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.

Still smoking? I'm begging you, please consider this possible future...

Yesterday was Thanksgiving Day. I spent it with a friend and her family. One of them asked me about my mom and I broke down. It was a thoroughly humiliating experience. I dread meeting new people now. I am consumed by such overwhelming grief, bewilderment and rage I can hardly keep it together.

My friend and I stopped by the nursing home to see my mom, and she kept nodding off while we were talking to her. She is also bruising more easily, having a lot more trouble breathing and seeping blood from her damaged foot and bedsores. The last time she exhibited these symptoms, she wound up being severely anemic. They had to give her three pints of blood. I have been hounding the staff at the nursing home to order a blood test for over a week now, but they won't do one until the 1st of December.

While I was at the nursing home today, mom had no less than three breathing treatments in the six-hour period I was there. She is supposed to have one every four hours, that's how compromised her breathing was. Then, she bumped her bad foot into the wall, and blood started dripping out of her bandage. I ran around trying to get someone to change it for her. They are going to wrap her toes with more gauze, but they aren't going to change her bandage until tomorrow. There were tears in my mom's eyes from the pain, and fear in her eyes from the shortness of breath. It's like I'm standing in front of her while somebody smothers her with a pillow and there's not a damn thing I can do about it. She watches while I sit at the foot of her bed and sob and tell her I'm sorry because I can't help her. I can't make her breathe better, no matter what I do.

I'm telling you now. If you smoke, quit. If you care about yourself or the people you love even one tiny bit, quit. Now. Don't wait for the perfect day to do it. There is no perfect day to do it. My mom says when she tries to breathe, it feels like she has a sponge in her lungs. She can't move any air, and it terrifies her. There is nothing about smoking that makes it worth your while. It is a dirty, filthy, expensive, life-sucking habit with no health benefits whatsoever, and to take a chance that you will be one of the extremely rare few that will suffer no noticeable ill effects until the day you die is not worth it. That's what my mom used to think. She doesn't think that way now, and now, it is much too late.

Nobody Deserves This, But My Mom Certainly Doesn't...

I have never been so angry and so terrified in all of my life. I just found out that my mom may be losing her other foot. I am also fighting a losing battle to make sure that she is cared for properly. My mom now has two pressure sores. One of the employees told me that it's because my mom is so uncooperative. "We tell her to prop her leg up, and she won't leave it long enough. We tell her she can't sit in her power chair too long, but she won't let us put her in the bed. She's been having a rough day, she was crying and carrying on this morning..."

Now, it's not like everything else wasn't already getting my attention mind you, but my mom is not a person who cries and carries on. I asked her if she had been crying. She said yes, that she had wet the bed that morning and made a terrible mess. I told her it wasn't her fault, that they're supposed to be helping her before it gets to that point. We have both also made it very clear to the staff that she is allergic to the elastic in the briefs, yet they continue to put her in them. By the time I got there on Monday, her legs were burning so bad she was crying out in distress. She's an amputee for crying out loud, if she could do everything herself, she would!

Mom said she needed to go to the bathroom. The aide told her, "just go ahead and wet the bed, it's easier that way." I know that it's very difficult for my mom to breathe when she exerts herself, but that's no excuse to not take her to the bathroom. I watched as my once very independent mother wet the sheets, the urine spreading and quickly soaking her clean underwear and shorts before I could get them out of the way...

You have no idea what it's doing to me to see her like this. When she was at home, I did everything: cooking, physical therapy, dispensing medication, keeping her clean, and also importantly, making sure that she was happy. If she wanted to watch something on TV, or wanted a book, or needed anything, I made sure she had it. Now that her medical needs are beyond my capabilities to handle, I'm watching in horror as she resigns herself to her fate in a place that only cares about her paycheck. There are some employees there that genuinely care about her, but caring about somebody and actually caring for them are two different things.

She's deteriorating. Medicare only pays for a certain amount of physical therapy and the state doesn't pay for any. All of the strength she had gained, she has lost. Her left arm is so weak it is almost useless. When she went into the hospital at the end of March, we never expected that it would be the last time she would ever be in her home again. She has never been away from home for this long. We miss each other very much, and it's killing me to see what's happening to her. Nobody deserves this, but especially not her. My gods mom, I am so very sorry that I have failed you...

Fairbanks Capital Corporation Ruined Our Lives

With my brother holding the rein on mom's finances, she blew threw her retirement fund without setting any of it aside. Before she knew it, the entire thing was gone, her bills were seriously in arrears, and her property taxes were three years behind. She was about to lose her house, so mom got in contact with Fairbanks Capital Corporation.

