Caregiving Experience

The following paragraph is from a fellow caregiver. The words may be hard to read, but are really, really important for an active caregiver to consider. I made the promise to my mother. It was a dangerous promise and it nearly cost me my own health. If you are actively caregiving, please, please read and consider the advice - no matter how hard it is to read or follow.

“Who among us caregivers hasn’t made the well-meaning promise, ‘I will never put you in a nursing home’ or, ‘I will always take care of you.’? As the primary or secondary caregiver, we meant what we said at the time. We felt that there was nothing that would stop us from caring for our loved one until the end. As diseases progress, we may be finding that their needs are more than we can handle, yet we still hear the echo of the promise and try to abide by it. We try whatever we can to keep them at home until a crisis with them or our own health is in such a decline that the promise must be broken. No two people have the same breaking point. For some it may be, ‘I will do it when they no longer know me,’ for others it is when they become incontinent. These are just two reasons that drive the admission for a loved one. Whatever the reason we will still second-guess ourselves and feel guilty for having to break our promise. This is where our emotions take over and blur our judgment. Because we felt we would always keep our promise, we didn’t bother to do any prior research on facilities or daycares. As difficult as it may be, we must begin to lay the groundwork so that we are prepared if that day comes.”

End of Life - Doors

 And am I glad to see a new year appear.....

The end of 2009 proved to be really, really challenging. I don’t know if I’m the only one who struggles mightily to hang on, but that was my reality during December. I’m sure that you can tell that by the infrequency of my posts here.

One of the things I was committed to and had a deadline for was The Sketchbook Project. I signed up for it (with encouragement from a friend), paid $18.00 to receive my book and was assigned a theme. My theme? The End of the World. Dismal, at best!!

I thought about it for a while before actually beginning the project and decided to approach it as the end of anything also creates the beginning of something else. Then I made a list of ends and beginnings.... Next, I created doors. One door closes. Another opens. Each door concealed an ending or a beginning.

My first real entry in the book was about The End of Life. So, it’s December - the holidays - I’m already especially missing my mom, and now I have to torture myself with putting my emotions in an art form, on paper. I found some images that spoke to me as well the hands that I sketched to use here on my blog. As I began, the pages seemed to unfold without my help. With each stoke of the brush, pen, and pencil, emotions began pouring out.End of Life Open Doors

And that was only the first page!

Some pages weren’t so tough to create, but most delivered a powerful, emotional punch.
Then, I came to the page about the completion of my book..... the book I’ve written about caring for my parents. It’s finished. Now what? More emotions. Feeling the pain all over again..... feeling the freedom to begin new things in my life..... letting go of the past..... acknowledging the end of part of my life that carried such an impact. I don’t know yet what to do with the book. Maybe I’ll write parts of it here for you to read......

When my sketchbook was completed, I mailed it to the required address. It will never be mine again as it becomes a part of a permanent collection. Letting it go was very symbolic of my life right now. It’s time to let go of the old and embrace the new. It’s time.

I had the best plan to write a positive, encouraging message this week....

Life has reached out and slapped me.

I keep thinking that this cannot happen any longer. You know.... that I’m over it. The caregiving is over. The grief should be over. The sadness should be over. The intensity of my emotions should be lessened. But, the truth is, it’s not. Holidays, especially Christmas, are still somewhat emotional. Every year I think that it will be better and it is incrementally better. I guess that the best plan is to simply accept what is occurring and keep moving. What I really want to do is to crawl under the covers and stay there until 2010 begins

I intended this blog to be encouraging to anyone who finds it. Today, it is not. I wish it were different, but it’s not. I think that it’s more honest of me to be transparent. Letting others know that some days feel really awful. I had reached a point where my creativity was sparking and most every day I was feeling strong and motivated. There is always an event.... a conversation.... or silence that begins the cycle of falling into my emotions again and then having to decide if I will stay there or choose to leave the safety of my emotional cocoon.

My decision will be to crawl out, but just not quite yet. I still have a few more days to navigate through. If you find yourself feeling this way, just know that you are not alone.

Hi Everyone,

I thought I should tell everyone following this blog that I will post again next week. Our adult son who lives very far away from us is home for a few days. I can't take my eyes away from him! Any of you with kids who live away from you will know what I mean. I'm soaking up every second that we have. It's been a year since our last visit. Way too long.....

Anyway, I'll be back with more next week.

In the mean time, here's a quote that became a lifeline to me while I was a caregiver for my parents with an insane family fighting me whenever they had the chance....

"I can be changed by what happens to me. I refuse to be reduced by it." Maya Angelou

Until next time,

Barb

It’s the day after thanksgiving and the craziness of the holiday season is beginning. My goal is to resist the hustle and bustle as long as possible. Part of that comes as a result of my years of caregiving and slowly giving up activities I loved. For many years, we decorated multiple Christmas trees. We built an elaborate North Pole display, complete with a train, ski slope, elves, Santa, twinkling lights and snow. Everything was beautiful and it took us weeks to finish. Then came the parties, creating and wrapping gifts, baking, cooking and huge family gatherings. Part of my resistance comes from being older and acknowledging an energy level that has diminished over time.

Looking back, I realize that caregiving shared many similarities with parenting. Both changed the fiber of who I am. My internal dialogue shifted from self confidence to self doubt. The time that I’d always spent caring for myself seemed nonexistent. Pressure and responsibility dramatically ramped up, with both roles. Once life shifted, it was never the same as before, no matter how much I wished otherwise. 

 Through reflection and meditation, I slowly grew to embrace the blessings that came with a new and different life. 

• When I married almost 37 years ago, at age 19, I became an instant mother to a ten-year-old daughter. Step parenting is rarely easy and our situation was no exception. I am grateful for the experience and especially grateful for our 3 grandchildren who bring color to our lives and keep us in touch with things like Facebook ,Twitter and texting! Thanks, kids!

• Our son entered the world when I was almost 22. He has been one of the most powerful teachers in my life. I’ve learned about loving someone more than I love my own life and so much more. My heart overflows every time I think of “my best.” Thank you, my son.

• Although I became a reluctant caregiver, I put my whole heart into it. I knew nothing about medicare, social security, retirement benefits, etc., etc., etc. But, I learned because I was willing. Through that crash course in helping someone when they were no longer capable of living their lives as before, I grew into a relationship with my parents that would not have otherwise occurred. Gradually, I accepted the fact that my dad trusted me to figure out what had to be done to care for them and to create the life that they wanted to continue living as long as possible. I learned that questions always had answers. I had to be wiling to keep an open mind and ask! Thank you, Dad, for insisting that I learn.

• Had I not accepted being a caregiver, I would never have leaned what a funny sense of humor my mom had, and so much more. We became more than parent and child, we became friends. I learned to embrace each day as a new opportunity. Thank you, Mom, for helping me truly understand that the present moment is the only moment and not to be wasted in wanting things to be different than they are.

• And, my life partner, my husband...... boy have we lived through a lot together! He has been beside me helping, supporting, and sometimes just holding me when life was beyond words. He has truly demonstrated the essence of loving someone. Thank you, my husband....my friend.

As you navigate the next few weeks, try to snag a moment here and there to remind yourself that no matter how challenging life is, there is always something for which to be grateful. Enjoy the moment. It’s the one you have!

 Barb