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.

Moral Courage

Last fall my uncle and my mom's minister thought she was dying. (See Financial Planning Part 1.) She had become very weak and could barely walk. This was approximately two weeks after I had visited last. Of course, I returned to her home as soon as I could, driving the 950 miles there with my son in the back seat.

When I got there I saw that the situation was not as dire as they had thought, but still it seemed that it was time to talk to my mom about making some changes to her living situation. Her doctor agreed to play the bad guy and talk to my mom about the Alzheimer's and the need to stop living alone.

I asked my uncle to go with us to the doctor, but he said he couldn't.

We got to the clinic on time and had to wait about 45 minutes. It turned out that it was Dr. M's last day there. When she finally met with us, my mom would not listen to what she had to say. Mom constantly interrupted Dr. M and could not follow the logical arguments that she laid out. I now realize that she is simply unable to understand her condition, and it makes her very angry to be told anything is wrong when she's sure that she is fine. I imagine that few Alzheimer's patients can follow a logical argument even in the early stages of the disease.

Since the doctor was unsuccessful in persuading my mother that she needed to stop living alone, I decided that the next step would be to have a family conference. Perhaps if those who loved her the most and who she loved the most gathered together to express their concern over her safety she would listen. I asked my two "sisters" (my mom's deceased boyfriend's daughters), my uncle, and my mom's minister to attend. Big sis readily agreed, and the other sister said she would try to make it after work. I then called the minister, Rev. L. He said he would have to check with his wife to see if they had plans for that evening, but he didn't sound like he had much enthusiasm for the plan.

At this time I'm feeling pretty desperate. I'm thinking, "I live so far away. What can I do to keep my mom safe?"

Next I drove over to my uncle's house to talk to him about the meeting.

While I was there my uncle's cell phone rang. He answered and said, "Hello, Minister." He talked a few seconds and then walked away from where I was standing and continued talking. When he came back he handed me the phone. The minister said he couldn't make it to the meeting.

My uncle didn't want to be part of a family meeting either. He didn't want my mom to get mad at him. He said that after I left and went back home he would still have to live with her. Even though what that actually meant was that he would still have to see her the one afternoon every week or so when they have dinner together.

It was clear to me that when my uncle walked away from me while on the phone, he and the minister had talked it over and decided not to participate. I felt very angry at them at the time and thought they lacked the courage to do what's right even when it's difficult. My uncle I can forgive; after all, he's family. But not the minister.

Now, I realize that a family meeting probably wouldn't have gone any better than the meeting with the doctor. At the time, however, I was desperate. I had just made a 950 mile trip doing all the driving, and I was terribly worried about what would happen when I left. It seemed imperative to get my mom into assisted living or to get her to move to my town.

Luckily a similar situation has not occurred in the last eleven months. But I know now that my uncle and the minister will not be much help to me when difficulties arise in the future. My god, they thought she was dying, but they didn't even take her to the hospital or call a doctor! They called me, 950 miles away, to take care of it.

Summer Visit

My last visit to my mom's was for her birthday. We had a wonderful time with no conflicts, and I was able to take her to do many of the things she enjoys.

Big sis and I took her to her favorite restaurant for lunch. After lunch, Mom got to enjoy one of her favorite activities, shopping at Wal-Mart. Sis and I sat in the cafe and chatted while Mom went up and down every aisle of the grocery side of the store.



In the photo above, Mom and I are having lunch at one of the small, local, inevitably smoke-filled restaurants. I think I'm spoiled living in a state where smoking is banned in all restaurants. I do feel a bit bad for the poor smokers who have to stand outside to smoke in the middle of winter though. Because she can no longer drive, Mom especially enjoys getting out of the house. She always dresses attractively and wears makeup.



In this photo, my uncle is visiting us. My mom was wearing a housecoat and had one foot on a chair. Her whole left leg was showing. Mom has relaxed some of her ladylike conduct since she has had Alzheimer's.


This is Mom and her church buddies. Church is very important to my mom. She always gets a ride with one of her friends, and they often go out to supper after services.

