Thursday

Well things are still going really well. She's almost finished yet another puzzle, and has been sleeping and eating well. We go to Vermont this weekend, and I'm pretty excited to see her reaction. It's so beautiful there. Halloween is also tomorrow and we are going to take the kids trick or treating together. Should be a fun few days. She leaves on Monday, and I'm going to be pretty sad to see her go. I've enjoyed having her here. Hopefully she'll be back for Christmas. That's about it for now.

Seroquel, This weekend and Scam Artists

I experienced my first day with my mom when she didn't take her seroquel. She simply forgot to put the pill in her pill box and we weren't at home so she couldn't take it. She didn't sleep, she didn't eat, and she was agitated all day. Big difference. I know in earlier blogs I was all worried and concerned that she shouldn't be on this medication, but I could tell today it is helping her. I'm just wondering how she is going to be able to afford it. It's the most expensive medication she takes I think.

In other news, the Jamaica scam artists are still preying on my mother. They are relentless. I managed to grab the phone from my mom at one point and told them in not so many choice words that they were not going to get another penny out of her, and the bastards called her back. These people are horrible. The only satisfaction is that I know they'll be getting some bad karma for treating people this way. What is even more irritating is that about a year ago, I had out of country calls blocked on her cell phone. I'm not sure how they are not blocked now, but they aren't.

That's about it now. We had my son's birthday party tonight and she had a good time helping me with setting up everything. She fell asleep on the couch at about 8:00 pm though, I'm sure because she was so wired all last night and today from not taking her medicine. I bet tomorrow she'll be fine :)

The image I picked tonight is called "The Road Less Traveled" Traveling is what we've been doing the past 2 weeks and we are going to Vermont this weekend so it was fitting for what's going on in our lives right now. The background was taken on Hwy 5 in California, the figure is a photomanipulation of a vintage photo. Copyright 2008 all rights reserved.

The Donut Hole ~ a new twist on patient care

Well, I have to say I was pretty shocked to find out yesterday that my mother's Medicare Part D (This is her first year on Medicare as she just turned 65) Ran out.

Yes, RAN OUT. Apparently, it's called a Donut Hole. We went to go get my mother's blood pressure medication filled and when we picked it up, I was told the "Co-pay" was $64.12. I'm like that's the CO PAY??? Well how much does the drug cost total? Oh it's $94. . I'm no mathematician, but I'm thinking that's not much of a savings considering my mother has worked full time for the state for the last 20 years and has earned her medicare coverage right? The Pharmacist went on to explain to us that we'd have to call the number on my mom's medicare card, but more than likely she's in the donut hole. She told us that lots of seniors face this every October or November when their medicare coverage runs out.

I called, and sure enough, the limit for prescription drug coverage is $2510.00 per year. Once that is used up (including what my mother paid as co-pays) she has to pay 100% out of pocket. I asked why she had run out, and you guessed it, Aricept is $171.00 a month, and the Seroquel is close to $300 a month. That's not including her other medications which she needs to live like blood pressure medication and her blood thinner medication.

I found these statistics while doing my search

Medicare Part D: You should know that…

* 7 million hit Medicare's Doughnut Hole trap in 2007. Did you?
* While in Medicare's Doughnut Hole you'll pay the full retail for drugs completely out-of-pocket.
* You must pay $3850 in order to pass Medicare's Doughnut Hole.
* Drug prices increased 9.2% from April 2006 to April 2007 on the top 15 drugs
* The average senior may fall into Medicare's Doughnut Hole on Sept 13nd in 2007.
* Medicare's Doughnut Hole will continue to grow and engulf more seniors each and every year.
* Millions will be unable to afford their life-saving meds once in Medicare's Gap, causing dire health consequences.
* Mortality rates amongst seniors increase 22% when Medicare Part D is cut off, such as in the case of Medicare's drug coverage gap.
* The pharmaceutical companies are reporting record profits since the start of Medicare's Part D Drug plan.
* Many call Medicare Doughnut Hole a “black hole” because once a person falls in, few get out.

How can our country, the 'greatest country in the world' have such a crappy system for our seniors who have worked their entire lives? What a mess.

