Back with us

Well we made it through the holidays. I went down to get my mom, and bring her back up with us. It had been over a month since I'd seen her, and it was, and still is surprising how much this disease has progressed. She stayed with her sister until December, then we went down a few weeks later. Upon arrival at her house,(after a 13 turned 20 hour drive) I was met with the greeting of "we have to go to the hospital to see your brother." Now, knowing my mom, it was just easier to go ahead and say, alright- let's go mom. So that is exactly what I did. When we got there, thankfully they had already transferred him, because I didn't want her anymore upset than she already was. His bike was in the ER, and they wouldn't tell us where they sent him. This of course really stirred my mom, and she made somewhat of a scene in the ER, but eventually we managed to leave and I got her back home. She was quite understandably upset.
What seemed to really agitate her was the bike. Now, I'm not sure why, but I've noticed she gets fixated on one certain thing, and then that's it. It's like, if we can just get past this 'one' thing, she'd be ok. So it wasn't 2 days later she had us convinced to drive back to the hospital and pick up his bike. Anyway, the holidays went on, and with the exception of her eating way too many recesses cups, cleaning up after us obsessively, and yelling at a few inappropriate times, it was al right. We got through it. On Christmas eve day,(and Christmas Day) my brother kept calling, wanting us to come see him. Now, being that he was in a certain hospital that I really did not want to go to, it was hard for me to make the decision to take my mom or not take my mom, but I decided that it would be better for her see that he was doing okay, than to not see him, so, on the 26th, I drove her to see him. That would have been enough in itself, but after he called a few more times, he asked that we take his bike to his house for him and lock it all up as he had left the door open before he went to the hospital. Sure, we can do that- only when we got there, a water pipe had broken behind his bathtub and there was water everywhere. This upset my mom more than I've ever seen her in quite a while. She actually pushed me out of the way when I told her not to go in. So much good that did. Anyway, long story short, the ride to the hospital, which was about a hour away was not a pleasant one, and getting through that day was quite an ordeal.

We made it, and then drove her back up here to New England. She asked are we there yet more than the kids, and the drive was a longer one than I remembered, but she seems fine now, and has been working on puzzles since we got here. She's yelled at my son a few times for not picking up his toys, and he seems to actually listen to her better than me so- that's fine. My older son is aware of the changes in her, but has taken it in stride and is even helping me a little with her. I think it will be good when they go back to school though. It's one thing to be aware, it's another to be with it all day long. I haven't bought her plane ticket back yet, because I want to see how she does and how long we can get her to stay. Only problem is, she only brought medicine for 2 weeks (exactly.) typical. Anyway,I'll figure that out later.

Enough for now, 2009 is going to be a better year I hope!

It's been a while

I know, I've not been posting, but honestly I haven't had to because my mom has been staying with her sister and it's been really nice to have a break. I have to say it makes a huge difference knowing she's being taken care of. The next two weeks will be a testament to see if she's going to be able to stay by herself for much longer. I hope she's going to be ok. I called her phone but her answering machine was full so I couldn't leave a message. That's not a good thing, that means the sweepstakes scam people have been calling her so much they filled up her 1980's answering machine tape. (I think it's 30 minutes long.) How's that for technology???

Anyway, we are driving down to get her in a few weeks. I'll be bring her back up to stay with us again. I'm looking forward to seeing her. It's so much easier when I know she's safe.

I did decide to go to counseling. Having my two immediate family members sick at the same time just proved to be too much. One I can handle- two no.

My brother is still in the hospital and has been since Nov. 22nd. My mom is very upset and doesn't understand why he's still there.

More later. . .

Mental Illnesses (yes Plural) and some Religion

Well I've had enough. I had planned to keep this part of my life off this blog, because this blog is about my mother, but the two keep intertwining, and I can no longer keep the two separate. I'm wondering if anyone else in the world is dealing with two mental illnesses in their family at one time. Does this happen to anyone else? What are the odds?

I've been asking myself these questions over and over all day today. It started yesterday, I received a phone call from a family friend that my brother was in the hospital. He apparently was psychotic, and not making much sense and was calling people from the hospital. (Our tax dollars at work! heh.) He then called my mother (twice), who is visiting her sister and was quite content (exception being not being able to email the people from Jamaica to get her winning sweepstakes) and told my mom that she wasn't his real mother. Yes I know that is a run on sentence. .

Now, any normal, rational person would understand that my brother is sick, and being that he's schizophrenic, they would understand that he didn't really mean this, and that he was delusional. My mother, however, doesn't understand this. She got very upset and was hurt by the fact that her son told her he wasn't her mother. I know as a mother myself, I would be upset too.

How do you deal with this? How can you explain to your mother that your brother really didn't mean what he said, when your mother doesn't even understand what schizophrenia is?

So here is what I'm wondering.

1. Is there a genetic link between schizophrenia and Alzheimers
2. Should I check myself into the hospital now or later?? prozac anyone?
3. I'm losing them both at the same time. Is there a reason for this? Is this the way God planned it?

I really feel like sometimes it's just too much to handle at one time. I can't help them both. I can't make either better. I can only get through each day. My instincts tell me there is a link, a reason, there is something bigger going on here. I want to know what it is. Correction, I need to know what it is.

Someone said to me today, they said they were in counseling and asked the counselor, isn't everyone's life like this? The counselor answered a firm "no". Was the counselor wrong? Right? *Is* everyone's life like this? Or is it just my life? Are there families out there that are still 'normal'? I don't remember normal it's been so long. I really miss my Dad.

Finally, Trying to find some answers, I came across this interesting article. It's basically saying there is a link between alzheimers, schizophrenia and autism. My younger son is possibly on the spectrum for autism. We haven't had him officially diagnosed on paper, but verbally we were told he has Aspergers syndrome. We didn't want him labeled at such a young age, and he's actually doing quite well, so I'm going to avoid that mountain until I have to climb it. . but It just clicked tonight. There has to be a connection.


