Monday, September 29, 2008

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.

Friday, September 26, 2008

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.


*************************************************************************************
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.

Thursday, September 25, 2008

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.

Monday, September 22, 2008

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.

Sunday, September 21, 2008

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.

Friday, September 19, 2008

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.

Thursday, September 18, 2008

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.

Wednesday, September 17, 2008

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.

Tuesday, September 16, 2008

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.'

History of Mom



My mom is beautiful. Smart, witty and full of life. She attended college for a few years, but quit going after she met the love of her life. She married my father in 1965. They traveled around America, my mom following my father wherever his job took him. She told me many times she was excited to travel. After growing up on an Island her whole life, being able to explore the US was one of her dreams. She didn't mind moving every year, and loved that she got to redecorate a new home each time.

After many years of moving and marriage, my parents were finally ready for a child. My mom used to tell me that my dad wanted a boy, but instead he got me, and made me one tough little girl! When I look back now, I think maybe he was preparing me for life's roller coaster early.

Mom was one of those people who was outgoing and loved to get involved. When I was young, she was in a social sorority and had lots of girlfriends. They used to do all sorts of fundraisers and banquets. She also took care of our family. Every whim was attended to. My homework was always finished on time, school projects were always done. Dinner included all four food groups, and vacations were well planned out in advance. I guess you could say my Mom was the captain of our little family ship.

When not attending to our family, my mom liked doing crossword puzzles with her sister and best friends. They used to sit for hours and work those things out, or maybe play a game of scrabble. I never liked playing scrabble with her because I could never win. She also loved playing cards, especially cribbage. She got to the point where I couldn't beat her at that either. It was a pretty good life. I have to say I was very blessed in my childhood. We had everything we needed and even those things we wanted. Many of my best memories of my mom were spent decorating the house for Christmas with her, or spending summer nights out on our boat on the lake. I knew I was loved. What more could a kid ask for?

It wasn't until 1985 that things dramatically changed for my mother. My father, who was at the ripe age of 45 died suddenly and unexpectedly from a massive heart attack while on a business trip. I can only remember my mom throwing up for about a week when I think back to that awful time. I can remember her being in her room for days on end. I remember her grief, her tears.

She used to tell me that if it wasn't for my brother and I, she would have never made it through that difficult time. After that, things did become harder for her. She went from being a stay at home mom to a working single mother of 2. We moved to a new city, and a new culture. Not only did my mom have to support our family now, she also had to figure out how to keep us all from going crazy with grief over my father. I think she did the best she could.

She read books a lot. And I mean like 1-2 books a week. The only TV show she ever watched was Johnny Carson, and when ole Johnny went off the air, that was it for her and TV. She threw herself into more books and puzzles. After finding a full time job though, that didn't leave much time for her to do all those things she enjoyed. She still found time to spend with friends and with us, but it was never the same.

Fast forward to the early 1990's. I guess you could say that is the very first time I remember my mother a little 'off'. Now you could say, oh, she was only in her 40's. How could anyone notice? Well I did. I remember her saying that she was getting old, and she couldn't remember 'all those things' anymore. I was disturbed by this, because it was during this time that I became very involved in my family history. I was constantly asking questions about her mother, her grandmother. .

It was then that I remember her saying, "Oh Granny had Alzheimer's." It was an awful disease, she didn't even know who we were when she died, and I didn't want to take you and your brother because I didn't want it to upset you. You were both so little.

I researched Alzheimer's. Just what is it? What is this disease that plagued my family? Had anyone else in my family died from it? How does someone get this disease? Is it hereditary?

These were all questions I wanted to know the answers to. It became very important to me to find out about my family history. My mom helped where she could, but she always like to say that "Family History was more of your Dad's thing." I wonder if maybe she couldn't remember things even that far back.

History


So the History-

This is Mattie C. Waterfield, the young, vibrant woman she once was, way before I ever had the pleasure of meeting her.

I'll start back to my first introduction to Alzheimer's. That was in 1977. I was very young. . but I have some fond memories of my Great Grandmother on my mothers side. One of the best, that I'll share with you all is that she always gave me vanilla wafers. I remember her living out back in a house my grandfather had built especially for her. My Grandfather and Grandmother took care of her for as long as they could, but eventually, she was too much to handle and she had to be admitted into a nursing home.

We went to visit her several times. I remember those visits because of two things; the first was the smell of the place. It smelled like urine. Now, it wasn't a bad place, it was just that the person who stayed in the bed next to my Great Grandmother had an issue, and as a child, those sorts of things catch your attention. The second memory was that my Grandmother didn't know who I was. This upset me, because it didn't make sense to me.

I have other memories of her, but I'm going to skip ahead a bit. My Great Grandmother died shortly after being admitted into that nursing home. As a child, my parents did not tell me when she died, but I remember being very upset when I found out later that she had passed away. I was upset that I didn't get to go to the funeral, and upset that I wasn't told. I was young, but I was very aware even then of how awful a disease this must have been- to die not knowing who you are. I remember my mother telling me that she died from Dementia. At that time, they called it that more than Alzheimer's, but I'm fairly certain thinking back that she did have what I'll refer to from here on out as AD. Her death was the first family death I experienced in my life, and one that really affected me more than I realized at the time.

Prelude


I've spent most of the day today deciding how I'm going to help myself through this illness. I looked up support groups, looked up counselors, but in the end, I decided that I really just need a voice. I need to be heard, I need to get this out, off my chest.
What better way to do that then to just write. I am at the computer daily anyhow, and it's an easy way to let those around me keep in touch, while maybe connecting with someone else going through the same battle.
So you if you are wondering, it's not me that has Alzheimer's, it's my mom.
My story will begin with some background and history, and then I'll catch everyone up to date in the next few days. I have vowed to myself to try to write each day, throughout this journey. Who knows, maybe one day I'll appreciate this record of what I went through.