What is my mom going to do? I don't know. She was extremely upset, and told me she wasn't going to take her Aricept or her blood pressure medication anymore. I told her she had to take those medications or she could die. She said she wasn't.


Here is another interesting little tid-bit about why we have this plan. Thank you once again George W. . .

The Expanding Doughnut Hole

By now most people have heard that the Part D benefit has a large gap in coverage that often hits people by surprise when they go to the pharmacy and discover they have to pay 100 percent of the cost of their drugs. During this gap, the insurance companies providing Part D still receive monthly checks from plan members and taxpayers, but those companies pay nothing toward covering the prescription drugs of people with Medicare.

Less well known is that the coverage gap is even wider next year. The Bush administration has bragged to the press that the average Part D premium is going down, but it failed to mention that all other out-of-pocket spending is going up. The amount people will have to spend out of pocket before their Part D coverage starts picking up the tab again will rise from $3,600 in 2006 to $3,850 in 2007 (see chart below to learn how the standard Part D benefit changes in 2007).

Worse, that money will buy fewer medicines in 2007 because Part D fails to rein in drug prices. An AARP study found that prices for the prescription drugs most commonly taken by older Americans rose over 6 percent, more than double the cost of living adjustment in Social Security benefits that kick in on January 1. Earlier research found that Part D plans pass on price hikes by pharmaceutical manufacturers nearly dollar for dollar to plan members.

The blame for both trends lies squarely with the Congressional leadership.

Congressional leaders forced through a drug benefit bill with a huge coverage gap. The law makes the gap grow as Part D spending per person grows. And, because Medicare is prohibited from negotiating drug prices, as manufacturers jack up prices, the coverage gap gets even bigger.

Instead of fixing these fundamental flaws with Part D, the Bush administration touts poll numbers that show how people “feel” about their Part D plan. But the same polls that show 80 percent satisfaction rates also reveal that 49 percent of those enrolled in Part D are paying the same amount, and 19 percent are paying more for their prescription drugs than they did before receiving coverage under Part D.

How can a program that will cost taxpayers and people with Medicare $1 trillion over the next 10 years do such a poor job of lowering the prescription drug bills of people with Medicare?

The answer is simple. Part D was designed to benefit the insurance companies that sell Part D plans and the pharmaceutical manufacturers that sell their overpriced medicines, not to be the best benefit possible for people with Medicare. Drugmakers and insurance companies are 100 percent satisfied with Part D because it has added millions to their bottom line.

By way of a thank you, the insurance companies and drugmakers have showered the Bush administration and Congressional leaders with massive campaign contributions. Some lawmakers and top administration officials have since been rewarded with lucrative jobs working for these companies, but others are up for re-election this November. That is when we have the chance to send them looking for employment in the private sector.

Source: http://seniorjournal.com/NEWS/MedicareDrugCards/6-09-22-MedicaresDoughnutHole.htm

Things are going well

I think everyone that has talked to my mom has commented on how good she's doing and how much her demeanor has changed since she's been here. I think her being around the kids and us has been really good for her and for them. The visit hasn't been without it's challenges, just a few minutes ago she told me she was going for a walk to use the payphone so she could call Jamaica to see if she's won her sweepstakes. It's the moments when she says things like that I have to remind myself that she's sick, and it's not her asking me those questions, but I'm trying to take it with stride. I've realized it's not worth arguing over, it's better just to supervise her and let her do what she needs to do, then she soon gets over it and forgets about it and she's back to my mom again. Since she's been here though, I'd say she's been 70% my mom and only 30% Alzheimers, which is a drastic improvement from when I was speaking to her on the phone. What is hard is trying to figure out a way to 'supervise' her without her knowing I am. That's the hard part, and my biggest fear. It's hard to know where the boundaries are. What is she ok to do? What is she not? She lives by herself, but I find myself being overprotective of her while she's here. She doesn't want me worrying about her either, she keeps telling me she's fine and she can take care of herself, and so far, she's been right. She hasn't forgotten anything that I've noticed since she's been here. She's been taking her medicine, eating, and has fixed herself up each day. She keeps up with my appointments, what time to get the boys and so far, seems like she's still doing just fine living independently. . .but then, the dreaded, I'm going for a walk, or the I'll be right back when we are in the store happens and I am reminded again of this disease.

