Saturday, November 15, 2014 

My dearest friend Nancy is suffering so. Her husband Eric has been in the hospital or rehab since the end of July. A few untimely iatrogenic mistakes, now he no longer talks and no longer walks. The hospital is making noises about sending him to a nursing home. The latest prognosis—as they play God—is that he will not recover. Nancy and I saw this coming, but it’s not something you dwell on. You just hope otherwise. Eric is being fed through a peg and he suffers terrible pain, necessitating catheterization every 4 hours. He moans and shouts—noises he can make. Nancy can hardly bear to hear him, but she is at his side as continuously as possible. She feels guilty when she has to go home to check on mail or see to the dogs when her daughter is not around or is working. She knows it’s a matter of time before she has to sell the house or possibly give the dogs up for adoption (temporarily?). As she explained the other evening, she no longer readies her cup of coffee before his 6:30 am call each morning (Eric used to work in NJ during the week). She no longer has her companion by the lanai on weekend evenings. Her lover, her friend, her confidant is gone. Now she is his caretaker and she has to do everything she can—for better or worse—for his well-being.

This puts a whole new wrinkle on my caregiving for mom. Comparatively speaking, mom is no trouble at all. Like any dependant, mom can be demanding. And I did get up twice the night before last to clean the bathroom—once at 2:30 am and once at around 4:45 am. I got no sleep that night because I kept hearing mom slam the bathroom door shut. I have since solved that problem by draping a towel over the top of the door. She can try to slam it, but she won’t be able to. And I will no longer hear it.

Unlike Eric, mom can walk, she can eat, and she can drink. Unlike mom, Eric’s mind still works perfectly well—from what we can gather. And that is a horror. If he were unable to understand his predicament, it might be easier on him. But his level of cognizance makes his condition that much less bearable for those who love him.

Nancy said she would he perfectly happy if she did not wake up in the morning. She barely sleeps, but cries through the night. She has lost more than 20 pounds and her hair is no longer thick. I know someday she will/might recover. But the most difficult thing is that I can say or do nothing to make a difference. I call her daily. I pray for her. I ask others to pray for her. There are times when she outlines the day and I hear so much sadness in her voice that I cannot answer. I cannot respond. I can say nothing. My words would only be empty. I do not know her level of sorrow or fear or anger or angst or anxiety. I know only that she trusts in the Lord and leaves everything in His hands. But even at the best of times during this ordeal, there is no consolation. Her best friend, her husband, till death do they part is now totally dependent on a system that is failing them both. He is merely being kept alive to be barely kept alive by an uncaring and unsympathetic system. He will be allowed 120 days in a nursing home. After that, Nancy will have to decide where to put him, how to see to his needs, and how to continue to be his voice.

By contrast, Mom is watching television. Yep, Family Feud! Survey says!!!!! And I am glad to hear it. Mom will surely once again fiddle with the remote, necessitating Rob’s intervention. She will surely many times more soil the bathroom and her clothing. She will call through the night to tell us that Rose, her now deceased sister, won’t come into bed with her. She will call for tissues, cookies, juice, or “what do you have?” She will still complain about the man in the tree and the cat on the fan. And I will thank God for her and for the chance to serve her. I still lack patience, I am not the saint, and I am sure to become unhappy when she calls for the fourth or fifth time while I am working. But she is here and pretty happy and fairly well. I am looking forward to her 100th birthday. Don’t ask when we get there how I am doing! I still might roll my eyes. There will continue to be challenging days! I am sure of it.

Sunday, November 9, 2014 

Rob was out raking leaves. I was at the farmers’ market. So mom had been alone for a bit. When he came back in, mom was sitting in the living room, and she complained:

There’s someone in the kitchen.

No there isn’t.

I tell you there’s someone in the kitchen. I know. I saw them.

No one is there, Paula.

I saw them. 

Rob said she made an angry face and rolled her eyes at him and waived a hand. After all, he dismissed her vision or her sighting or whatever it had been. So now we have a new rule: If mom says she saw something or someone, then she actually saw something or someone—real or not. We need to honor that and help her through it.

So from now on, the cat in the fan, the man on the tree, the woman in her bedroom, and the person in the kitchen are very real to her and we will acknowledge them as such and help her through it all. We are now entering a new phase in this Twilight Zone of mom’s life. But to tell you the truth, who’s to say that she is not seeing these things. Whose eyes are closed in this scenario? Maybe the closer you get to leaving this earthly plain, the clearer your vision gets.

