Allow Me To Introduce My Blog...

My mother has Chronic Obstructive Pulmonary Disease. I have been her caregiver for the past four years. I saw her through a partial amputation of her foot, and the eventual amputation of her right leg below the knee. 

I took her to the emergency room at the end of March 2010 because she couldn't breathe. I have not been able to get her home since. She was placed in a nursing home for rehabilitation, only to be sent back to the ER a few days before her release. Her doctor made the decision that she needs full-time care beyond what I can provide on my own. In the blink of an eye, our life as we knew it was over for good. 

Unless a miracle happens, we will be losing our home and everything we own. We never even considered the possibility that her care would become so labor-intensive and medically complex that I would not be able to handle it on my own. Not only am I watching my beloved mother suffer the horrendous effects of a lifetime of indulgence, I am fighting a losing battle to keep our home of forty years. 

Unless I move three hours away from my critically ill mother, I will be homeless. In this blog, I will share my experiences as a caregiver, my frustrations with nursing homes in general and my struggle to wrap my head around this devastating wrinkle in our lives. In order to keep the posts from becoming too long, I will have to break them up into sections at times, so please bear with me. 

So Much For The Golden Rule...It's Every Man For Himself...

Let's get something straight...drop the tough love. I am not a drug addict. I am not an alcoholic. My mom is fighting for her life. Please do not say stupid things like...what do you expect, people don't live forever, she's had a good long life, don't feel crapped on, there are a lot of people out there who are far worse off than you are, death is a part of life, it's the natural order of things, you knew this day would come, would you rather that she suffer until you're ready to let her go, it's no big deal, suck it up, get tough, deal with it, that's life, oh well, I know it's hard, so what, etc. ad nauseum. If you're too busy with your own life to waste time offering any real comfort in mine, then do me a favor and just shut the hell up and stay the hell away from me.

I actually reached out to this friend I knew a long time ago when I stumbled across their Facebook account. I mentioned some of the people we used to hang out with, what church we used to go to and asked them to please keep my mom in their prayers (they go to church). I asked them to please let me know that they got my message. Ironically, this person would be very familiar with my mother's particular illness (COPD), because they had studied respiratory care in college and were now actively practicing it. Now, correct me if I'm wrong, but I thought compassion is supposed to extend to everyone when you're a Christian...regardless of whether or not you remember them well or even remember them at all. This person completely ignored my simple requests to keep my mother in their prayers.

I have encountered this cold-heartedness on way too many occasions with people who are affiliated with the church on a regular basis. I have found far too many (but not all) to be petty, judgmental, cold, opportunistic, unforgiving and outright cruel. I told this person in one of my messages that I remembered that they were kind. It became painfully obvious that the person I once knew no longer existed, because that person really used to care about me and valued me enough as a friend to deem me worthy of a response. I reached out at one of the most devastatingly painful times in my entire life. In complete and utter indifference, they abandoned me to my grief without so much as a word of encouragement. To find out like this that I no longer have any worth in this person's eyes, so little value as a human being that my messages were simply ignored...it was a bitter blow.

I have complete strangers that I talk to online that are more compassionate than I could have ever hoped for. They openly express their concern about what's happening to my mom and they've never even met me. I know die-hard atheists that are far more compassionate and concerned about me than this person was. The Bible that I remember says "Do unto others as you would have them do unto you." I guess I must have read it wrong. There is a rock where this person's heart used to be, which will come in handy when it's their turn to deal with the imminent passing of a loved one. You can't feel your heart break when you no longer have one.

My Mom Is Having A Rough Month...

It's been nearly two weeks since my last posting. My mom has been in the hospital twice within the past two weeks. The first time, she was severely anemic and needed three pints of blood. She was out only a couple of days before she had to go right back in again with pneumonia and a blood infection. I talked to her doctor today; they will be amputating her left leg below the knee as soon as she's strong enough. She is going to be a double amputee.

Last Christmas, Mom was at home. I cooked us a nice Christmas dinner. We were happy. This year, I'm alone in our house, scared out of my wits, completely isolated at one of the worst times of my life. There are no decorations up, there is no holiday music playing. I don't think people understand just how terrifying this emptiness that is swallowing me whole right now is turning out to be.

I still keep wondering what on earth I did to make God so angry with me that he would allow my family to suffer so consistently and leave our prayers unanswered all of these years. I beg people not to leave me alone with this, but they do. There's always something more important that they have to do. They're more than willing to take me to the hospital and drop me off, but nobody will stay with me to visit with my mom. Seeing her like this...it's eating me alive in a way that is more painful than anything I have ever known. Even being violated as a child doesn't come close to the pain that I'm feeling now. I am in agony, and I am alone...

Our Holidays Will Never Be The Same...

Yesterday, my mom went into the hospital for the transfusion that I knew she needed two weeks ago. It's infuriating when medical professionals won't listen to family members when they know without a doubt there's something wrong with their loved ones. Mom needed three pints of blood, but they infused it too fast (for her). The rapid increase in blood volume made it difficult for her to breathe, so now they are keeping her until they can improve her ability to breathe before they will release her back to the nursing home.

The hospital is several miles away in Waukegan, Illinois. As it is difficult for me to acquire transportation, I will not be able to see her until she is released back into the nursing home. I hate being apart from her as it is, but at least I could walk to see her. When I took her clean clothes to her on Thursday and picked up her laundry, Mom commented that she wanted to cook a turkey and bake some cookies. She frowned at me and said, "This isn't going to be much of a Christmas." I told her that as long as I still had her with me, that was all the present I needed.

Mom loves the holidays. She loves all the cooking, baking and decorating that always went along with them. Now it's just the nursing home life 24/7, her body too compromised to allow her to enjoy those things the way she once did. She used to dance around the kitchen, and always try to grab me and make me dance with her. She and my dad were amazing to watch when they danced. People would stop and smile at them as they jitterbugged around the floor. Now there's only a stump where her right leg used to be, and part of her left foot is soon to be amputated.

You wouldn't believe the shadowy images of her life as it once was that swirl all around my mom as I watch her maneuver her power chair slowly down the hall. I want her to jump up and take me by the hands and dance with me the way she used to, happy and whole, gliding into her golden years with the health and vitality that should have been her right. Big Tobacco stole everything away from us, and I hate them for it. I hate them so much for what they've done.