Thursday, September 27, 2018

Caregiving

Caregiver - a person who provides direct care (as for children, elderly people, or the chronically ill)

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                                                     



Friday, August 17, 2018

A lot has happened since May


A lot has happened since I last posted in May.

We finally were able to get past the swollen lymph notes. He did end up having not only a needle biopsy but then turned around and had two of the nodes removed. Both biopsies came back good and only revealed reactive lymph nodes. He continued his antibiotics well into June.

The Leukemia dr....the ENT....the Infectious Disease doctor...no one could figure out what was the cause of everything. Which we guess is good? Either way we are over that hurdle.

But during that time frame his shoulders began to hurt considerably. So we added a Rheumatoid specialist to the mix of physicians. All those tests came back normal as well.

The Leukemia doctor finally was able to release him from the BMT clinic. That was a happy day. But on the same day his platelets fell with no explanation. Over the course of a month they would fluctuate and the oncologist referred us back to the BMT for another Bone Marrow Biopsy. The fear was that his Leukemia had returned. After an agonizing few weeks we found out that he is STILL IN REMISSION! Thank you Lord.

We just saw the Leukemia doctor this week and he does not have to return for another 6 months. This is AWESOME! So right now he is cancer clean. We also began seeing an Orthopedic for his shoulders. It appears he has Frozen Shoulder. The cause....possibly the chemo and being inactive for 10 months. So we start physical therapy in a few weeks and he received shots in each shoulder.

I think we are finally over the biggest hill and we can now start the decent to a semi normal life again. We are 11 months from his initial diagnosis. It's hard to believe that it has been so long and then on other days it feels like it has been forever since this started.

We have a full few months. With Physical Therapy...Paulding Meadows...hopefully a trip away...then another art show in November.

We also celebrated our 20th Anniversary on July 31st. I tried my best to make this the most amazing anniversary. Every day in July I shared on Social Media why I love him. Sharing pictures from the past...his crazy antics...and just simply wanting him to know exactly why he means so much to me. On our anniversary I was able to give him a sign that I made, with a little help from my friends, that had I love you spelled out in a bunch of different languages. He really is the center of my life and I love him so very much. I'm looking forward to many more anniversaries to come.

Okay stay tuned because I will be posting my kitchen backsplash redo that I accomplished back in May as well as a few other DIY projects we have finished and a few in the works.







Sunday, May 6, 2018

A note to my children



A note to my children....

I know with Mother's Day only a week away...that you both are pondering "what should I get mom"....or you have already asked me "Hey mom what do you want"....or I know you have already asked your dad ;)

Well.....

The last 7 months has taught me so much in so many different ways. One of those things has been material items. Sure it is great to have the latest and greatest....to have fun toys or more craft supplies or pretty bling or this and that. But does it make you happy....I mean deep down truly happy? Is it what you really, really want? For me....not anymore. You see.....7 months ago I was pretty sure I was going to lose your dad. I really and truly was scared. Underneath the strength I tried to muster daily....it was always in the back of my mind. Real quickly I realized that over time we let ourselves become wrapped up in things that don't really matter. And we lose sight of what truly makes us happy in life.

3 months ago I got to watch the birth of my second grandbaby. THIS! This is what matters. 2 months ago your dad was told he is in remission. THIS! This is what makes my heart smile to the heavens. Watching the two of you grow into adults and then grow your own little families....THIS is what every mother wants. I have done my job as a mother......and now I get the chance to sit back and watch YOU grow into parenthood with your dad sitting right here beside me. To watch Butterbean give her mom a run for her money....to watch Peanut smile and laugh......the joy that brings me is unexplainable.

You want to know what I want for Mother's Day...
my sweet children...
I already have everything I want in you...in my grandbabies...in my family. There is nothing on this earth that means more to me than that.

I love you always,
MOM