caregiving

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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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Moving Forward

I rarely write about good things happening in my life. It’s not that they don’t happen, but they are typically what some would call “small.” For instance, I go to the gym and I consider it successful if I’m able to not only use all the machines I want to, but to slightly increase the weight or reps I do. Or I have a productive day at work with little drama AND I reach 10,000 steps on the same day. Or I get to spend quality time with my little family and it doesn’t end in anyone arguing.

Those are my “good things.” But as of this past week, I feel like my bucket runneth over! After over a year of not working and having both mental and physical tests conducted and paperwork filled out by the truckload, my husband was granted disability by the Social Security Administration due to his declining health. It’s a weird thing to get “congratulations” from people about it, yet it was the perfect thing to say! I might not need to sell my blood plasma anymore. Wal might not need to go to the food bank each week. I say “might” because bills still need to be paid and budgets worked out, but all in all we’ll be in a better place than we’ve been. Well…financially it’ll be a better place. And honestly, mentally my husband is in a MUCH better place. He’s feeling like he’s contributing to the family and not being a burden. It’s not that he was a burden but…it’s hard. There are days I come home and I just want to burn it down because there are dishes in the sink, poop in the cat box, mail in the mailbox and nothing for dinner. I’m tired and sometimes cranky, but I try to shut it down and just putter around the house and clean up the messes. Typically I know that if that’s what I’m looking at when I come home, then Wal had a bad day—either a lot of pain due to diabetes and neuropathy, or little energy because his heart is not pumping the way it should, or he’s horribly depressed because of his health situation. So I dig deep to find that empathy inside me and tend to whatever he might need.

As I said in my last post, my son will be attending a local university, the University of Maine in Orono. We made his confirmation and housing deposit on the day we found out about Wally’s disability. It’s time to get the kid ready to fly the coop and get his parents ready to live in an empty nest.

With two of our major life-changing events finally beginning, I feel like I am able work on me again. I really, really want to run or walk a marathon. I don’t think running one is really in the cards for me, so I’m starting to research both the walk/run method, and the power walking method. I want a physical goal to train for again. I want to feel particularly strong and proud of myself again. I mean…I’d love to lose 10 pounds in there, too, but Jesus, that also doesn’t seem to be in the cards! Being physically fit and healthy is what the goal should really be, right?

Sure. Yup. Right.

Anywho! I went out today and took a 4-mile walk with one little bout of running—only because it was snowing so hard into my face that it was painful. Although it was snowing, then blowing, then raining and finally ending with sleeting, I managed to mostly enjoy my walk. No dogs came out to try and attack me (that was two weeks ago), very few cars, just me and a bunch of birds that sounded particularly pissed off about the snow. I might be projecting, but they really did sound angry.

I got home, my hair partially frozen, my coat, hat, mittens and hoodie all soaked. And I felt…fantastic. Proud. Happy.

I’m enjoying days like this since they seem to be few and far between. Who knows, maybe there’ll be more days like this in the future.

I hope you’ve enjoyed your day, friends. With everything the world is facing right now, let’s keep putting one foot in front of the other, ok? ❤

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With the End in Mind

I recently finished reading Kathryn Mannix’s “With the End in Mind: Dying, Death and Wisdom in an Age of Denial.” Mannix tries to reveal love and resilience that presides in human beings, all through the stories of dying people.

My friend, Leslie, had recommended the book to me after lunch one day. We only see each other once a year, but we just had a mutual friend die (we miss you, Marcia!) and we wanted to see one another again. We started talking about my husband’s illness, living wills and death, and she mentioned how much she loved this book. We both had a list of books about grief and death that we enjoyed or learned from, so here we were at my favorite lunch spot, swapping death book titles.

It was honestly such a good lunch and visit.

But when I was reading “With the End in Mind,” I couldn’t read it quickly. I would put it down and watch tv for a bit or read a romance novel. I couldn’t take in everything she had to say. Then one evening, my husband asked what I was reading. I told him and asked if I could tell him one of the stories. He agreed with obvious trepidation.

