My Caregiver is Traveling – Confessions of a Zebra

My Caregiver is Traveling – Confessions of a Zebra

For years I’ve attempted to get my husband to engage in activities that don’t include me, or my son, for that matter, so that he can have some free moments to just be Tim. Not Tim the father, Tim the duck and chicken caretaker, Tim the family chef or Tim the partner. Just Timothy Lenox Smith. But whenever I offered to stay home with our son so he could go out with friends or make a plan, the reasons were always the same: I don’t need to go out with guys or spend a weekend away from you two, I love spending time with you…I love my family, why would I want to be away from you?

Ah yes, I have a chivalrous spouse who truly finds happiness in the weekend trips we take throughout New England, the drive down to the nearby bookstore, or dinner out to a vegan restaurant. The truth is, neither of us have a group of men or women that we get together with, or even couples that we meet up with; we’re completely satisfied with the company we provide one another. Even though I know his preference is to make a family plan when we have free time, I have always had this thought in the back of my mind that he’s giving so much of himself to us that others aren’t able to enjoy the kind-hearted, intelligent being that he is.

Shaina Smith

I should probably mention here that Tim and I married over 10 years ago and at the time, I did not have chronic pain. For two years he had a wife who was able to lift objects, clean the house, take the dogs for walks and go on jet ski rides. For the last eight years, however, he has gracefully taken on the role of caregiver, father and husband.

Now, back to present day where I find myself delighted that Tim has accepted an invitation from his cousin to take a vacation. Tim has been hiding his anxieties as best as he can, but I know he has mixed emotions about leaving. The first step I think Tim had to take when presented with this opportunity was to wrestle with the notion that the loves of his life, both with chronic diseases, would be in charge of the home and caregiving for themselves. That’s a lot to take in for a man who worries if I don’t pick up the phone mid-day when he calls. (In his defense, I do have bad days from my autonomic condition, pain or migraines which have all caused me to stop what I’m doing, put my ringer on vibrate and lay down.) This had me thinking that perhaps Tim isn’t the only caregiver who would like to travel or engage in an activity, but they fear what would happen to their loved one with chronic pain if they were to indulge in much-needed self-care. That being said, I will now gift you my life hack list for the caregiver and pain warriors who may find themselves in a similar situation, where the caregiver may be considering taking a trip or a short adventure.

Open that line of communication
I get it, we all want to have some sliver of mystery in our relationships, but when it comes to living with a chronic disease, you need to be upfront and honest about what you’re feeling, when you are feeling it. The same goes for the caregiver, who is grappling differing, but equally significant challenges. It’s okay for either pain warrior or caregiver to feel that they need a little break from reality, the day-to-day obstacles that, if not balanced properly, can consume and take over every waking moment of your lives. Whoa, was that too grim and dark just then? Sorry, I’ll try to be mindful of not being too downbeat, but chronic pain can take us down that path at times, so take my virtual hand and let’s press on. While I adore my husband, his companionship and selfishly his physical ability to lift the chicken feed and dog food into their containers, I also enjoy the quiet moments I get to spend alone or with my son. When his cousin asked if Tim would like to go on a cruise, Tim didn’t automatically turn him down, and I didn’t automatically shake my head ‘no’ or give out a sigh. We talked about what measures we would have to take to make this trip work; we spoke candidly about any possible challenge the trip would bring about. I was proud that we disclosed our thoughts so well! This brings me to my next life hack: over-planning.

Over-plan and over-think (I do this on a regular basis!)
In our particular case, we had to think realistically as to how I could work full-time, care for our son and animals (AKA the mini sanctuary), remember to eat and make meals for ourselves. Before committing to the vacation dates, Tim called a mutual friend and asked if her schedule would allow her to lend a hand. That was planning 101 at its finest!

While you may not have to worry about lugging gallons of water out to a barn like me, you may have to plan for carrying out activities usually accomplished by your caregiver. Making a list of tasks that may be challenging while your caregiver is away might help you assign those tasks for another family member, friend or neighbor. Remember to account for the possible pain flare-up that may happen during this time. Go through a week’s worth of typical household responsibilities in your mind, jot them down and ask if your caregiver could complete those heavy lifting tasks before they leave.

