Please Don't Hurt Those Broken Hips!

Thank goodness it’s Saturday. I know I probably went to sleep last night with a smile on my face knowing that when I woke up, there would be no one here but Mother, the cat, and me. Mom’s peacefully dozing, the cat's curled up at the window, the house is calm and blissfully quiet, and I can move quickly from one job to another without being interrupted to the point that I never accomplish one thing. There’s a lot that has to be done here in a day just to keep up with Mom’s care, and all the other things I’m responsible for have to be sandwiched in between, or after, she’s seen to. Add a new aide to the mix, and as quickly as their coming and going here, and believe me, things are quickly out of control. People keep asking how in the world I handle it all and my response is that I’m sure I went crazy a long, long time ago and just haven’t slowed down long enough to know it because I know no sane person could deal with it. If that is the case, it’s was a blessing, but I prefer to think it’s by no more than shear determination, and thinking about what the alternative would bring to Mom if I didn’t.

So that you don’t think I make mountain out of molehills when it comes to Mom’s care, I’m going to try to explain why most of what is done for her has to be done in specific ways. She’s not the kind of patient that someone can walk in the door and start caring for. To begin with, I’ve been told her condition is more advanced than that of someone who is cared for at home because most caregivers, especially someone who has to do it alone, have usually cried uncle by now and found a nursing home. Don’t get the wrong idea. She definitely is not at death’s door. I always say that with hesitation because something could crop up today that changes that and I know it. She has a problem now with her stomach that concerns me and that I’m hoping yesterday’s blood work will lend a clue to, but her vitals are good, her weight is good, her skin is in better condition than mine, and she’s so full of pee and vinegar that she doesn’t know what to do with herself. But her broken, but mended hips, and the contracted legs that are attached to those hips mean that you have to respect her limitations and then move and position her in specific ways.

I have read, and been told, that the average life span of someone Mom’s age with just one broken hip is one year, if they don’t die within hours, days or weeks after it happens. Both of her hips were broken three years ago and miraculously she is still here. She received no emergency treatment that I can determine when it happened in the hospital, and I brought her home without knowing what was wrong. It was seven weeks later that I learned of the fractures, even though I’d begged hospice all that time to have x-rays taken so I’d know why she was in so much pain and so I’d have direction as to how to turn her, even touch her, without hurting her more. Throughout those seven weeks, she was handled by numerous hospice nurses and me, and even made to lay propped on her side when she had wound care for the growing bed sore, or even when changing her pants, all the while with two broken hips. That was inhumane and I will never forget it. But that’s another story for later.

Not one doctor or nurse, no one, ever explained how to handle her once the truth was known. In fact, I learned about the fractures during a hospital stay for an unrelated problem when a rude, arrogant, and obviously burned out orthopedic surgeon came to see her to determine if she was a good candidate for double hip surgery. When I asked why in the world for, he said because she had two broken hips. It knocked the wind out of me and painful images of her propped on her side all those weeks flooded my mind. I was in total disbelief, angry, hurt and ashamed to think of what she’d gone through because of my ignorance and hospice’s avoidance. After the surgeon saying she obviously wasn’t a candidate because of her deteriorated condition and asking in an accusing tone of voice how it had happened, I gathered myself together and said that before I told him something he probably wouldn’t want to know, I would like to know first just who in the hell he was because he’d never introduced himself. Turned out he was a senior orthopedic hospital doctor and after hearing that it happened in ICU right there in that hospital, he said it didn’t, that they were old injuries, which implied it had happened at home and, boy, did I tell him differently. He started to leave and I said the least he could do was tell me where to place my hands and how to turn her. His response as he brushed me away with his hand? “Just do what you have to do and let her lay.” With that, he turned and walked out and it took all I had to keep from chasing him down and cold-cocking him, even if he was bigger than me! He’s on my people-to-pay-a-visit-to after our journey here ends.