The story was about a couple, husband and wife, and the wife was dying of cancer. Kathryn Mannix came to visit to offer information about hospice services, but the husband met Kathryn at the door and told her not to mention dying or hospice because the wife didn’t know she was dying. In the hospital, after the doctors told the husband, he just couldn’t tell her. He didn’t want to upset her. Kathryn warily agrees not to mention death. They go to the wife’s bedroom and Kathryn just asks how she’s feeling, does she like her view, that kind of thing. The wife asks the husband to get tea for the three of them. The husband doesn’t want to leave but does. The wife then tells Kathryn that she knows she’s dying but can’t tell her husband because she knows it will upset him.

It all gets sorted out and the couple is able to live more freely for the last of the wife’s days. She is able to communicate with her husband how she wants to die without feeling that she’s causing him harm.

The next night I read my husband another story from the book, about a man who was dying at the age of 60. He was afraid to tell his adult daughters but was finally able to before it was too late. The women were able to say goodbye in person.

I think I ended up reading three stories to my husband. He became a bit more receptive to them, and with that, I found the courage to ask him to talk about his own death. Like my dad, he wants to die in his sleep, but he thinks it will be more like a “shit show.” We talked about his decline over the past year and that how he’s been physically feeling absolutely sucks, but he could still get his wish of dying in his sleep. Like many people, Walter wishes he’d feel good most of the time but die suddenly while sleeping, hoping to negate some of the pain and fear. But from what I’ve seen, dying typically doesn’t happen like that. It’s a process, one we’re all currently in, but his process is quicker than the average 57-year-old. I won’t say he’s actively dying, because that term is used for someone who has only hours or maybe days left to live. But he’s on the decline, still has a few years, maybe even 5 years left.

Even if Walter has 1, 3 or 5 years left to live, I still want him to live a good life, his version of a good life. I know for some people that would include travel or visiting friends or hiking a mountain. Or if physically you can’t do some of those, your good life could include cooking your grandmother’s beef stew recipe or reading Les Miserables by Victor Hugo. That last suggestion was what my brother did. He wanted to make sure he read Les Miserables before he died, and he did. He also wanted to travel, but instead he “traveled” through eating new foods from other countries and trying out recipes he never had before.

My husband’s version of a good life is more to the tune of playing Spaceship Engineers on his computer, listening to Patricia Briggs’ audio books, watching the occasional movie or television show with me, and taking part in conversations with our son about the state of the world and what our son’s part will be in it. And those are things I hope he can still do for as long as possible. We’ve had a horrid two weeks with him sleeping 18 hours a day, but much of that was due to mental health. That seems to be much better now, so my hope is that he’ll stabilize and be ok until at least our son’s high school graduation in June.

You know, though, after reading some of those stories from “With the End in Mind” out loud, my husband expressed his worry about me. Something I didn’t know. He knows I’ll be here for him as he transitions from life to death, but who will be there for me? He knows I’ll never marry again and we don’t expect our son to give up his life to care for me (although I hope I live near him if possible). Will I end up in a nursing home? Maybe. (My son and I saw a really fancy one last year near George Washington University in DC, and I told him he could put me there. 😉 ) I then reminded my husband that yes, I might end up in a home, especially if Alzheimer’s hits me like my mom. But that I also had a pretty incredible support system, especially these women you see here:

While we were in Belize, my friends and I often started a sentence with, “In this scenario, all the men are dead.” We’d describe how we’d live close to one another but probably not with one another. How we’d travel together, be there for one another more than we can now. It might sound a little morbid or maybe disconcerting to the men in our lives, but it gave me such comfort to have those conversations. Whether those scenarios really happen, we’ll have to see. But no matter what, I know I’ll always have people to guide me, hold my hand, and help me figure my future out.

Friends, please, don’t wait to have conversations about your future, your life or your death. Have them now, while you are still able. Make out a will and living will. If you can’t talk to some people in your life, write letters to them to express your gratitude and appreciation, or even just to express what you hope their future is and maybe even what you hope they’ll remember about you.

These things matter. They really do.

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Hope for the Heart

It seems counterintuitive and a bit sadistic to hope that your spouse is sick enough to go the hospital. But that’s where I’m at.

Congestive heart failure (CHF) is like any terminal illness in the fact that you will one day die from it. Unless, of course, something else gets you first—a car accident, a horrible fall, or another illness. (Isn’t this a cheery post?) But CHF is different from, say, cancer. When people hear the word “cancer,” they understand that it’s serious but it also doesn’t mean a death sentence. I have friends who have survived cancer (Love you, Heidi!) and I do mean survived. They often go to hell and back and the physical and mental scars stay with them forever.