Her minister is just about the worst public speaker I've ever heard. I'm an agnostic, but even I could do a better job than he does. I've heard him stumble over Bible readings as if he's never read them before, so unable to pronounce some of the words that I've nearly shouted them out to help him.



While I was there I also took my mom to hear her favorite gospel singing group and to visit an old friend in the nursing home.



We also visited the opthamologist, and she had another laser treatment for the macular degeneration. Sometimes I wonder if she really needs all those treatments she gets. Perhaps I should take her to get a second opinion. There are always so many things to do.

When I left I felt satisfied that I had helped my mom have an enjoyable week. And she told me that her heart was healed and that she loved me.

Me Me Me

Do I sound like a selfish brat? All I seem to talk about is how the disease affects me. I talk about what I miss and what I'm losing.

Well, that's one reason for blogging anonymously. Here I can feel as sorry for myself as I like, and no one will know it's me.

When I'm with my mom I actually try to put her first. I sometimes exhaust myself trying to take her to do all the things she wants to do. I'm far from the ideal caregiver, but I'm not all that bad.

This blog can be the place where I can whine and pity myself. Sometimes.

A bit of normalcy, such as it is, and a bit of grieving

Since my last post things have continued pretty smoothly. Near my son's birthday my mom did mention something about having less money - she thinks she's getting less interest on her accounts since I made the changes, but she really isn't. She mentioned it because she sent him a much more modest birthday present than usual (I had reminded her the week before of his birthday - I don't know if she would have remembered). I quickly got off the phone to avoid any conflict.

I'm planning a trip there next month and will write out for her the interest she was getting and what she is currently getting, so she doesn't continue to think she's earning less on her savings.

I'm very grateful that she seems to have gotten over most of her anger - at least I hope she has. I know that everything can change in a heartbeat. Members of my Alzheimer's support group assured me that things would get better, but it was hard to believe it. She was just so angry I couldn't imagine the situation ever getting better.

I've been calling her more frequently, and she seems to enjoy our conversations. The last time we talked, Sunday morning, she seemed in very good spirits. We laughed and joked around.

When I first told her I was going to be with her for her birthday, she didn't sound pleased, but when she asked if I would be there in June, she sounded, dare I say it, happy.

I'm looking forward to my trip. I realize how much I'm losing and how quickly.

In editing the above photo for this post, I remembered what a special relationship my mother and son once had and how it has been decimated by the disease. At one time they talked on the phone about once a week, and she was genuinely interested in what he did. My son loved his grandma and enjoyed talking to and visiting her. Now she never asks to talk to him and doesn't even seem to want to see him. She prefers that I visit her alone. It makes me so sad.

All Quiet on the Front, More or Less

Not much has happened this week, but I'm trying to post every week, so I wanted to write a little something.

For two years I called me mother nearly every day. When she got mad at me over her finances (see below), I realized I had to stop calling so often both for self-preservation and because it was making her upset. I've been calling about twice a week.

But I miss talking to her on a daily basis. The last couple times on the phone she has not been mad at me. One time she even told me she loved me after I told her I loved her. It was a bit of a shock. Maybe she is getting over her anger, and we can start to talk more often. I hope so.

Financial Planning Part 2, or Am I Doing the Right Thing?

In January a mess-up involving reordering checks made my mom aware that she had not received a bank statement in a while. By this time not only had I paid for the lawyer out of her account, but I was also paying for the monthly Lifeline fee and her lunches from the senior center out of the same account. It seemed imperative that she not see the statements in order for her to keep having these services.

Remember, my mom thinks there is nothing at all wrong with her. The only reason she has Lifeline in her house and accepts the lunches that are delivered is because she believes they are free. I’ve had to go through a bit of trickery to insure that she be kept in the dark about who is really paying, but so far it has worked.

When she went to the bank to ask about her statements, she didn’t talk to the person there who knows all about the situation and who would have tried to stall her while she let me know what was going on. She talked to someone who told her that her statements were being sent to me.

