Why can't I go home?

“I don’t know why they won’t let me go home,” Mom said. “I wish I could go home, but it’s not likely that’s ever going to happen. I think I probably am going to die here.”

“If it wasn’t for the Alzheimer’s, Mom, you wouldn’t have any reason to be here,” I answer each time we have this conversation because it is the truth. It breaks my heart that Mom has to live at a nursing home, but the other truth is that she said I should go home and live with my husband because that is my place and the only way that could be was to place Mom where she would be safe.

“Is anyone staying at my house?”

“No. Your house is just the way you left it. Richard and the neighbors keep an eye on it.” I don’t tell her that I keep thinking I should see if I can buy her house, to keep it in the family, and to make sure it is still there if a cure for Alzheimer’s would come and she could return home.

“OK. Good.” She is satisfied with the answer. “I don’t think my Alzheimer’s is as bad as other peoples’. It’s not as bad as the doctor thought it would be by now.”

“It’s pretty bad, Mom, because your short term memory is gone. You’re still pretty good with the long term memory, though.”

“What is short term memory?” she asked.

“A minute ago, five minutes ago, half an hour ago.”

“I remember five minutes ago.”

The leading question: “Do you remember we were in the dining room?”

“Yeah.”

Now the trick question: “What did we do there?”

“I don’t remember.”

“Do you remember we played Yahtzee with Catherine, Effie, Helen, Mary and the activity director?”

“Oh, yeah? I don’t remember.”

“I know, Mom. That’s why it’s called Alzheimer’s and why you can’t live alone at home.”

“What did you say that was—what I don’t remember?”

“Short-term memory.”

“Yes. I’ll work on short term memory.”

“I don’t know if you can change it, but it won’t hurt to try, Mom. It won’t hurt to try.”

The visit was a good one. I enjoyed Yahtzee in the dining room. I enjoyed crocheting with Mom in the sitting room. So, why did I cry half of the way home?

My brothers and I moved Mom from her home to a safe shelter from the Alzheimer’s storm the day before my 56th birthday. One of my brothers said, “It’s kind of a birthday present for you.” I didn’t answer that because it pierced my heart so deeply. A better woman would have stayed to take care of Mom, because this woman was torn between taking care of her mother and eliminating the stress on her marriage; torn between two of the most important people in her life: her mother and her husband. What kind of birthday present was that?

In the six weeks since Mom moved to the nursing home I see I can be more objective…I see the Alzheimer’s progressing. I see my mother 25 minutes away from us. I see her slipping into the Alzheimer’s cocoon where we won’t be able to reach her.

“I’m sorry I don’t get here more often, Mom,” I say. Two or three times a week is the most I've been able to manage. Is it because August is such a busy month? And what about when winter comes and the roads are icy and the snow storms come? I'm afraid to walk on ice because of a fall a few years ago. I don't want to break a hip or something.

“Don’t you worry about that,” she says. And I recall how she said when she doesn’t know us any more we should stop coming to see her because she will be gone. I choke at the thought.

“I’m surprised I can still crochet,” she says.

“You learned it a long time ago when you were a child, Mom. That’s why you remember,” I said. I said nothing about the simple double crocheting she does now, and I fear she’s forgotten how to crochet the octagon-shaped blocks for the bedspread she was making before the move. The bag with that work is put away, out of sight, out of mind.

Please, God, I weep, please be kind to my mother.

I pray that prayer like a mantra, over and over again. And rush on to the next item on my to-do list. Keeping busy within my family distracts me from the grief of slowly losing my best friend, my mother.

© 2009 Cathy Thomas Brownfield

One day at a time

"We are too close," Mom said one long ago day. "When something happens to me you will have a hard time. I don't want you to hurt so."

"The memories will keep me going, Mom. You let me worry about all of that when the time comes," I said.

I want to always have memories that assure me I was a good daughter, the best I could be for her, that I always was loved unconditionally. That I had a wonderful, loving mentor to encourage me, urge me to take chances when I would have not even tried because I was fearful that I would fail. My mother always has believed in me, and still does.

I visited her today at her new home.

"I'm so glad you came to see me today." She held my hand and I felt her nails piercing my hand, her grip was so tight. I let her hold onto me. If it gave her comfort and reassurance, so be it. "I love you, Cathy."

"I love you, too, Mom."

"You're the best daughter."

"You're the best mom."

"I don't know about that."

"I had to get it somewhere."

"Thank you."

"Thank you for being my mom."

We talked about the afghan she was finishing. A while later, following a few moments of silence, a lull in the conversation...

"I love you, Cathy."

"I love you, too, Mom."

"You're the best daughter."

"Even with all of my flaws?"

"You don't have as many flaws as you think you do."

"Do you think so?"

"Yes. I wouldn't trade you."