Are there commitments you can reschedule to lessen the obligations you’ll have while your caregiver is away? Are there behind-the-scenes actions you carry out as a caregiver that you should make your spouse aware of, in the event of an emergency? Think of worse-case scenarios and plan ahead! For example, should the power go out while Tim is away, our friend is on-call so she can start up the generator and shovel a path out to the animals. Tim also asked a neighbor with a plow truck to drive by after a storm to see if we need to be plowed out. This is planning 2.0!

Ease each other’s minds
You need this. They need this. Be kind to one another when there’s an opportunity for one of you to step away from the life of a couple who juggles with chronic pain’s challenges to recharge the mind and body. Present opportunities for each other, without strings attached, so that your partner feels confident they can step away for a while. When the day comes for your other half to tuck away the caregiver title, deter from negative comments, thoughts or guilt trips. Their taking a breather does not mean they love you any less. In fact, it shows how much they’re committed to you. They need to care for themselves so that they’re in their best physical, mental and emotional state to be your support system.

Leading up to and even the day of his departure, I’ve been acting casual with the fact that Tim will not be here for ten days. That’s a long time for anyone to be away from their spouse, let alone a caregiver. But we’re going to be fine. How do I know? Tim and I planned his parting together. Spare house and car keys will be left for friends and family to pitch in. Meals will be prepared ahead of time as much as possible. After school care has been secured, should I run into traffic following a work meeting. Tim will be turning on his phone while at sea three times per day and calling at 7 pm each night. I’ll have the ship’s name, his room number, and the first born of the captain. Okay, maybe I won’t go that far, but you get the point: we’ve prepared for as much as we could to make sure Tim can truly enjoy his time abroad knowing his family will be cared for.

Bid your caregiver and worries farewell
Saying goodbye might be the hardest part of your entire process because for many of us, this may be the first time we’re away from our caregivers. In our case, Tim and I both travel for work and we are used to being apart for a few days. Others may have never experienced sleeping alone since being diagnosed with their chronic condition. I can tell you that you will be alright if you plan ahead, and this is coming from a woman with health-induced anxiety and panic disorder who worries about being decapitated while driving too closely to a truck with a ladder in its bed. It does take patience, practice, sometimes coping mechanisms (CBT skills acquired from a licensed therapist), affirmations, meditation (there’s a ton of free apps available!), a long phone call with your best friend, or maybe even a pint of ice cream. Hey, whatever works! I won’t judge.

Finding coping tools will help keep you become grounded and confident enough to let your caregiver practice self-care and relieve some of those anxieties of being on your own, your own caregiver. Oh, and I forgot to mention that self-care for the caregiver doesn’t need to equate to a week-long trip; some may find solace in a two-hour painting class, a daily one-hour trip to the gym, a book club, or trivia night with friends. Caregivers, please know you don’t need to feel bad for wanting to partake in activities that don’t include us. I think most of us pain warriors get it and understand. And if we don’t, talk to us openly and truthfully so that we’re on the same page. In the end, all we want is to be able to return the favor, the sacrifices you make for us. Let us ensure you remain happy, healthy and ready to continue being a part of our pain journey, because we love you.

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Authored by: Shaina Smith

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Shaina Smith

Frattini Mark A: You are not alone, despite moments where you may feel that way. I am sorry that you are not surrounded by immediate support, but please know that many have found comfort from outside networks. A lot of people have embraced the option to find a tribe which will understand your disease and/or what it means to to live with chronic pain.
It’s difficult for caregivers to see their loved ones different from the person they used to be, the man or woman they married. It helps me sometimes when I don’t receive the type of reaction or support from friends or family I’d desire, to remember that they did not get a manual on how to be a caregiver, much like we weren’t given a guide book on how to be a chronic pain patient.
Some people have found it helpful to have the caregiver present at doctor’s appointments where the medical specialist can speak to the validity of the patient’s condition, symptoms, etc. Support groups, articles and open lines of communication with caregivers are also a few resources some have used from their self-advocacy toolbox.
Sending you well wishes, positive thoughts, and healing vibes your way; let me know how else I can help you on your pain journey.
Best,
Shaina

Louis Ogden

To Shaina Smith,
That’s a lot of work to respond to the comments. I appreciate what you have said. She even likes to hear my guitar work (mostly blues) and I play some keyboard as well – know that I am no pro but music is my therapy. We still go to concerts but at our age (I’m 68 and she’s 66) we drive to the venue the day before and get a hotel room, see the show, then sometimes even stay a third night to catch up on rest. Just in the last year we have seen Steely Dan, ZZ Top, John Fogerty, John Mayall, Chris Thomas King (up and coming blues artist), and last but not least the prog rock band Kansas. She goes out about once a week to have lunch with former workmates and I encourage that. Thank you for your kind personal response.