She did this on her own, mind you, and since I had never dealt with any kind of home loans before, I was too stupid to know that they didn't have her best interests at heart. A friend had to take her all the way down to Chicago to sign the papers. They gave her at least three times more money than she actually needed with a variable interest rate attached, even though they knew she only had Medicare retirement as an income. That was eight years ago. Her check came on the third Wednesday of the month. The payment coupon dates were always conveniently due before she got her check. They wanted us to double up a payment to be a month ahead, but we were unable to do that, so they started tacking on the late fees.

Catholic Charities wanted to go after them for Elder Abuse on mom's behalf, but they had just stopped going after major loan companies. I called a lawyer on mom's behalf. They gave me some cock and bull story about how the company didn't do anything wrong. My mom recently had her loan refinanced at a fixed rate, but the damage has already been done. Not only do we owe more than we did eight years ago, my mom's health has deteriorated to the point that I can no longer handle her medical needs at home. Once she was placed in a nursing home, my disability check couldn't stretch far enough to make the loan payments. Now we are facing foreclosure, all because of a loan she never should have been given in the first place.

They took advantage of my mom when she was at her most vulnerable, and we are going to lose everything: the home that was built for us in 1972, a lifetime of belongings, everything. The house is due to go in to foreclosure this Saturday, November 27th. Happy Thanksgiving. Happy Holidays. Yeah right. When they come to kick me out of the house, I'm walking in front of a train.

I Have Absolutely No Idea What In The Hell I'm Doing

An internet full of people and no one to talk to. When a keystroke falls in cyberspace, does it make an impact? What in the hell does it take to make a ripple in the world wide web pond? It is the most maddening experience ever! It's like screaming for help in a soundproof room that's right next to a busy street. Like jumping up and down and waving your arms in the dead of night when no one can see you. You keep screaming "I'm right here, can't you see me?!" and everyone goes right on by. What on earth does it take to get through to anyone on this thing?!

Roomates

My mom has the middle bed in a room with two other patients. I have requested the bed by the window for her numerous times. Every time they change her roommates, they never put her by the window. They also have a tendency to stick some real winners in with my mom.

Right now she's being bullied by a woman with late-stage Alzheimer's. This woman goes through mom's dresser drawers, eats her mixed nuts and finger paints feces all over the room. On more than one occasion, she has smeared feces all over the bathroom, making it unusable. I know she can't help it, but they need to have someone watching this woman. It is not my mother's job to babysit her. She's got her own problems. If my mom says anything to this woman about going through her stuff, she gets mad and waves her off.

One of her roommates was epileptic. When this young woman had a seizure, it scared Mom to death. She shot out into the hall on her power chair to get help, and to get away. She had never seen anyone have a seizure before. Then there was the roommate that died. Mom was in her own bed when the paramedics came and tried to revive this woman. She is being traumatized by all of these unpleasant experiences and it's all my fault. If I were not suffering from depression, post-traumatic stress disorder, panic disorder and anxiety disorder, I could have a job or two where I would make enough money to get her the hell out of there. I'm such a disappointment. Such a failure...

When the Credit Union takes this house, I've already made up my mind. I will not be homeless. I will die first. Depending on how long the foreclosure proceedings take, I've got about that long to live. Life has been kicking my ass since I was born. I have suffered every form of abuse from men that I trusted: physical, sexual, emotional, psychological and verbal. I have fought tooth and nail to believe in myself for just a second longer to find the strength to keep going. I have an order of protection against the only brother that I have. My dad passed away in 2008 from liver disease. My family has been demolished, and now this. I've always been able to fix everything. I can't fix this, and there just isn't any point to anything anymore.

Nursing Home Hell

No nursing home will ever take care of your loved ones the way that you do. The homes are understaffed and the employees overextended. Your loved one will become just another patient on the floor that demands time that they don't have.

Within the first week of Mom's admission, a brand new set of pajamas disappeared. Then a new shirt, then a pair of shorts. I started taking her laundry home out of necessity because we couldn't afford to lose anymore of her clothes. Even though you put labels with their name inside the clothing, the staff never reads them. If those clothes will fit another patient of theirs who needs it, they use it without hesitation. If the clothes are particularly nice, they will steal them.

The nursing home asked me to bring her bedside commode from the house for her to use. Although it was clearly labeled with Mom's name, it was packed up with a roommate's belongings when she passed away. They still haven't found it, nor have they replaced any of the clothing she lost.

