Diagnosis Confirmation...Sigh

Hi everyone! Today was our big day at the Memory Clinic. First of all, thank you Dory SO MUCH for being there with us today. It was a huge comfort. The appointment went something like this....Dr. Hirato met with us collectively in the beginning to ask us questions and find out what we thought was going on. What can and can't Dave do, when did it start, things like that. Then Dr. Hirato kicked Dory and I out and met with Dave alone for well over an hour. He gave him a standardized mental exam, physical exam, and written/visual spacial exam. This is the same exam Dr. Shtrahman gives him every 3 months, just expanded. Dave has been scoring between 22-24 points out of 30 for a year. Today he scored 15. This was a huge blow. I have seen the progression of the disease, but I somehow always find a way in my mind to justify what I'm seeing. We then met with Dr. Hirota and Dr. Mario Mendez, who is the Chair of the Neurology Department at UCLA. Dr Mendez is....well...quirky, I guess you could say. He asked some questions, and then excused himself (for what, I didn't know at the time). He came back in a few and asked what diagnosis, if any, DR. Shtrahman had given us. I explained that he told us Dave had Dementia, probably Alzheimers. Dr Mendez the confirmed this diagnosis, telling us that Dave does indeed have Early Onset Alzheimer's Disease (EOAD) and that he was at a moderate stage. When I pushed him as to what stage he was in (1-7, 7 being end stage) he sighed and said he didn't really hold much credibility in the grading scale of the disease, every case is different, but if he had to make a guess, solid 4 leaning to 5, maybe a bit higher. Here comes that fucking truck that keeps running me over! Damn! Anyway, at least we have a strong idea of what's going on, and what's to come. Dave is now going on Namenda (it's like Aricept without the tummy discomfort) Dr. Mendez told us he is conducting a research project for the New England Journal of Medicine, trying to find a correlation of combat related issues and the high rate of diagnosis of EOAD in Viet Nam Vets. (fyi, anyone diagnosed with AD before the age of 65 is considered "early onset") We agreed to participate, and signed a mountain of paperwork involving that. He also wants to have Dave have a lumbar puncture (spinal tap) and send it back East to see if there are any toxins in the spinal fluid that could help explain the early onset. I'm rambling now, so I am going to sign off. Will try and collect my thoughts, pull myself out from under the truck, and get back with you when I'm more serene. Oh, by the way, for those of you who have said you can't post a comment, try again, I did some customizing of the page. At the bottom of the comment box, there is a pull down that says "Comment As", pull down and choose "anonymous" Thanks for listening, and I love you all! :)

Dave's Big Day

Well, tomorrow morning we head down to West LA to the Neurological Memory Clinic for Dave's evaluation. As I explained before, he will be assessed by a team of Neurologists who are Dementia Specialists. We hit the road at 6:30 am for the hour and a half drive. He's nervous, but I keep explaining it's not a pass/fail thing. He understands it's not going to change his AD dx, but I don't think he quite knows what it will do. I have to be honest....I'm not sure either, but we'll find out tomorrow. I know that they are evaluating him for participation in future clinical trials, and this is crucial. Believe me when I tell you I have done exhaustive research on AD. I've spent countless hours doing this research, and I think I'm really prepared to ask some hard questions tomorrow. Over the 34 years we've been together, we have amassed quite a collection of favorite poems, stories and sayings. (Dave's mom Marge used to do the same thing, and I remember how much I enjoyed looking through her collection with her). I was looking through our huge box of clippings (I know, I know, I will get them on a disc when I have time!) and I wanted to find something appropriate for tomorrow. I hope that you keep us in your prayers, I love you all! :) This is just perfect: It comes from a beautiful poem by Leonard Cohen ~

Ring the bells that still can ring. Forget your perfect offering. There is a crack in everything. That is how the light gets in.

