Sunday, December 18, 2011

Caregiving, part II

I knew that I would be forgetting stuff when I wrote the piece about care giving yesterday.  I'm not surprised, as it is such a huge and daunting subject.

I was reminded by my Auntie Mo last night about telling people that it's okay to cry.  And it is.  In fact, you need to sometimes.  As a caregiver, you are under tremendous stress at the same time that you are dealing with the illness, major life adjustment, or impending loss of a loved one.  There will be times that you have to allow yourself to let the emotions out, good, bad or indifferent.

This particular subject always takes me back to when my husband was diagnosed with cancer.  He'd gone from being a completely healthy (or so we thought) 22 year old one day to a man recovering from surgery and facing radiation treatments.  His stomach was so sensitive that I tried everything I could think of to get him to eat.  He couldn't do much alone for a while after the surgery, and I essentially took a leave from school to take him to his appointments every day.  I was, in a word, completely overwhelmed.  I never let him see it though.

At the time, we were living in a 600 square foot apartment, with no room for either of us to be alone ever.  I had almost no time to let my emotions out, except for when I'd take the trash out to the dumpster.  Those walks were slow and tear filled, I'd be on the verge of hyperventilating hysterics by the time I got to the dumpster.  Then I'd take a deep breath and collect myself, recovering on the return walk.  Those walks saved my sanity, and allowed me to be the positive energy force for him that he needed.

It wasn't a whole lot different when my brother was sick as a teenager.  We'd all find ourselves in the garage crying tears of fear and sadness, wondering what the future held, but we'd compose ourselves before walking back in the house.

As a care giver, you need to allow yourself these moments, even if they are few and far between.  If at all possible, do the best you can to keep it away from the patient though...chances are that they have enough on their plate without having to worry about reassuring you as well.

Another thing I forgot to mention yesterday is that you need to make sure you aren't sacrificing other parts of your life too much.  This is, of course, all relative to the situation.  When I left home to care for my father, I knew it wouldn't be long.  I justified leaving my children and husband because I just had a feeling that he wouldn't be on hospice for more than a few weeks.  He wasn't.  It would have been a different situation had he been given months.  I can't say what I would have done if that had been the case, but I know that it was hard to be away from my kids for the amount of time I was.  Thankfully, I had a great support network here to care for them, led by my in-laws.  Without them, I couldn't have left.

I also experienced a bit of shock after my father died, and in a way I wasn't really prepared for.  In his final weeks, I spent 24 hours a day caring for him.  I slept on the couch or in a chair beside him, ready to give him pain medication or nausea meds anytime.  I set alarms on my cell phone to keep him on his schedules.  I slept in 90 minute increments if I was lucky to get any sleep at all.  When he was gone, it all stopped.  The background music of the oxygen machine stopped humming.  The alarms I had programmed in my cell phone kept going off even though they didn't need to anymore.   The daily routines were gone.

It's hard to go from the constant demands to having nothing to do.  I felt even more helpless after he died than before he did.  At least then, I had things to do.  After, there was nothing.  My work was done.

After is a hard place to be, far harder than being in it.

I have a feeling there will be more of these posts as I think of things or am reminded by others.  Please continue to give me feedback about these posts, as they are a work in progress.  And please share them with those who could benefit from knowing they aren't alone.



  1. I'll definitely be passing these along! I know several people who are currently caregivers for family members or who will likely take on those duties before too long. Thank you for writing these.

  2. This is great, Kelly. Glad to see you're writing about this.

  3. Dear Kelly, I have so many questions to ask you, but those will be done in private. <3
    I can also say that stress manifests itself in some strange and sometimes sudden ways.
    When my Tony died, it was without warning, and tragic in nature as I have mentioned...well always being the "care giver" of my ENTIRE family, the rock, the oak, the steady sensible one... I had NO IDEA what was happening TO me, or even that anything WAS happening to me. Others did, others knew and saw but none said anything. The people around me were so used to me being "fine" that I think THEY couldn't cope with the thought that I might not be fine... I was far from fine - I was making erratic (sometimes insane) decisions, decisions completely out of character.
    I would go to work, usually be able to get through most the day without having to close my office door to shed a few tears, but once I got into my car and got to the freeway that's when I was alone, I was able to let it all out, and it was the throat closing, heart wrenching, waterfall of tears everyday. Everyday. One particular crazy decision I made is what opened my eyes (or mind) enough to realize I best get my butt into some grief therapy lickitty split!
    I went for a few weeks, and came to find a sense of calm (sometimes) I was quickly diagnosed with PTSD, I denied this, since I thought that was only for soldiers, I denied it because I WAS THE OAK!, how can I be "not fine"? please just give me the right band-aid, kiss my boo boo and send me on my way. I stopped going to therapy after about 5 weeks, she thought I should try an antidepressant, and I didn't. Pretty simple. I got through, I trudged on, I figured it out and faked it till I could make it. But I had a target... the wrongful death lawsuit kept me focused, gave me a place to focus my anger. All the while, I'm not paying attention to some little things going wrong with me medically.
    A year after Tony's death (almost exactly a year) I had a full blown melt down, getting laid off from work was the very last little straw THIS camels back could tolerate. I went for my annual check up, and my doctor asked the question... the one that led to tears that just wouldn't dry up... "how are you?" - I fell apart, I wanted to say fine, I wanted to BE fine, but I wasnt and I finally had to admit it.
    I could go on and on... over the next year, I did take a temporary course of antidepressants AND I got back with the therapist to do the "real work" that was needed, but I continued to have some medical issues, some more serious than others, some pretty serious, the combination of which was making no sense to any of us. After many tests to rule EVERYTHING else out a specialist, a Rheumatologist, diagnosed me with Fibromyalgia. Seems that is was brought on and probably started right about the moment I was told he had died that Monday.
    What Im trying to share, in a very long and dragged out way (It could have been worse trust me LOL) is that stress, even when we don't recognize that we are suffering from it, can be deadly in itself, it MUST be released in whatever way works for the individual. Spend time with friends, take time for yourself, a day at the shore, the mountains, the bowling alley - whatever. Just take and make time - during and after traumatic events, give respect to stressful situations, recognize them as soon as possible and take care of you, or you can just forget about taking care of others.... XOXO


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