Not only did she find out about the statements, but she also noticed that her balance wasn’t what she thought it should be (the fee to the lawyer was several thousand dollars). Ever since I had made the changes to her account I worried every single day about what would happen when she found out. I knew the chances were good that she would realize she wasn’t getting her statements at some point because she is still pretty sharp in many ways.

I had what I felt was a crisis on my hands. I wanted so badly to be honest with my mom (see “Lying” below), but I knew that if I told her everything it was likely to end with her canceling the Lifeline service and her lunches. At first she was more upset about the “missing money” than about the bank statements. After stalling for a couple days I made a decision. I decided to tell her that I had implemented an “asset protection plan” and had moved the missing money to an account in my town. At the same time I planned to move more of her savings to a bank here in order to be able to continue paying for services without her knowledge. I’m also planning for the time when I can find someone who can keep her company, drive her places, and help her with housework a few days a week. Because I eventually plan to move her here, I also want to set aside funds to cover the moving costs.

My mother was satisfied with the explanation of the asset protection plan – for a few days. Then all hell broke loose.

No matter how angry she gets, she knows that I would never steal from her. But she cannot understand how I could make these decisions without first talking to her about it. She thinks I’m protecting her money so that I can inherit it. She also senses that I’m taking control of things that she believes she is still able to handle.

For three months now she’s told me that she will never feel the same way about me, that I stabbed her in the heart. She never calls me “honey” or tells me she loves me anymore. (When I visited her last month, there were some moments of real warmth and affection, in between the temper tantrums. But now she seems not to remember that I was there and has returned to her cool ways.)

At times she’s so sad and miserable, or angry and full of rage, that I seriously question whether I did the right thing. Sometimes I can feel very keenly that I have broken her heart.

Is it better to deceive her to keep her safe in her home while causing her tremendous emotional distress or to allow her to continue to make her own decisions, to allow her to feel in control of her life, while putting her health and safety in peril?

I no longer know.

Financial Planning, Part 1

Last fall, not two weeks after I had been to visit her, my uncle and my mom’s minister told me that they thought my mom was dying. I knew that she hadn’t been feeling well, but I didn’t know just how bad she was. Apparently she was staying in bed and not eating and had become very weak. When they had gone to visit her they said she could barely hold up her head and was very confused. The minister said that he thought she could be gone in a matter of days.

When I called my mom I told her that my uncle was going to take her to the doctor. She got riled up and said she was fine and wasn’t going to go. I knew then that she wasn’t dying. She was just too feisty. Nevertheless, I realized that I had to go there and see what was going on. At the time my husband was out of the country, so I couldn’t leave my son at home and fly there on my own. I packed up my son and drove the 950 miles to my mom’s.

When I first started talking to the local Alzheimer’s Association about my mom’s situation, they recommended that I hire an elder law attorney. I talked to the Association office nearest to my mom to get a recommendation for a lawyer and talked over the phone with the office that was most highly recommended. But I put off making any decision about hiring them. It seemed like such a big step to take and such a lot of money to commit.

This crisis forced me to see that my mom’s condition was not going to improve; it could only get worse. I felt as though I could no longer put off making difficult decisions, so I made an appointment with the lawyer for the time I would be at my mom’s and subsequently hired them.

My mother at the time had two bank accounts, one of which was in both our names. In order to pay for the lawyer, I wrote a check on her local account and had the mailing of her bank statements changed to go to my home so that she wouldn’t see that I had hired a lawyer. I would much preferred to have had her involved in meeting with the lawyer, but I knew her level of denial was such that she would not have seen the usefulness of such a meeting, much less spending the big bucks to retain the lawyer.

The lawyer’s staff has been great, really knowledgeable and helpful. They assured me that we will be able to protect at least half of my mother’s assets. My mother doesn’t have a lot of money, but she has always said that if she ever had to go into a nursing home she wouldn’t want the government to get it all.