Thursday, November 6, 2014 

It’s raining. The clocks have been changed for a week now. I thought I could get up early and get some editing done. Guess again.

Mom is seeing men in the trees.

Who are those men?

There are no men in the trees, mom. (No time to placate her. I need to get some work done.)

Well, they’re walking up in the trees.

Think about it, mom. Men can’t walk from treetop to treetop.

Oh. Can they get in here?

No, you have to come inside to open the windows. They’re locked. 

What other story can I give her? What else can I say? There are no men up in the trees. Whatever she sees, I am not privy to. But this goes on and on and on. Her insistence will not end.

Rob!

Mom, what do you want? Rob is still asleep.

Oh. I wanted to know what those men are doing up in the trees.

Mom, I told you. There is no one up in the trees. Now, I have closed the shutters. You cannot see anything or anyone. So why don’t you go back to sleep?

Well, I was afraid they would come in.

Since there aren’t any men up there—you see the tree is moving in the wind and it’s raining out there—you won’t have to worry about them coming in!

Oh. Well, I thought…

No. Go back to sleep. 

I might get a few minutes reprieve. But I can already feel my chest tightening.

November 2, 2014

Worked hard yesterday and awoke after an uncomfortable night. Had to wash the bathroom down twice yesterday and clean mom twice as much as that.

Last night, she started her fugue again. One right after the other: I need to talk to my son. I need to call my son. I need to tell him where I am. Did you call him? Did you leave a telephone number? Did you call 410-555-XXXX? Did you tell him to call us? He needs to know where I am. I am so worried about him. I called John and left a message.

This went on interminably until finally he called back. It was an exhausting night and my patience was thoroughly spent. Mom is wont to say, You don’t like me, do you? But tonight, it was, You don’t like my son, do you? Until finally I said, No, I don’t. She repeated her question and I repeated my answer. It was our fight for the day and it took more out of me (who would remember what I said and what went on) than it took out of her (who would remember none of this).

Today, I felt as though church were the last place on earth I belonged. But I went anyhow. I figure I needed to hear some words of encouragement, and I heard them. Loudly and clearly. After church, Barb and I talked and held hands. This beautiful soul warmed my heart and allowed me to let off steam—as she put it—the way a pressure cooker should.

First Sunday of the month, I was slated for Hearthstone, where I talked about what is left on earth for us to do. I had briefly touched upon things with mom and how I felt I was unworthy to go to church this morning. But I mostly talked about the present, how touching someone—on the hand, on the head or face or shoulder—might be just the encouragement anyone needed and how they could do that for each other. I thanked the Lord for the brace that was given to a woman who had fractured a rib from a fall, for the walkers, for the wheelchairs, for the oxygen, for the food and the hands that make them at Hearthstone, for those who changed the linens and washed the clothing, for those who just touched another warmly to turn the day around—especially on this blustery fall day.

After my sermonette and the closing prayer, I said I would take each person’s hands and give them my love and the Lord’s healing, as I do with the cancer patients at the hospital every other week. And I did. But the healing came right straight back to me. Verna in particular, looked me straight in the eyes and said, I love you and I thank God for you. I hope things get better and easier for you with your mother. Well, that about did it. I was moved to tears, and all the tears saved up inside me for weeks just about flowed out freely. Not only did Verna give me a great blessing, but she also touched upon the one thing that was hurting me deeply—my feelings toward my own mother.

Caregiving is not easy. No one can prepare you for what it will take and no one can help you through it. You are the one who must do the cleaning, the dressing, the cooking, the showering, the bed checks, the running downstairs at night for every bump your hear. You must be alert to needs for food and water, tissues (especially prized by my mother), juices, teas, cakes, and cookies. You must answer each call, each plea: Where do I go? What should I do? Are you hungry? (meaning: I am hungry), Did you eat? (meaning, I am hungry), Do you have any cookies? Are we going out? Are we going to the club? Did you call my son? Did my son call? Where are my clothes? And the dreaded, I have to go in the bathroom. (Mom always says go in instead of go to.) 

And the demands: Close the windows, Get me a tissue, Get me something to drink, Get me a tissue, Get my jacket, Get my robe, Get me a tissue… 

It’s tiring. It’s vexing. It’s exhausting. It’s a lesson and a gift. And if I ever do learn patience, I will have truly earned a wonderful place in heaven. As it is, the Lord will sit me down and lay out for me all the opportunities I missed for pleasing Him and lifting my soul.