Mom takes two different water pills, so obviously, she needs to go to the bathroom quite often. She would press the button for assistance, but many times they would get to her too late. The urine soaked clothes were put in a clear plastic trash bag. Unfortunately, so were her dry clothes. By the time I would pick up her clothes to take home, the entire bag of garments was soaked with urine.

If her clothes are clean after one wearing, they crumple them up in a ball instead of hanging them back up, or worse yet, put them in with the urine-soaked clothes. I have two very politely worded well-written signs on her clothes armoire. They are ignored 99% of the time.

Worst of all, this nursing home has a smoking program for it's residents. My mom was a two to three pack a day smoker for over fifty years. She finally managed to quit in October of 2008. In July, I found out that she approached an employee with money for a pack of cigarettes, and they went out and bought them for her. Despite the fact that a) she was a nonsmoker when she entered their facility b) she's on oxygen c) she gets four breathing treatments a day d) she takes Advair e) she's on steroids to reduce the inflammation in her lungs f) she's missing her right leg below the knee and in danger of losing the other leg due to the poor circulation caused by and aggravated by her lifelong habit...

These people went out and got the one thing for my mother that put her in their nursing home in the first place, then gave me some lame-ass excuse about smoker's rights and how they were obligated by law to do as she asked. I trusted these people to take care of my mother, to put her health first. Be warned, they did this and kept it a secret from me as well as her doctor. I called him up, crying my eyes out. He went to the nursing home and ripped them a new one on our behalf.

I don't give a damn what anyone says...they had no right to do that as sick as she is. If they want to go buy their own critically-ill mothers the one thing that's killing them, then so be it, but they need to keep their damn smoker's rights bullshit the hell away from my mother. She's been through enough, she's going through enough, and I'm already going to lose her a lot sooner than I would have in the first place.

If this place wasn't within walking distance, she would have been so out of there. I hate leaving her there. I cry every time I get home because I miss her so much, and I know they will never care for her the way that I did. I never would have gone out and bought her those wretched things, because I actually give a damn about what happens to her. I swear...it's like they want to ensure that she will never be able to improve her health enough to leave there...because they would lose a lot of money if she did... 

So Much Stuff...

When my mom's doctor decided to put mom in a nursing home permanently, it was devastating to the both of us. If I were able to care for her on my own at this point, she would be at home. Everyone always tells me you can get Home Health Care. What they fail to understand is, Medicare only pays for these people to come twice a week at the most, and after six months they're done. My mom needs medical supervision and care that I am not capable of providing 24 hours a day.

Before she got sicker, I was already going from sunup to sundown and beyond. I provided her meals, personal hygiene care, dispensed her medicine, flushed wounds, changed bandages twice a day, and physical therapy. It was not unusual to be awakened by sounds of distress in the middle of the night because she had another muscle cramp that needed to be massaged away.

Our house did not make caring for her any easier. It has been severely neglected over the years. There was so much violence and chaos in this house, we were too busy just trying to survive to concentrate on remodeling or repairing. The house is also not handicap accessible. Our "wheelchair ramp" is actually a ramp from a truck that somebody nailed to our porch. It was barely wide enough to accommodate her chair, and you have to back the chair down. I nearly dumped Mom out into our gravel driveway on more than one occasion trying to maneuver that chair down the ramp.

We have a step up into the house, so I eased her chair backwards over it to get her out of the house. It put her at a sharp angle, which made her very nervous. To get in, I had to pop a steep wheelie with her chair, then lift the back end up to get her in. Very dangerous, but it couldn't be helped.

Mom and Dad also kept everything and taught my brother and I to do the same. The house is a mess. The basement is full of a lifetime of things thrown everywhere. The upstairs isn't as bad as it was, thanks to the help of an Aunt and a Cousin. They live very far away and were only able to stay for four days. I haven't been able to find any help since. With the magnitude of stuff to go through, I would need a dumpster to throw things away in. They're very expensive, and with a good forty years of accumulation to sort, there's no way I'm going to get it done all by myself...especially with this foreclosure looming over my head.

I have until the 27th to come up with nearly 1500 dollars, and there's not a snowball's chance in hell of that happening. There are holes in the walls from things being thrown and from my brother's fist. The walls are stained with nicotine, dusty, filthy and dotted with cobwebs. The kitchen floor is warped from the refrigerator leaking.

