When the care giving stops….
Think about who you were before the care giving began.
Life was ‘life.’ There was family. There were friends.
There was a job. There was a job that required you to probably get in the car, or jump on the bus, or subway and travel to an office. You worked hard every day. I guess you could say the rewards of that job were the paycheck you received and there was probably a social reward too. The people in the office became your friends and maybe a social life spawned from your workplace. All good. Life was good. The routine was comfortable and sure there were bumps in the routine, but nothing you couldn’t handle.
Then cancer came to play or another serious illness that required you to become a care giver. Big bump in the routine….so much so that your loved one needed you to interrupt that routine and you became a care giver. A new word in the family vocabulary. A new way of living all together.
Your care giving days changed who you were while you were in “training.” Actually it was training on the job and you were the teacher and the student. Did you even notice how absorbed in giving the care you had become? It just sort of happened in my case and I’m sure many of you can relate to what I’m saying. What started as a drive to the doctor or making sure meds were given on time, evolved into an hour by hour attempt to make our loved one’s the best they could be. We wanted them to feel comfortable. We wanted them to be pain free. We wanted them to eat well. We wanted them to stay engaged in the world. And we wanted them surrounded by friends, so they felt included in the world.
I never thought about stepping away from my world and how that would impact me when the care giving stopped. And when it did stop, when Leroy was gone and no one needed my constant attention any more, I was stunned, numb.
How did it get so quiet in the house, all of a sudden? The meds were still on the counter, but there was no need to keep the hour by hour chart any longer. Even the pillows on the bed, where he slept, didn’t need my constant attention. I still only sleep on half the bed.
How can one person be so busy one minute and so alone the next?
We’ve talked about care giving so many times, but we really haven’t talked about AFTER the care giving stops.
Where are we? Who are we after that?
April 1, 2014 @ 7:25 pm
I must acknowledge everyone’s comments. I came to this place when the words were being written by Leroy and my hope was strong. All of you have become familiar names to me and I’ve read about your lives here. I have met Dianne and I keep up with Laurie and that beautiful little Ellie on Facebook…all of you have been there on my darkest days. Laurie S. I can’t thank you enough for being the glue that bonds us.
April 1, 2014 @ 5:36 pm
Words don’t even explain all the ups and downs I have had since I lost Neil. I was with Neil for 6 years. I didn’t have the years together like many of you, but I loved him with all my heart. We had our future in front of us. And then bam, every thing stopped but the love we shared.
I have since moved 3 times, started 4 new jobs, (made some pretty drastic changes there) and did what I never thought I could do and hopefully have now found some roots and stability in my life. I’ve tried dating, it just isn’t right yet. I haven’t given up hope, in fact, I decided to make room in my closet for the “one day” maybe.
Trying to find my way hasn’t been easy, I can’t imagine what it’s like after being with someone for so long 10-15-20-45 years. My prayers are with all of you. I commend your spirit in moving forward. I know how difficult it’s been for me. You pay it forward, you have to. It’s a gift we have been given to share.
It’s really about taking that one step forward and knowing there is a hand waiting on the other side to guide you along the way. I believe that. I also believe in Al’s light. It’s been guiding me for the past 6 years, right along with each and everyone of you. I’ve had an amazing support system here. I’m learning to walk alone, I don’t like that anymore than any of you, but I have an army of friends (and Angels) that keep me close and guide me along the way. I totally understand that staying home, not answering that phone. Now I look forward to the invitation and am even learning to venture out on my own. Definitely a very scary place for me!
I have my son and his fiance, and my daughter and that little 8 month old grand daughter that continue to make me smile and give me more purpose.
I am just thankful I found Leroy’s garden and every one of you. I couldn’t have done any of this with your support and “lifting”.
March 31, 2014 @ 11:52 pm
I had to grieve the loss of being a caregiver right along with grieving the loss of my Vern. 41 years as a wife and 4-1/2 years as a caregiver. If I was no longer a wife and no longer a caregiver … who the heck was I? I surely did not know. I threw myself into my job to try to find some kind of identity – but like Kathie, my weekends were not good. I stayed inside, didn’t answer the door or the phone, didn’t open the mail, didn’t actually DO much of anything. Slept in his recliner for months. I, too, still – after 3 years – just use half of our bed. And I also – still – have many weekends like those first ones. I put on a really good show in public and everyone thinks I’ve got this down. They’d be shocked to know how I’ve actually been living … behind closed doors.
Yes, I’ve pushed myself out the door – and outside my comfort zone – to try some new things. Camp Widow, Brave Girls Camp, online classes, volunteering. Some were successful, some weren’t. Trying to find ME. Asking questions. Were the things I learned during those very hard caregiving years, things I needed to learn in order to fulfill my purpose in life? A dear widow friend of mine believes being there for our husbands during those hard years – being caregivers – WAS our purpose in life. Perhaps. And I’d be happy with that because I know what I did for my husband was important. I know firsthand how critical it is to have an advocate. And I’ll admit that since I have no one to serve that role for me … it frightens me.
March 31, 2014 @ 10:18 pm
When a person goes into remission for a long time (as my husband has) you still have a caregiver role. You feel responsible to “keep watch” for any signs of illness. Once you meet cancer, you don’t ever trust it again. A dear friend who had breast cancer and then ovarian cancer, now has ovarian cancer again. A reminder to me that at any point you could have to get out those full-time caregiver tools.
March 31, 2014 @ 8:11 pm
You have to slowly realize, accept actually, that you’re still here and alive. Not that easy I know. It took me five years to buy a new shirt, took me six years to get a pair of new shoes. After all what’s the point, the cancer might maybe could still return. But it doesn’t, time matches on, seasons change, I , we change, looking back such a distance has been traveled.
That is the trick I suppose to live your life, it’s a life worth living after all, as someone once said.
March 31, 2014 @ 8:01 pm
It’s hard to define the after care self. The brakes are suddenly hit and you go through the windshield while your life shatters just like the glass. I had “managed” Jim’s life for 5 1/2 years and it was like a house of cards but it never collapsed. Nobody could do it like I could. Now I go to work, a lot, come home, rarely socialize and the weekends I have a hard time motivating myself for anything. I’m still looking for myself and I imagine a lot of other caregivers are as well. I think it’s great when one can make a new “plan A” and get on with life.