Shaina Smith

Janelle: I’m so sorry to hear of your loss during your pain journey years ago. On the up-side, aren’t dogs absolutely incredible creatures?! I love ours and they provide an unspeakable bond and love that helps get you through very difficult moments that come with the territory of being a pain warrior.
I’m so glad that you found devotion and unconditional love through your animals. They are so much more than pets–they’re family. Also, your imagery about society treating us like we have multicolored polka dots on our bodies is so true! I just recently experienced this with my son because he didn’t look like a ‘handicapped’ child in need of a specialized shopping cart.
Luckily, organizations like U.S. Pain Foundation are working tirelessly to erase the societal stigma too often associated with chronic illness. I say this all the time when speaking about the advocacy work I carry out, but it’s true: advocacy is not just business, it’s personal.
Here’s to days when we will no longer feel like polka-dotted people!
Side note: I love polka dots!

Shaina Smith

Kim: What a great partner you have found to support you on your pain journey! I agree that there are many who do not have what you and I have and it is disheartening. While I had my husband at the onset of my pain, I also felt alone. It wasn’t until U.S. Pain that my mixed emotions, feelings and pain were all validated. I think it’s important for those with and without loving caregivers to find others who will lift them up, recognize their disease is real, and offer hope.
If there is anyone reading this comment who may feel they are struggling because they do not have a caregiver or believe they may be lacking additional resources and support, to go find it outside of the home. It’s out there, we’re out there. We are not alone.
Have a wonderful evening and thanks again for reading my article!

Shaina Smith

Billie:
I’m truly touched that my writing has opened up your eyes, but please be kind to yourself and don’t judge to harshly. You have been the one caring for others for so many years. It’s difficult for anyone to hand over the reigns. I also want you to know that you can and do take care of people and be there for them when they need you, it just might not be in the same manner as it used to be. Being a shoulder to cry on, a good listener and loving others are all things that still make you a caregiver.

Small acts go a long way, and it sounds like you’re the type of person who would be the first to offer a simple, yet meaningful gesture to loved ones. My husband appreciates when I have the energy to load the dishwasher or even setting the table for dinner.

I am also very bad at asking for help, but I’m learning. My husband keeps reminding me that he has no issue with doing more if I just ask and let him know that I’m having a bad pain day, low blood pressure day or experiencing extreme fatigue. I try to do as much as I can without having to ask because I’m a very independent woman, but I’ve learned that it actually hurts both of us if I fail to ask for help. It sounds strange, but if I overdo it, that means I’m usually in bed early and we don’t spend quality time together in the evenings. Failing to ask for help can cause me to miss out on a family day. It takes practice and a lot of work, but putting aside my stubborn tendencies makes for a more balanced family life.

I wish you luck as you continue down you pain journey and have confidence that you’ll be able to remain a caregiver in your own unique way for loved ones, while also recognizing it’s okay to ask for help.

Shaina Smith

Heather: I’m so glad that you found the content helpful and validating. In my opinion, it’s smart to run a few scenarios through your mind so that you have thought of all the “what-if’s”, especially if you are putting yourself in a new environment or experience. I admit that some of my over-planning is the result of my panic disorder and anxiety, which is why I’ve found it extremely important and helpful to recognize the rational from the irrational. It’s hard to do sometimes and it’s a skill I’ll be working on for the rest of my life, but I try asking myself questions to help me determine if I’m over-thinking without justification or if I’m being a really good pain warrior planner.
A few questions I ask myself are:
1. What is the worst thing that could happen?
2. Has that worst-case scenario ever happened to me before? If yes, how did I overcome it? If no, what is the likelihood that this scenario would take place?
3. How can I plan/prepare in the event that my fear comes true?

