Almost a Year

It's been almost a year since my mom passed away, and it still feels unreal. Nearly every day I think about calling her.

In March of 2011, she fell. She had become increasingly unsteady on her feet. At the nursing home they put her bed near the floor, and they attached an alarm to her wheelchair. However, she still had incidences of falling because she couldn't remember that she was no longer able to walk without help and because the staff could not always get to her quickly.

When she fell this final time, she broke her hip and was sent to the hospital. They wanted to do surgery. I wanted to talk to the surgeon to determine if surgery was in her best interests. He told me that without surgery she would most likely be dead within a few months. I told him I wanted to think about it for a day. My concern was that she would be stressed and confused, and I wasn't sure it would be worth it.

I didn't go to my mom because I had been there in December, January, and February. When I left there the last time I had gone to Florida for a few weeks, and the morning she broke her hip was the morning I was leaving Florida to go home. I thought about changing my flight to go to see her but decided to go home instead.

By the time I talked to the surgeon, I was already home. I mulled over the options and spoke with a friend who is a nurse and decided to give the hospital the go-ahead to operate.

The surgery went well, and the next day she started physical therapy. The day after that they called me to tell me she had died. I was utterly shocked. She had been doing so well.

Friends I talked to later said that she had probably had an embolism, that it wasn't uncommon in a case like hers.

Because she was DNR, they did not try to save her.

I regret that I wasn't there with her. Do I regret that she was DNR? No. She had started having more and more distress in her life because of the dementia, and although I wish I could have had her around a while longer, I hated to see her suffering.

The dementia is no longer such a large part of my memories of her. I've started remembering how she was before the dementia, and those are better memories. I miss her.

Mom, 1926 - 2011

My mom passed away a few months ago. I'm not yet ready to write about it, but I wanted the readers of this blog to know.

Hi! My name is Jesus!

She still knows me. For that I am grateful. But she thinks her mom and dad are alive. She thinks my dad is alive. She worries about what we will make for dinner and asks me if I visited my grandma. I lie. I say I will visit Grandma tomorrow and that we already made dinner. I say, "Don't worry about Dad; he already ate."

She says I'm her angel. At times I think she has me mixed up with Jesus. Really. She says, "You're my Lily of the Valley, the bright and morning star, the fairest of ten thousand to my soul." Those words are from a hymn. And it's not about me.

Another Year Gone

I started this post last winter. Now that it's been a year since my last update, I feel compelled to finish it.

January 2010

My aunt called to tell me that my uncle had been to my mom's house to deliver her Sunday dinner and had found her on the floor. He helped her up and into her bedroom to get dressed. When he found her lying half in and half out of her half bath, she didn't have any pants on. He heard a crash and went into the bedroom where he found her on the floor again. He helped her up again and got her into the kitchen where he sat her down at the table and left her to eat her dinner. He then went home and called my aunt who called me. I don't know why he didn't stay with her, call me from her house, or call 911.

I called my mom's helper, Diane, and asked if she could go to the house to assess the situation. I told her she would probably need to call an ambulance. When she got there she found my mom on the floor again, this time under the table. She called 911 and then called me.

I started looking for flights for the next day and booked one that would have me at the hospital by mid-afternoon. I kept in touch with Diane and with my aunt and uncle as they took my mom to the emergency room.

I knew the time had come. Over a year ago my mom's doctor and I were contemplating moving her into the nursing home, but neither of us were quite ready. Mom was at risk but still adamant about not changing her living situation. Diane was going in several times a week to help her, and we thought it was worth the risk to let her continue living independently. I decided that the next time she had a crisis - and I believed that it was inevitable that she would have one - she would go into the nursing home.

By the time I got to the hospital my mom was still weak and more confused than usual, but she was on her way to fully recovering. I called her doctor and talked about what had happened. He agreed that it was time for her to move into Sunnyside Care Center, the closest skilled nursing facility to her home. In fact, he suggested that she was overdue for the move, and in some small way that made me feel better.

November 2010

Mom has been at Sunnyside for almost a year. She has a made an amazing transition to living there. I had expected a fight, but she quickly got used to a life with regular meals and activities and people around her all the time. She had been living in near isolation for a long time because of her inability to drive, her location in a rural area, and the dementia. She's very much a social creature and enjoys being with people.

Mom is in a dementia unit, and most of the residents are further along in the illness than she is. She sometimes gets impatient or angry at them and is not able to believe that the other residents do strange or inappropriate things because they are ill. There is a man who likes to lie down on one of the sofas, and Mom will get on his case if he puts his shoes on the couch. There is another resident who will sometimes go in her room and lie down on her bed. With him she is a bit more patient because she perceives him as a child, even though he is in his 60s.

She has become very mild, except for the occasional angry outburst directed at other residents and is very sweet with me, which is such a relief after the period she went through when she was always angry at me. She says she wants to move to my town. Although she is still a stranger in many ways, at least she is a sweet, somewhat pliable stranger. She tells me she loves me and sometimes cries because she misses me.

It's a different world yet again.

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.