Photo's tonight are for two reasons. The first, called Air, was taken at Alcatraz. I feel like in a way both my mom and my brother are imprisoned, and they only get a small portion of what they need to be 'normal'. They can see outside, but they can't get out there. They can only get what comes through the opening.

The second, since I touched on religion a little tonight, I'll throw up one of my favorite pictures. It was taken in a mission in California and spoke to me. It's a very old oil painting. I cropped it and lightened it a little. It still intrigues me to look at it.

Early Onset Video

Thanks to C.H. for sharing this video with me.

It's about early onset AD, and ran on a local Maryland news channel. There is a short 10 second commercial before the actual video.



My email back to her-
I'm going to stick that on my blog. It's very accurate as to the frustration of the early diagnosis. I actually flew home and TOOK my mother to the doctor when she was 61 and 62 and said look, I'm scared she's got early onset alzheimers, I used those exact words and the doctor dismissed me. He's like oh she's fine, and my mom was like Oh I'm fine- so that was the end of it.

"I can't put your mother on medicine if she doesn't want to take it, she's an adult." was his remark to me.

I understand, yes she's an adult, and yes she was only 61 or 62, but who knows her better than her daughter, her sister and her best friend? Doctors should listen more and talk less sometimes. We could have saved her years of this frustration had she taken the medication earlier. Just think of the difference in her personality then and now.



The photo today is titled
"If I had only seen it earlier"

I think you get the connection :)

Back to Reality

Well, she's been home now for a week. It's only taken that long to undo all that positive karma we had when she was here. Yesterday, on my birthday no less, she called me to tell me that she'd won the sweepstakes and she was frustrated with the fact that she couldn't go use the payphone to call them. A friend of hers called me upset because my mom was insisting she take her to the phone. When I called my mom back she got angry with me on the phone and pretty much hung up.

This morning, she called, and I was thinking that she'd remembered it was my birthday and was calling to say Happy Birthday, but nope, she was calling to tell me that she was angry with me because "I had told XXXX to cut her phone off." Without getting into specifics, it was just not good to hear my mom yelling and so upset. She was insistent that I call XXXX and tell her "not to cut off my phone until Dec 1st, because I'm going to win the sweepstakes!" When I asked her what she needed money for, she said to "pay me back for helping her." I said Mom, you don't owe me any money and you don't owe anyone else any money. There is no reason why you even need any money. All your bills are paid, and you have everything you need, just enjoy it. . . That didn't go over so well. She got mad at yelled bye and hung up on me.

Yes, I know she's sick. Yes, I know she has AD. But it doesn't make it any easier. This is the first time since I've been alive she forgot my birthday. Selfish? Maybe, but it was important to me to know she's still here. She's still my mom ya know? That she remembers family and the important things. But instead, she's focused on some crook who's just brainwashed her and is making this dreadful disease worse on her and everyone else. I really wish our government could do something about this. It's really out of control.

Great Time in Vermont and Departure

This weekend we took my mom to Vermont. We stayed at a working Dairy Farm and then did some site seeing. One of the highlights was a hayride through a historic 1890's Farm. It was beautiful. Mom really seemed to like the wagon ride, but not the cows. The boys of course loved every minute of it. We took her to eat at a Japanese Steak House. That was rather interesting as she really just wanted "a chicken breast". I kept saying Mom they don't have KFC here, and she was like well that's what I want! We ordered her the chicken and she liked it, but I was worried for a little while she wouldn't eat it. We did get her to try some sushi, which she promptly spit out and said it was the worst thing she had ever tasted. :)

We got back home Sunday night and she worked on another puzzle. We didn't get to finish it, but she, my younger son and husband all worked on it together for quite a while. Today I took her to the airport, and after repacking her bags so that neither were over 50lbs, I went through security with her and waited until she boarded the plane. Everything seemed to go according to schedule, and she called this evening when she got home. I've tried to call her a few times since, to make sure the house is ok, and no pipes broke or anything, but I can't get her. She's making plans to go visit her sister in a few weeks, which will be good for her. I know she's going to enjoy that, and then we are going to try to get her to come back for Christmas. Overall, it was a great visit, and a good experience for everyone. I miss her already.

The photograph is of Liberty Hill Farm, where we stayed in Vermont. Great Place!

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

Another Monday

I called my mom this morning first thing. She said she had been outside working on raking up the leaves, but that it was not really worth her time anymore because it was fall now, and they just keep falling. I felt this was a pretty accurate statement. :)
This weekend I talked to her each day as well, and she said she was just working on puzzles, and was catching up on some cleaning around the house. I again asked her today if she was going to come visit us in a few weeks and she said she couldn't tell me now she had to wait and see how things went in court. I think I'm just going to go ahead and get the tickets now. We'll see.

She seemed to be in ok spirits as far as her mood. I didn't ask her about the seroquel, but she had told me this weekend she wasn't going to take it in the morning anymore, so I'll have to remember to ask her tomorrow when I call.

We looked at a house here this weekend, an 1820's farmhouse that has a 'wing' for my mom with a private entrance. It would be great if I felt she could live there with us, but I know that's pretty much not an option anymore. I really upsets me, it's the perfect house for both of us and my family.

Talking to the Doctor

Well I talked to the Doctor yesterday. He said that it's very typical to give a dose of seroquel to patients who are experiencing symptoms like my mothers. I asked him about the dose, the side effects, and he said that my mother needed something to calm her down, and that is the most typically prescribed meds. I'm still not convinced, but I'm going to give it a chance and see how it goes.

