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