She used to worry...

...that she would get to a point where nobody would be able to stand being around her.

Dad has his own dragons to slay. He's with Mom 24/7/365. When he can't handle things any longer he goes to the garage or the backyard to putter. To relieve his frustrations he waits until we are alone to roll his eyes and vent. I know he loves Mom or he wouldn't still be there with her. He feels a strong commitment to being there. It might have something to do with the day I said, "She always stood by you, Dad. It wasn't always easy. You need to stand by her, now. She needs you to do that, now."

But I know that it's hard for him to be there all the time, to hear her say the same thing a dozen times...What time is it? What day is it? What time is it? And it used to be hard to tell when something she said was really so or a story. Now the stories are obvious. Dad gets upset with her. The rest of us -- who don't live there 24/7/365 -- just go along with what she says without getting the least bit perturbed. We can walk away, leave them in the safety of their four walls, and not have to go back for a day, a weekend, or a week.

Awhile back I asked Dad to get the motorhome running so we can go camping. Mom keeps saying she'd like to go camping. He told me a couple of days ago that he's almost got things ready so Mom and I can go camping. If I can manage it, we will go camping on weekends until the weather won't permit it any longer, because that's what Mom wants and it seems the very least I can do when her days and years are waning. Waiting another year til next spring may be too long. We've spent too long already thinking, "Someday..." Someday never comes.

Dad deserves time off for being there all the time. He needs to be able to kick back and put his feet up and just be without being on duty constantly to prevent fires on top of the stove when she forgets to shut off burners. And clean out things that Mom won't tend to and gets mad at him when she sees him working around the house.

I'm returning to the college classroom to complete my BA in English...minor in writing...Honors College. I'm trying to finish in a year so my parents can see one of their children graduate from college...with honors. They have always been there, always done their best for their children. I want them to see this.

She's looking for hope.

Stormy weather

Stormy weather hit our town and everyplace else across the state yesterday and motivated its way over Pennsylvania, Maryland, Delaware and D.C. And lots of other places across the country. The humidity and heat is record-shattering, and one can't help the global warming/greenhouse effect issues coming to mind.

Mom and Dad are staying inside as much as they can. But the steamy windows bother Dad. The central air was on cooling the inside of the house, but the heat outside was so intense, it created vapors on the windows. And they got into a bickering match about it. It's no big deal if the windows steam up. But to Dad it was.

I bought Omega 3 Fish Oil a couple of weeks ago and gave a bottle of it to Mom. If the Alzheimer's research people are doing a clinical trial for this, there might be something to it. It can't hurt. Might help. Mom started to take it immediately, as did I. But remembering to take the time for gulping down these horsepills is an issue for me. It's not so much forgetting as taking the time. Slow down for 30 seconds and take it. What's 30 seconds? Half a minute.

And it's all like chasing the wind. Why am I in a hurry going nowhere?

Mom is always happy to see me when I walk in the door. I need to walk in the door more often. Dad's happy to see me too. He told me he doesn't know how he'd handle all this without me. Well, someone else would help him...maybe. I don't know. I am concerned how I'm going to go to college 12-15 hours a semester for the next 1-2 years and help him and Mom, too. But my brother said I have to live my life for me, so I will do this. Educate a woman and you educate a family.

Disappointing meeting

I'm writing an essay about the meeting in Canfield. I thought we were going to be able to get Mom into a clinical trial for one of the two Alzheimer's medications that are in the news. The clinical trials on Flurizan and Alzemed are closed. There is no recruiting going on for them. A man asked, "When will the medications be available?" The two researchers, one from the University Memory and Aging Center at Case Western Reserve and the other from Alzheimer Research Center at the University of Pittsburgh, concurred that it will be at least three or four years. The man spoke so everyone could hear, "That's not soon enough."

When we started out, I thought I had to be at my mother's side from that very moment. She took the news so hard. But she and Dad insisted that it was not the time. They didn't expect me to be there every day because I have a family and home of my own to take care of. And so I backed off. It took a lot for me to back off. But, I did. Now I'm at the juncture in the road where I think it's time for me to be there more. And that's OK.

I was going to look for a job. We need a new kitchen range/oven and refrigerator. I need a car. I'm thinking of asking Mom how upset would she be if I used her car for a while. That would take care of that need. I think I need to take my computer to work at their house. It would make things easier for Dad if I'm around. Everything else has settled down pretty much, I think. DD4 will move to the college campus next month. DD3 is either working, with her fiance, or friends or her sisters so I think it's OK now for me to be at Mom & Dad's.

