FLAREGIVING (v)- The act of caregiving while dealing with a Fibromyalgia flare.

FLAREGIVER (n)-A caregiver with a Fibromyalgia flare

I am a full time caregiver for Jack, who has dementia. I also deal with Fibromyalgia. Today I am handling both at once. This day has not been pretty.

I don’t often flare this hard. Over the years, due to diet changes and stress reduction, I’ve been able to achieve a certain level of remission, which means my flares have diminished and become more manageable. Until now. After fifteen days of dealing with pain and fatigue, it is obvious that I’m out of remission and will need to up my game. The old ways of staying well no longer work.

To be fair, I’ve had more stress, which is one of the main triggers for Fibro flares. I’ve been Jack’s primary caregiver for just over a year, and it’s not an easy job. Gruelling, at times hilarious, exhausting and hair-pulling—these are the ways I would describe it. It is also a thankless, heartbreaking task that rewards me in unexpected ways. But easy? No. If it looks that way it’s because I’ve had practice. A lot of practice.

Today, however, has been a real struggle. Not because of Jack, but because of the Fibromyalgia, that full-blown-flu, head to toe throbbing coupled with rock bottom exhaustion. The all over misery that would dissolve into tears if I allowed it. After fifteen days of functioning at this level, I would love to allow it, to drop in my tracks and howl. But I don’t. Jack needs looking after, and he no longer understands Fibromyalgia.

Jack doesn’t remember me being sick. (It is this lack of comprehension that makes everything about this flare feel worse.) He doesn’t remember doing chores when I had to rest, or giving me massages to help the pain. He thinks this is a new thing. He truly doesn’t understand why I can’t just ‘snap out of it’ or ‘shake it off’.  He doesn’t get that I need down time to recover. He doesnt give massages now. All he knows is that he needs my help RIGHT NOW. Nothing else makes sense.

“You were never like this before! What’s the matter with you?” he asks, repeatedly baffled by my inability to make this dragon disappear. “You need to snap out of it and get better.”

I would give anything to be able to just shake it off, to leave it behind me in the dust and move on without it. God knows life would be easier. It is hard enough being a caregiver, and hard enough having a flare, never mind handling both at once. It is harder still caregiving, managing a flare, and having a to do list that never grows shorter. Without a flare, I am up for the challenge and everything gets done. With a flare, everything still gets done, only I use twice the effort with half the energy. After fifteen days of flaring, I have no energy left. In this moment, I am too tired to care.

I am not one to complain, but today just sucks. Thanks to the Fibro misery, every request for help seems like the last straw. Being reminded of things that need doing feels overwhelming. All I want to do is hide in a corner and cry. In this moment, I am that tired.

But Jack needs feeding and looking after. There is laundry to do and meals to make, and a trailer that needs cleaning. Jack needs help finding things, putting dentures in, getting shoes on the right feet. He needs to know he will be taken care of. He needs ME.

So I take a deep breath and pull up my big girl panties once more. I power through the pain, the exhaustion that weighs me down, the ever present wish to just stop and crumble in a heap. I make myself do what needs to be done, because Jack no longer can. There’s only me now, and if I don’t do it, whatever ‘it’ is, it won’t get done. That is the reality, and today that reality sucks.

The good thing is, I’m still fighting. Just expressing how much things suck makes them suck a bit less. Once more, writing my truth has pulled me from the darkness and allowed some light in. My days won’t all be like this. This flare won’t last forever.

It was a simple matter of swapping air vent covers. All I wanted to do was take the broken cover, which I kept tripping over, and swap it with the vent cover under the bed. Easy, right? Except, like most things these days, it was anything but.

It began at lunchtime. I was in the middle of my soup. Jack had taken the broken vent cover out of the floor and was staring into the hole.

“It’s awfully dirty down there. You should stick your hand down there and clean it out.” he said. “Why don’t you do that?”

“There’s rubber gloves on the sink, dear. Why don’t you put them on and clean it?” I suggested. After a trying morning, I wasn’t in the mood for much. Jack pulled the gloves off the counter and tried to put them on.

“They don’t fit me. You’ll have to do it.” he said, tossing the gloves into my lap.