I brought Mom home determined to put together the story of what had happened to her in ICU and even more determined to learn how to safely handle her, and to protect her. I brought her x-rays and radiology reports home even before she was released so I could see where the fractures were. I only managed to get them that quickly by saying I needed them for a second opinion. I just didn’t tell them it was mine. If I hadn’t fibbed a little, I would have waited weeks for them to be released.

I once managed a radiology practice so x-rays and reports were nothing new to me. I didn’t know much, but at least they weren’t new to me. I saw for myself the femoral neck fractures on both the right and left just inside the hip bone, and learned for the first time of the identified object in her pelvic area, which was noted in the radiologists report. I have a theory about how it got there, which I’ll explain in another post. Luckily the fractures were clean, not splintered or ajar, which I’m sure has a lot to do with why she’s still here.

I spent hours visiting every reputable orthopedic site on the Internet and reading about hip fractures and contracted legs. What I learned concerning life expectancy and resulting life-threatening health issues was terrifying, but I knew that being well informed was my only chance of not adding to her misery. I learned about keeping her flat as much as possible, about lifting both legs as a unit and never forcing them apart, about not rotating her hips and torso or make any movement that might cause grinding of the joints, which could cause a bone splinter that could puncture or sever a blood vessel, just the basics that I could read and understand. Those things combined with common sense, like not gripping her hip and applying pressure to it when I turn her up, or supporting the small of her back once she’s turned, just plain common sense, plus Mom’s help in letting me know what hurt and what didn’t has played a large part in us making it as far as we have. Her hips are healed now, although improperly and forever weakened, and she has relative comfort as long as you take a few simple precautions when you handle her, especially when turning her. It hurts her when you don’t and you are risking breaking those hips again, or something else, if you don’t understand the reason for and necessity of memorizing those few simple steps. That’s why I stay around the clock with her when she’s in the hospital because I have yet to meet a nurse, or their aides, or, believe it or not, a doctor who seems to know them, or if they do, follows them. And that’s in a darn hospital!

That’s also why I hold my breath each and every time a new aide walks through our door because if they don’t listen, don’t have the reasoning skills to understand the logic of what I’m explaining and demonstrating, and the ability, sometimes even the concern, to do what I so carefully show them to do, Mom will be at risk any time they work with her. Add that to also having to teach them how straight to set her up before putting anything in her mouth that will result in swallowing, what aspiration is and what to do should she gag or choke (Please!), how to REALLY wash a bottom, how to straighten her body out when they pull her up so she’s not left to ache in an uncomfortable position, just the simplest things, and you can understand why I love weekends. And why I don’t want her in a nursing home where I can’t be there to watch over all those things. I don’t want her to relive the pain of broken hips, or die from it.

Poor thing. Do you know what I think of when I look at what she goes through every time someone is trying to learn to change her pants? Have you ever taken a CPR course? If you have, you’ll know what I’m talking about. If not, I’ll explain. People practice on a life-sized, soft rubber dummy. It has a mouth that’s open, a tongue, and nostrils, and when you hold its nose and breathe into its mouth, its chest rises and falls, just like a real person. That’s poor Mother, rolled around like a sack of potatoes, gripped awkwardly in all the wrong places, ending up in positions she shouldn’t. I feel like she should be stamped all over with For Demonstration Purposes Only. I just wish I was Wonder Woman again and could take care of her by myself like I did for the first four years she was sick. But I can’t. ICU saw to that. I’m older now and she’s physically harder to care for, and I just can’t. But, oh, how I wish I could, for both our sakes.

Till next time,
Sharon

How Can It Come To This?

I’ve got to write these thoughts down as they’re so quickly coming to mind, put them on paper before they’re lost as the next flood of thoughts fill my head, feed my emotions.