CHF however, IS a death sentence. There are devices some people can have implanted into their hearts like a pacemaker or a defibrillator, that can extend one’s life. If the person is particularly “lucky,” they can have a heart transplant if one is found in time.

But many folks, like my husband, only have medication to keep them alive. When you have other diseases or illnesses along with CHF, like diabetes, you walk this fine line of balancing your medications, your insulin, and your nutrition. I watched my brother walk this line for nearly a decade, until his heart finally gave out. There is only so much a person’s will can do with a failing human body.

“Heart” by Donald Patten. A Belfast, Maine artist.

My husband has had a bad week. He’s slept more than he’s been awake. He’s had two decent days where he was able to visit his mom on one day and meet his new doctor on another. But the other days? Higher blood pressure and heart rate than his normal, fatigued, and body pain—all symptoms of both CHF and diabetes. Add in a large dose of depression, and you have a man that is miserable and a family that is feeling a little lost (and eating our emotions. I think the kid and I have both gained weight this week.)

It’s possible Walter is fighting a virus of some sort. Both my son and I were sick at some point over the past two months, so maybe we passed something on to him. Hopefully in another week he’ll feel better. And most likely he will. But yesterday, as I watched his blood pressure increase throughout the morning before I headed to work, I was…excited…to think that he might go to the hospital. Sounds fucked up, right?

I immediatley unpacked that feeling and knew where it came from. If Walter is in the hospital, that means that someone else has to care for him. It would be someone else’s responsibility to make sure he was ok. Not mine. All I can do is make sure he takes his meds, feed him if he’ll eat, make him tea, help take his blood pressure and cover him up when he sleeps. There may be some nagging strewn throughout the day, but that’s a given. 😉

At some point, I expect to stay home with Walter a lot more. In that scenario, however, he will be in hospice care. What I’m trying to understand, is why I know I would feel more comfortable taking care of him when he’s dying, rather than right now when we’re trying to keep him alive.

Maybe because I don’t really know where my husband is at in terms of his health? How long does he really have? Is he in stage 3 or 4 of congestive heart failure? (Depending on the day, I can’t really tell.) Am I able to keep him alive and what kind of life is he having? Is he happy with it? Although he probably won’t die for another 3-5 years, I think I need him to say the words, “I know that I am dying a slow death.” He’s said that in other words to me, like knowing he won’t see me retire one day. And maybe that was the one time he was able to say that he knows he’ll die sooner rather than later and I should just accept that

I’m comfortable talking about end-of-life care, including my own, but he isn’t. And maybe because he’s closer to it than I am. Which I do understand. But…this is me. His wife of over 27 years. We’ve known each other for over 30 years. We’ve been through a variety of illness between us, through deaths of family and friends, new jobs and lost jobs, raising a child. To be honest, if he doesn’t talk to me but talks to a therapist, then that’s ok, too! I would LOVE to see that and have encouraged it. But that’s not happening, either.

So…what to do?

I just don’t know. But it is another day. A NEW day filled with potential. I write this as my family sleeps, so there’s still hope that it’ll be a better day than we’ve seen this week.

So let’s end on that, shall we?

Hope. And sunshine. And kittens. Let’s throw in a margarita, too, ok?

Hugs to you, my friends. ❤

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Caregiving vs. Self-Care

When you’re taking care of someone, it feels much like being their parent. You worry about them more often than not. If they don’t feel well or are having a rough day, you feel like they do. And when they admit their fear about what’s happening to their body and their life, you feel just as frightened.

This weekend has been another rollercoaster ride for my household. Our son had his wisdom teeth out on Friday and yesterday he was just ok, but this morning he was in pain and had been up most of the night. Wal had gained 2 pounds overnight, which is not a good thing when you’re a heart patient. He also didn’t feel very well much of the day. I didn’t feel good when I got up, but I kicked into crisis mode after realizing my son was hurting and my husband wasn’t well. Got the kid on a pain med schedule and my husband already took the medicine he needed to work on the extra fluid in his body. So although I didn’t feel great, I went for a run in the heat and humidity anyway. I needed to physically put one foot in front of the other so I could do it figuratively when back at home.