“I’m in the middle of lunch right now, dear. I’ll get to it later.” I said. Then I made my big mistake. “Why don’t you get the other vent cover out from under the bed?”

“We have one there?” Yes, dear. “Where is it?” Under the bed, just where you’re standing. Jack laboriously stretched himself out on the floor and stuffed his head under the bed.

“Is this your shoe?” he asked, holding it up. He tossed it over his shoulder into the middle of the floor. Then he pulled out a bowl. And a plate. And a crusted freezer container. “What do I do with these?”

“Give them to me dear. I’ll put them in the sink.” I stepped carefully over his legs and took the dishes, wrinkling my nose. By the look of them, they’d been there a while.

“Is this what you’re looking for?” Jack held up a slipper.

“No dear, we need the vent cover.” He held up a flip flop. I shook my head. He got frustrated and proceeded to unpack everything from beneath the bed, making a huge mess.

“What the hell are you looking for?” he finally demanded, after I’d shaken my head and repeated myself multiple times. I told him yet again. “Well, why don’t you just come and get it because I can’t find it.” I refrained from saying that, due to him lying on the floor, I could barely leave the table, never mind reach the bed.

“Do you see that vent on the floor?” I asked. He did. “Good. Take the cover off.”

“How do I do that? Show me.” Jack demanded, lifting the vent cover and waving it at me. “I don’t know how to do it.”

“You’ve already done it, dear. Thank you.” I rubbed my forehead, trying to fend off a headache. “Now take that cover and put it in the hole over here.” Jack promptly put it back under the bed. “No dear, we need that one over here. Can you take it back out?”

“I don’t know how to do that.” Jack said, taking it out again. “Where do you want it?”

“Put it on top of the bed for now.” I was trying to make things as easy as possible. Jack put it under the bed again. “No dear, on top of the bed. On top of the bed…Put. It. On. Top. Of. The. Bed. Thank you.” I got up, winced as Jack’s boot crunched my toes, and handed him the broken vent cover. “Put this in the hole under the bed.” Jack put it on top of the bed. “No, dear. Do you see the hole under the bed?” Jack nodded. “Put it in the hole.”

Jack put the cover in the hole. Then he looked at the massive heap of stuff scattered on the floor. “What do I do with all this?” he asked.

“Put it back under the bed. That’s where it all came from.” I said, dodging as Jack tossed my boot across the room.

“It won’t fit under THERE. You need to find a place for all your crap. You have too much stuff.” Jack grumbled, shoving part  of the heap back under the bed. Then he hitched himself along the floor on his behind, leaving the rest. “You need to clean the dirt out of here.” he said. I gave him a look. “Maybe I can get my hand in there.” He stuck his hand down the hole, scooped up wads of dust and dirt, and dumped them all over the linoleum. “You need to clean this up.”

“I’ll get the dustpan for you.” I got up, opened the closet door, and a box of pancake mix fell out, bouncing off my foot. I handed Jack the dustpan and sat back down, rubbing my foot. Jack looked at the dustpan and back at me. “I don’t have room to use it.” he said.

It has gone downhill since then. I am well into my Patience Toolbox, using everything at my disposal to stay calm. I’ve given up trying to get my own stuff done. For now that will have to wait.

Jack had his in home evaluation yesterday. It took an hour and a half. The caseworker, a friend of ours, was patient and thorough, especially when it came to evaluating Jack’s comprehension and his orientation to time and place. That was hardest for me, because he kept looking to me for help. I had to explain that I wasn’t allowed to help him.

Karen, the caseworker, started off with an easy question. “What month is it?” Jack looked blank and shrugged his shoulders.

“I don’t know.” he answered. “I don’t think about those things.”

“That’s okay. What year is it?” Same response. “What town are we in?…Do you know what state you’re in?…What is this place called, where you live?…What is the number of the space where you live?” Jack drew a blank on all of these. For the last one, he answered, “I don’t know. I just look for the trailer.” That answer told me how he orients himself to place. It was both reassuring and unnerving.

“What day is it?” Karen then asked. Jack’s forehead wrinkled as he thought.

“Let’s see…Monday, Tuesday, Wednesday, Thursday, Friday…I don’t know.” He thought some more, then his face brightened. “It’s today.” Karen smiled.