So what symptoms was she exhibiting? I asked, and he said she was very anxious and 'wound up'. I guess that's fair, she was anxious about not having her license. but I'm not sure she needs 50mgs of this medication.

He also did not increase the Aricept. Apparently, there are no studies that prove that increasing the dose helps at all, and the doctor said that actually it's shown to decrease the effect in recent studies. So is it working for my mom? Most likely not. Dr. XXXXX said it only works in 30% of the patients, and unfortunately, it's the best thing on the market right now for Alzheimers.

The doctor my mother is seeing is one of the best doctors in the field of Alzheimers. I'm going to trust his professional opinion and see how it goes. It just seems like there should be something else out there. We need something more. . anything.

Finally, I asked were there any studies, any clinical trials my mother could do, he said at the moment there weren't but they were working on some coming up in about a year. In about a year it might be too late for my mom. He didn't tell me this, but he didn't need to.


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I just called my mom, to check and see how she was feeling and she said the new medicine was making her feel extremely tired and she felt sleepy all the time. I asked her if she slept good last night and she said she slept for over 10 hours. That's actually a good thing for my mom, because she didn't sleep well before, so maybe this will help her fall asleep, but she said she didn't think she was going to take it during the day anymore because it made her sleep all day. I have to say I agree with that, I don't want her sleeping all day, that's not ok, but I do think it will help her at night. I'm going to call her back later and see how she feels. She seemed to be in good spirits on the phone. She said it was raining and she was working on a puzzle. She also said she didn't have any money and she wanted some broccoli salad from wal-mart, but they were out of it. I'm going to call my Uncle and see if he can pick her up some on the way home from work today.

Seroquel

Yesterday my mom had her doctors appointment with her AD doctor. I had previously written him an email about my concerns, and from what she said on the phone last night, her Aricept medication was not increased, but instead, the doctor gave her 25mg of Seroquel. Now, I have a family member who was taking this medication for another disorder, so I was a little surprised to find out that my mother had been prescribed it. I looked it up, and everything I read said that elderly patients showing signs of dementia should NOT take this medication. So why is my mom on it? Right on the Seroquel home page it says this. . .

Elderly patients with dementia-related psychosis (having lost touch with reality due to confusion and memory loss) treated with this type of medicine are at an increased risk of death, compared to placebo (sugar pill). SEROQUEL is not approved for treating these patients.

I also found this on the wikipedia site. .

A 2005 British Medical Journal report showed that quetiapine was ineffective in reducing agitation among Alzheimer's patients, whose consumption of the drug then constituted 29% of sales; in fact, quetiapine was found to make cognitive functioning worse in elderly patients with dementia.[6]

I'm very concerned about my mom being on this medication. I'm going to email the doctor again today, hopefully, I'll get some answers.

Light through the clouds

Yesterday was National Alzheimer's Awareness Day. I feel like every day is awareness day for me ha ha. Today is Monday, Sept 22, 2008. I waited until 6:30pm to give my mom a call today basically because I was so busy. Today was a good day. Not only did I get what I needed to get done today, I didn't have anyone calling me telling me anything negative for a change. She seemed to have a good day too. She seemed to be my old mom. She was telling me about the garage sale, and told me each thing that I sold, added it all up and said you made $15.00!! I think she's still quicker at math than I am. She said she was working on a 1000 piece puzzle, and my younger son talked to her on the phone. I could only hear his side of the conversation, but she seemed to be asking relevant questions (Did you finish your homework, what did you do today in school. .) I stressed again how we couldn't wait to see her, and she said after her next court date she hoped she could come. That court date is October 6th. I really hope she'll come up and stay with us for a while. It would be good for her. I miss her too. I miss seeing her play with my boys.

One thing that made me laugh today is that my mom is not supposed to get any of her mail. Today, she said she watched the mailman go by the house at the normal time which is about 2:00pm, but then at 5:00, he came back and gave her a sweepstakes thing. She's not supposed to get any mail, much less a sweepstakes offer. She got all excited and has already sent it back. She told me not to tell ANYONE that she got her mail today. I asked her did she send any money and she said "NO! if you have to send money it's scam! I didn't send any money, I just checked no contribution today and mailed it back." I'm wondering if maybe it came UPS or something, but who knows.

She seemed in very good spirits, and was actually laughing and said she didn't make any phone calls today. I wish every day was like today.

On a side note, I'm a photographer, so occasionally I'll be throwing up some of my work just to break up the space a little. This was taken this summer in Hollister, CA. It's called Positive Negative Tree. Do you see the negative tree? I thought it was sorta cool, but it also works for the title of this entry.

Assisted Living & our move.

So first, Let me say that I've been playing with the idea of assisted living myself for years. I talked to my mom about her wishes before she got sick. We looked at what was out there. Two years ago, when she came to visit me, we went to an upscale assisted living community and took a tour. My mom wasn't impressed. She said she couldn't fathom living anywhere but her own house. I can't say I'd disagree with her. I mean, this place, it was nice. It was like a resort, but it was 5K a month. (YES A MONTH) and my mom doesn't need all that. She needs people, not a work out room. We eventually gave up on the idea of an inclusive ritzy retirement community (not that we could afford it anyway) and put my mom on the waiting list for a few income based retirement communities in the town I lived in. I thought this would be perfect for her, no yard to mow, no upkeep, just a small one bedroom condo in a nice area, close to us, across from the middle school, the boys could walk over and see her after school. The waiting list was 5 years for one, and 3-6 years for another. We filled out the paperwork and added her to the list. To clarify things; the retirement community was simply an apartment. The 5K/month assisted living community had nurses on staff, etc to take care of medical issues, including AD. But this was 2 years ago, before her diagnosis, and I didn't see that she needed 'assisted living' at that time.

