brain tumor

Few days make me dread writing my daily story, but then few days in my life have marked the beginning of such drastic change in my life either. It was December 12, 2007, twelve years ago, and my dad, Allen Spencer had been sick, or recovering for a little over two years, after being hit by Pancreatitis on October 1, 2005. My sisters and I had been caring for Dad, and our mom, Collene Spencer, who was diagnosed with Large Diffuse B-Cell Lymphoma in her brain in July of 2006. Mom’s tumor was gone quickly, and there were no other serious concerns with her, but Dad’s care required much more. Everything seemed to be going well, but Dad’s liver was giving out due to the intravenous feeding, something we couldn’t really see…or at least something we didn’t know to expect as a possibility.

My dad had always been the “rock” of our family. None of us ever considered that he was not as strong as he once had been. We knew that no matter what was going on around us, Dad always knew what to do about any problem. It was a very comforting feeling in a family where he was the only original male. Of course, his daughters were married now, and a few grandsons had also been added to the mix, but for our childhood years, my sisters, Cheryl, Caryl, Alena, Allyn, and I were the kids they had, and so Dad was the only male. He was used to being the man with the answers, and we always looked to him when we needed those answers. It was difficult to see him in a state of weakness, but we would fight for his survival with all we had…never expecting to lose the fight.

With Dad’s passing on that awful December day, our world was forever changed. We were now going to need to take care of our mom, who needed us more than ever. While her health was ok, she didn’t drive anymore, and wasn’t as mobile as she had been before. We had promised Dad, we would take care of her, and as with Dad, we wouldn’t have it any other way for Mom. It wasn’t just the change is our care structure that changed either. Everything changed with Dad’s passing.

We had seriously never expected to live on this earth without our parents, and now that entire perspective had changed. We knew that very likely the day would come when both parents and our parents-in-law would be gone. We knew that we were going to be the leaders of our families. It was up to us to keep our families close, as Mom and Dad would have wanted us to do. There would now be great grandchildren who have never met their Great Grandpa Spencer, and later Great Grandma Spencer. It was up to us to tell the kids about their great grandparents, so they wouldn’t be forgotten. t was up to us to tell them that their Great Grandpa Spencer was a World War II Veteran, who fought bravely for his country…to make sure that his legacy lived on. It is a big responsibility, and sometimes seems impossible, but we must, because our Dad showed us the way we should live, and we must now live it. There is no other choice. Twelve years ago today, my dad began his life in Heaven, and we miss him every day. We can’t wait until we will be reunited again. We love you Dad.

Dad and MomFor the past seven and a half years, my life has been largely defined by a series of responsibilities known as caregiving. For anyone who has ever been a caregiver, even for a short time, it is easy to understand what that entails, and what it means in the lives of those involved. Caregiving is not a job that usually becomes less demanding as time goes by, although that is not an impossibility. While caregiving is not an easy job, I can tell you from my personal experience that it is a very rewarding job. It is one that places you in a battle for life…or at least a battle to prolong life. While it is rarely a battle you can win in the end, you do win in that those final years are made more comfortable for the patient, and filled with the knowledge that you love that person so much that you are willing to make this sacrifice for them.

Now, after the passing of my dad, the recovery of my mom, the necessity of placing my mother-in-law in a nursing home, because Alzheimer’s Disease no longer allows her to stay at home, and the passing of my father-in-law, I find myself no longer in the position of being a full time caregiver. Yes, I still have minimal responsibilities with my mom and mother-in-law, like doctors appointments and visits with them, which are very important to their emotional well being, but the main responsibilities belong to others or are no longer necessary. So, I find myself wondering what do I do now that I am not a caregiver? What is life supposed to be like now? This has been who I was for so long. It was even all I talked about sometimes, as many of my family members can attest to.

A part of me is still very tired.  At times during the day, I feel like I could sleep for a month, and yet, I have trouble getting to sleep at night. A part of me is ready to get back out on the trails…walking and breathing in the fresh air, and yet a part of me feels like I just want to sit and do nothing. Maybe it’s an emptiness because of no longer being needed as much as before. It seems like concentrating is very difficult…unless it’s about why we lost the battle for life, or what we might have done differently.

I know that I will get used to having more time again. And as with my dad’s passing, I will come to know that you don’t get over it…you just get on with it. I will get used to not being a caregiver, but I know too, that I will never be the same person I was before. I can’t be. I have seen too much…learned too Mom & Dad Schulenberg_editedmuch…felt too much…know too much, to ever be the same person I was before. I have experienced the adrenalin rush needed to hold myself together during life threatening illnesses reaching emergency levels, and making the decisions necessary to treat loved ones who can’t speak for themselves. I have held their very lives in my hands, and been responsible for trying to bring them back. And, I have lost that battle…twice. I will recover from caregiving and I will get on with it, but I will never be the same. I don’t think it is a bad thing, and I would not change any of it, except the loss of my dads, but while I would do it all again, I know that I have been forever changed by this experience.

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