Here’s a scenario to go along with these sample questions:
1. I’m afraid I’ll pass out in public because while I’m with my young son.
2. No, but I have been symptomatic while my son was with me.
3. I can teach my son how to use my cell phone, dial 911 and tell others around us that I have Ehlers-Danlos Syndrome and POTS. I can wear my medical bracelet. I can stay home if I’m feeling symptomatic and not push my body.

I admire your bravery in sharing your pain journey and thank you for reading this article!

Shaina Smith

In response to Cindy’s comments:
Thanks for reading! In all honesty, it’s difficult working FT, being a mom and living with chronic diseases. I can only say that each person experiences their condition(s) differently. I consider myself a high-functioning pain warrior; I can dress myself, shower. I rarely find the time to write articles; this was a rare occasion where I found the time because I thought this was a timely and relatible topic for some pain warrior/caregiver couples. Normally I’m conserving my energy so I can help my son with homework, feed the dogs, etc.
I am able to dress myself, shower (though it’s SO much effort so I don’t wash my hair daily…TMI?!), and drive to pick up my son from school. I know I’m extremely lucky to be capable of these things. I do, however, experience days where extreme fatigue hits, the migraine monster visits, chronic pain worsens, or my blood pressure drops.. Yes I work full-time and I also crash behind-the-scenes…occasionally I’ll crash center stage, but my U.S. Pain family is very understanding.
You mentioned traveling and yes, traveling is tricky! I limit how often/frequently I travel; I fly in the day before a meeting/conference/summit and, if possible, fly out the day after so I’m not pushing my body. I try to be mindful of not just traveling, but when making commitments and realizing that I’ll need to be flexible (outside of EDS flexible!) should my plans need to change because of my conditions. For example, the other night I missed out on a dinner with family from out-of-town because I was recovering from the migraine and needed to conserve as much energy as possible so that I could take care of my son the rest of the night.
It’s not easy, but advocating for children and adults is such a personal and passionate topic for me, which is why so many of us push through the pain to work alongside volunteers.
I wish you the very best as you continue down your pain journey!

Shaina Smith

Thanks to everyone who has written a comment about the article! I’d like to try and respond to each one who took the time to share a bit about their pain journey; that takes courage!

Louis: I completely understand your sentiments and we are very much the same; I love the time with my husband very much. I guess part of my wanting him to find time for himself, without me, makes me feel less guilty in some way for placing additional responsibilities on his shoulders. I don’t necessarily want to partake in an activity without him, but more so I want him to know that he can engage in activities that I may no longer be able to do because of my physical limitations or unpredictable symptoms. In other words, I encourage him to acknowledge that he has the option to seek out moments that don’t fall within his usual caregiver responsibilities without feelings of guilt or judgement. I hope that makes a bit more sense as to the article and where I was coming from in relation to me being away from my caregiver. I wish you and your wife the very best!

Heather

Cindy – have you ever had your sleep checked out? I had a sleep study and learned that I had sleep apnea. Sleep can really mess with cognitive function, memory… even pain and emotions (I mean, a parent knows that bedtime is often what a cranky kid really needs, right?).

I was surprised when I spoke with someone else who was waiting to have a sleep study done (this was nearly 10 years ago) and he said, “Yeah, I knew it was time to replace my machine because I started getting those roaming aches again…”

I’m not saying it’s a cure, but well, I asked a doctor once what he thinks fibromyalgia IS… if he thought it was one disease or many diseases with similar symptoms. He said he thinks there’s many “paths” to get to fibro, and he said that he feels there are probably “subsets” of people who have fibromyalgia. Sleep is one of the subsets he mentioned and I’m afraid I don’t remember the others… but lately I’ve been hearing about thyroid as a possible subset.

In the 1970’s, a researcher with the last name Moldovsky (Harvey?) deprived college kids of sleep and they started having fibromyalgia-like symptoms.

I think it’s very complex and I don’t claim to have any special knowledge but the subset idea makes sense to me. I do know that sleep disruption worsens my pain and my brain fog and I’ve been confirmed to have apnea. I still have osteoarthritis in many joints so it would be very difficult for me to determine which pain is fibromyalgia and which is arthritis but I do know that that “roaming pain” quiets down a lot when I’m especially attentive to getting enough sleep (my sleep quality is an issue because of pressure points on the mattress becoming uncomfortable with the arthritis, though).

