You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.
Slowly, so slowly at first, it seemed almost as if you might be imagining it all.
First, the words of condolences.
“I am so sorry you are going through this.”
“I heard about the diagnosis. I am so sorry.”
Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.
It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.
The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.
You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.
You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.
The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.
You do everything in your power not to click on that icon, you try so hard to stay away from social media.
You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.
You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.
The connection is gone.
Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.
The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.
You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.
If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.
You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.
Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.
It is the same process, every single night.
Mundane…sameness…always the same monotonous events that take place for bedtime.
- Brush his teeth, but don’t use the minty toothpaste. He doesn’t like that one.
- Wash his face, but only in certain spots. It makes him chilly to have his face damp.
- Use a q-tip and scratch the itches his fingers can no longer reach. He gets that look in his eye when you find that good spot, not unlike a dog feels when you hit the magic spot.
- Use a bit of tissue, and pick at his nose. (I used to feel squeamish getting up in each nostril, but now, my stomach doesn’t even do a little flip flop as my fingers go up and wiggle around, the tissue swiping at any loose snot balls.)
- One medicine for anxiety, one for sadness. One that is supposed to slow down his progression. We know two out of three of those meds work for certain.
- Pour a capful of white powder and swirl around until dissolved. (It helps him poop.)
- Place the pills in his mouth, his tongue is twitching again. Quickly lift the thickened water to his lips.
- Remove his lap blanket and place the hand-held urinal between his legs. Push his legs apart so that he pees in the urinal and not all over himself.
- Roll into the bedroom and start a machine. The clicking of air, pushing in and out, his cheeks puffed, as he coughs. (The cough is weaker now. Nothing much ever comes out. I can’t tell if I should be thankful for that or not.)
- He tells me he thinks he may be getting sick. His throat hurts and he feels warm. I tell him he isn’t getting sick and deep down I silently pray I am right.
- Grab the giant metal arm, attach the loops and hit the button. The arm pulls him up and out of his wheelchair. His ass scrapes along his controller, again. I seem to do that every night. He gives me a pouty face, as I apologize…again.
- My face turns red as I pull and twist the metal contraption over towards the bed.
- Grab the remote for the bed to lift the headboard up, as I simultaneously lower the metal arm down on the bed. Push with my shoulders, and pull his legs out straight, so he doesn’t cramp.
Pay attention, Theresa!
- Don’t sit him too high or too low. Keep the headboard at a little less than 90 degrees, just the way he likes it. Unhook the loops, pull the metal arm away from the bed. Tuck it back into the shower, where we can hide it and pretend for just a few hours that it is not a necessary tool for me to move him to and fro.
- Pull the straps and the sling out from under him.
- He winces.
- Place the bandaid over the bridge of his nose. It looks raw and sore again.
- The mask goes on next. Hit the ON button. It screeches to life.
- Find the remote for the headboard, which is now buried between his legs and blankets. The dog is laying by his feet. The dog isn’t much help.
- Laying him slowly back, there is one more thing. Scratches…
- Grab the baby powder by the night stand
- Dump it anywhere there is a crevice. (I’ll save you the embarrassment of describing all the places that baby powder goes.)
- Attempt to roll him onto his side. Not before he whines. He wants scratchy time to last longer. I do not
- Check for pressure sores. On the back of his legs and his buttocks.
I grunt again…I swear he is more square than he is round.
- Get his leg pillow just right between his legs. Adjust his head pillow to match. (He asks me to push him more. He isn’t on his side all the way. He will tip back over if he isn’t just so. Several more attempts. Several more grunts)
I give one more hard push…
- “OWWW, I think you did something to my back!”
I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent
- “I don’t think my legs work anymore!”
- Then he giggles.
- Rolling my eyes when I realize he was trying to be funny.
- “Ok, I am going to go lock up.” I say, as I pad barefoot out of the bedroom.
- “I’ll be right here!” He yells.
- “Don’t move!” I yell back.
- I shake my head with a little grin.
- It is always the same thing…every single night.
Today is the last day of November. It is also the last day to recognize caregivers. November is the designated month to celebrate the caregivers in our lives.
And much like what it can feel like to be a caregiver, the month went by with little recognition. And that is okay.
Most of us don’t do it for the praise, or the pat on the back. We certainly can’t say we do it for the money or the fame. We do this for someone we care about, someone we love.
But, for just a moment, I want to give you a peek inside the life of a caregiver.
• We get interrupted sleep, and we seldom (if ever) sleep a full 8 hours.
• We eat our meals last, or even standing up, in a rush to move onto the next check item on our to-do list
• We juggle so many things at once, we have a hard time focusing.
• We coordinate, organize or rearrange our schedule to take care of everyone else.
• Sometimes, we want to think of ourselves, but then feel guilty for it.
• We worry…all the time.
• We sometimes feel overwhelmed at the responsibility of caring for another.
• We have a rash of emotions that spread over us quickly, and yes, sometimes they might seem irrational. Don’t worry, the feelings dissipate quickly.
• Showers become the only private time we get to ourselves…
• We are the advocate, and the voice and the warrior for the person we care for.
• We have moments of selfishness, of wanting to not to have to think of, or put another person over ourselves all the time.
• We remember how much we love the person we are caring for, and somehow, all those emotions, and the weight of what we do seems less heavy for just a while.
• We often feel alone.
• We cry in the shower because the sound of the water washes our tears and drowns out our anguish.
• We smile through the irritations, or frustrations…and yes, even through the pain.
• We can’t imagine not trying so hard.
• We live with guilt over not being enough…every.single.day.