There is a huge hole in the shower wall that is covered with a garbage bag. It has been that way for nearly thirty years. A friend of my brothers fell into the tub and busted the hole in the wall when he was drunk. He refused to pay for it. My dad and brother also refused to pay for it, so they taped a garbage bag over it and never fixed it. If the Credit Union takes the house in this condition, there is no way it is going to sell. If by some miracle it did, Mom would never get full price for it. It's going to sit empty, and I will be homeless for nothing.

The Avalanche Begins...

Once the nursing home started taking her Medicare check as payment, things went from bad to worse. Not only were both of us still reeling over the fact that there was a very real possibility that she would never get to see her home again (she hadn't been home since the last week of March at this point), but my disability income had gone from a supplemental income to the sole income for the household.

The Credit Union told me I needed Power of Attorney to discuss her Home Equity Loan and/or accounts. Now that they have those papers, they tell me my name needs to be on the property in order for them to proceed with a loan modification.

That's nothing but a whole lot of red-tape baloney. According to the Power of Attorney, I am a legal agent acting in my mother's stead. They're making excuses, dragging their heels, trying to make me miss some crucial deadline so that they can just take our home. Everything we own is in this house. It was built for us. We have lived here for the past forty years. It is not in good shape. It needs a lot of work. It would sit empty while I wander around living out of dumpsters, and the most terrifying thing of all is that they just don't care.

I have budgeted myself into the very dust, and there just isn't anything left over for me to make a $300 a month loan payment ($400 now that some payments have been missed). It's bad enough that I have to leave my mother in that god-forsaken place, but I just can't bear the thought that she is going to lose everything that she worked so hard her entire life for.

I have been to every organization and charity under the sun, but their programs have either faced drastic budget cuts or been eliminated outright. It has shot past frustrating right into devastating. I have done everything that I know how to do, but it is never enough. Without help, this is going to bury us both. If we lose this house, neither of us will survive it.

Change Isn't Always A Good Thing...

Things were a lot more difficult now. Mom was fitted with a prosthesis that was customized with a fun frog print (we both love frogs) and started physical therapy. I learned how to fit her with it and how to put her through her paces with it. It was a grueling but necessary process, and we were managing quite nicely on our own until that fateful day that mom told me she couldn't breathe.

It was during her stay in the hospital that she was put on steroids to reduce the inflammation in her lungs. Her blood sugar skyrocketed, making insulin a necessity. She was put on medication to regulate her heartbeat, which made checking her pulse necessary. Things spiraled out of control so fast from that point on that we didn't know what hit us.

My duties would no longer only be wound care, bandage changes, dispensing medication, personal hygiene, physical therapy and providing meals. I would now also be checking blood sugar and giving insulin, taking her pulse before giving her the heart regulating medication and feeding her a diabetic diet. I was already exhausted enough with what I was doing, and her doctor clearly saw that.

She was put into a nursing home for rehabilitation, but her Medicare ran out. Only days from being forced to return home to my care, she was sent back to the ER. She spent another week in the hospital being successfully treated for a MRSA infection. When her doctor released her to the nursing home, he told me he was sorry but that this time, it was for good.

Another Loyal Customer Pays The Price...

My mom started having problems with her health back in 2006. She was limping; complaining that her little toe hurt. The toe was dark, so we both assumed it was bruised and that she must have stubbed it. When it failed to get better, my dad and I took her to a podiatrist. After examining her toe and expressing his displeasure at the condition of it, he called her regular doctor, who told us to take Mom to the ER.

Turns out her toe was gangrenous from lack of circulation. I never would have guessed that; I always thought gangrene would be accompanied by an unmistakably foul odor, but I learned that is not always the case. Her doctor ran some tests on her and discovered that her right carotid artery was 95% blocked. Since there were no cardiovascular surgeons in our area at the time, she was sent to Milwaukee to have the surgery.

While she was there, they discovered that the circulation in her right leg was blocked from her hip all the way down to her foot. She had a second surgery to restore the blood flow; stents were put in. Her doctor and I had been nagging her to quit smoking for years, but all of his warnings and my pleas fell on deaf ears. Even after she got the call from her doctor warning her that if she did not quit she was going to lose her leg, she still didn't believe him.

So strong is my mother's addiction that she still denies that it had anything to do with her losing her leg or damaging her lungs to the extent that she struggles for every breath. The look of bewilderment and fear in her eyes when she can't catch her breath is agonizing to see.

Thank you, Big Tobacco, for not giving a damn about what your product does to your loyal customers and their families in the long run. My mom will suffer horribly (and I along with her) as she slowly suffocates until the day she dies, and I have no doubt that she would sing the praises of your product from beyond the grave if she could. You ruined our lives, and I hate you for it. You make me sick.