When she can no longer live alone, I hope to move her into a facility here. However, she may have to go into a local nursing home before I can bring her here, either because she refuses to come here or because it may take me a while to find a place for her here. The way things are set up now, she can go into a nursing home and not lose all her assets, which means that when I move her here there will be money for the move as well as money to pay for the first few months at a nursing home if that is what is required to get her into a good place. After those expenses I hope there will be enough remaining for her to live comfortably the rest of her life.

So, when I got to my mom’s, I found her sleeping in bed. My son and I unpacked the car, and I finally woke her up. She was confused and weak, but after several days she regained her strength and seemed back to normal, well, as normal as it gets.

In Part 2 I will talk about what happened when my mother noticed that she wasn't receiving her bank statements.

Sweet and a Little Sad

Last Friday I received an Easter card from my mom. She wrote on the left side of the card, “May God bless you, my dear, Love Mom.” It made me really happy to get this card, especially that she had signed "Love, Mom." Since January it's been rare that she tells me she loves me, so when she does it's very sweet. Then I noticed that on the right side below the printed greeting, she signed it, “Lee’s mom, Barbara Graham.”* Normally, she would have just signed it "Mom," but now she signs her full name as if we wouldn't know who it's from. It reminded me of how Alzheimer’s Disease is changing her.

*Not our real names

Lying

What I have is a situation where my mother refuses to or is unable to understand that there is anything at all wrong. She often asserts quite forcefully that "There's nothing wrong with my memory! You think I'm crazy, but I've got all my faculties!" Because there's nothing at all wrong with her, she doesn't need any kind of help. Not only that, but there’s no need to plan for the future. “I’ll handle it then,” she says.

Anything I do for her I do surreptitiously. Sometimes I have to tell outright lies. And not just little white ones but big black ones too. I hate to lie. My mother and I have always been honest, painfully honest, with one another, and now I lie to her all the time. We had the kind of relationship where we would tell each other things no one else would be willing to say. I question the appropriateness of that kind of "honesty" now, but I always knew that I could tell her pretty uncomfortable stuff and she would at least respect that I was telling her the truth.

I've tried to confront her about her denial. (And I have to ask myself if it is indeed denial or if it is simply that she can't understand her situation because of the disease's effect.) I've prefaced a conversation about her diagnosis with, "Mom, you know we've always been honest with each other." And then watched as she's exploded in a temper tantrum. The term they use in the dementia books is catastrophic reaction.

Her denial harms her. It keeps her from getting help in her home because she thinks she can keep up with her housework and her garden Just fine, thank you. Even though she sometimes forgets how to operate her vacuum cleaner. It prevents her from thinking about the future and what she will do when she no longer can live alone.

In lying to my mom I'm breaking a lifetime habit, a compulsion even. I have to admit that the lying has become a bit easier over the months, but I still feel as if I’m losing a bit of my soul (metaphorically speaking) each time I do it.

A Forgotten Birthday?

Today is my husband's birthday. Before Alzheimer's my mom was super conscientious in sending birthday cards and presents and calling on the day itself. Since Alzheimer's, she frequently forgets birthdays - although if you ask her she can usually tell you the date of someone's birthday. For the past two years when I've talked to her on my birthday she hasn't remembered it was my birthday. I've started to remind her a couple weeks in advance that a birthday is coming up.

My mother did not send my husband a card. Nor do I expect her to call today. I'm not sure if she has forgotten or if she is still mad at him. It may be both things. A few weeks ago she called here, and my husband talked to her about her anger and hostility toward me. I don't think she would have got mad if he hadn't reminded her that she's a Christian and should practice Christian forgiveness. In her mind, he impugned her Christian life. She told me about it when I was there. His point was that as a self-professed Christian she should practice what she preaches. But trying to reason with a cognitively impaired person is like trying to reason with a three-year-old.

I'm grateful to my husband for being an advocate for me. I'm only sorry that my mom has become angry at him.

Happy birthday, honey.

Mom and I

My mom loves Wal-Mart and says she could go there every day. One of my jobs when I visit is to take her there and then sit in the restaurant and read a book while she shops. In that way she can shop to her heart's content and not feel rushed. In the three full days I was there, we went to Wal-Mart twice.