“That’s a good start. What is today called?” she asked him.

“Friday? I think it’s Friday.” Jack sounded unsure of himself, but he was right. It was a lucky guess. In his world, every day is just ‘today’.

“Now I want you to repeat these three words back to me.” Karen said. “Apple, penny, tomato.”

“Three words.” Jack answered. Karen nodded. “What are they?”

“Apple, penny, tomato.” Karen said. “Apple, tomato.” Jack repeated.

The questions continued. It was hard to watch Jack struggle with the answers. But it also ensured we would continue to receive help. At the end of the interview, Karen told us we’d been approved.

Several good things came out of the interview. One is that Karen will be sending someone to install a grab bar in the trailer, so Jack can get up without leaning on our rickety table. This man can also fix our damaged door, if Tim doesn’t do it first. I didn’t know they had someone who would do those things. I was planning to do them myself.

We may be getting more hours and more miles. That’s another good thing. Right now Jack is allowed sixty travel miles, which limits him to two out of town shopping trips per month. (We got a special allowance so Tim could take us to church on Sundays.) This means that Jack’s recreation is limited to going to the local beach or walking around the marina. He needs more opportunities for fun and for social interaction.

I told Karen this yesterday. Even though I do a lot for Jack, this is the one thing I can’t give him. I can’t take him to fun places like museums or fairs. I can barely take him out for dinner. I can’t give him the social interaction he needs to help keep him happy and active. It is the one way I feel like I’ve failed him. I’m hoping this will change.

The third thing is, Jack is now being screened for VA benefits. I don’t know how it happened. It has been on my to do list for literally months and I never seem to get to it. But three days ago, we got the initial application in the mail, and I immediately sent it back. It means a new boatload of paperwork but I don’t care. We need any help we can get.

The best thing, though, was my own light bulb moment. It actually happened before Karen came. I was rushing around the trailer, trying to get everything to look perfect, because I was afraid if it didn’t, I would be seen as unfit to care for Jack. (That fear has haunted me ever since I began this journey. I have always worried about not being good enough when it comes to caregiving.) I was stressed and anxious, and my anxiety was affecting Jack.

In the middle of my rushing around, though, my voice of reason suddenly spoke up. “Wait a minute!” it said; and I screeched to a halt. “Don’t you make sure Jack is safe? (Yes.) Don’t you make sure he eats, that he’s getting healthy food? (Yes.) Don’t you give him intellectual stimulation and help him to communicate? (Yes.) Screw the trailer and what it looks like. That has nothing to do with how well you take care of him!”

So I took a deep breath, sat down, had a cup of coffee, and left the dishes in the sink. I didn’t appologize for them when Karen walked through the door. And I learned something else that morning—that Karen was there for Jack. She didn’t give a damn about the dishes.

There is no ‘me time’ in caregiving. My life, except for brief instances, revolves around Jack and what he needs. This is the dementia’s fault, not Jack’s. The dementia has robbed him of initiative and motivation.

I see this many times a day. Like in the morning, when I’m making breakfast and he says, “I can’t find my shoes.” They are sticking out from under the bed, but he can’t see them, so he assumes they’re gone. “You need to find them for me.” I am supposed to drop what I’m doing and find his shoes.

Or he’ll be at the table with a bowl of dry cereal in front of him, and he’ll want milk. But he won’t get up to GET milk. He will sit there looking mournful and wait for me to notice he needs milk. Such is the nature of dementia. He doesn’t ask for milk. He doesn’t know that he can get it on his own.

All this is a roundabout way of saying that I need ‘me time’. But there is usually no me time even when I get some. My ‘me time’ is spent washing dishes, sweeping the trailer, changing the cat box, taking out trash, emptying holding tanks and putting clothes away. I don’t usually do anything for ME.

I’ve forgotten how to be alone. I used to love it. I often crave it. But when I’m alone, my time is eaten up by everything I can’t do when Jack is there. By the time I’m done, he’s back. So there’s not much chance for me to be, well, me. Unless he stays out longer, like this morning.

