One Year

It's been a year. Still miss her every single day. Not ready to post here yet.

Sept. 15th

My mom passed away on Sept. 15th. It was a very traumatic and long journey. I'm glad she's at peace, but I miss her very much. It's still too hard for me to write about what happened, but maybe in time I'll be able to.

What has happened lately & Click here for the link to the Alzheimers Project Page

Well it's been a very long time since I could write. I guess the worst part about this disease is that it totally consumes you. My mom has been to my home on several visits since I last posted. She's declined quite a bit. We had a day where the guardian team tried to put her into a nursing home and she 'escaped' 3 separate times. It was quite an ordeal, and one of the worst days of my life.

But that's all in the past, and now we are trying to move forward. My mom is still hung up on her sweepstakes scams, and still wants to go to the casino constantly, but other than that, she's doing ok. It's been a long year. One I don't soon want to repeat, but I sure wouldn't miss the time I've had with my mom for anything in the world either.

After Christmas this year, my husband was laid off. Since then we've been trying to get by. It looks like we are going to have to move back to the west coast to make ends meet. This means I'll be away from my mother once again, at a very crucial time in this disease. I have lost sleep over this many a night, but honestly, I have no choice in the matter. I just have to trust in God that this is the path I'm supposed to take, because at the moment, I see no alternative. I am going to wrap up this blog for now with a link to a documentary that my mom was actually invited to be in by HBO.

Please help me celebrate mother's day this year by watching this documentary with me.

I may come back at some point and write again, but right now, it's simply too painful, and I'm just trying to get by day by day. I'm wrapping up this blog with a positive image of hope and dreams for a better future for those with Alzheimers.

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 :)