After I realized that neither she nor I could afford anything fancy or 'assisted' close to where I was living at the time, my husband and I played around with the idea of moving back to the east coast and buying a home that had an in law apartment in it. We thought oh, we'll get a house with some land, build an apartment for my mom, and it will be better for everyone. This seemed to be the best thing for our family at the time. (Two years ago.) My husband also has a mother who is living in a income based retirement community here in New England. We thought either way, it would give us options for both of them. It took us a year to make the decision, and then a year to sell our house in one of the worst housing markets ever. Financially, not a great move for us, but for my mom, I felt like it was the best choice. Unfortunately, during those 2 years, things with my mom changed dramatically. By July of 2008, we were under contract with a home on the east coast, and we were planning to make one of the outbuildings an apartment for my mother. When we found out this would cost upwards of 100K due to structural problems, this plan didn't seem like such a great idea anymore. Other issues with the house made us change our mind and we decided to back out of the deal. Problem was, we had to be out of our home that had sold by July 30th, so we rented a home in the town we were going to by a house in on the east coast. We drove across the country, moving van in tow, it took us 7 days. I'll just say we are finally in New England, which is where my in-laws all live, but the town we picked was purely because it was where we were under contract. We don't know a soul here. I took a year leave from my job, my husband, transferred at our own expense to another site at his.

As a side note, not only did the original plan of having my mom move in with us now not seem like such a great idea, the doctor who evaluated my mother for AD called and spoke with me and stated that he felt it was more than I'd be able to handle at my mom's current state. He said she really needed to be in an environment where she could be monitored 24/7. What happens if she leaves the stove on? What happens if she wanders off while you are at work? These are all things you need to consider when dealing with someone with AD. Yes, she might be OK now, but when will she not be ok, and how will you know? These were things the doctor told me and they really made me think. Our original plan didn't seem so great after all.

I started to question myself. Could I handle her? Will she be safe? Will she put my family at risk? What do I do now? Does the doctor know what's best for her? Do I? Does the guardian team? Am I letting my emotions cloud my judgement? What does my mom want? Can she make an informed sane decision now. . not likely.

Garage Sales & House Issues

So, in the past few weeks, I'll say the end of August through yesterday, September 20th, my mother has decided to have 2 garage sales. Let me preface this by explaining that my mother's home has a basement, that has collected family members things over the last 20+ years, myself included. When I was in college, this served for free storage between moves. Friends of the family and even relatives that have since passed away stored things in this basement. The home my mother lives in was purchased by my father in 1969 for his mother, my grandmother. It has been in our family since, and has served us all well. In September of 2006, my husband and I purchased the house for almost what it was appraised for, thinking it was a good move financially for my mother to not have the house in her name, and to not have to worry about her gambling and sweepstakes habits. My mother had also been taking out loans against the house, and had two mortgages which made her payment way too much for the value of the home. She was having a hard time paying it every month, and I was scared she was going to lose the house. I wanted to make sure my mother had a home. We had been to see an estate lawyer and had my mom change the home over to us and get her will and financial papers in order. This was before the official AD diagnosis too, but I was worried even at that time. We made arrangements through the bank for my mom to pay what she could afford after retirement. This was about $150 short of what my husband and I were going to have to pay for the home, but it was a small price to pay for my mom's well being and future stability. I convinced my husband to go with this plan, and while he didn't agree with me, he did.

So- Garage sale time; when my mom had her money 'taken away' as she says, she decided to cash in on the gold mine of things in the basement. I figured, well that will keep her busy for a while. Marking all those things is going to be very time consuming, and then getting all of the things from the basement to outside would be a weeks job within it self. The guardians told her she could not have a yard sale, because it's illegal in our town to have one without a permit. (The permit costs $100.) My mom said that was stupid and she wasn't paying $100 to sell her own things. I'd have to say I agree with her on that one, but I still didn't want her to get in trouble. She asked for money to have change on hand, and she was told no. She eventually got a neighbor to take her up to get change. The signs were too small, and illegible. She put them on stop signs all over town. My Uncle called to tell me about the signs. The man I paid to check in her called me to tell me how impressed he was at the organization of the yard sale. He said she had everything marked, organized and neat.

The first yard sale didn't yield much of a profit. My mom called to tell me how upset she was. I think she made like $40. I told her it might have something to do with the tiny signs she stuck up all over town (on stops signs no less.) It's amazing she didn't get a ticket. I figured the police were so tired of hearing from her, the last thing they wanted to do is go by and have to talk to her. (She called up to the police station daily to tell them how upset she was.)

The second yard sale, same scenario, same issues, was yesterday. She spent last Wednesday through Friday getting everything ready and out. I told her not to put anything on the signs but 'yard sale' and an arrow. If she did this or not, I don't know, but when I called her yesterday, she said the yard sale went terrible. (Terrible is one of her favorite words lately.) She said no one came and she didn't sell one piece of clothing. What is interesting is that my mom has the ability to keep up with who's stuff sold, add it all up, and keep tally's on everyone's things, but she doesn't understand that people can't read her small signs. AD is a peculiar thing. Luckily no ticket again this time. I think she made $20. She called to tell me that I made $2.50. I'm guessing baby clothes I left from one of my children. I have a good mind to go down there and put most of that stuff up on ebay for her. I know she'd make a lot more, and then just donate whatever doesn't sell to the goodwill, but having the yard sales seems to be keeping her focused, busy and it's giving her something to do so, I'm going to let it be for the time being. When I found out she was going to have another yard sale, I thought about going down to help her, but my husband had to go out of town for the last two weeks, and it financially just wasn't going to work for us right now.

I should note here that I have an Uncle who is not well physically, and cannot move his things out of the basement. I called him yesterday to tell him that he really needs to have someone come get his things because the guardian team is leaning towards my mom going into assisted living. When that day comes, we'll have to rent the house out or sell it.

