For Denise, Because it was a good question!
Aht lo lev-vahd is Hebrew for “You are not alone!” Sometimes when we are in the middle of many challenges we forget that we are merely mortal and not something bigger or more important. Last week, about January 18, 2013 or so, Denise on the Blog Talk Radio Show asked me, “Now that your Hubby has passed away, how were you affected by caregiving?” The following is my answer.
(Lyrics of “Stand in the Place Where You Live” by R.E.M. are playing in the background.)
Stand in the place where you live, now face north
Think about direction wonder why you haven’t
Now stand in the place where you work, now face west
Think about the place where you live wonder why you haven’t before..)
Radio Announcer: “Welcome to CareBlogger’s Forum, a byproduct of Caregiving.com. Tonight we welcome Roaring Mouse. Roaring Mouse was a caregiver to her spinal cord injured spouse while simultaneously having and raising their first child. Roaring Mouse, as we’ve seen from your writings, you had quite a bit of excitement over the past 6 1/2 years and we understand in addition to the hats we mentioned you also wore nurse and a variety of others as well. Your path is now taking a different direction. Can you tell us about it?”
RoaringMouse: “Thank you for having me tonight. Yes, due to my Hubby’s recent passing, I am now putting myself back full steam into developing my career working with the Disability Community and Emergency Preparedness. I am also volunteering at a spinal rehab center. A new item is learning how to play the role of single parent. Not something I ever expected to do.”
Radio Announcer: “It seems you have faced learning a lot of things you’ve never done before.”
RoaringMouse: “Yes, this is especially true of the last several years. I’ve learned how to address society’s refusal to accept that I could be pregnant and insist on remaining married to someone who has paralysis. I didn’t him marry for his hairy legs. I married Hubby for the kind of person he was. You don’t divorce someone just because they have a broken leg either. Only two days ago I was again told forcefully that I was not allowed to care about people with spinal issues.”
Radio Announcer: “How did that make you feel?”
RoaringMouse: “Angry, hurt. I wanted to cry. I wanted to yell at them. But I didn’t. As my daughter was present, she made a good self conscience distraction for me. I simply decided that the person was extremely small minded and walked away. Though when I went home later, I cried for a good hour. I felt so alone and hurt.”
Radio Announcer: “Okay audience! We need to take a break but when we come back we are going to ask RoaringMouse now that her spouse died, what did she gain from being a caregiver?”
(Lyrics to Stand in the Place Where You Were by R.E.M. Continue….
If you are confused, check with the sun;
Carry a compass..to help you along;
Your feet are going to be on the ground;
Your head is there to move you around…..)
(>>………Oh! No!! I have no answer! I really don’t have an answer!
What do I say????? At this point I look toward the sky and
ask Him up above to help me. Think! Think! Wait a minute…look at
what you are doing. You are gaining recognition for your work,
for your presentations, and for your writings. Look at yourself…look
at people’s responses to you…..<<)
Radio Announcer: “Hello everyone and welcome back from that brief break. We are continuing our conversation with RoaringMouse; Caregiver, Advocate, Volunteer and Mom. RoaringMouse before the break we said we would ask you what did you gain from being a caregiver? What did you gain?”
RoaringMouse: “Well, Uhm. Sorry, saying the whole question like that has really thrown me for a loop. No one has ever asked me that before. The answer should be easy but since no one has ever asked me in my entire history of doing this, I have had to really step back and think about this.”
Radio Announcer: “RoaringMouse…did you not enjoy the position? Is there something you haven’t told us? What makes you so fearful of giving an answer?”
RoaringMouse: “Are you kidding?! I wouldn’t trade all my experiences for anything in the world. Nothing! I was given a gift that spans so many levels that I’m actually kind of speechless and that’s why it is tough to come up with an answer. But here it goes…”
(Lyrics faintly playing in the background as the song continues….
Your feet are going to be on the ground;
Your head is there to move you around;
If wishes were trees, the trees would be falling;
Listen to reason the season is calling:
(RoaringMouse continues:) “First there’s the list: Without going to nursing school, I learned how to read when a person will pass out; how to take daily vitals; how to help someone take care of their daily lavatory issues; how to get a person dressed/bathed; how to transfer someone bigger and taller then I; administer medications and read for personality or contraindication changes; and all the while delivering and taking care of our first child. But though I learned those things (voice gets soft) that’s not the answer I want to share.”
Radio Announcer: “RoaringMouse? Are you okay?”
(Lyrics faintly in the background…
Stand in the place where you live, now face north;
Think about direction…wonder why you haven’t before….)
RoaringMouse: “Probably the worst thing I had to learn was how to address all my challenges that I’ve faced in the past year alone and accept that there would be no one to help me. It was awful. I have probably shed enough tears to fill an over sized rainwater barrel.”
Radio Announcer: “I…I..I am confused. You always present yourself as being confident. This is the first time I have heard you as not confident and perhaps scared.”
RoaringMouse: “The hardest part about being a caregiver was not addressing all of the physical issues. That was easy; but rather issues of the mind and heart. Sometimes medications would cause mood changes and sometimes health changes. Other times, it was just flat out frustration with the world. Frustration because he couldn’t get therapy or I couldn’t get extra assistance or we were prohibited from having additional earnings that would help us address financial issues. At the end of his life, he was always talking about how he was such a burden on me. At times looking at guns on the net or even asking me to just let him die. I never argued but as I only knew all to well the extent of what he was going through. It was just tough having to admit that one day I would have to let him go.”
Radio Announcer: “That had to have been rough.”
RoaringMouse: “It was. But as a caregiver–and this is where my answer comes in–I think the toughest piece to learn without an education. But it is the most important. By that I mean, you have to become a friend on a different level, perhaps even holistic. You have to be able to sort out all the noise from the real issues at hand.”
(Softer lyrics: Now stand in the place were you work, now face west;
Think about the place were you live…wonder why you haven’t before…)
(RoaringMouse continues:) “So to answer your question, about now that he’s passed what did I learn as a caregiver? I would have to say I learned, I learned how to listen, not just to the spoken words, but to the unspoken words, gestures, facial movements and by watching society’s reaction to the situation around us.”
Radio Announcer: We’re going to take a break and we’ll come right back to CareBlogger’s Forum.
(Lyrics to song play again:
If wishes were trees, the trees would be falling
Listen to reason…the reason is calling!
Your feet are going…to be on the ground!
Your feet are going…to be on the ground!)
Radio Announcer: RoaringMouse you have really given us a lot to think about tonight. But do you still feel that you are alone?
RoaringMouse: No I don’t. And here’s why. Because I was giving an amazing lifetime opportunity gift of learning how to be a caregiver to someone with unique and highly serious medical challenges. In turn I am not alone because I can share the things I learned with others who feel alone.
(Lyrics boldly playing now: Now stand!
Now face West
Think about the place where you live..
Wonder why you haven’t?!)
Aht lo lev-vahd! I now know by answering this question that I am not alone. My gift of being a caregiver allows me to pass it on to to help others. Since there will always be someone around who might need my humor, tenacity, compassion or a place to sound off about life. Hopefully they will think I’m a person well grounded enough to help them through their tough times. I will stand!
(Yes, “Innovative”! even only at 4’10.”)