The Last Stage

So, she's in the last stage of Alzheimer's now. My big sister, only sixty-five years old, and she can't walk anymore. She sleeps most of the time and doesn't leave the house unless she has a doctor's appointment. She is forgetful. I repeat myself when I talk to her, but that's expected. She has more blank spots in her memory, more times she asks "Who?" We gently remind her of her son's fiancé, which nets us an "Oh, right." Does she remember the engagement, or that she's a grandmother? I don't know; I'm not there.

She has a wheelchair now to get her around. Her house is a ranch perhaps 1400 square feet, and she can't walk that limited floor space anymore. Ann is stuck either lying down or sitting; standing and walking are past and gone now, and her body is a trap. Her mind remains active, though often clouded. The certainty she possessed is gone, and hesitation colors her every word. Alzheimer's is a cruel disease.

I don't have anything to offer her. I can call, but often she's unavailable. Her husband says he'll call later, but that call never materializes. He's treading water, only now getting nursing help and devices such as the wheelchair that could have eased things for her, and for him. It seems she has so little now. She hasn't driven or worked in several years. She used to drive everywhere, making regular trips to Reno and taking vacations out-of-state. When her husband was in college, she worked to support them both. When he graduated, she kept working. Now she can't even walk. I'm grateful she lives so far away. Watching her deteriorate isn't possible with nearly a continent between us. I'm not visiting. I can't do it, can't watch her decline while unable to help her.

Is it better that she die quickly, and escape the living grave her body has become? Her mind is still here; she knows us and can still hold a conversation. She knows her surroundings and understands she's ill. How can I desire what she can do to be cut short? Her body fails her; she will become incontinent and lose the ability to feed herself or even swallow. She will lose the ability to speak. Her body will have to be repositioned regularly to prevent bedsores. This is not living. Will her mind still be working? Mental awareness in a largely nonfunctional body is torturous. How can I wish her to live? How can I wish her to die?

I am so glad I don't have to make the choice.

I wrote the above on June fifth, and almost three months later things are worse. She fell---again---and broke her hip. Ann's in the hospital now, something she and her husband managed to avoid until now. I woke up half an hour ago to the yowling of a cat, and when I looked at my phone to check the time, the texts from another sister were there with the update. It was only two days since I suggested to my brother-in-law Danny that she could break a bone; she's been falling frequently and he resists putting her in any kind of facility. I understand it feels like giving up, and he's devoted to her. They had their 45th wedding anniversary in August and he's fighting to keep Ann home.

My sister, before anyone knew about the Alzheimer's, suffered from Lupus and fibromyalgia. Both diseases cause pain and fatigue, and many times she didn't leave her bed until mid-morning or early afternoon. Now it's worse. She can't get out of bed unassisted, and fell trying; a few days later Danny tried for fifteen minutes to get her to the port-a-potty from the bed, but she slowly sank to the floor and he couldn't lift her. Both times he had to call for medical assistance, though the first time she did manage to right herself by the time the nurse arrived. (The nurse lectured Ann, telling her she had to remember to stay in bed until there was someone to help her up. She can't remember that! She's in the last stage of Alzheimer's! Who is this twit, anyway?) Dan has Crohn's disease and lacks the strength and stamina to manage her weight. My three siblings and I are afraid he'll injure himself or become ill. We love them both and persuading him to remove her from their home is difficult. This may be the event that changes that, though. I don't wish Ann removed from her home: how could I? I don't want Dan worn to a whisper, either.

This disease sets us up to fail; there are no good choices, and increasingly we cannot discern what the least bad choice may be. Who do we prioritize? They're both sick and need help. She is terminal and he is exhausted. She is confused, and recently didn't recognize him. He's a shadow of his former self and desperately needs relief. None of us in either family live close enough to provide ongoing support. One sister actually visits monthly and that may be part of the reason Ann's still home. On those occasions, my brother-in-law can actually sleep while someone else takes charge for a few hours. Dan knows it's not enough, and this broken hip brings it home clearly.

The final stage of Alzheimer's may last months or years. We don't know how long Ann has remaining, but it begins to look bleak. Ann eats little now and every victory, whether she gets out of bed for the day or eas a chicken wrap and pizza on the same day, carries the knowledge that without Alzheimer's disease, these accomplishments would be ordinary. The struggle to seize the good moments is haunted by the knowledge that these times become fewer as she declines. We carry tears in our hearts, waiting for the final death to conclude all these small deaths away.