I knew about being a caregiver from my family members taking care of my grandparents through the years but I really never stopped and thought about what it meant to be a caregiver.
This is for those of you new to caregiving...or maybe you have been doing it a while. I am by no means an expert but I don't mind sharing what it means to me and my feelings throughout this process.
We never ask to be put in this category. There are no classes for it. It's like when you are a first time parent...there are no books that truly tell you how to become a parent or the process. It is really a learn as you go deal. I mean you have the little self help advice books, etc...but a real guide...there just is not one. For the new caregivers out there....I will not sugar coat it...it's not easy. Not ONE bit. But there is just something that clicks when it is someone you love and you are now the one who has to get them through what ever hurdles they are trying to jump. It's a 24/7 job. It's physically demanding. It's emotionally draining. It is financially stressful. But it is what we must do for the ones we love. For the ones that have been doing this a while...you are an amazing, special person. I've only been a "caregiver" for year now...I dabbled a little bit back in 2013 but this time around...it is no joke.
First off...it is scary. There are so many unknowns that have put you and your loved one in this place. Maybe it is from cancer...maybe from an injury...elderly parents...or even a family member struggling with addictions or illness. So for starters you are learning about this new hurdle...the ins and outs...the what not to dos and what to do...don't eat this but make sure you eat that. For me....learning about Leukemia was not a walk in the part. I had to learn about the cancer its self...how it is treated differently from other cancers...the risks...the statistics...what he can eat and what he can't...that simple things like tending to a garden he just can't do anymore...all of which is emotional draining and stressful. Hearing that your loved one was just diagnosed with cancer...well it makes your mind go in a million different ways. You have to reel that in...you have to start educating yourself.
The next big step for me as a caregiver is being an advocate and learning everything I can. You have to remember when they had this surgery, when their last biopsy was done, what medications they are on, when they stopped this medication and started a new one. I can tell you how many and the names of all the drugs he has been on..Vancomycin, Daptomycin, Invanz, Flagyl, Amoxicillin, Cipro...he has taken Levofloxacin, Acyclovir, Doxycycline, Clindamicin, Levaquin...his chemo was Cytarabine...I'm sure there are a few others in there that I can't remember at this moment that he took early on. I had to start writing everything down just so I could keep up with it. Now I can pretty much rattle off every surgery....every biopsy...what physician said this...what physician belongs to what group, etc. It's a lot to take in. But you need to. Because there will be a time that you will have to stand up for your loved one and say "hey....look...we have done this and it didn't work...we have taken this and it caused more issues"...or as in our case we flat out told the doctor we were no longer taking Cipro because the side effects out weighed the benefits. Or when we knew there was something wrong with his shoulders I just flat out said...here is the deal...we need to see someone else that can look at this issue that is NOT getting better that the drugs he is on is NOT fixing...so....who can you send us to? Your loved one is not going to be able to keep up with it all. Especially when some of these medications or the disease it's self really plays havoc on the brain. Billy has some memory issues now...he can tell me something that happened and not have the time frame right or has things confused with other things...a lot of this is due to the medications. And especially chemo...the dreaded "chemo brain" is a real thing. So it is important for me to go to as many doctor appointments as I can so that I can catch the things he doesn't remember.
Stress. It's real. If your loved one has to stop working...there all of a sudden is a tremendous amount of responsibility thrown in your lap on top of everything else that you are having to take in. Finances...taking care of the home...if you have kids making sure they are taken care of and where they need to be...the list goes on and on. But remember YOU are only ONE person and sometimes a few of these things just will not get done when you want them too. And that is OK! Was kinda hard for me to learn if I'm being honest. I'm a gotta do it all myself kinda girl. Well, this last year has taught me that it is okay to rely on other people. They DO want to help. Let them! I am still learning this actually but I'm trying. Make sure to look for resources in your area or on line. Places that maybe able to help you with some financial things. Even if it is grocery gift cards!!! It helps!
Your feelings....don't bottle them up. It is very important for you to be strong for your loved one or the family...but at the same time you still have to take care of you. You have to work through these emotions. I would drive home from the hospital and that would be my time to cry. Ugly tears. Which is not good when you are driving down 2-85 in rush hour traffic...just saying. But that was the time I had. I needed to be strong at the hospital...there for anything he needed...be strong for the kids at home...so that was MY time. I've even called a friend and said "hey look...I don't want you to tell me that it's all going to be okay....I want you to listen and let me bitch and get angry for a little bit...to let me get out all these feelings I am holding in". It was a good drive home and I felt so much better. But there will be days when you don't feel strong...when you feel in the way...when you feel like your not helping. There are sometimes that I sit here while he is in the hospital and I feel like I'm just in the way. I try to sit off to the side and not bother him so he can rest but every time he moves, etc...I want to jump up and see what I can do to make him comfortable or give him something to drink or press for him to eat. Those are the hardest times for me actually because I feel useless. I can't fix what is going on...I can't make things better...and I just have to realize that this has to take its course. And then I remind myself I am not useless. That even though he doesn't feel good...even though he doesn't say it...I know he appreciates me being here and just being by his side. I want to believe that just my presence is comforting to him. I know for me.....his presence...even if he is sleeping 99% of the time...is comforting to me.
This job has no pay...and as someone told me this week...we didn't sign up for this club....but deep down....the knowing that you are here for this person that you love so very much...there is not enough money in the world to replace that feeling. Caregiving is hard....and many times it does not end how we want it to. But you have to believe that during that time you were there for that loved one...it was a special time...it was a time of tremendous love.
I strongly urge you to find a local support group via social media...in your area...or online. Just so you have somewhere to bounce things off of with people who are doing the same thing you are. I am a part of many Leukemia and Lymphoma groups for this reason...we talk about the side effects of drugs...remission..reoccurrence...we laugh...we get excited for those that are celebrating milestones and we cry for those that have lost their loved ones.
And in case you don't hear it and need to...YOU ARE AMAZING and what you are doing for your loved one will not be forgotten. Hang in there. Mountains are made to climb.
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the things which you think you cannot do.”
— Eleanor Roosevelt