Think I'll throw a pity party

Well, first of all, this is the 1st three day weekend I've had in almost a year, so for that, I'm thankful. And that's pretty much where it stops. Dave has had a rough couple of days. Saturday was so nice with the long bike ride to the Marina and all. Sunday he was sleepy most of the day, so he slept quite a bit. Monday was awful. He woke up before me, and as usual, made the coffee. He didn't put the coffee in the dealy, so he was drinking hot water and didn't even realize it. I got up and saw what had happened, so I made another pot with coffee, and prayed he didn't see, so I wouldn't have to tell him what he did. He didn't notice. As is our usual Monday routine, we went to the grocery store and shopped for the week. He shuffled along behind me, and then disappeared. I didn't know where he went! I kept shopping thinking he would catch up, but he didn't. I went to the restroom, and there he was, just standing there. Do you have to go? I asked. Nope, just have gas, he said. Apparently he was just standing there farting....I don't know. The rest of the day was uneventful. I did some chores that I have been putting off since we moved here a year and a half ago. We didn't get invited to any Memorial Day BBQ's this year. Our kids had other plans. Most of you who read this blog live out of town, but may I pose a question? Do any of you think we're not being invited to things because of Dave's AD? It's getting pretty lonely here, but I'm not sure if that's the reason. I guess I have to assume it is, since the invites stopped after the dx. Guess I'm just having a little pity party for myself. Sorry. Poor us. Anyway, we're bbq-ing like it's a holiday, so I better sign off. Thanks for listeneing. Hope you all had a great Holiday weekend. See ya next time in the blogosphere! Love you all! :)

Today I rode a bike

Big deal, right? Right! A dear co-worker (whose name may or may not be Ronda) very generously donated not 1 but 2 almost brand new bikes to Dave and I several weeks ago. (I have to say once again that people's generosity astounds me at times). Dave has been riding his daily, and I have been planning to ride mine daily. Well, today is the first Saturday I have had off since September '08, and I decided that a spin around the complex was in order. I am SO out of shape I doubted I could even do that. Well let me tell you, 2 hours and 5 miles later, we pulled back into the garage. We actually rode all the way to the Stonebridge Marina, and then followed all the bike trails thru the Marina. It was a stunning ride on a glorious day! We had so much fun, it was "just like the old days". Dave was having a blast being my tour guide (he does this ride regularly), and we stopped for a few minutes and watched the boats come in and out thru the channel. I now feel like a big piece of rubber, but I think I'll survive to do it another day. Now that my secret's out (I can actually ride for more than 5 minutes), Dave is already planning our next ride, to Hueneme Beach. I better be careful or I may actually loose a little weight and get back into shape. How horrible will that be!! Anyway, that's my blog and I'm sticking to it! I'm off to pick up the little boys (Chris & Dylan) for their last Saturday night with us. Man, that 3 months went fast! See ya all in the blogoshphere! Bye for now :)

A Temporary Olive Branch

Our beautiful Joe was to make his First Holy Communion this past Sunday. I had been looking forward to it for months, but in light of what's transpired between Steve and I, Dave and I decided not to attend. Quite frankly, I was heart broken. Out of the blue Friday night, Steve called and asked us to please attend, because it was important to Joe that we be there (Dave is his God Father, after all). Steve even offered to stay home if it would make things easier for us. My first thought was, oh my God! maybe he isn't going to keep the kids from us! After some thought, we agreed to attend, and I was delighted. Long story short, it was a beautiful Mass, everyone got along, and Joe did spectacular. As soon as we woke up Sunday morning, I knew Dave wasn't going to have a good day. He has developed a new symptom in the last few days, his hands shake. I mean, they SHAKE. The weird thing is, they don't do it all the time, and he doesn't seem to notice. After Mass we went to Joe's favorite Donut Shop for a celebration. Leave it to Joe to pick a donut shop. By the time we got home, Dave was crabby, so off for a nap I sent him. I called Steve while Dave slept and thanked him for the olive branch he extended, and we talked for a few minutes. Now, if he would just take his meds we could have a relationship, but I don't hold my breath. Any who, that's the long and the short of it. I'm looking forward to our trip to the Memory Clinic next week. I am armed with a list of questions, and will mention the hands shaking thing. Take care, and I'll be in touch. Thanks for being there! :)

Another Beautiful Poem

My wonderful and talented friend Divvi emailed this to me this morning, and I would love to share it with you all. I am truly blessed to have some very special, caring people in my life. You know who you are! :)

"The "forgettting disease" that robs the mind,
Everforgetful of ties that bind."

"Hearts are shattered,
And bodies are broken,
We try not to notice, no words are spoken."

"Memories are vague,
our lives are lost,
We must move forward,
At a very precious cost."

"The prayers we ask are always the same,
for each of us holds a loved one's name."

"When the time draws near,
and we must let go,
We pray our loved ones have no fear."

"Many will be called before our own,
Our love goes with them on their journey back home.."