I'll have to finish though, by saying overall, I think my mom is doing a lot better than many people have given her credit for. She's still my mom, and I'm so thankful for that each day now. I'll never take it for granted.

Lobster Bake and the Weekend

Well we had a great time this weekend. Mom did great. She kept talking about how much fun she was having and how glad she was that she came. It was a welcome relief from the past few months of depression and drama. We had a lobster bake and mom ate her own lobster. My Father in law cracked them all for her, but every time he put a new piece of lobster on her plate, she said oh I can't eat anymore, and then proceeded to eat each piece talking about "how good it was". She hasn't mentioned any thing about not being able to drive for 4 days now. I think that is a record. All of my in-laws were talking about how happy she seemed to be and how content she was working on the puzzle with everyone. My entire extended family took turns working with her on the puzzle, and speaking with her. Everyone helped out and it was a nice break for me too. It was a successful trip all around.

Today we are off to Mass for an appointment, and then grocery shopping. She's already up and ready and has fixed her hair and makeup. She just came in and told me she's ready to go! I guess I should get ready too huh? It's cold today! Frost on the ground.

More later + pictures hopefully

~Amber

Jamaica

So today we went and had our hair done and I took her out to lunch to this great 50's diner. She loved all the Elvis stuff and the music. She was smiling and singing a long the entire meal. It was nice to see her happy for a change and it was a great way to start the day. However, it didn't take long for my mother to start asking would I take her to a pay phone so she can call Jamaica for her $250K sweepstakes she 'won'. I counted on the way back from the salon, 12 times she asked me. Since we've been at the house, add another 6, total of 18 times so far today. Now, I figured something like this might come up, so I bought a few scratch tickets (first time in my life!) and had them in my purse for just such occasions. It did work in the car, it diverted her attention off the phone for about 5 minutes. Not as successful as I had hoped. I'm not totally sure how to handle this situation except that I just keep telling her no and change the subject. It's becoming increasingly more and more difficult though, and she's becoming a little angrier each time I tell her no. I wish I had a crystal ball that would tell me how to handle these types of issues with AD patients. Right now, she's content, working on the puzzle and soon we'll go get the boys and she'll be busy with them, so I feel like I made it through the day. Tomorrow, however we leave for a 6 hour drive to go to the beach, and I'm wondering how many times in the car she'll ask. Maybe I should go get some more word searches or scratch tickets or both. Should be an interesting weekend, hopefully she'll forget all about her sweepstakes. I wish those people would just fall off the face of the earth. In my mind there isn't anyone much worse than someone who preys on Alzheimer's patients. What is so bad is that they just are so relentless. They call 24/7 night and day. Her cell phone has been ringing quite a bit but she doesn't answer it when I'm around (which is pretty much always) thank goodness, but this gives me a lot of insight as to what she's doing at home all day. Not so good. The good part is that she can't understand them anymore. I just hear her saying WHAT really loud. Considering she's not sending them anymore money you'd think they'd just get bored and stop calling her.

She's Here

Well, She's here. The trip went pretty well with a few exceptions, but we are finally to this point. The boys are very excited, but everyone was pretty tired, so today will most likely be a day of rest. I've fixed a quiche and it smells really good! Can't wait to share some with her. That's it for now.

New Medication?

So, I was doing some research and came across this new medication. Does anyone know anything about it? I've read the study, and it looks pretty promising. I know that the Aricept my mother is on right now is not working, so I'm thinking this might be good to try. I've emailed her doctor and asked for feedback.

Hello Dr. XXX,

My mom comes to see you next on November XXth at Xpm, and I'd like to request that she be put on the Exelon Patch. Have you had any successes with this medication? The Aricept just doesn't seem to be working as we discussed on the phone a few weeks ago. Could we try something different please? Also, she's only taking the Seroquel at night, because she said it made her sleep during the day. I think XXXXX may have called you about that. She'll be staying with me for 3 weeks, and I'll be able to monitor how she's doing on the medication. I'll send you some feedback about that after November Xth, and in the meantime I'd appreciate your feedback on your opinion of Exelon.

