJ’s Wholesale Club. Our son laughed with absolute joy by seeing his father zoom around. There was definitely some “man, he’s so old and decrepit” vibes, but it didn’t matter. It was good for both of us to see Wal have a little autonomy.

The emotional rollercoaster that is our lives rocks and rolls on. I hope y’all are doing better or at least not worse.

Hugs to y’all. ❤

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“I don’t think I’ll see another winter”

A lot has gone on in our little home over the past few weeks. We were told by the hospice nurse how my husband will die—one of two ways. A massive heart attack will take him out quickly or he’ll slowly die as his body fills up with fluid and both walking and breathing will be tremendously difficult. The latter is already happening but medications are still able to help with the fluid. That won’t always be the case.

He’s been having mild heart attacks all along, but we didn’t always know that’s what was happening. The nurse explained that the stomach ache, rib pain and chest pressure actually meant that the blood wasn’t flowing to his heart (or there was a small blood clot lingering about) and those blood vessels needed to expand to let the blood flow. A week ago he had all the symptoms and took a nitroglycerin pill for the first time. After a few minutes, all the symptoms went away. “I hate it when she’s right,” my husband growled. We both started to chuckle and sigh. But now he knows what to do and maybe he can live a bit longer.

I want more time with Wal, especially now because he’s laughing more and he wants to “do things” with me and with our son. Those “things” are now limited to taking rides and eating new foods or dishes he has always enjoyed. This is exactly what my brother did in the last years of his life, too. But if that’s all he can do, that’s ok. I’m along for the ride, no matter how long it lasts.

And yet even with that hope of a slightly longer life, we’d both rather see him have the massive heart attack. Not being able to breathe is horrible and watching him suffer is fucking awful. He’s already started to lose his freedom from not being able to get out much. Once he can’t walk, that little bit of freedom will go away completely.

Photo taken by Freddie in 2024

This week Wal agreed to a DNR (Do Not Resuscitate order). He knows that even if he’s brought back from a heart attack, he’ll never survive the recovery of CPR—broken ribs, possible punctured lung. He also knows that if he’s conscious, he can override that DNR and tell paramedics to try and save him. If he goes to the hospital and survives, he would be removed from hospice care. But he would have the ability to get back on it later. Everything is still his choice. Nothing is set in stone. That has given him a lot of peace of mind.

Now that Wal has been under hospice care for 31 days, he’s accepted that he will die. (We know we’ll all die yet we really don’t accept it, you know?) When he agreed to the DNR, I knew something had changed in him. He started talking about probably not seeing another winter, but hopes to see the summer. He’s reached out to several friends and had a few tough conversations. And I am so, so proud of him. He’s never been great about telling his friends how much they mean to him, but he’s starting to. I love him even more for that.

Folks have been asking how our son is doing. It’s hard, no doubt. There’s a lot of anger, sadness and frustration. But also a lot of love between the three of us. He’s an adult now and if he wants to tell his story, he can. It’s his to tell, not mine. I will say that he has an INCREDIBLE group of friends who are his family. Just like many of you are mine.

For now, we are hanging in there. Looking forward to warmer temps here in central Maine and for our little road trips filled with ice cream and snacks and lots of laughter.

Thank you for listening and for those that have reached out. If I don’t respond right away, it doesn’t mean I don’t appreciate you or want to talk. Sometimes I just don’t have the emotional energy. But I appreciate all of you. Love to you all. ❤

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Our Final Chapter

This morning I went for a long walk out in the lovely 50 degree temps. We’ve had a horrendous winter here in Maine, so I figured just the hint of spring would lift my spirits. I hadn’t taken a walk at all in the past week, so it should have felt like a treat. But within the first 5 minutes, my body felt incredibly heavy. I kept moving along which eventually morphed into trudging along. I got to a point when I really, REALLY wanted to take a nap. Right there in the road.

But I didn’t. I somehow made it back home (an encouraging text from a friend certainly helped). I stretched, drank water, then sank into my couch. And I haven’t moved much more than that today. I’m more than tired. I feel bone tired. Fatigued. Weighed down.

Two weeks ago, Wal was accepted into a hospice program. It’s what we’ve wanted/needed/hoped for. In the first five days of having hospice care, Wal has received better care than he has in the last 6 months. In response to finally knowing that Wal’s health shows that he will more than likely die in the next six months or so, we have had better conversations about what we’re both feeling about his health, his death, my future, what we’re both afraid of. It’s all so…real.

Even though I was expecting this to happen, it’s been so much harder than I thought it would be. At first we were both a little relieved and vindicated. We were indeed NOT gaslighting ourselves. Walter really is very sick and his heart no longer works the way it needs to in order for him to keep living an extended amount of time. But for us to be right about his dying, kinda sucks. Why couldn’t we be right about Powerball numbers?

