Mourning

I had heard that this time would come, but as we often do when faced with the painful and unpleasant, I never really believed it would happen. The mother I knew is gone. The woman who was intelligent, quick witted, and open minded is no more.

She has been replaced by a woman who says bigoted outrageous things, gets angry if she's contradicted, and often acts like a spoiled child.

My visit did not go well.

I was not prepared for the changes that have occurred in my mom since I last visited in December. I was impatient and angry with her. I could not label it "the illness" when she behaved badly but instead reacted as if she were unimpaired. I tried to reason with her. I tried to shame her into acting better. I got angry with her. And it's not her fault.

Yesterday I had tea with a friend. I related to her my various shortcomings in dealing with my mom. She asked me if perhaps I was sublimating my sadness into anger. The tears welled in my eyes, and I knew she was right.

Another Year Gone, Part 2

Fortunately after about two weeks she relented and asked Diane to go to her home. However, she insisted that she didn't need her more than two days a week. When I would remind her that she had agreed in the doctor's office to have Diane every day and every evening during the week, she would become very angry. Here's how it normally goes:

Me: Mom, when we went to see the doctor he was very concerned about your being all alone in your house. He wanted you to have Diane in during the day and the evening.

Mom: He can't tell me what to do. I'm independent. I've been independent all of my life. I'll get another doctor.

Me: Another doctor will tell you the same thing.

Mom: How will he know?

Me: Your records go with you, and your doctor has been writing everything down. You know, if you don't do what you agreed to do, the doctor may put you in the nursing home.

Mom: He can't do that. I'm not going in the nursing home. I'll call the police and tell them what he's trying to do.

Every time I talk to her she tells me she's doing great and that she hasn't fallen again. Last week she told me that she's doing so well that she doesn't need Diane more than one day a week. If she actually follows through, I'll have to go out to see her and assess the situation. I really don't want to force her into the nursing home, but she only becomes more dangerous to herself as time goes on.

Another Year Gone

It's been a year since I last posted. In that time I resolved to have my mother go into the nursing home and then changed my mind. And changed it again. And again. So many times I went back and forth on the issue and never felt completely good about either decision.

I haven't been to see her since December. That was the deadline I had set for her to make a decision either to move to my town or go into the nursing home. I was pretty sure she wouldn't move to my town, so I had talked to her doctor about how we could get her into the nursing home. The plan was to take her in to see him, and he would tell her she had to go to the hospital for testing. After completing testing at the hospital she would be transferred to the nursing home for "rehabilitation."

But when I started thinking about the fight she might put up and how miserable she would be in the nursing home, I wasn't able to do it. I was also concerned that my uncle might remove her if she asked him.

At this time she also was getting regular help at home. Last August I finally found someone to go in and help her. Diane is a young woman who has some home health care experience and lives in the same town as my mom. At the time I hired her I had her go in Monday through Friday because my mom had a problem with her foot and needed encouragement to walk on it.

Before I traveled to my mom's in December I talked to her doctor about the situation. He believed that with the proper support she could live at home a while longer. He wanted her to have Diane for additional time every day - at least two hours during the day and two hours every evening. He also wanted her to get Lifeline and diabetic shoes so that she would be more stable on her feet.

When I took my mom to see the doctor she agreed to everything. She even agreed to pay Diane for the evening hours. At this time I was paying Diane out of my mom's trust because I thought it was temporary and that my mom would be going into the nursing home. Since we decided to delay her going into the nursing home, I needed to have her start paying Diane so that I could conserve the funds in the trust. The first step was to have her pay the evening hours, and later I would have her pay for all Diane's hours. (Of course my mom didn't know I was paying Diane out of the trust. Diane told her she was working for an agency and that there wasn't any charge to her. )

The trouble began almost the moment we walked out of the doctor's office. She began to rail against him saying that he couldn't tell her what to do, he wasn't the boss of her, that she would get another doctor.

Do I even need to say that she refused to have Diane for the evenings? She insisted that she didn't need her and that Diane wouldn't have enough to do.

Flash forward to February 2009. At this time I wanted to have my mom start paying Diane. I had the idea that Diane could tell her that the agency she worked for only offered the services free for six months. Now that six months were up, my mom would have to pay. I knew that having my mom pay would be problematic even though she had become very comfortable with Diane and was relying on her to do many everyday things, like sorting through her mail (which tends to pile up and up because she doesn't know what to do with it) and helping her pay bills.

At first my mom seemed to accept that she would have to pay Diane. But within two weeks she decided she didn't need Diane every day and would reduce her time to twice a week. After a couple more weeks she got very angry about having to pay her and ordered her to stop going to her house.

To be continued.

New World

So, one day you wake up and find it's a whole new world. After the worst visit ever in December, I had one of the best visits ever in May. The visit in December was unmitigated hell. Mom treated me with contempt and hostility. She seemed to be trying to hurt my feelings intentionally, if that is even possible in one with dementia. Everything came back to the money. In addition to the usual accusations, she added a new one: I had spent all her money. Every day I was there, sometimes several times a day, I had to answer these charges.