Devastation

I can't blog about the usual today, as I am dealing with another issue that has been coming to a head over the past few days. That issue is Steve. Years and years of psych facilities, and numerous drug rehabs, and it just doesn't get any better. As some of you know, but most probably don't, Steve was diagnosed with schizophrenia at age 15. He has refused treatment all these years, and is, once again, spiraling out of control, and as usual, taking us all with him. After an entire week of verbal attacks and abuse by Steve, I have decided it is time to close the door. That means I am choosing to walk away from not only Steve, but my grandkids as well, as he will withhold them from me. This is a choice that I did not make lightly. It has been 15 years in the making, and it's time. All of Steve's rage has always been directed at me, but his new salvo of rage has been devastating. I need to take a few days to decompress and grieve the loss of my son and grandkids. At some point in the future, I may be able to explain what has gone on recently, but for now I simply can not. I'll be back in the blogosphere when I am able. Until then, I love you all.

A-ha moment Tuesday

I had great news this morning. When we were at Dr. Shtrahman's (Dave's neuro) last Monday, he had an a-ha moment. There's several things that he does every three months, and one is what they call a mme test. It stands for mini-mental exam. He asks Dave 10 questions designed to use all parts of the brain, and then scores him out of a possible 30. Dave consistantly scores 19-20. He also spends alot of time testing his reflexes, which Dave hates. Everytime he does the reflex testing, he brings in another neuro to do the same test. For the past year, I thought this was sop (standard operating procedure). Well, this past Monday, the head of Neurology happened to be there, and he came in and did the second reflex test. Half way thru the test, he looked at Dr. Shtrahman and said "yes, there it is". (another a-ha moment!) Now for the past year, Dr. Shtrahman has seen something in the reflexes that he couldn't get anyone else to see, until Monday. They went out into the hallway, and when they came back in, they explained that neither one of them specialize in dementia, so because of what they saw, they asked if we would consider sending Dave to the UCLA Memory Clinic so he can be evaluated by a team of neuros who specialize un dementia. Of course, we said yes. Dr. Shtrahaman was going to start Dave on Namenda on Monday (it's a cousin to Aricept, which Dave can't take), but after consulting, they decided to wait until he's evaluated at the Memory Clinic. Now, on to the good news....the Memory Clinic called this morning, and Dave is being seen on May 28th. Keep in mind this won't change the diagnosis, but it could open Dave up to participate in some Clinical Trials. For those of us dealing with this horrible disease, that's the best possible news. I'm trying so hard to stay positive. I don't get much support from family and friends, but I know that unless people are dealing with this, they don't know the struggles. I didn't say that to be deragatory in any way, please know that. I understand. No worries at this point, I have my cherished support group. God Bless them each and every day. The last week has been filled with a-ha moments, both good and bad. We continue to struggle forward, one step at a time. Keep coming back, you all are so important to me. See ya in the blogosphere tomorrow!

Just another manic Monday

Hi everyone. It's Monday evening, and all is well. I belong to a terrific AlzSpouse support group, and one of my dear friends there, Susan Carr, wrote this and emailed it to me today. It will be my Monday post, enough said.

DON'T DIE

ALZHEIMERS DISEASE SUCKS THE LIFE OUT OF LIFE.
IT TAKES AWAY ALL YOU CHERISHED MOST
FRIENDS GET TIRED OF THE DEPRESSED .
CHILDREN MOVE AWAY TO FORGET.
THOSE CHERISHED MOST IN YOUR LIFE BECOME
ABSENT.
THEY DON'T KNOW WHAT TO DO, WHAT TO SAY,
SO THEY SAY NOTHING
THERE'S ENOUGH CRAP IN EVERYONES DAY, WHO NEEDS MORE.
DAYS ARE SILENT, NIGHTS ARE RESTLESS, A LOVED ONE SLIPS AWAY, YOU CONTINUE TO SAY THE LONG GOODBYE.
ALONE, NO DINNERS OUT, NO VISITS, NO FRIENDS.
ANYONE FOR COFFEE, NO, SOMEONES DYING. WE ARE SHRINKING, ONLY THE DOCTOR SEES US, WE ARE BECOMING INVISIBLE. TAKE PILLS, DRINK WINE, WALK, ROCK, WRAP YOURSELVES AROUND EACH OTHER, AND CRY. WE ARE ALONE, AS WE DIE. ONE SITS AND WATCHES THE OTHER SLEEP, SLIP AWAY DAY BY DAY. HELP GET WASHED, HELP GET PILLS, HELP WALK, HELP GET DRESSED. COMB HAIR KISS FOREHEAD, HOW NICE IT WOULD BE FOR MY FOREHEAD TO BE KISSED, FOR MY HAIR TO BE BRUSHED, FOR A WORD OF LOVE, OF SUPPORT
FOR SOMEONE, ANYONE, NOT TO BE AFRAID TO ASK HOW ARE YOU? DO YOU NEED TO TALK. FOR NOW I'LL BE SILENT UNTIL I SCREAM TO THE STARS TO HIT ME AGAIN, I CAN TAKE IT. I'M A CAREGIVER.