Usually, if I’m alone beyond the time it takes to clean, I find myself getting anxious. I wonder how Jack is doing. I wonder if he’s okay. I worry something has happened to him and wish he was back. I use up my time worrying until he comes back. Then I think, “Why couldn’t you have stayed out longer?” But that is because I haven’t used the time to refill my own well. It has nothing to do with Jack.

This morning, Jack and Tim went shopping. I fell into my usual routine of cleaning: cat box, trash, dishes, sweeping. I shook the rugs out. I emptied the holding tanks. I dried the dishes and put them away. I went and got the mail. I came back and hung all the scattered coats in the closet. I hurried through all these chores, expecting Tim’s truck to pull in any second. It didn’t.

I started getting anxious. Had something happened? Was Jack okay? Had they been in an accident? Where had they gone? Would Tim know if Jack got hungry? Should I text him and make sure everything was okay?

I didn’t text. I didn’t want to be a helicopter wife. Instead, I started making soup for lunch. I needed to do something to calm down.

I put some beef stock in a pan to heat. I added creamed corn and pinto beans and frozen mixed vegetables. I shook in garlic salt, ginger, rosemary, and lots of minced onions. I stirred it all together. I adjusted the flame and put a lid on the pot.

At some point, I suddenly realized I felt…peaceful. I felt content. I wasn’t anxious any more; I wasn’t worried about Jack. I was just there, at the stove, putting a soup together and humming to myself. I was happy. I stopped…I breathed…I basked in the moment, a moment I truly thought I’d never have again. For that brief time, I felt whole. I was in my skin, and I was…me.

I’m still here. I have no words to describe how precious this realization is. I thought I was gone for good. Caregiving buried me so deep that I wasn’t sure I could find myself again. Now I know I can. That gives me hope.

I am in bed early tonight. Jack and the cat are both snoring beside me. I’m lying here listening to the night sounds: the snoring, the heater cycling on and off, the gentle rain on the roof. The trailer is warm, dark, and mostly quiet.

This is my time of day. I crawl under the covers early, often as early as eight. After a day of looking after Jack, I usually feel pretty tired. This early bedtime is my way of unwinding. It can take two hours before I actually fall asleep.

Today there’s a lot to unwind from. Jack is up for his annual long term care reevaluation, and I have been up to my eyeballs in paperwork. I spent last week rounding up the exact same documents I’d sent in the previous year (don’t these people have computers? And don’t they talk to each other?) and faxed them all in, only to receive a letter three days later requesting I send in the documents. I finally got a hold of the caseworker this morning after two days of phone tag. This was the third call I’d made, and I hadn’t finished breakfast yet.

“You didn’t send in the document for John’s secured credit card.” the caseworker explained. “Once we get that, we can finish out the interview.”

I gulped a mouthful of coffee. “The reason I didn’t send anything is because he no longer has the account.” I said.

“Did you close it?” We had. “Why?” I wasn’t going to embarrass Jack by telling her he’d emptied out the checking account at Christmas. Especially since he was sitting right there. “Its a long story.” I said.

“Do you have proof it was closed?” she asked. “We’ll need documentation.”

“I’ll get it from the bank this morning and fax it to you.” I told her. That settled, we hung up, and I inhaled my cold eggs.

Then I tackled the next call. I’d unearthed a pile of mail from our medical supply company the day before and found we were two months behind on the bill. So I paid that off. But, “We can’t set up an automatic bill pay from here because your payment is different each month.” the gal explained. “Plus you have to pay the $2,000 deductible for Medicare. That bill should be on the way. You’ll have to call our main office and set the auto pay up over there.” I filed that on my ‘do later’ list and walked to the bank in the rain.

I got home with the papers and found Jack in a state of high anxiety. “You need to tell me exactly what you’re doing with my money and why.” he said, as a greeting. I took a deep breath, reassured him that our money was perfectly safe, and spent the next half hour in broken record mode, answering the same questions with the same answers seventeen times in a row. I finally got away for a minute to fax the (hopefully last) document and put another one in the mail for the VA. Then I went home to make lunch.

“What did you do with the money?” Jack asked, as soon as I got through the door. I bit my tongue hard enough to make it bleed.