Mom has been angel since last Thursday. We were by ourselves three out of the last six days and things are always so much better when it’s just the two of us, unless she’s in an agitated state and can’t help herself. But when she’s calm and we can talk without anyone else being privy to our conversations, well, it’s the way it should be. It makes all the difference in her attitude and behavior. I can reason with her and we make it easily through all the daily care that normally upsets her. We talk about the cat, about the weather, about my sister, just normal conversation about anything that comes to mind. During these times, she answers my questions, tells me she loves me, calls me Honey, and all just as normal as can be. Then she babbles and I usually don’t have a clue what’s she’s saying, even though I’m sure she does, and I go right along with her like I understand every word. I sing to her to help get her through the things that I know make her mad, joke with her, fuss with her. I interact with her in the same way I have all my life. She appreciates being treated normally, and she responds. It gives her comfort, brings her peace, and lets her know that I don’t see her any differently than I ever have. We enjoy the days, and our time alone together. And those times usually result in another sweet memory for me. I kissed her the other night and told her I loved her. “You’re lying.”, she said. “No, I’m not. I love you with all my heart, and you know it.”, I answered. “Yeah.”, she responded after a long silence. “And I love you, too”. Those special moments, the ones where she responds in a totally coherent and tender way, are the moments I’ll always remember, the moments that will always stay in my heart. They are each and every one a treasure.

We had a rough day today. Training aides is oh, so hard on her. Everything takes longer, the hows and whys are gone over and over again. Explaining things about her hurts her, makes her angry, wears her out. But she tolerates it, sometimes well, sometimes not. Today, again, she was angel, and I know she was exhausted by the time we finished with all her personal care and finally left her alone to rest.

I’m exhausted, too. I didn’t hear the alarm this morning, the cat fell down on his job and didn’t back the alarm up with a gentle nudge and a soft paw touching my cheek, and Mom slept through it as well. I woke up ten minutes before the aide got here and I hit the floor running. It was nonstop from that point on. I ate five or six bites of macaroni salad and a handful of chips at 2:30 this afternoon, and called it breakfast and lunch. I put on the first pot of coffee about 5:30 and fell into the recliner with the heavenly first cup. Mom dozed a while, then woke up and called out the way she always does. I reassured her that I was sitting right by her and watching her closely so she could rest without worry. She gave her usual “All right.” in the sweetest voice you can imagine and then dozed off again.

I finally found the energy to open a can of soup, and ate it because I knew I should, not because I wanted to, all the while with one question running through my mind: “What am I going to do? What am I going to do?” Another day lost without working on the Web site and tomorrow it will start all over again. Every minute of my time will be filled with a new, confused, unsure aide. Mobile x-ray is supposed to be here, as well as someone to draw blood. It will be a day filled with what’s most important: Mother. But another day lost at trying to slow down that freight train that’s barreling towards me while I'm frozen to the tracks, feeling like a deer caught in headlights. The soup slowly disappeared, but the question lingered.

She was sleeping soundly and there was a TV show coming on at nine that I really hoped to see, so I took her vitals, checked her oxygen level, carefully straightened her in bed and fixed her pillow. I had it in my mind that I could actually relax with another good cup of coffee and watch that show in peace. It came on at nine. She woke and started throwing one of her little mad fits at exactly 9:04. I know. I looked straight at the clock, thinking that I didn't believe it. I went to her bed, tried to calm her, begged her to please, please let me have a minute to watch a show that I really wanted to see. No way. She was going to yell. She understood what I was saying and I knew she could have stop if she tried. But she didn’t want to and there was no convincing her otherwise. So I shamed her, told her I’d given her every minute of my day and that she was being unfair, and that I was going to kitchen to watch the little TV and she could just yell if she wanted to. And I did. And she did.

She grew quiet just as the first commercial break started so I went back to her bed to be sure she was okay. She looked at me so pitifully and told me she was sorry and that she loved me. I told her I was sorry, too, and that I loved her, and that we were both just tired. Then I stroked her brow, kissed her and told her everything was fine. She looked so sad, so tired, so sorry. It broke my heart. I went back into the kitchen where she couldn’t see me, and I cried. Then all the thoughts and all the memories started flooding my mind.