At one point this afternoon, both my husband and son were napping. It reminded me of the times when my boy was a baby and although they always said to nap when your baby naps, I would always clean. Which is exactly what I did today. I listened to an audiobook and swept and mopped and cleaned bathrooms and did laundry. I get like this. It’s like I’m preparing for the next crisis, so maybe my house will be clean when it arrives and I won’t feel as much stress.

Folks talk about self-care and have really been driving that home to me over the past two weeks. And maybe I should have rested when my family did. But in my own quirky way, cleaning the house was taking care of myself. I love that when I walk on my kitchen floor now, my socks don’t stick to it. 😉

Once my son was awake, he felt a bit better. I gave him some yogurt and he planted himself at his computer desk to play a video game. I checked on my husband, who was still napping, then made myself a margarita at 4 o’clock in the afternoon. Might not be the best choice of things to do, but I curled on the couch with a book and my drink and relaxed for 15 minutes. It was pretty fantastic.

But then I got up and checked on my husband again. He had been sleeping for nearly 2 hours at this point. I watched his chest to make sure he was still breathing—-just like I used to do with my son when he was an infant. Wal started to stir and caught me staring at him. I asked if he was ok and he said yes and wanted to know the time. I told him and he said “ok” and rolled over. I figured he’d get up in a few minutes, so I went to the kitchen and started making a salad. An hour later I went to our bedroom again. I was trying not to freak out. He woke up this time and we both wondered aloud, “Is this ok?” Is taking a long nap alright? Does it mean something besides being tired?

We are stumbling along this path, not fully understanding where to go or what to do. Everything keeps changing. His blood thinner meds have changed every few days because his blood wants to clot and right now that’s not a good thing. We weren’t really sure how much sodium he’s allowed to have until a friend whose husband went through this last year gave me an idea of what the amount should be. And just today I found the answer in his pile of paperwork he came home with. (I thought I had read it all but obviously didn’t take it all in.)

This all still feels…surreal. Exhausting for sure, and unfamiliar yet a bit familiar at the same time, but not enough to actually know what we’re doing.

For now, we’re doing our best to take things one day at a time and one issue at a time. We’re also still trying to enjoy the little things that bring us joy. Whatever they are. I hope you do the same, friends. Live in the moment if you can. ❤

A few nice moments this weekend.

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Anger Management

This past week has been filled with nearly every emotion that exists. Fear, surprise, sadness, guilt, frustration, grief, joy, and anger. These were all felt by everyone in my home and they continue to ping pong from one to another in each of us every day.

On Saturday, I spent the morning with my husband at the hospital. I crawled into his hospital bed, we held each other, and I cried for the first time since he had his heart attack. They were tears of relief but also fear of what the future will bring, and even grief for what he has lost. His life, our lives, have begun to change, and the changes can be difficult. But necessary.

The husband came home on Sunday afternoon. As we waited for someone to bring us a wheelchair, I scrounged the hospital floor, found a chair with no owner, and snagged it. I was done waiting and this guy needed to be home! It was kind of fun–like we were breaking out of prison. We laughed and waved to the nurses and enjoyed the moment. But on the way home, I could feel little bits of anger escaping. I snapped at him for telling me where to go then again when he said I didn’t pick up one of his meds when, in fact, I did. “You wouldn’t know because you were in the hospital!”

Oh.

Then I went to the pharmacy to pick up his new medications…10 of them. TEN. The pharmacist wanted to speak with me since these were all new. We had gone over all of them with the nurse so I basically knew what to expect and what he had to stop taking at home, but as the pharmacist started to tell me how Wal can no longer take ibuprofren for aches and pains and if he does need to take a nitroglycerin that the package is only good for 3 months after you open it and he (or I) would need to put it under his tongue…I started to cry. Could this be any more overwhelming? The pharmacist looked at me and said, “I know. It’s a lot. I had to do this with my father, too.” I just nodded but inside I was scoffing and yelling, “But it’s my husband, damn it!!” She went on to say I should probably keep a list of his meds and I said that yeah, I had done this with my mom so I was good.

I was so not good.