“Nothing. I–” And we were off and running again, over the same ground. I finally distracted Jack with some soup. By the time he’d finished eating, he’d forgotten about the money. Until I picked up the phone again.

“Who are you calling now?” he asked. I explained as clearly as I could about setting up an automatic payment. “How much is it going to be? Why do we need it? Can’t we just give the machine back?” No, dear. It’s your nebulizer and you need it to help you breathe.

I was on hold for twenty five minutes. Every five seconds I was treated to a different recorded voice saying some variation of, “Your patience is appreciated. Please stay on the line and we’ll be right with you.” I doodled an entire skeleton sitting in a chair, phone clutched in one bony hand, the same recorded voice coming out of the phone: “Thank you for holding. Your patience is appreciated…” I added cobwebs and a large spider. I jumped when a voice said, “Good afternoon, this is LaVonne, can you hold please?” I waited another ten minutes.

When I finally got a person, the actual process took less than five minutes and I was done. Unreal. I made one last phone call and cleared that off the list. Then I composed an email to Jack’s caseworker, who is coming Friday for the in home evaluation.

I finished the email.  Sent it off. Convinced Jack not to eat an entire half gallon of ice cream. “I’m just having a snack.” he said. I ran up to the camp store and got a couple of light bulbs to replace the burnt out ones. Jack watched me replace them, shaking his head. “I don’t know how you do it.” he said, as if changing a light bulb was a huge deal. I guess for him it is. “How did you ever get so smart?” There was no way I could answer that question. I just shook my head and started dinner.

Now I’m in bed. I started typing at eight thirty and it is now quarter of ten. It’s time for me to end this missive and get some sleep. It all starts again tomorrow.

Tonight I’m not sure what to write. There is so much swirling around in my head right now that I don’t know where to begin. Or how. I am in transition in a lot of ways this year. Sometimes I no longer recognize myself.

Lately I find myself exploding into profanity over really stupid things, like flipping the eggs wrong in the pan (the egg folded up and the yolk broke) or tripping over the hole in the floor. Today I had a fit over a box of Good n Plenty when I discovered they are now using GMO ingredients. Such a small thing. But for me it’s a big thing, because Good n Plentys were my comfort food. Now I have to give them up because I’m getting sick every time I eat them.

But the Good n Plenty isn’t the real issue. I’m not sure what the real issue is. I’m not one to swear over much of anything, and every time I explode, it surprises me. Sometimes I don’t even feel angry (or else I’m not aware of it). But the words start spewing out of me: f-ing b*tch, c*nt, stupid a$$hole,—all those hateful words. They pour out like a river while my brain yells at me to stop, and poor Jack sits there looking shocked. But the words are never directed at Jack. They are only directed at me.

It feels safer to get angry at myself. That is something I don’t usually share. I can tolerate spewing venom at myself because I’m used to doing it. The problem is, when I’m caught in the anger, I can’t find any words strong enough to express just how useless I am, how clumsy and foolish and undeserving. That tells me that the anger might not actually be at me, because if it was I could articulate it clearly. I would know exactly why I was mad at myself and limit my anger to that.

I don’t get angry at Jack, because he can’t control what’s happening. The dementia is not his fault. But when he doesn’t understand something no matter how many times I explain it, or accuses me of showing off because I know how to turn the hot water on, sometimes it’s all I can do to keep from screaming. But not at him. I use all my strength to not get mad at him.

I am angry at the dementia and what it has done to my husband. I do everything I can to keep it from taking over, and he is still disappearing in front of me. This is probably the only place I can admit to how unfair it all is, how we didn’t ask for this. We had different plans, and this wasn’t supposed to happen.

Every time Jack loses ground, I have to learn acceptance all over again. It is a perpetual challenge that breaks my heart more often than I care to admit. It is hard to watch Jack struggle to grasp what used to come so easily; things like left and right, getting his shoes on the right feet, like dentures and hearing aids, zippers and belts. I help him with all of these now. Still, even though this helping has become second nature, some remote part of my heart grieves and storms and rages at the unfairness. This has been my life for a year now and I still can’t absorb the reality.