"I wouldn't trade you, either, Mom."

"I wish I could go home, but I think that probably isn't going to happen."

"If they come up with a cure for Alzheimer's, I will take you home in a heartbeat."

"I don't think my Alzheimer's is as bad as they thought it would be by now."

"It's an individual thing, I think," I said. "I credit the Namenda for holding the progression back."

I know the problem with Alzheimer's--her Alzheimer's--is that her short term memory is gone, has been gone for some time. The short term memory is important for her safety. She can't live alone because she can't remember putting something on the stove to cook. She can't dispense her own medications. She can't drive herself anywhere. Someone needs to be there to watch over her shoulder and keep her safe.

My cousin visited Mom and Dad a year and a half ago. When she was ready to leave to catch her plane she told me she didn't think Mom and Dad should be living alone. I began to watch them more closely. I visited more often. When Dad passed away we knew Mom couldn't live alone. When she insisted I go back to my home, our only option was a nursing home.

We wanted comfort for her, a place with caring staff, clean and pleasant surroundings. We found it. But still, is any nursing home good enough for our mother?

For now things are as they need to be. For now we are doing the only thing we can. The financial hit is costly. What happens to people whose homes have been sold if an Alzheimer's cure comes along?

Let's take things just one day at a time...

(c)2009 Cathy Thomas Brownfield

Moving forward

It's been a challenging year. So many major life-changing events have occurred. In mid-July the decision was made. The one we so dreaded, and feared. Mom was not happy about moving to a nursing home. She continues to say that she wants to be at home because they aren't doing anything there to help her. Nobody, she says, comes to visit her. She wants to go home.

My middle sibling told her, "I can't do anything about it. My brother and sister are the POAs." Well, my first reaction to that was, "Um, it wasn't our choice. It was what Mom and Dad set up." My second reaction was, "Get on the same page with us!" The third reaction was, "You were in denial a long time. We've been with this since the beginning so we are more acclimated to it." My best advice to this sibling? "Don't visit later in the day when it's getting on to bedtime because of the sundowners thing." He was hurt that I didn't recognize that he'd been through nursing home stuff with his mother-in-law and the friend of the family who helped to raise his wife. "It's different when we're talking about our mother," I answered. "Go home. Rest and relax. She will not remember that you even were there."

I was right. She wanted to see me at that very moment to talk to me, but Bill said it could wait til morning. I knew she wouldn't remember by the time I got there. I was right. She did not.

"Nobody comes to see me," she said.

"Mom, that's not true. Richard and Dawn come to get your laundry and bring it back clean. They are here at least three times a week. I am here at least three times a week. And Bill, doesn't he come to visit with you while Deb is having dialysis?"

"I'm going to start writing down the dates and names of my visitors. You all keep telling me these things but I don't remember."

"I'll bring you a notebook," I said.

When we arrived she remembered that her brother Ira and his wife Evelyn had been to see her. That they'd had a nice, long visit. But by the time my husband and I were leaving, she did not remember they had been there. We must have missed them by only a few minutes.

"I don't like it here," she said. "Nobody talks to anyone else. I could sit alone at home and crochet."

"That's not what the staff tells us. You go and play Bingo and Yahtzee. Last week when I came to see you we went to the dining room for a sing and ice cream social with the folks from two local churches and a couple of days later when I came we had birthday cake and ice cream for the July birthdays. Richard said when he comes to see you he has to go looking for you because you're never in your room."

"I'm going to have to start writing things down because you all keep telling me these things but I don't remember them."

"That's because it's Alzheimer's, Mom."

"I was doing fine at home before I came here. I was living on my own, taking care of my house, doing my cooking."

"No, Mom. When Dad went into the hospital the last time I came to stay with you. When he died I stayed on and stayed with you for four months because you couldn't stay alone. I did the cleaning, the cooking...I made sure you got your meds and ate right. You finally said you wanted me to go home because I belonged where my husband was. The only way I could do that was to move you here."

"That's true," she agreed without any argument. "I just hate it here."

"How about we just take one day at a time. If they come up with a cure for Alzheimer's, we'll have you out of here in a heartbeat."

I didn't tell her that by that time the house will be sold to continue to pay for her to live at the nursing home. But she will always have a home with her children.

It's been an easier transition than I anticipated. But it's hard to go to her house when she isn't there. The neighbors told Richard how hard it was to look at that dark house so he goes over and spends time there with the lights on. He said when the house is sold he will have to sell his house and move, too, because he won't be able to handle seeing other people going in and out of the house that was home for 52 years...well, for him, 48 years. He and the neighbors sounded like they are hopeful that my husband and I will buy the house and live there. Does this mean you CAN go home again?

Alzheimer's. It is a devastating disease. Mom will forget, but we will remember for a long, long time.

(c)2009 Cathy Thomas Brownfield