Here's the thing...

I've been thinking a lot lately about a lot of different subjects. Many of which have been very difficult for me to think about. Since these latest setbacks with my health, I have thought a lot about the dreams I have and the person I long to be. A great deal of that I already know to a point. I've defined myself as a caregiver for most of my life. Beginning in grade school, I began helping with the children in special education, many of whom had Down Syndrome, some who had Autism, Epilepsy, and other types of conditions causing developmental delays and a host of other issues. Over the course of my complicated and difficult illness, I spent a great deal of time crying, feeling sorry for myself, and asking God over and over, "Why me?!" and "What did I do to deserve this?" The obvious answer, is nothing. God isn't punishing me for my sins by giving me this illness. I didn't do anything to deserve the pain and suffering I am going through. What I've come to realize is that God so desperately wants me to seek refuge in his loving arms (so to speak) and to allow this to pull me closer to Him rather than pushing me away. It makes me think about a poem or story I heard a long time ago.

The Footprints Story
The gist of the story is that a man has a dream one night that he was walking on the beach with God. During this walk, scenes from the man's life flash across the sky. He walks down the beach noticing two sets of footprints in the sand, one set belonging to him, the other belonging to God. As he ended his walk, he noticed that many times during his life there was only one set of footprints in the sand. Looking into it further, he noticed also that during the most trying and difficult times in his life, there was only one set of footprints. This deeply troubled the man, so he asked God "Why did you leave me during the most difficult times in my life? I thought if I promised to follow you, you would help me through all parts of my life, but you left me during the hard times." God replied "My child, I love you and would never leave you. During the times when you struggled through your life, there is only one set of footprints in the sand because it was then that I carried you."

This story has a great deal of meaning for me. Sometimes during the most trying times in our lives, it feels like God has abandoned us. What we don't realize is that God is actually carrying us through, even if we're not aware of it. I was able to get together with a dear friend of mine, who is a social worker and chaplain at the local hospital. Our paths have crossed many times, as he previously worked for the local hospice program as their social worker and was involved in the cases of many of my residents. He also was my Sunday School teacher during the time I was going to my grandmother's church while I was going through confirmation. When I get together with him, we often talk about caregiving, as we're both very tenderhearted caregivers. In addition to being a social worker, he also facilitates grief group here in town and worked as a bereavement coordinator at the local funeral home. So yeah, we've known each other a while. At times in life you come across people who are "kindred spirits" so to speak. This man is an example of one of those people in my life. I was able to discuss a lot of difficult subjects today, as well as catch up with my friend. For that, I thanked God.

What I have decided after a little thinking, was that I want to be back to the person I used to be. In many ways I will not be the same, because the suffering has changed me to a point. But I don't want to be bitter about this. I feel that God has a bigger purpose in mind here. God is trying to teach me something. It may be that by suffering myself, God will allow me to more fully understand the pain and suffering my residents go through. I can't tell you how much it means to have someone who understands where you're at. Sometimes during my experiences in caring with people with Alzheimer's and Dementia, I get a ringside seat to the struggles of that individual's family. I can tell them I know where they're at, because I've been there myself.

These are my great grandparents. Both of them are suffering from the affects of Alzheimer's disease. Grandma is at a much more advanced stage than Grandpa. She has suffered from Alzheimer's for nearly five years now. At this point, she lives in the locked dementia unit where I work. She is in her own little world, can go from talking about sewing to talking about picking apples to discussing pills. But it wasn't always that way. I saw my Grandma slipping into the world of Alzheimer's much sooner than most of my family did. They all thought she was just getting old. But I'd been working in long term care long enough, I knew what was going on. She and Grandpa Bob moved into the independent living building of the campus where I work after Grandma May was a resident for a rehab stay. For a while, they were both somewhat stable, but then things took a turn for the worse. Grandma couldn't take care of herself anymore. Her legs became weak, she began to forget what day it was, what month it was. She began to mix up the days so much that she would take double doses of her medications because she couldn't remember if she had taken them or not. She was then admitted to the hospital after collapsing due to low blood pressure. It became evident that she was no longer able to live without twenty four hour care. During her stay at the hospital, she needed constant 1-1 attention because she was not safe to be left alone. Her behaviors were so extreme at times and she was no longer able to be redirected. I remember having to ask the nurses to give her something to calm her down because even I, who had always been able to calm her down before, could not reach her. We met with the social worker who coordinates discharge plans for patients in the hospital and she told us that Grandma needed to be on a locked unit for her safety. What I had feared the most was coming true. The Grandma I had known for my whole life was gone to the disease. No longer could we pull her into our reality. We had lost her.

Shortly thereafter, Grandma was discharged from the hospital into a long term care facility about half an hour from where I live. I only visited her there once, and then she could still walk. Before long, I heard that my Grandma was going to be transferred to my workplace on the locked unit. My heart soared, I was finally going to be able to see her every day and keep an eye on her. The Grandma that came though was not even close to the Grandma I knew with Alzheimer's. She was nearly comatose, had three bedsores, had to be fed all of her meals, and was essentially a vegetable. I was devastated. This was not acceptable for my Grandma, and my heart broke. Going back to those dark times is difficult. Shortly after being transferred, Grandma's blood pressure became dangerously low. We sent her to the hospital and when I went to see her there, it was like I had her back again. That began a wonderful process of renewal for her. She now feeds herself and even though she is still very much in her "own little world", she's happy there. And the best part is, she's free to wander safely. I see it as an honor to be able to be involved in her care. She means the world to me. And it's because of this I can tell my resident's families, I get it.

What I'm saying is, I'm doing my best to accept whatever this illness is going to bring to me. I will not stop fighting for my quality of life and attempting to advocate for myself to the best of my ability. But I finally see that there must be a bigger purpose at work here. I just need to be open to whatever that is. I continue to pray for myself and my doctors, that we can be a team working toward a common goal. I also am praying for all of my friends, especially those who are struggling right now.