She is 80 and in the early stages of Alzheimer's. Lately she's been mad at me a lot because of things I've had to do to help her. So when she's happy, I'm happy, and when she's not, well, I try not to think of it. [March 21, 2007]

Still at Wal-Mart. I don't tell her all the things I learned about Wal-Mart from watching the DVD Wal-Mart: The High Cost of Low Price.

While we were there I helped her choose some new blouses in bright spring colors. I try to compliment her on her appearance whenever I can; she always looks neat and attractive. I haven't yet seen any decline in that area. However, when it came time to try on the blouses, she wanted to do it right in the middle of the store. This time I was prepared, unlike the first time it happened when I think I may have embarrassed her by scolding her and rushing her into the fitting room. This time I grabbed another blouse and said, "I'd like to try on some things too. Let's go to the fitting room together, and we can model for each other." It worked, and it preserved her dignity. She looked great in the new blouses. [March 21, 2007]

This is the view from the neurologist's office. I met with the neurologist to see if my mom could switch to a generic Alzheimer's medication. Over a year ago I signed her up for a Medicare Part D program, but at the end of this year they changed the coverage so that it won't cover brand name drugs during the "gap." The change meant that I had to ask all her doctors to change her meds to generics where they could. I'm worried that if she has to pay full price for the Alzheimer's drug, she'll stop taking it.

Unfortunately, I learned, the big names (Aricept, Razadyne, Namenda) are not available as generics. At this point it would be great if she could add another Alzheimer's med to the one she already takes, but at $150 per month for each one, she would get to the gap sooner, and then would have to pay $300 per month out of her own pocket.

The situation is maddening. Medicare Part D is complex and hard to understand. I can't imagine being an elderly person, not comfortable on a computer, trying to understand how it works and which plan is the best for the meds I take. Even with my relative youth, education, and technical savvy I find it difficult to figure out. I signed my mom up with the plan that made the best sense for her at the time, and then they changed it. [March 22, 2007]

L is my mom's geriatric care manager. She gives me good advice, and even though she had strep throat she met with me and P (below). Because my mom doesn't believe there is anything wrong with her, we had to have the meeting without her and without her knowledge. Most of the things I do for her are done without her knowing anything about them. I hate to hide things from her, but there's no other way to do it. [March 22, 2007]

P is my big sister. I acquired two sisters when my mom became close to P's dad several years after my dad had died. Mom and B were companions until B passed away nearly two years ago. P is wonderful, magnificent, and all the other superlatives I can't think of right now.

She helps me out when I'm feeling distressed or when there's an issue with my mom that I just can't figure out.

K is my mother's primary care physician. Everyone at the clinic has been a big help to me. My mother's previous doctor, M, met with us for over an hour on her last day at work at the clinic. Her colleagues finally had to invite me and my mom to her going away party just to get M there. She tried to help me convince my mom to move to my town or into assisted living. [March 23, 2007]

In the hour I had between meeting with Dr. K and taking my mom to dinner I wanted to take a nap. When I left home I was feeling a bit run down, and during my time with my mom I was constantly on the go or dealing with my mom's anger and distress. So, I was pretty tired. My mom, however, wanted to show me all her blouses. Before Alzheimer's she would have insisted that I get some rest and probably would have canceled her plans for the evening. But as the disease takes its toll, she becomes more like a child, able to focus only on her own needs and desires.

I lay on the bed and took pictures and video of her. It ended up being the the most relaxing time of the trip for me.

We ate at a Mexican restaurant that night. My mom loves Mexican food and only gets to have it when I'm visiting. This was our second time during the visit. [March 23, 2007]

We went to hear the gospel group that big sister P's husband is in. They were playing at a veteran's home. My mom had a good time, and it was a nice way to conclude my visit. [March 23, 2007]

Back home and waiting for my bags at the airport. I hate leaving my mom and wish so badly that she would move here. There would be so many services for her here, and she wouldn't have to work up her courage - because she hates to ask for help - whenever she needed to ask someone to take her shopping. [March 24, 2007]