Happy Mother's Day!

Happy Mother's Day to all the mommies. I hope everyone had a great day! Ours was just 'okay'. Dylan spent the night, so I got a crappy nights sleep, shared the hide-a-bed w/Dylan. Why they call it a hide-a-bed is a mystery to me. It should be called a hide-a-torture-rack. (sigh). But I digress. Yesterday I bought Debbie and Heather potted tulips for MD, and put them on a table in the living room. Dave didn't notice them all night (big surprise!) He did, however notice them this morning, so here comes the driving issue.....again. For those of you who don't know this, Dave's Neurologist had his drvers license revoked last August due to his AD. He wanted to take the car "just down the street" to Ralphs to buy me flowers. The sentiment was very sweet, I must say. When I suggested that I needed a few things and maybe we could go together, he flew into a rage. Now for the better part of our 33 married years, Dave was always Mr. Mellow, so when these new AD symptoms rear their ugly head, it's just, hmmm let me think, well it's just weird. He stormed around the backyard, cursing under his breath, but he came around. (thank God!) I am fortunate that Dave is mostly 'still in there' and these things (anger, rage and, lately, a little aggression) don't happen everyday, but they do happen. Back to the driving issue...last week I parked on the street when I got home, and later that night Dave said he would put the car away. Okay, I thought, it's only 100 yards, right? Off he went, and 5 minutes later, crash, boom, bang in the garage. He plowed into the truck rack that sits on the floor, and took a chunk out of my bumper. Now let me tell you, this truck rack is the bane of my existance. It comes off a truck that Dave hasn't owned in almost 2 years, and being that he will never drive again, why in the hell do we need to keep this stupid thing? One of my co-workers was interested in buying it, and when I mentioned this to Dave, he informed me he may need it someday. Sigh....
We had a BBQ with Matt and Heather (and Chris and Dylan), and Heather actually cooked! :) Now this was a total shock. Not only doesn't Heather cook, I don't think she even knows where her kitchen is! The food was actually delicious (after many phone calls to mom-in-law with quesitons), but I appreciated it. We're home now, Dave was crabby so I sent him off to take nap. I think for me, a little wine therapy is in order! Take care, and I'll blog at ya soon!

Today, I started a blog

Okay, so I've been trying to think of a way to keep family and friends updated on Dave's condition (you know, the dreaded Alzheimers Disease, which I will refer to as AD) without having to call you all and sound like I'm whining all the time. I'm sure, judging from experience, not many want to hear about it. A wonderful friend who shares this experience of being and Alz spouse, suggested this blogging thing. Since I am not very computer literate, I thought there is no way I can pull this off, but here I am!! :) I hope I can share our experiences, both good and bad, and maybe it will also help me deal with the stress of working full time and caregiving full time. I also hope that I can share family experiences as well. For example, Grandson Dylan turned 5 (omg) yesterday, and we had a family thing a Chuck E. Chesse's. It was lots of fun, and we always get to see Heather's family at these functions, and they are a hoot, (and yes, I mean you Toni!) so it's fun to get together. Grandson Joey (8) is getting ready to make his First Holy Communion this month, so we are looking forward to that. I think the biggest news is that eldest Grandson Dominick (who is starting HS in September) got accepted to Saint Bonaventure High School in Ventura. This was no easy feat, tests and interviews, finding community leaders to write letters on his behalf, and yet, HE'S IN!!! We couldn't be more excited for Dom. He has worked so hard for this, and we are very proud of him! Well, this concludes my introductory first blog (woo hoo!) and though it's entitled Diane's Daily Life, I doubt that I will have time to post daily, but thanks for visiting, and please check back often. I will be adding some pics and fun stuff, please be patient with the novice blogger!