Thank you,
*me*

I'm looking forward to finding out more about this medication. The side effects compared to Aricept are about the same from what I can tell, but I'm not a doctor either, so I want to be sure. If anyone has a loved one on this medication, I'd like to hear how they are doing.

YAY we won! 1.5 Million dollars to help Alzheimers

And the winners are...
Thank you for being part of Members Project® '08. Cardmembers from across the country submitted inspiring ideas for projects that could make a positive impact in the world.
Your votes have been counted and the results are in. See what a difference you've made in the world.
Presenting the Winning Projects
$1.5 million for 1st place goes to:
Alzheimer's Disease: Early Detection Matters and its fulfilling organization, Alzheimer's Association


I'm glad too that Donorschoose got 2nd place, as a teacher, I've received 2 grants from them in the past. Great organization as well.

Preparing for the trip

She's called 3x this morning. "What is the weather like there?" "Should I bring short sleeves too?" She asked me in an excited voice this morning. It was great to hear her enthusiasm. She made me laugh too when I explained her sleeping situation. I told her we had a bed all set up for her in a small room off our master bedroom. She asked me did it have a door, and I told her no, but it was a room, she responded with "well you know I really want my own room with a door." Okay mom, I'll put you in a room with a door and one of the boys can sleep downstairs :) We talked about making sure she had all her medicine, and what time she needed to be ready. She was upset about the fact that the airlines charge now for an extra bag, because she said, if I'm coming for three weeks, I need to bring two suitcases. My heart about dropped when I heard her say that. It's the first time she's acknowledged she's going to stay for 3 weeks. So, I'm off to clean my son's room and get it all ready for my mom. That will be a day long task within itself. I'm really looking forward to her being here.

A Different Angle

Well, anticipation is growing. Mom is coming for 3 weeks Tuesday. I'm pretty excited to have her here.

I was doing a little research, and came across this article. It sums up how I think my mom must feel. I can't speak for her, but it sure does explain a lot of what she might be going through. I'm not a huge Terry Pratchett fan or anything, but this article was very well written and made me really look at what's going on from a different angle tonight.

Photograph is of the tree I spoke of a few entries ago that is in my front yard. Taken from "a different angle."

Realization

Well I talked to mom today and she seemed pretty depressed. She kept repeating over and over how she just didn't understand why they were doing this to her. I tried to explain, many times, but she just doesn't quite understand.

The good news is, that I think I may have talked her into staying the whole time. She seemed very reluctant, but this is the first time she didn't come right out and say no. She's been making her usual phone calls today, but she also is starting to realize that nothing is going to change. She cried on the phone to me today asking me why this is happening to her. It was hard, but I know once she gets up here and I can take her places and do things with her she'll be better.

That's about it for today. It's going to be a busy weekend, and I'm playing single mom for the next few days which always makes life more exciting :) The picture I chose today is Chihuly , a very famous glass maker/artist. I saw some of his work this past May in San Francisco at the De Young. He's got a great show there right now if you happen to be in the area. I'd die to go see it. The correlation I got from his work is a little like someone's brain who has Alzheimer's. All those synapses are firing, but they don't go anywhere.

Coming to Visit & Selfishness

So I guess the last few days have been focused on getting my mom to come visit us. As I stated earlier, I went ahead and bought the tickets for her to come, and my husband is going to fly down and pick her up, but she keeps telling me she can only spend 2 days. Finally, I got her worked up to a week, but she keeps telling me she absolutely cannot stay for more than one week. It's really hard to hear that. I mean, she has two grandchildren that miss her. They don't understand all that is going on, all that they know is that they haven't seen their grandmother since last Christmas.

A few years ago, she would have been anxious and excited to spend time with us, now I feel like I'm pulling teeth to get her to come, and what does she have to do that is so important? Nothing. She has nothing going on, nothing planned. She wants to get back home so she can call people and try to get her license back. It's just awful. I wish she'd just let it go, but I understand why she isn't. She feels comfortable in her home, and she wants to be there, because that is where she feels safe I guess. I just miss her. Hopefully once she's here she'll change her mind and want to stay. We shall see.