Then something happened. In February she said that I had changed, and I was like the person I used to be. I asked her what she meant, and she talked about how I had taken her money and spent it, but that was all forgiven now because I've changed. I told her I hadn't spent her money, that it's safe in the bank, all the things I usually say. But it didn't seem to matter. Mom seemed convinced - like I had been a bad girl and now I was good again.

She no longer mentioned the money every time we talked on the phone. By the time I went to visit in May, it was like I was living in a different reality with my mom. She was sweet and loving to me. After I showed her a bank statement, she broke down and cried and asked me to forgive her.

Everyone told me it would get easier, but it was hard to believe when I was going through the worst of it.

The downside is that she's better with me, but she's worse in general. There are all kinds of little signs:

* More problems with language, although most people wouldn't notice because she's still fairly adept verbally.
* Less care in her appearance - she's almost completely stopped wearing makeup and tends to wear the same outfits over and over. Here too most people wouldn't notice because she's clean and well-dressed.
* A coarsening of her public behavior. After lunch one day she put not only her leftovers in a box but also mine and all the chips and salsa that were on the table. At this same lunch she told the Latino waiter a story about how she got sick one time from eating chili in Tijuana, a story that included diarrhea and chili made from cats.
* Continued problems taking her meds even though the pharmacy delivers a bubble pack once a week to help cut down on confusion.
* Odd changes in attitude toward people. For no apparent reason she's decided she no longer likes her doctor.

I'm so relieved that she's no longer angry at me. We talk on the phone every day, and she's always very sweet to me. But I'm sad that this improvement in our relationship has come about through a worsening of her condition.

By the time you figure it out, it's too late

Dealing with someone with dementia is like raising a child. By the time you get it somewhat figured out, it's too late. With children, they're grown; with the demented they're gone.

Moving Forward

After many days of feeling quite distressed and undecided over what to do next, I think I've finally come to terms somewhat with the reality of the situation.

No matter how much I may wish to undo my decisions of last fall and winter regarding her finances and postpone it until she was in worse shape, I can't change the past.

Neither can I continually strive to earn love from a demented mother who at even the best of times gave her love conditionally.

When she is angry she is like a stranger to me. But she is a stranger for whom I have complete responsibility.

In order to move forward I have decided to create a trust with the funds that are under my control, which are about half of her assets. And the rest, which she has in her local bank, I will leave alone for now, even though it means putting them at risk.

I'm tired of trying to stay one step ahead of my mom when it comes to managing her finances. Money is important to her future, but I can't continue to spend so much time and energy focusing on it. It makes me feel like I'm always scheming, and I felt a desperate need to find some peace around this issue.

Moving forward now means looking for someone to help my mother with her housework and shopping. I need to find a kind and trustworthy person who can assist my mother and also keep me informed about how she is doing.

I feel good about my decision and hope I'm not taking too big a risk.

Deja Vu

After five wonderful months of phone calls and a visit with no temper tantrums, we seem to be back where we were last winter.

It all started around the beginning of the month when I called my mom to tell her that I had my plane tickets for my Christmas visit.

When I called my mom she sounded cranky, so I kept the conversation short and told her I would call later. Since the summer I was back to making near-daily phone calls. We hung up, and she called me right back. She asked if I was getting the bank statements for the accounts I had changed last winter. I said I was and she said she wanted them. I said okay and figured I would sort it all out later when she wasn't in such a bad mood. We hung up again, and she called right back. This time I could hear the anger growing in her voice. She said, "Your father and I worked hard for that money," a refrain I've heard at least twenty times but not since last spring. I told her that her money was in a good bank earning good interest. She said, "Bullshit!" My pre-Alzheimer's mother rarely swore.

Then I made a tactical mistake. I said, "I'm not going to talk about it anymore right now, and don't call me back again." At the moment I was shocked and upset that this issue, which I thought had been resolved, was being raised again. I think that by hanging up on her I was trying to run away from the inevitable.

The inevitable is that she didn't remember that we had spent five months last winter and spring talking about what I had done with her bank account. She didn't remember that she had told me her heart was healed, that she forgave me, and that she trusted me. I'm sure my reaction was confusing to her.

I waited four days hoping she would forget about the bank account and called again. Without saying a word, she hung up on me twice. Apparently I had taught her a new trick when I hung up on her.

Since then things have not gotten any better. I'm still planning to visit next month, and I hope she won't call the sheriff on me as she has threatened - mainly because it would be embarrassing to her.

What I've learned is that I can't expect my mother to remember anything. I've also learned that as much as I'd like to I can't go back and change what's already happened. I don't think I will ever be able to make things right with my mother no matter how hard I try.

I think I'm finished with knocking myself out to try to make things better.