It’s hard to know if you’re chasing a rabbit down a rabbithole. If you snore, if you have a wide neck circumference, if you’re overweight, if there’s a family history of sleep apnea, if you wake with headaches… those are good reasons to have it looked into.

Frattini Mark A

Wow, it must be amazing to have someone love you this much. My wife of 23 years has reminded me after I was diagnosed with Autonomic Neuropathy specifically Cardiac Autonomic Neuropathy. Both my cardiologist and neurologist said I have around 5 years to live after my pacemaker was installed due to my heart nerves dying. I often have chest pain and constant cardiac arrhythmias. I’m in constant pain from my head to my feet. I vomit almost every morning until the afternoon and am in bed more then 50% of the time and rarely go anywhere. Most days I pray to die.
My wife in the other hand says I have ruined her life. Rarely does she ever do anything for me and still belittles me for not cooking dinner, cut the lawn, shovel or snowblow when we get snow ( which is almost daily up north Michigan along Lake Michigan). She has been the worse person at times telling me to “take more of your drugs so you can do some work around the house.
I try to be a good person, man, husband and father to my older kids, all in their 30s. I had always done the grocery shopping, cooking, cleaning, lawn care, taking the family to ballgames, hockey, basketball or to the lake. We would camp every year and I would do everything for our trip. I worked 10-12 hours a day and would always cook, help the kids with homework, pack school lunches, take them to sports practice. I did everything including building a house for my family. Then 10 years ago I got sick and after a zillion doctors and tests was diagnosed with Autonomic Neuropathy. I have a pretty aggressive form and have already lost sight in my right eye along with perfuse sweating. I still tried to do everything still but when I would cut the lawn or snowblow, I’m in bed for 3 or 4 days after. In the winter or during storms I’m always worse sometimes spending 3-5 months in bed. In and out of the hospital and emergency room.
But I’m still reminded often I’m worthless and lazy. What a miserable life.

Janelle Robinson

You are one lucky lady…the man I was with…engaged to…7 years…when the Drs said…there’s nothing more we can do…
He, sent me packing on my own…Chronic pain…miserable…That was 16 years ago….;)
I take care of my dogs…they give me a reason to get up every morning and I know they dont care that I have bad days, or take them on a shorter walk on one trip than the one before…
They never judge me….yell at me…or expect more than I have to give at times…
Its wonderful you have a man who cares so much…I find majority of men turn 180 degrees, duck their heads and walk the other way…like they are afraid they might catch what I have…a Disability…
I find this with the general public…also
We were people who worked for a living before we became injured or sick just like them…but you would think we were covered in yellow and purple polka dots..!!

Kim Wooster

Shaina what a great article! My husband is also the best care giver, husband and partner that anyone could ask for. Your ideas about how to plan when your caregiver is going to be gone for several days can be so helpful for chronic pain patients. Whether it’s a friend, sister, parent, etc. it’s the same plan you would make. I was diagnosed with my first chronic illness in 1995. Chronic Kidney Disease which wasn’t the one that got me to chronic pain…it was the autoimmune disorders and many surgeries I’ve had since then. My husband and I had 5yrs together before the beginning of illnesses. We have been married for 30yrs and have figured out how to and what we can do. I love when he gets a chance to do something for a long weekend with his buds to go fishing or to a race out of town. I used to do a support group locally at our towns hospital but am no longer able to do it. Being on Dialysis I see so many folks who have zero support and it breaks my heart. Again, I just wanted to thank you for putting into words what us chronic pain patients and our caregivers can do to help give them a break without worrying constantly about how we’ll be while they’re gone!! Oh and by the way… we have a lot of critters to be taken care of and although I used to be able to help with them he has to do all of it now!! I am blessed. Thanks again! 😃

Heather

I also have been thinking about the grim and dark part lately. I think there needs to be room made for that. I don’t know. I value authenticity and if I try to lie to myself, the truth catches up to me. There ARE some lousy things that come with being sick. I try to put on a braver face for other people, but it’s lonely.

It’s validating to see someone else admitting to the grim and dark parts, too. Emotions are real, and legitimate. Our culture tries to deny us that truth, and I think that’s partly why people learn poor ways of coping.