On a side note, I went to the doctor yesterday and found out I have some medical issues I was unaware of. I told my mom the sugar coated version of what I found out, and she didn't seem to understand. She said in one sentence, "oh that's too bad honey, did you hear from the lawyer about my case yet?" It really upset me. I know she didn't mean to be insensitive, but it came across that way, and it really threw me for a loop. I keep telling myself I need to get used to it. Once she's gone, it's not like I'll have her to call and talk about every little life detail that goes on. It's just that for my entire life, she's been there for me. I could call her and ask her anything, from how long do you heat baby formula to what takes out grass stains to how to make potato soup. I came to realize that the thing I hate most about this disease is that I already don't have my mom to talk to anymore. We don't really talk, it's more me listening to her rant on about how sad she is. How angry she is, how upset she is. I don't have that security blanket of knowing she's there anymore, knowing she loves me. (Sure I know she loves me, but she can't express that in the same way anymore- if that makes sense.) I think the real thing I'm struggling with is the fact that she's already gone in some respect. It makes me angry too. It makes me mad at the world. Sure, I know it's selfish, but hey I lost my father at a young age, and I always sort of felt entitled to have my mom. In my mind, I always told myself that God would not take my mother from me, because he had my father. As an adult, I know the world doesn't work like that, but it got me through a lot as a kid. Now don't go thinking I'm mad at God, I'm not, but that was my logic for most of my childhood.

I just read that and it does sound selfish, but that's how I feel. She's here, but she's not here. That is the hardest part.

Finally, at my mom's request (2x today) I called her neighbor. She's a sweet woman who has lost 2 family members in the past year. She's been doing a lot for my mom, and she told me that she feels really bad for my mother. She said what the courts were doing to her wasn't right, and I should get it changed. She said she knew lots of people that had Alzheimer's that were 'way worse than my mother' who were still driving. I tried to explain a little of why my mom isn't, but I don't think she understood. I got the impression she felt like I wasn't doing what I should as her daughter. That I needed to 'fix' how the courts are treating my mother. It was a hard conversation to have, and I know she meant well. I just have to tell myself that it's good to know there is someone else looking out for my mom. She's such a sweet lady, my mom is lucky to have her next door.

Tomorrow is a new day.

It's over

Well the good news is, it's over. The bad news is my mom was pretty upset. Overall, I guess it went as well as could be expected, but she's already been calling all over town again and has decided that she's going to get herself another lawyer to try and appeal again. It's just going to be more heartache for her, so I hope for everyone's sake she just moves on to something else. Coming here to visit should help, and she seems pretty open to the idea. She said she could only stay for a few days, but we'll see when she gets here if we can stretch that out, right now the tickets are for a little over 2 weeks. I think once she gets here she'll be ok, but if we have to, I guess we could change them.

The judge did award her a certain amount of money per week, so that should help give her some of her independence back. She really doesn't have the money to spend, but it will make her feel better so I'm actually glad it happened. I spoke with her on the phone 3x already today, and she's been crying each time. It's really hard to hear your own mother on the phone like that, but I know she has a right to be upset, I'd be upset too. Hopefully she'll get busy doing something in the house and some of the frustration will go away. I'm going to call her again tonight and let the boys talk to her, that might help a little. Guess that's it for now.

Court Day

There is a beautiful Maple tree outside of the window that I can see from this desk. It's turned now, a bright golden yellow. The light floods this room in the morning, bathing these walls in an amber glow. I should feel warm, and normally, I do get a warm feeling when I come into this room, but today, I don't. I'm really worried about my mom.
It's going to really upset her, court today. I'm nervous, and am just hoping and praying that it goes by smoothly. My husband is down there, and my Uncle is going, which makes me feel a lot better. I'm anxious to hear from them, and I'll be glad when this is over. That's really all that is on my mind right now, and all that I can write about.

Court date # 2 approaching.