I am grateful for this blog. It gives me a place to put these hard truths, so I can clear them out of my heart and continue moving forward. I know some of my words are not easy to read. But they are honest and real. They share a journey that I never planned to make, never in my wildest dreams thought I would be living through. They help me to continue living through it, to find the strength to keep going. Writing has always been my salvation, and this is especially true right now.

But I don’t just write for myself. I write for everyone who is walking this same path, the ones who know the joys and the sorrows of caregiving. I write about the things that are usually left unsaid. I share those hidden things because I know I’m not the only one who feels them. And I know how it feels to feel alone.

A year ago today, Jack went in for the second of what would be many tests as we tried to figure out what was wrong. Ultrasound, CAT scan, MRI, PET scan—over a month long period we had all those and more. Jack’s neurologist was reassuring and thorough, at least until he had to deliver the news. Then he couldn’t tell us. He wrote the verdict on a prescription pad and handed it to me. I had to break the news to Jack myself.

“But what does it mean?” Jack asked, puzzled. I didn’t want to go into detail in the office. I needed time to absorb the news myself so I wouldn’t cry in front of him. So I swallowed the lump in my throat and patted his arm. “It means we have some things to talk about.” I said.

I got Jack into speech therapy to help with his communication. My outgoing, happy husband had withdrawn into himself and seldom spoke. He would sit on the edge of our bed for hours, staring into space. I wasn’t going to give up on him, even though I’d been told there was nothing I could do that would help.

I got a Power of Attorney form and a Health Power of Attorney form. I set up a guardianship in advance. I slogged through reams of paperwork and sat through mind numbing interviews to get Jack on Medicaid, since we were drowning in medical bills. I signed him up for in home help. I did his speech exercises with him every day. I worked in my spare time and tried to be a wife.

I had emergency gallbladder surgery in the middle of the whole mess. Three days after the surgery, the caseworker came for the in home evaluation. I did the entire interview in bed, in my pajamas, stoned on Percocet. I still don’t remember what I told her. But Jack was approved for in home care. We’ve had someone ever since.

To say this past year has been a game changer would be an understatement. I have had to learn to let go of almost everything in our relationship, because none of it works any more. I love Jack just as much, and I always will; but even though I am still his wife, he is no longer my husband. I still have a hard time adjusting to that.

I’ve learned that I can handle far more than I ever believed I could. Somehow, as my challenges have increased, my strength has increased as well. I’m still not sure how that happened, but I am perpetually thankful. I need every bit I can get.

I’ve learned that I can find humor even in the darkest times, even when I’m not trying to. Like the recent morning, for example, when I had the stomach bug. I was in the bathroom, throwing up and having diarrhea, and Jack needed help getting his dentures in. Then he needed help with his hooded sweatshirt. I was trying to talk him through the steps, answer his repeated questions, and hit the toilet with both ends, all at the same time. I will leave you to imagine what that chaos sounded like. l can assure you it wasn’t pretty.

That morning I felt more like crying than laughing. Especially when I emerged from the bathroom to find Jack sitting on the bed, his sweatshirt hood over his face (he’d put the shirt on backwards), and his dentures in upside down. He had plastered the teeth with Poligrip but couldn’t make them stick.

“I think something’s wrong.” he said, his voice muffled by the hood. I got his sweatshirt off and re-dressed him. Then I took his teeth into the bathroom to clean them, realized I was holding his teeth (without rubber gloves on, ugh), and promptly threw up again. I finished that, cleaned his teeth, gave them back, and sent him out to feed the crows. Then I collapsed on the bed, more than ready to bawl my eyes out, and laughed until my sides hurt. It was one of those caregiving moments I will no doubt remember for years.

I have no idea what lies ahead. My primary goal, though, is the same as it’s been since those first dark days after his diagnosis. This goal is to give Jack the best life I can, for as long as he is with me. Right now that means letting him set the pace as much as possible. It means leaving it up to him to decide if he wants to work or not, and letting him get up only when he’s ready to. It means trying to impose my schedule on him as little as possible, which is not an easy thing. It means laying aside any ideas about our future together.

But most of all, my goal is to accept him as he is, however he is. That is the one thing I can always control. No matter what happens, I will always tell him—and show him— how much he is loved. Hopefully, even though his mind continues to fade, his heart will still remember that.