Monday, July 28, 2014

Caregiver Fab Five

“I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close.”
― Pablo Neruda

Wow, it's been almost one whole month since I wrote! My apologies! But you know, life, laziness, procrastination and pain usually get in the way of me doing the things I say I'm going to do. But alas, here I am. I have returned to share with you the last of the Scleroderma Awareness series blog posts and memes. (Better late than never!)

Today's final post in this series is inspired by my hubs Lupe Mendez. Without whom, I'd probably be hooked up to machines being fed through a tube on oxygen in some dingy county hospital by now. He is my rock. My strength. My everything. (While I do have a great support system overall with wonderful parents, friends and family, he is with me on an everyday basis as patient and kind as ever) So, it is only fitting that I acknowledge him...but even more so, I am giving him space in my blog (he knows how selfish I am so this is a BIG deal) to share HIS side of this experience. 

I asked Lupe the other day to please share what 5 things he thinks all caregivers/spouses should know or remember when loving and living with a person with chronic illness. So here they are: (His words, not mine)

1. Be Mad: It's ok to be mad at your spouse/loved one every once in awhile. Sometimes they can be a pain in the ass and while you understand that they are ill or in pain, that doesn't give them the right to treat you like crap. So, be mad and share how you feel. You are allowed to feel frustrated and angry too. Accept it, share it, and move on. 
I (Jasminne) am a pain in the ass at least once a day. Usually involving what to eat for breakfast/lunch/dinner
Lupe quite simply tells me: You are a pain in the ass. Now, what do you want for dinner?

4 Year Anniversary Dinner
2. Laugh:  Always remember to keep the humor in the relationship. Laugh at yourself, at her/him, at the stupid disease at everything! Make fun of each other (in good fun), of the disabilities, of the pain, of the pills, it's the only way to get through the darkest times. 

Example conversation this morning:
(Lupe did something to make me "angry")
Jasminne: I'm going to cut you! Stop it!
Lupe: You can't even hold a knife. 
Jasminne: I hate you. So rude. (And we laughed) 
We make jokes about everything, even things that shouldn't be funny, but it helps us deal and reminds us that everything will be ok. 

Lupe @ a poetry reading
3. Have Goals: Have your own goals as a caregiver. Your spouse/partner/loved one WILL take a lot of energy and focus in the relationship. But you MUST have your own goals, hopes and dreams for the future. You have to put yourself first sometimes too. If everyone's goal is just make the chronically ill person healthy or better it will drive everyone mad and you will not be the best YOU can be for that person. Remember (especially if you are the spouse), your wife/husband fell in love with you, don't lose yourself in the process of caring for the one you love. Take up hobbies that you strive to get better at, reach for professional goals, go back to school, have projects around the house, get healthier, whatever it is, give yourself the time, space and energy YOU deserve. 

Example: Lupe applied for and got into an MFA creative writing program- after I- Jasminne- pushed him into it because I saw how unhappy he was with his career and life in frustrated as I get with his crazy school schedule, I know in the long run this is will make him happy and if he's happier, so am I, and if I'm happier I'm less likely to get sick! So it all works out!

4. Give Space: Give your chronically ill spouse/partner/loved one space to deal with his/her emotions. Even if you want to be there and shower them with love and comfort, sometimes they do just want and need to be alone. And that's ok. Try to not take it personally. They have a lot to deal with and many emotions to process. If they are anything like Jasminne, they will come to you and talk it out when they are ready. 
Just Because Flowers
Whenever Jasminne goes to see the doc alone and gets bad news or no news, she comes home in silence. As much as I want to ask her a million questions and try to find out what we need to do next and how she's feeling, I know that she is still processing the information and trying to understand her own emotions about what she's just learned/heard. So, I(Lupe) will try to have dinner ready, or offer a back rub or pick up her favorite dessert. It doesn't always put her in a better mood, but I know that she'll appreciate it when she's ready, and she'll open up about it when she's ready. 

5. Be Proactive/Advocate: Sometimes your spouse/partner/loved one will be stubborn. They will not want to take their meds, see the doc, go to the ER or eat the way he/she should. That is when you put your gentle bedside manner aside and you strongly encourage/force them to do as you say. Yes, taking pills everyday is not easy, but you know that it is for his/her benefit. I'm not saying force feed them their pills/meds but use the power of persuasion to do so. This especially applies to those moments when you KNOW you need to get in the car and go to the ER IMMEDIATELY and they are still wavering and saying things like: "I feel fine...I'll be ok...Just give me some (insert pain pill here) and I'll be alright...No, I swear it's just heart burn/stomach ache/headache..." 
With someone who is chronically ill it is rarely EVER "JUST" something...better to be safe than sorry. They may know their body, but it is up to you to advocate for them and be proactive. 

Summer of 2012, Jasminne kept complaining of pain in her side. Insisted it was just slight back pain probably due to heart burn or sleeping wrong. I insisted she tell her doc about the pain. She said it wasn't a big deal. Two days later, we were in the ER and docs were ready to drain 800ccs of fluid from around her heart. She was in shock at how serious her situation was. In that moment, we both became proactive and advocated for her. I insisted that they find her rheumatologist before conducting any procedures and we were able to keep her from undergoing minor heart surgery. BUT had she listened to me earlier.....*sigh...I digress. 
At the Lupus walk

So..those are Lupe's Fab Five tips/things to remember. For those that are caregivers/spouses what do you think? He is right?

For those that are ill, are these things you agree with? What does YOUR spouse/partner do that make a difference?

1 comment:

  1. You two are too stinkin' cute. I love this post! Great tips, Lupe!