• We know that this role we play won’t last forever.
• We hate being told it’s not about us….
• We get irritated when others try to give us advice but have no real-life experience with the same situation.
• Seeing our loved one smile can make the frustrations and hardships more bearable.
• We would still make this choice, if it means just one more day with those we love.
Remember, you will either be a caregiver or need a caregiver at some point in your life.
If you know a caregiver, show some empathy and compassion. It’s a tough job.
If you need a caregiver, show some empathy and compassion, it’s a tough job!
“Let me know if you need anything!”
This phrase is texted, said or otherwise conveyed to people of all sorts: to caregivers of all types, and to people who are either sick, going through a loss, or even to those who are going through life changes, (i.e. new births, moving etc)
This phrase is also one of the worst phrases that have ever been uttered, with the best of intentions, of course, to people around the world!
We rush about our day, see people we know and say these things in passing. This phrase is like saying, “Hello, how are you?” (As the person continues walking away!)
It may be said with the best of intentions, but is in fact, the worst statement you could possibly say to someone!
Let me help you help someone else with ideas and tips for how to be truly helpful to those around you!
#1 SHOW UP!
Do not just send a text message with a well-meaning hello and then assume that they will ask if they need something. This places the burden on them, which isn’t fair! Most people do not want to be a burden to anyone. They will not want their ego or pride bruised by asking for favors and possibly have them turned down.
Show up! It is that simple. Take some time out of your week and stop by. Call them and ask them when a good time would be to come over for a visit. Bring flowers, or some coffee or a beverage and spend time with this person. (And please…put your damn phone down!!! Be present! It may be uncomfortable to sit with someone who is sick but imagine how the person feels if you are constantly checking your phone!)
P.S. Do not offer to show up and cancel repeatedly either. It is rude and will make the person you are offering to visit feel not only like they are inconveniencing YOU but makes them feel as if they are not actually important, but that you are doing this to make yourself feel better!
#2 OFFER TANGIBLE THINGS!
Instead of offering something that is vague, offer something tangible. Offer to bring over a meal that can be frozen for later. Offer to carpool the kids if it is already on your way. Offer to run some errands or pick up some groceries or to mow the yard. Offer to take their car to the car wash or vacuum it out for them. Offer something that you think you would appreciate if you were in their situation.
# 3 EMPATHIZE! DO NOT SYMPATHIZE!
Empathy is the ability to understand what another person is going through. Take a moment to try to understand things from their perspective, and then offer something that you think you would appreciate if you were in that situation.
Sympathy is feeling sorry or pity for another. DO NOT do this.
There is a clear difference between the two.
#4 DO NOT JUDGE!
Many people do not ask for help when it is offered because they are worried about being judged! If someone came over to my house right now, they would find some dishes in my sink, a stack of clothes on my dresser that I haven’t hung up yet (I absolutely hate laundry, it is my arch nemesis!) and they would find a messy garage, and who knows what else!
However, unless you live my life, you have absolutely no room to judge me! I have woken up 8 times in the middle of the night to adjust my husband. Three times, I had to physically get out of bed and sit him up, and remove his mask, etc etc. I am often sleep deprived and there are many times that things around the house do not seem like a priority. If a spotless house is your priority, great! But do not come over to my house and judge me for not taking care of your priorities. Come over because you really want to be with me or offer help. Making me feel judged will only lead to anxiety and more stress.
#5 EXPECT NOTHING IN RETURN!
So, you brought a meal over…Great! Please don’t expect accolades posted on Facebook or a thank you card in return! If you are doing a gesture to be helpful, remember that it is a gesture that should be given out of friendship or love, not for your own ego or pride!
#6 TAKE THE KIDS!
Okay, this one is purely selfish on my part! I have three children. I have a terminally ill husband. While we still get out and about right now, I know that my children do not get to do as much as they used to. We have to plan absolutely every detail now. We have to plan showers, bathrooms, and medical equipment back up and battery charging. We have to plan wheelchair accessibility, and ease of travel. We even have to plan for the weather, as my husband cannot handle extreme temperatures.
If someone offered to take my children along with them to a movie, or swimming or on a fun excursion, that would help alleviate my guilt. I cannot always take them, and they are often left out of going to places because of this.
#7 BE AWARE THAT THINGS ARE DIFFERENT NOW
No matter what the circumstance is, whether it is a new baby, or an extreme life-altering situation, be aware that this person’s life will forever be different. This person’s routine will be different. The things they were once comfortable doing, may not be as easy to do. They may not be able to communicate their frustrations or their new anxieties out of fear of judgement or ridicule. Spending time doing what they used to do may not be as easy. Try to meet them half way. Your invitations are appreciated, and just because they do not show anymore, doesn’t mean the friendship isn’t valued. It is just different.
Try to communicate how you can make their life easier, instead of expecting them to continue with the status quo!
“Let me know if you need anything.”
A phrase that is said with the best of intentions yet grates on my nerves.
Please don’t think I am unappreciative!
I am not!
But this simple phrase fills me with so much anxiety, causing so much stress and frustration. I will default with a smile, say “Thank You” and go about my day.
I am a caregiver, a wife, and a mother, among other things. However, I cannot juggle it all, and I cannot ask for help! My pride will not let me lean on others. I am not the only one who feels this way either. My husband is sick, and yet he is filled with dread asking for help as well. We understand how busy everyone else is. We also feel intense guilt if we feel we have added an extra burden to someone else. Hopefully these little tips have been helpful
If you want to be a part of someone’s life, you will make an effort. If you do not, you will make an excuse. It is really that simple…