Mom and I have gone through more through these last eight years than anyone could ever know. I’ve held her head when she was sick and then cleaned up the vomit. I’ve stood beside her bed with her turned up on her side, stool running like lava and me holding pads under her to catch it. I’ve learned about dementia, Alzheimer’s, irritable bowel, Gerd, pleural infusions, infections, medications, nutrition, feeding tubes, heart attacks, bedsores, sleep apnea, pneumonia, aspiration, rectal prolapses, respiratory failure, and where to touch her and how to turn her when her hips were freshly broken. I’ve twice held her out straight to keep her from falling off the toilet when she had seizures. I’ve cleaned drainage from infected wounds, dressed skin tears, sat on a stool next to her bed with my head resting on the mattress whenever I could so I could be close to her and check her BP every half hour all night long. I’ve held her down through manic episodes, endured her biting, her scratching, and having my hair pulled. And I've held her close and comforted her when she was terrified or in pain.

I actually removed a catheter after days of begging the hospice nurses to do it because she kept crying and telling me that it hurt her and asking me to please, take it out. She was in horrible pain from her broken hips then, and after finding out later that there was an unidentified object lodged in the area of her bladder, which I’m guessing was left there when she was in ICU, I know that catheter had to hurt. And no one would remove it. She begged so one morning that I called hospice, asked for the nurse supervisor, and told her it was coming out and that she’d better tell me how to do. Yes, it could hurt her, she said, and told me how to simply and safely remove it. Because of her fractured hips, poor Mom couldn’t hold her legs upright for more than a second before they would start shaking and then collapse to the left side. What I had to do required both hands so I asked her to help me if she could, to try to find the strength to hold her legs up for just a second or two so I could do what I had to do. Somehow, she did. I braced her left leg, which was the weakest, against my shoulder and her right leg against my forearm, and with one clip of the scissors, it was out. I’ll never forget her big sigh and the look of relief on her face, or her tone of voice when she thanked me. All I could think of was how many days she had begged to be helped and in one brief second, she knew relief. I took what I had removed into the bathroom, and I cried.

We’ve gone through all of this and more. I’ve done everything I can to help her, to help her deal with each stage of dementia and her fears, to take care of her. And she’s tried to help me do things for her, even when she was barely able. Where she found the strength to hold those wobbly little legs up with very little help from me, I’ll never know. But she did. Or where she found the strength to walk from the bathroom after those seizures, into her bedroom and then climb into bed with me barely able to keep her on her feet, all because I told her I was afraid we'd never make if she didn’t help me. But she did. And we always made it. We’ve accomplished the impossible to give her a chance to hold onto life, which is what she still wants to do, and so that we could be together. These have been grueling, torturous years for both of us, but we’ve held onto each other, depended on each other, trusted each other, and neither of us would have it any other way.

I forgot about my TV show and sat there watching her sleep, while all these memories and more came to mind. And all I could, and can, ask myself is: How can it end this way? How could we have gone through all of this, fought our way through almost each and every day so that when her time came, it would hopefully be here, with me holding her and telling her that it was okay, and not to be afraid, that God would see her safely to a place where she could finally rest, and that everything would be fine. I don’t want her dying in a cold hospital, or even worse, in a nursing home, surrounded by strangers who take over and make me stand aside. That has been her greatest fear, and mine, too. I want her here, in the peace, and calm, and warmth of her own home, and with me. It’s what we’ve fought for, and the way we both always saw it to be.

I asked God why, why would He let us struggle the way we have, overcome the things we overcome, hold on so tightly to each other, and all to end in the way we’ve fought so hard to prevent. I told Him that if was His will that I lose what little I had left, so be it. I accept that. But I also asked Him why it has been so impossible for me to make time to earn even a small income so that Mom and I could make it to her end together? Why has everything I needed to do to keep us together remained so far out of reach?

Then I asked Him to help us with Mother in mind, and to please, please not let this happen to her. Not after all she’s gone through, all she’s suffered, all that she’s put up with as I struggled through learning about each and every thing that I had to do for her, all that she’s survived, just to come to the wrong end. I don’t know how she’s done it. I don’t know how I’ve done it. But we have. And it can’t end here. Not like this. Not yet.

Sharon