Once we got home, Wal went directly to a rocking chair we have in our library where our son has his computer. They sat together and we all talked. It was ok. We were ok. But as the evening went on, both my son and I were harboring feelings of anger, maybe resentment that Wal had put us through this again? I’m just speculating because I really don’t know what I’m feeling sometimes. I know that our son was being kind of a dick and I was flying off the handle at the most foolish things. And yet I was also trying so hard not to yell or upset my husband at all. But I could not be calm. I think I had kept my cool throughout this entire event (thanks to the support of my friends) but now that he was home, I could truly lose it…for a little bit.

But I felt so incredibly stressed and overwhelmed that night. What was he going to eat? What could I cook for meals? I put together a few snacks and salads for all of us, then realized he can’t eat leafy greens or broccoli because of his blood thinner. He can only have 8 cups of liquid a day, so let’s make a little chart for that. He’s diabetic so needs to eat as few carbs as possible.

Oh. My. God.

I spent the rest of that night cooking meals ahead for mostly my son and I and making snacks for my husband. I tried not to hover, but any kind of noise he made I asked him what was wrong. I didn’t sleep well that night because I was afraid he wouldn’t wake up again.

I needed to work all day on Monday, so after running my husband to the lab to have bloodwork done, I went to work but called home 4 times just to check on him. He is sad and scared and frustrated, too. Facing your own mortality must be some scary shit to deal with. He wasn’t awake or very aware of that fact last year, but this event is completely different. He felt himself dying this time.

Yet when I took Wal to our doctor on Tuesday, one week since his heart attack, I found myself getting angry again. He doesn’t think he needs to have a biPAP machine (he was not able to get one before he left the hospital). Since he’s slept well for a few nights, he thinks it’s ok. I did tell him that, in fact, he stopped breathing the night before, which why I had been awake since 4am. This has been a near daily occurrence for the past umpteen years, but since he nearly died the week before, I’m hyper aware of every little sound or movement his body makes…or doesn’t make. Once our doctor insisted that he seriously think about getting a biPAP did Wal concede that it might be a good idea.

*insert silent scream here*

Each day this week and part of next, I’ll take Wal to various appointments, work when I can, and will take our boy to have his wisdom teeth out. Most of our meals will be made by various friends, restaurants and an online premade meal service. It’s one thing we’re hoping to stop stressing about, at least for a few weeks. We’re all trying to find little things that bring us joy or peace. Our son had a friend over and they played video games and talked to other friends and just enjoyed themselves. My husband has been watching YouTube videos about camping…he has no desire to camp anymore but loves watching others do it, and playing Space Engineers where he gets to build his own space stations. That brings him a sense of accomplishment and happiness. I have been taking walks when I can while listening to fun podcasts and started running again after taking a few weeks off. Typically reading calms me and lets me escape, but I haven’t been able to concentrate on much. Today was the first day I’ve been able to get at least a few pages in and actually enjoyed it.

As we go about our day, none of us seem to be at the point where we forget Wally nearly died. Our groceries look different, the calendar is covered with appointments, and our phone rings more often with check ins and reminders of said appointments. And even the mail. Today’s mail was a lovely mixture of kindness–an encouraging card for both Wally and I from a dear friend–then a letter from the hospital with a different type of encouragement–to make an Advance Directive. That little piece of mail was such a kick in the ass. First because…holy shit. If anything can remind you of your mortality it’s someone telling you to get your shit together before you have another heart attack. And second, because the man already has one and they should have had it on file!! (I had to bring it to the hospital last year when he was in a coma.)

Thanks to all for your incredibly kind and uplifting words and thoughtful gifts. We have a long road ahead of us– physically, mentally and emotionally. I will need to work harder on trying to support my husband and to understand what he must be feeling. I am also aware that I need to take care of myself. I haven’t been great at it before, but I think I’m getting better. I am finding little moments that I take as mini vacations for my mind. Like these photos:

As I waited for my husband at an eye appointment today (yup, he can’t see well out of one of them due to diabetes), I found this little garden hidden behind the office. Pretty sure it was meant for the staff, but no one was there so I took the opportunity to sit in the sun, read a bit, take a few photos and just breathe.

That’s the key, right? Find those moments you like and suck every bit of life and love and joy from them.

So go hug, kiss, touch someone you care about, then find a few of those mini vacations for your mind.

We have to keep living one day (or moment) at a time. We just have to.