Since the hospice evaluation, Wal and I have had beautiful conversations and sad moments and times of pure joy, too. Our boy has come home two weekends in a row, which has been  wonderful. Health-wise, Wal really hasn’t changed much, but now we know the truth. And now that we know, we’re trying to say everything we need to say and continue to fiercely love one another.

Wal has never liked to go on any big trips or anything like that, but he’s always liked kitchen gadgets and appliances. I put a kabosh on some of that shit a while back because why spend money on something you only use once then it ends up in the cupboard or basement? But…he always wanted an air fryer. And a few years back, I thought we shouldn’t get one for both counter space limitations and we didn’t need something to cook breaded foods that we shouldn’t eat to begin with.

But now I feel awful about it. So I ordered him an air fryer/toaster oven that came last week. I surprised him with it and told him it was so dumb of me to not get it and I started to cry. He hugged me and comforted me and said he always understood why and it wasn’t a big deal. But he was still happy that we got the air fryer. Along with the fries I bought to try the thing out. 😉

I’ve found myself riding waves of grief since the evaluation. That night, I felt such relief. My husband would finally be more comfortable and get more care and I could finally stop researching his symptoms. I wasn’t crazy. Wal was really, really ill. But since that night, I typically just feel sad. Or I’m easy to anger. I don’t sleep well. I’ve had multiple panic attacks, sometimes at 2am, sometimes in the middle of the day. I feel overwhelmed in multiple ways, hence the panic attacks.

But ultimately, I just want to figure out how best to support my husband in this final chapter of our lives. We started dating 31 years ago. When you’ve been with another person for more than half of your life, the story is long. It’s not always happy nor is it always filled with drama. But some of those “boring” chapters like talking about our day or eating dinner together, are what I enjoy most about this story. They are filled with laughter and mutual irritation of people we may have dealt with during the day and funny stories and reminiscing and sometimes exasperation with one another.

But there was always love. Even with any anger or irritation or frustration, there was always love.

And there will always be love.

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Grappling with the Past

I woke up thinking about my mom this morning. Actually…I woke up thinking about everything I did wrong with Mom during the last two years of her life.

I just began training to be a hospice volunteer. Much of our homework is reading about dying and watching videos about hospice care as well as the dying process. In just two weeks I’ve learned a lot about what actively dying looks like (which I witnessed with Mom) as well as what all of the signs actually mean. For instance, when someone seems agitated as they are going through the dying process, the person could have a full bladder, could be in pain, or maybe the music being played in the room reminds them of a particularly bad time in their lives.

I was with both of my parents as they lay dying. Much of the literature and information I’m consuming reflect my own experiences. Stories of people dying who talk to a dead loved one or reach out to something that you can’t see. (Dad saw his grandfather.) Stories of people dying after their spouse leaves the room or once their adult child finally made it to the hospital after they flew across the country to see them one more time. (Mom died less than 5 minutes after I left the room. My sister said it was because she was trying to protect me one last time.) As I work through the coursework, I feel like this is all in my wheelhouse–bereavement, dying, extensive grief, hospice care–these actions and feelings have defined my life for the past five years. I feel like I’m ready to listen to others now and be present for those families that are suffering and for that person in hospice care. And to be honest? Although I’ve set some boundaries in my life, I know at some point I may need to be my husband’s caregiver as he continues his congestive heart failure journey. That journey may end in hospice care. I want to be prepared and help him prepare for what that involves.

This morning, I started to doubt my hospice volunteer readiness. I watched two hours of videos yesterday about the dying process and Mom’s birthday is in two days, so of course she’s on my mind. But I felt sick thinking about Mom being in the memory care unit of the nursing home. I know she had many, many good days there, and I know I was not able to take care of her. (I tried but was not successful.) But what about once she went into hospice care? Why didn’t I bring her home? Could I have taken a leave of absence and taken care of her here? Would she still have died just three weeks after she went into hospice care, or maybe she would have lived longer?

I’ve been doing exactly what I tell people not to do. I have no idea how things could have been. She could have died sooner, or what if she lived even longer? Could I really have afforded to take a leave of absence? (I already know the answer is “no.” And if you’re one of those people who say, “If that was my mother, I would have stayed home with her,” then congratulations to you for not living paycheck to paycheck.)

Don’t second guess yourself, I tell people. I want to say I did the best I could with what I had, but I’m not sure that’s true. Tomorrow I may feel differently. I may be ok with how it all went down.

But today I’m struggling.