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.
Saturday, April 28, 2007
Tuesday, April 17, 2007
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.
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.
Monday, April 9, 2007
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
Monday, April 2, 2007
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.
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.
Sunday, April 1, 2007
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.
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.
Saturday, March 31, 2007
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]
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]
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