The idea of selling that house makes my stomach turn. My father bought that house, for my grandmother. Not only did I live in the house, my entire immediate and extended family, including two separate uncles, and my aunt who has since passed away. It was my grandmothers house until my father died, and then we moved in with her and my Aunt. It holds every memory of my grandmother from childhood up until she passed away. I'm not sure I could sell it. Financially however, I'm not sure we can afford to hang onto it. That just complicates my feelings of my mom going into assisted living. I want what is best for her. But what is best for her? She's not going to understand if they move her from her home. She would be devastated. But is sitting in that house alone good for her? Would she be happier around other people? I don't know the answers to these questions.

Let the waiting begin

I'm going to simplify the next few months and say that basically, it was a daily conversation with my mother, trying to convince her that things were not going to change. Trying to get her to come visit, get away from the house, get her mind focused on something positive. None of these tactics worked. She was determined to sit in the house and be miserable. The phone calls continued, daily. . to everyone and anyone that could listen. Neighbors took my mom places, and the social workers tried to get on a schedule for basic necessities. My mom was never happy. If one social worker brought one thing, she wanted something else. Not being able to have any of her own money drove her crazy. She wanted to be able to run up to the store when she wanted and get what she wanted. Having someone else do this for her really upset her. I had employed a man in the community to check on my mother a few times a week in addition to what the social workers were doing. My Uncle also tried to go by once a week. Everyone reported back to me the same thing. . she's upset. Some days were better than others, but overall, the beginning of each phone conversation was something like this.

Hi mom, how are things today? TERRIBLE! she would respond, and then go into her rant about not being able to drive, not having money. I would then change the subject... "Mom, the boys want to see you, do you want to come up next week?" NO! I can't! I have to wait here and see what the heck is going on."

The conversation would go around in a few circles, but basically, she wasn't going to leave the house.It always ended with who she wanted me to call and why, and then she'd add, "I'm the most upset I've been since your father past away." I finally gave in and started buying her puzzles on ebay so she'd have something positive to do in the house. I called her friends and asked them to please go by. I kept up with the tennis schedule, would call and alert her to anything I thought she might want to watch on TV. She seemed to be ahead of me on that, thankfully, and it was good to know she was still keeping up with a few things she enjoyed.

Sometimes, I'd have my boys call her and have them ask her to come visit. She'd tell them politely that she couldn't and then say let me speak to your mom ok?

During this time, one of the guardian team sent an email stating that she really felt like it was time for my mom to go into assisted living. The other guardian team member who is responsible for my mom's well being and health stated that she was 'leaning that way.' It was a hard email for me to read. I really couldn't even grasp the concept that my mom might be moving out of her home into a locked facility at 65 years old. I called her, and pretty much begged her to stop making phone calls all over town. I explained that she was upsetting people, and if she kept it up, they might not let her live in her house anymore. My mom refused this idea, told me that no one can make her move from her home because there is nothing wrong with her. This became my focus for next few weeks, which brings me up to date, exception being two garage sales I'll comment on next entry.

Appeal

So my mom figured out she could 'Appeal' the decision of the courts. All she had to do was to go up to the courthouse and speak with the DA. She did this. She filed out the paperwork, and she was appointed another lawyer to review the case. This made her feel like she had done what she could, and honestly if I was in her position, I may have done the same thing. It's easy to judge I guess, but the reality is, that this means she's going to have to go through this again.

The new lawyer called me. I told her the background, gave her all the phone numbers of family members and friends. I told her what I could to help my mother, but so far, she hasn't called anyone else. I think this is a pretty open and shut case. It's just going to be more painful for my mom to have to go through a trial again.

She doesn't understand why this happened to her, and I don't see any judge giving her back her license or her freedom. Meanwhile, I try to get her to come visit me. Every day I call her. .Mom, come up and see your Grandkids. . mom, the boys miss you. . Mom I miss you. Birthdays roll by, she changes the subject and focuses on her court date. October 6th.

Let the phone calls begin

Let the phone calls begin. Once my mom worked through her sadness, I guess you could say she decided she was going to take this matter into her own hands and fix it. She did everything she could to try and reverse this decision. Lawyers, phone calls, notes, all day long, this became a 24 hour day job for her. She walked up to the courthouse, the police station. She walked to anywhere she thought she could get someone to listen to her.

Let me just say there are some shady lawyers out there too. If they think they can make a dime, they'll take the case, no matter how unethical. I guess everyone knows that, but it just really upset me to have my mom involved with someone that really wasn't looking out for her best interest, but simply wanted her money.

Luckily, because of the financial guardian that was appointed, the new lawyer did not get paid. That ended that 'help.' What was so sad was that he filled her head with false hope though. She had been through enough, and this was the last thing I wanted her to have to go through again. The reality of what had been going on for years with my mom financially had set it. She was in debt. A lot of debt. I had no idea the extent of what she was doing. I knew it was getting bad, but I didn't know how bad.

One of the first things the Financial Guardian did was put the insurance money from the wrecked car into a CD. She then had to try and sort out all the bills and find out what needed to be paid and what didn't. It was a mess, and not only was it a mess, but my mother was not cooperating, because she didn't want anyone else doing 'her' bills. She had never been late paying a bill in her life, and now suddenly things were not getting paid on time. (They weren't getting paid because she literally had no money in her account at the time.)

This was very stressful for her. Stressful enough that she became obsessed with making phone calls all day long, and pretty much spent her days calling all over town trying to get someone. . anyone to listen to her plea for her lost independence.

Everyone in the small town we lived in was talking about my family. The gossip was flying. My phone was ringing. . people were 'concerned'. What had happened up at court? Was my mother really 'that bad??" "We had no idea how 'sick' she really was" Oh we are sooo sorry to hear about your mother. .