Well I talked to my mom's new lawyer yesterday. She said she didn't think anything was going to change as far as my mom's living situation. My mom is going to be so devastated. We are trying to prepare her for the fact that nothing is going to change, but it's going to be hard. My mom is in a sense of denial that she's going to get her license back. I can understand how she feels to some extent, if someone came and took my license away and I thought I could drive just fine, I'd be mad too. It's not only that, it's the money. She doesn't have any control over her finances anymore, which honestly is a good thing, but it's also very hard for her. She went from having total control over her life to having 0 control over her life in a matter of 2 months. That has to be a hard adjustment for anyone, especially my mom, who has been on her own and fiercely independent since my father passed away.
I really want to be there, but financially, it's just not an option for us right now, so my husband is going to fly down to be with her. I talked to my Uncle yesterday too, and he said he'd be there. I do feel better knowing they'll both be there to help her, but I dread what is going to happen in that court room. I really can't even focus right now, she's just on my mind constantly.

Friday & Feeling a Little Down

I just called my mom, but she wasn't home. I'm guessing she's out at Wal-mart getting her broccoli salad for the weekend :)She was upset because Wal-mart apparently changed the recipe for the salad she loves and they are getting it from a different distributor now.

Well a lot happened yesterday, but rather than comment on it, I'll just say that this disease gets to everyone. To try to channel that thought into something positive, I joined up with the Move to End Alzhiemers Cure campaign. You can help me by donating here. I think this is one of the best things I can do for today, and I'll leave it at that.

Busy weekend this weekend, and a very big day for my mom on Monday. It's going to be a long few days, but I just keep telling myself that Tuesday it will all be over, and then the following week, she'll get to be here with us and the boys. I'm really looking forward to spending some time with her, I'm looking forward to Monday being over, and I'll be glad when this is all behind us. She told me on the phone last night that she really missed us. That's the first time she's said that in about six months. It was nice to hear. That's about it for now.

American Express Contest

This week

I didn't write everyday this week, because pretty much things have been the same each day. The status quo is that my mother is waiting for her court date next Monday. She's been raking up leaves, and just making phone calls all week aggravating everyone that is trying to take care of her. She's getting more and more anxious as the days go by about 'getting her license' back. I did get her plane tickets to come see us October 14th. My husband is going to try to fly down for her court date. It was cheaper for him to go then for all of us and the boys to go. I decided to have her stay with us for about 3 weeks. We'll see how the visit goes. She doesn't know she's coming yet, but we are going to tell her after the court date.

I've got her room all set up, and I'm going to try and get a few more puzzles and things for us to work on while she's here. Her medicine seems to be doing ok, but I won't really know until she's here with us. I've been trying to focus my energy on some political action and on the American Express 1.5 Million dollar cure. I hope we win! That's about it for now.

Letter to Congress

October 2, 2008

The Honorable Carol Shea-Porter
Carol Shea-Porter
Independence and New Jersey Avenues, SE
LHOB- Longworth House Office Building - Room 1508
Washington, DC 20515-2902
United States

RE: Support Alzheimer Families

Dear Representative Shea-Porter:

As a constituent, I urge you to support $30 billion for medical research at the National Institutes of Health (NIH) in the Fiscal Year 2008 omnibus appropriations bill. Funding NIH at this level would provide a $16 million increase for Alzheimer research – money that is critically needed to protect the 78 million baby boomers whose lives will soon be at risk for this deadly disease which has no cure or effective treatment. Although this funding level still falls short of what is needed to bring Alzheimer’s under control, it is the same amount that was included in the Labor/Health & Human Services/Education appropriations bill that was vetoed earlier this month.

Alzheimer’s places tremendous financial and emotional burdens on individuals affected by the disease and their family caregivers. Stopping Alzheimer’s isn’t just good social policy – it’s a sound economic investment as well. This year Alzheimer’s is costing Medicare $91 billion and Medicaid $21 billion. By 2015, the two programs will be spending $210 billion just on individuals with Alzheimer’s. The nation cannot afford to wait for a cure or better treatments. Immediate federal action is needed to ensure that scientists find treatments to delay, halt or reverse the progression of Alzheimer’s.

Congress must finish the job it was elected to do. It is time to accelerate the fight against Alzheimer’s disease – NOW. If you are interested, take a look at my blog to see the struggle my family has gone through @ http://alzheimersthief.blogspot.com/

Sincerely,

XxxmexxX