Billie McCurdy

Thank you for this. For 20 years I have been able to take care the things but the last two years have been the worst and I cannot do it anymore. Now that my husband is retired he is taking over most responsibilities and I never thought about him needing a break and forgot that he needs time take care of him.
Our situation is different because I’ve always been the caregiver to all and it is hard to let go of all those responsibilities. He’s learned to cook scrambled eggs and so far few little things. Our grandchildren laugh saying he was so spoiled for 43 years.
I used to have a full-time job mother grandmother wife and I was a helped to all. The hardest thing is to let go of is my love and abilities to take care of people and to be there for people in need. Now that I am the one in need I do not know how to ask for help. This article open my eyes to a few things. I need help. Now I have to learn how to ask for it. I don’t ask my family or friends( the few friends I have left. Most of them leave you when you can’t be there for them I guess that’s not being much of a friend) it’s time to change and let go. I think letting go and asking for help will be better for all. Reading this article made me realize that helping someone as stubborn as me must be very difficult. My way has been just a locked myself in my house stay away from everyone. I didn’t want people to see me in pain. I was tired of explaining my disease. Now I realize how can others take care of me if I don’t let them.

Heather

Great and helpful post. I don’t have a care-giver or a spouse but this still resonated with me.

Overplanning: I wondered if this was anxiety-based and I’ve sometimes assigned it some real emotional baggage.
– What do I need to take with me?
– What do I need to do and NOT do before something occurs? (this can be as “simple” as a trip to the grocery store)
– What may de-rail my plans and what can I do to prevent that?
– What if my energy level is low or my pain is high? Is there an alternative option?

It was validating to hear overplanning called a “lifehack” because it made me realize it’s necessary and not “just” “me being me.” I was going to say I don’t know why I assigned that a negative emotion but actually, I do: I’m telling myself it’s anxiety BECAUSE I want to be a healthy, “normal” person. Having to admit that I need to go through those planning steps is a stark reminder: I am NOT healthy. I have limitations.

In a way, I WISH that I were exaggerating or over-reacting. That would mean I actually had more leverage with my illness (that I’m not really so sick.) There’s a true inner conflict because I’m 39 years old and other than being obese, I “look healthy.” This is a real shock for me to be responding to your post in this way… because I’ve been sick since my early 20’s (at least) and I thought I wasn’t lying to myself any more. I guess part of me still slips in those value judgements. Or acknowledges that illness is a personal weakness (it’s not, but that’s pressure from society that I must have internalized.) Thank you for the wake-up!

Also, I was in a relationship for 10 years (dating) and I kind of lost myself. I was “WE” and not “ME” any more. I liked things that WE liked… but after the break-up, I realized I didn’t like those things. I think it’s healthy for spouses to have some different activities and certainly stay true to their own personalities and interests.

Cindy

I don’t understand how this writer works full time and even travels for work. I simply dont’. And this applies to many other writers of these columns.
I have so many days where it’s too much to scramble an egg. Doing laundry and unloading the dishwasher on the same day — only rarely.

On top of the physical problems, my cognitive function has declined since shortly after my pain began. While spelling and proofreading used to be my superpowers that no one could surpass — good skills for a lawyer —- ever since my pain began and probably due to my meds, I started reversing spelling of words that sound alike — our for are; here for hear; buy for by; and vice versa. And on and on. That doesn’t work on documents worth countless millions of dollars. Spelling mistakes I wouldn’t have made in grammar school.

More recently, my cognitive function has declined much more — lots more spelling problems and typos I see after I post something — wrong words other than described above, or missed words so that sentences make no sense, and other problems, aand I’m seeing a neurologist to hopefully get a diagnosis that won’t terrify me. So far, the brain MRI was ok; I’m now waiting for results of other tests.

I had fibro and other problems for a long time before my chronic pain began, and feel worn down by almosty 40 years of never knowing what it’s like to feel good. Maybe my other preexisting problems have made it harder for me than for some other people in pain.

I dont’ know. I just know that between my pain and resulting cognitive problems, I could never work. I can barely get thru a day. I will never understand those who work and do more.

Louis Ogden

Very interesting idea; however, my wife and I treasure our time together and she has been my caregiver and wife of forty-six years. There is nothing I can think of that I want to do without her.