It was hard. It still is hard. My mother was always a fiercely private person. She also never gossiped. She was raised to never talk about anyone negatively, and she honored this her entire life. As a young adolescent girl, I can remember her coming into my room during phone conversations and asking me, "Were you there? How would you feel if someone felt that way about you?" "It's much easier to keep your thoughts to yourself, and then no one's feelings get hurt." My mom would have never done or said 90% of what was going on at this time. I felt like I had already lost a big part of her. But here we were, she was the talk of the town. . .and she could have cared less.

Court

So while the driving thing was going on, I had been to visit my mother two times. Time line wise, we are in Spring, April-May of 08. A family member moved in to try and divert my mom's new found sweepstakes habits. This was good for about a week, and then it became very apparent to me that the stress level in the home was 10x that of what it was before this family member moved in, due to external issues.

My mom, was unaware of the stress, but it was obvious to me. At this same time someone made a report to social services about the concern and well being for my mother's safety, not only physically but also financially.

I'm skipping over quite a bit of personal family drama, but the end result was that two social workers came to visit my mother, and felt that she was in deed need of assistance. This started the ball rolling for court. After the social workers concluded their study of my mom's situation, there was a court hearing regarding well being.

I was at this hearing. I'll have to say it was one of the hardest things I've ever had to do. It wasn't so hard sitting there, but emotionally, to hear your mother beg for her independence, and then be denied that independence for reasons she can no longer comprehend, and then act out very irrationally regarding the verdict was very hard to witness. If it wasn't for another family member who went with me I'm not sure I would have made it out of that courtroom with my sanity.

The judge ruled that my mother be declared incompetent, and that the court appoint a guardian or guardian team.

My mom didn't understand the word 'incompetent' but when I explained it to her, she said that was just stupid, because she's 'fine'.
The social workers recommended that I be appointed guardian of my mother. I actually asked my mother's lawyer to appoint an independent guardian team though, for many reasons. I wanted to be involved, but having my mom's well being resting 100% on my shoulders when I didn't live near her was not in her best interest. There were also complications with other family members. I wanted what was best for my mom.

The court decided to appoint a financial guardian, and a health guardian. There is also a social worker assigned to the case. My mother was so outraged at this, she pretty much told everyone off in the courtroom. Not a good day.


When we finally did get her home (which was a feat within itself)I tried to explain to her what happened, but she really didn't understand. Putting myself in her shoes, I could totally understand why she was so angry. I'd be angry too if someone told me that I couldn't drive anymore or handle my finances anymore when I thought I was totally ok. I tried to divert, puzzles, let's go for a drive, let's go out to Dad's grave, (that worked for an hour) let's go out to eat. . .

Nothing worked. She was so upset, she was devastated. I think she cried for 3 days straight.

What to do about Driving

So after another 'fender bender' in which my mom says that the lady that hit her had people with her that lied to the police, I realized that maybe it was time for her to stop driving. I was concerned for her safety, and for everyone else's on the road. I know a lot of people struggle with this. I guess my rule of thumb is, if you would let your own children ride with (person in question) then they are ok to drive. . if you wouldn't it's time to do something about it.

This was not an easy decision for me. But it became crystal clear a few weeks later when I found out another family member had my mother driving him somewhere and she hit something that fell off a truck, and then kept driving the car for about 30 miles until she lost control of it, and hit a guardrail on both sides, breaking the arm of the family member in the car with her.

Now. . there are two sides to this story, but to just get through it, I'll say the problem was not that she didn't understand something fell off a truck and hit her car, the problem was that in her judgment, she didn't STOP the car, she kept driving the damaged car, which forced her to have a second accident and ultimately hurt the other family member, endanger both lives, and total the car.

Now you may ask, why was that other family member letting your mother drive. . but I'd have to tell you that's a whole other blog:)

So, without a car, the driving was not so much an issue anymore. It completely stopped when she went in for her doctors appointment a week later and the doctor would not let her leave and drive home alone when he found out she had gotten herself a rental car.(Yes my mom is crafty that way.) That started what then became a court order for her to take a driving test, which she failed 2/3's of the test, and the sheriff had to come to the house to physically take the license from my mother as she would not hand it over.

What is hard, is that my mom doesn't understand why she can't drive. She's been fiercely independent for her entire life, driving on trips across the country, driving 8 hours back and forth from her sisters house on a whim. She's always driven, and has always been a safe driver. She doesn't understand why 'the sheriff took away her license.'

She cried for weeks, and is still upset and tried to appeal the decision. I'll get to that later.

The bottom line, the car was totaled, the insurance money was diverted, and the sheriff took her license. That's how my mom stopped driving.

Hope

In the last entry, I spoke about how my mom wasn't officially diagnosed with Alzheimer's, which gave me some hope that maybe she wasn't going to decline like Alzheimer patients normally would. I will just go ahead and tell you that this wasn't the case. It really was just a few weeks of me wondering hey, did my mom have a stroke maybe? Is this all it is? Maybe she's just got small blood vessels and that's all the problem really is. . .

It wasn't. It took me about 2 weeks to realize that she was really sick, and I was kidding myself. No matter what 'label' you put on my mother, she wasn't herself. She wasn't ok, and if the doctor thought she had Alzheimer's or Dementia NOS it didn't matter, because her SYMPTOMS were those of Alzheimer's.

Daily phone calls about sweepstakes winnings, finding out she was driving to casino's and having friends and co-workers call me almost daily with concern about my mother really made me confront the truth of what was going on. It was a nice thought, but it was short lived.

Results of the MRI

It took me a while to 'decode' this. But Basically, it's not good. I also just realized my mom has a sinus blockage. That hasn't even ever been addressed.

Here are the results of the MRI Bran Scan for my Mom. I edited some of this for privacy.