It's not that I want to stop living my life to take care of them. It's that I need to blend their needs into my routine. I need to be there for them because someday I will be the needy one and I hope that there will be someone who will want to take care of me.

Clinical trials

Mom and Dad were excited about something they read in the June issue of AARP Bulletin. The name of the article: Closing in on Alzheimer's. The drug Flurizan is the buzz word, a very promising buzz word, in this article. But a couple of days ago an Alzheimer's newsletter arrived in postal mail. I didn't open it until yesterday afternoon. And now I'm excited.

When Mom showed me that AARP article, I brought it home, called the doctor's office and asked about it. Mom had said, "I want to get in on the clinical trials." Gina checked with the local pharmacy but Flurizan is not on the market yet. She said to bring a copy of the article down to the office and they would look into it.

Then this newsletter came in yesterday. There are clinical trials open in our area. There will be a meeting in Canfield about these clinicals and the meds in them. I'm going to make the reservations for us to go. I think Mom and Dad both will be excited, too.

To find clinical trials in your area, call 800-439-4380. This government agency, Alzheimer's Disease Education and Referral Center, will help you find studies and and answer questions about them. Online you can find information at www.nia.nih.gov/Alzheimer's or www.nia.nih.gov/Alzheimers/Researchinformation/ClinicalTrials. The Alzheimer's Association is online at ww.alz.org.

Week's End

Dad has physical therapy today. He's wrapping up three weeks of it for his stiff neck. Mom has her mammogram and some blood work done today before Dad goes to physical therapy. We'll drop him off and go to Wal-Mart to run around while he's doing his thing.

I'm getting ready to paint their bathroom. I was going to do it this weekend but the 4th of July celebration was postponed to tomorrow because there were thunderstorms forecast on the 4th. In fact, we were under a tornado warning until 9 p.m.

There isn't much more to say about Mom and Alzheimer's today. She still is interested in getting into a clinical trial of AD medications showing promise. Like Flurizan, which has reportedly made a difference in AD patients...restoring quality of life. But even that won't give her back what she had before the stroke. She wants to drive, but I told her to drive she has to be able to use her right leg without lifting it into and out of the car. I know my mother. She'll work at strengthening that leg. I don't know if she can realistically do it, but she'll try hard because she wants to drive again.

Thinking

I can see that the wheels still turn in my mother's brain. When she looks at me and I look back into her eyes I see that she is still fighting to keep her brain function. She still crochets, though the patterns are very simple ones...like the basic granny square. She still works the sudoku puzzles even if they take her much of the day and never are completed. She still reads articles about Alzheimer's hoping that some breaking something will announce a cure or a medication that will give her recovery of what she has lost...or to hold onto what she has still.

AARP Bulletin, June edition, included an article entitled "Closing in on Alzheimer's." It speaks of a new medication MPC-7869, aka Flurizan. For some patients who participated/are participating in the clinical trials, the medication gave them back their memories and quality of life.

"I want to be in on the clinical trials," Mom said. "It sounds like what I've been looking for. I want to try it."

I called the doctor's office to ask about it. The nurse there called the local pharmacy. It isn't on the market yet, but if I take the article in the doctor's staff will try to find out more about it. So, I made a copy of the article and walked it to the office in high heat and humidity, a 15 minute walk from my house. The office was closed...early. I carried the article back home and it's still on top of the entertainment center because the demands are many and the time is limited. But I've added it to my to do list for today.

Notes on a steamy summer day

It was 94 degrees today, and has been like this for most of the month of June. We rely on A/C to keep us comfortable. A song by The Eagles or was it Don Henley...The heat is on...

When we returned from North Carolina Mom had the June 2007 issue of AARP Bulletin in which there is an article about "Closing in on Alzheimer's." There have been clinical trials for a new medication, MPC-7869 aka Flurizan. It seems to be giving back patient memories, improving quality of life. And Mom wants in on it.

I called the doctor's office. I figure if anyone will know, it will be Dr. G. The nurse said she'd look into it. She called the pharmacist and there was no listing for it. Gina asked me to bring the article to the office. I printed it out and walked it to the office, since I needed the exercise. But the office was closed when I got there, locked up tight. And it was only 4:14 on a day that they should have been open until 4:30. Oh, well.

Tomorrow is another day. Dad asked me to go up to make sure Mom gets her medicine and breakfast in the morning and on Thursday morning while he goes for physical therapy. I'll take the article with me and drop it off.

And we'll see if there is some magical something that will help Mom keep her memories until the day she dies.