MRI Brain.

Comparison: None.

Indication: Alzheimer's disease.

Technique: Multisequential multi planar MRI of the brain without
contrast.

Findings: Advanced volume, greater than expected for age, particularly
involving the temporal and posterior parietal lobes bilaterally.
Scattered periventricular and deep white matter T2 signal abnormalities
consistent with chronic small vessel ischemic disease.

There are no masses, mass effect or midline shift. The gray and white
matter signal and contour is normal. The basal cisterns are visualized
and normal in size and configuration. There is no evidence of diffusion
restriction. The orbits and globes appear normal. Near complete
opacification of the right maxillary sinus with thin low signal internal
septations; the remaining paranasal sinuses are clear.

Impression:
1. Advanced volume loss for patient's age.
2. Chronic small vessel ischemic disease.
3. Right maxillary sinus retention cyst.

When I looked up Temporal Lobe in the brain, here is what I found:

The temporal lobes are parts of the cerebrum that are involved in speech, memory, and hearing. They lie at the sides of the brain, beneath the lateral or Sylvian fissure. Seen in profile, the human brain looks something like a boxing glove. The temporal lobes are where the thumbs would be.

The temporal lobe is involved in auditory processing and is home to the primary auditory cortex. It is also heavily involved in semantics both in speech and vision. The temporal lobe contains the hippocampus and is therefore involved in memory formation as well.

I guess that makes sense huh?

The second part I looked up was the Parietal Lobe. This explains the problems with driving. . .

The parietal lobe integrates sensory information from different modalities, particularly determining spatial sense and navigation. For example, it comprises somatosensory cortex and the dorsal stream of the visual system. This enables regions of the parietal cortex to map objects perceived visually into body coordinate positions.

Now what I wasn't sure of, is did my mom have a stroke? Was this not Alzheimer? There were a few weeks of hope there, that I remember thinking, hey she might not have alzheimers after all, and then the doctor confirmed this. He said to me over the phone, " Your mother has been officially diagnosed with Dementia NOS" or Dementia Not Otherwise Specified [in the DSMIV]

What does that mean exactly?

I found out that it meant they weren't sure exactly what caused her brain to 'shrink' or have so much white matter for her age, but they were sure that it wasn't functioning properly, however there were only certain areas that seemed to be effected, where as when someone has alzheimers, usually the whole brain is effected evenly, so the doctors thought it was Dementia rather than alzhimers technically.

What is the difference? What does that mean for my Mom?

I wasn't sure, but for the time being, it made me feel like maybe there was some hope.

Leading up to getting the Diagnosis

I actually had to go back into my email and look at dates to make sure I have the time line straight. Here is what I found. . .

March of 2007 I first started corresponding with the Doctor at Duke.

Jan of 2008 is when I wrote the doctor concerned that the Aricept was not working properly. I also wrote the doctor about my concerns. Here is an excerpt from that email.

Dear Dr. X,
I am writing to you to let you know that the dose of medicine you currently have my mother on is not working, as her alzheimers is getting much worse. I'm also quite upset that she still has not been formally evaluated for alzheimers. Her sister, her boss, her coworkers, her son, her best friend and my other relatives have all been calling me asking me if she's stopped taking her medicine. I cannot tell you for certain that she IS taking it. I cannot get her to move out here with me, and there isn't much I can do about her situation at the moment.



Since you and I last spoke, she's lost about another 1K to sweepstakes scams, has totalled a car, and is not doing well at all regarding her memory. In the last 6 months, I have seen her decline rapidly. She is really having a hard time with everyday tasks now like cooking and paying bills. I feel like because of her insurance she is 'slipping' through the cracks. She should be properly tested and diagnosed and I need an idea of what sort of care she needs currently, and how I go about geting that.



I noticed at Christmas this year she was very different personality wise. She's really lost interest in everything she once loved to do. Can you please have her come in and see you again. Her insurance will be changing to Medicare since she turned 65. I'd like to have some extensive testing done, and I need to know if you have any alternative recommendations for her. (I've been reading that Omega-3 is supposed to help?)

That pretty much explains how I felt at that time.

Here is the response I got to that email 1 day later.
Names have been X'd out to protect privacy.

Dear Ms. XXXX,

I am sorry that your mother continues to have the changes you describe above. Unfortunately, we scheduled, and rescheduled , follow up visits in October, which she missed. I would certainly like to reevaluate her, and probably start an additional medicine at that time. XXXX XXXX (XXX-XXX-XXXX) can help expedite a return appointment. As you know, [your mom] has had brain imaging (CT) and extensive metabolic studies. We have also tried to get formal neuropsych testing done on two occasions, but these appts were not kept. She does need follow up care with Dr.[primary physician], and with me if she requests. I know this is difficult for you and I am here to help as best I can.

Sincerely,
xxxxx xxxxx, MD

I remember my surprise to find out that she was not keeping appointments. When I asked her about not going to these appointments, she said that her insurance would not pay, and that she had to wait until she turned 65. I called her insurance, and they denied that this was true, but basically at this point, it didn't matter, because she was 65 already anyway, and she now had Medicare.


Well as it turns out, Duke did not have any appointments until April. By the time she actually got around to scheduling her appointment (She had to wait until her medicare kicked in, which was in March of 08,) it was April before she could get in to get her tests done. She had another appointment in May which was the big one. She was there all day and was tested all day. In June, I was in contact with the Dr. about her test results.

All I can remember about this time is feeling lost. Feeling helpless. . Knowing what was to come, but trying to brace myself for the reality of it all. Those were a very hard few months for me, and for my mom.

The First Signs

So I guess all those little things you notice start to add up. For me, it wasn't any 'one' thing, it was the combination of all the things I was starting to notice. Forgetting special memories from my childhood, forgetting where she parked. . the food started not tasting quite the same. I could go on, but you get the idea. It was a combination of things.

I knew. I knew without a doubt, but now my task would be to get my mom into a doctor and get her on some meds ASAP. Everything I kept reading was saying that early detection was the key. I knew I could figure this out, I just needed a way to get her to see the doctor.

I have a good friend from high school that helped me get my mom into Duke Memory Clinic. It took me 3 attempts and 11 months to actually get her to go, to be tested and not to leave. The first time was just an orientation. The second time she was in the middle of extensive tests when the insurance lady came in and told her that her insurance would not pay. My mom, thinking she was fine anyway got up and walked out in the middle of the test. About 20 phone calls later, 2 cancelled appointments later (due to insurance problems once again) my mom finally got into see a doctor and was officially tested. This was in 2007.

The prognosis? Lets put her on Aricept and see how it goes. "She's got some memory problems, but I won't have an official diagnosis until we get a MRI and some further extensive testing."

And so the battle begins.

History of Mom Part II, 40's and 50's.

So, after researching this dreadful disease, I discussed all of my findings with my mother. I said, "Mom, I'm pretty worried, you know they say Alzheimer's skips every generation, and since your mom didn't have it, I wonder if you or I will have it." She said she was worried too, and once told me if she ever didn't know who I was it was time for her to leave this earth. Ironically we aren't at that stage yet, but I know one day we will be.

Here is an excerpt from a study about the genetics of Alzheimers

Advances in genetic research are also helping to unlock some of Alzheimer's mysteries. So far, researchers have discovered four genes that can lead to the disease, including two that Dr. Peter St George-Hyslop and his team at the University of Toronto identified within a two-month period in 1995. The genes are responsible for a rare form of the disease called Familial Autosomal Dominant Alzheimer's. FAD, which is clearly passed from one generation to the next, accounts for five to 10 per cent of Alzheimer's cases. While people with FAD may develop symptoms as young as 30, the disease appears similar to the more common, so-called sporadic Alzheimer's in every other way. Thus by studying the rare form, says St George-Hyslop, director of the university's Centre for Research in Neurodegenerative Diseases, scientists hope to learn more about Alzheimer's in general. Meanwhile, the hunt is on to discover other genes linked to the disease. "I suspect in the next few years," says St George-Hyslop, "we will know a lot more about the genetics."

Source: Maclean's March 13, 2000

Author BARBARA WICKENS

During my mom's 40's and 50's she continued to work and have a pretty fulfilling life. She never did marry, and never really even dated, stating that she would never be able to meet another man as good as my father. When my mom was about 59 and a half, I guess you could say I started to notice little things. I had moved across the country shortly before, and I spoke with my mother on the phone almost daily. The first thing we noticed is that my mom had become very 'jumpy.' The only way to describe this is to say that she was anxious. If someone walked up behind her and she couldn't hear them well, she'd scream or yell. Now, of course, everyone does this sometimes, but my mom would do it 2-3 times a day. I look back now and see this as some sort of sign. I know science isn't that far along, but I wonder how many other caregivers or children of parents with Alzheimer's have noticed this trait. It would be an interesting study if nothing else. This odd quirk of my mothers got so bad that at work, people would have to say "Here we come, we are coming down the hall. .don't be scared!" so that she wouldn't jump when people got into her office at work.

Another thing I noticed is that mom seemed to not be as involved in things she once was. Now, she still did most of her hobbies, but the lack of enthusiasm become more evident each year. It got to the point that one year, I gave her a book for Christmas and her response was, "oh I really don't read much anymore." This was the response coming from a woman who read 1-2 books a week her entire life.

I also remember friends telling me that she was having a hard time at work. She seemed very stressed when she had to learn something new. She kept telling everyone she was getting 'too old for this.'

Holidays didn't seem as important to her. She decided in 2004 that she wasn't going to put a tree up this year, even though I was bringing my 5 year old to her house for Christmas. When I tried to explain how important it was to have a tree, she didn't seem to understand. Maybe it was that she couldn't empathize? This was not characteristic of my mother. She always took such great care in making sure the holidays were memorable occasions when I was growing up. She would spend hours cooking old family recipes and would always have the house all decorated when I came to visit, even when I didn't have children. I actually bought her a tree that year, and she did put it up, but it seemed more out of guilt than out of understanding?

In 2005, she became wrapped up in sweepstakes scams. I won't go into all the details but I will say that it became very apparent to me by 2005 that there was something wrong with my mother. I begged her to go to the doctor. I pleaded. . I called. . I researched. . it didn't make any difference. She thought she was fine. She became very involved in gambling. Suddenly going to the casino's wasn't just a fun once a year activity, but it became more of a passion. She started going every chance she could. She would drive herself, spend the night playing and drive back all in the same 24 hour period. My mother grew up going to church 4 times a week. Gambling was not something she ever did. I didn't have a problem with it at first, but eventually it became apparent that it was more than just a hobby.

Another issue was that a family member was abusing drugs, and my mother refused to not only acknowledge this, but to believe it. It didn't matter how much proof you showed her, she for some reason couldn't comprehend that this person, whom she loved could actually be taking drugs.

After all of these odd things going on, along with the fact that my mom was starting to substitute words like boat for ship, or lemon for lime, I felt it was time to go to the doctor.

I bought plane tickets and flew to see my mom. I spent the week with her, and drove her to doctors appointments. I finally got her in to see her Primary Care Physician only to be told that "If your mother doesn't want to be on medication for Alzheimers, I can't make her take it." She says she's fine and she seems to be ok. . .

I could have strangled that doctor. I still to this day hold a grudge. I know you are supposed to forgive, but had that doctor listened to me, maybe my mother wouldn't be where she is now.

She wasn't 'ok.'