Thursday, July 29, 2010

Today, WB woke up with a new plan to drive his truck.....

Big Daddy and Austin
Christmas 2009

WB told me that I am keeping him at home like a caged animal. That I will not let him go anywhere, do anything. I had backed off the medications a little at night because he was wild. Perhaps I backed off too much. It bothers me for him to think that he is a "caged animal". What would he think if he is not living here and in a facility where he cannot escape. He will hate me for sure as he has no real understanding of what is causing this. 

Digress to yesterday: 

I spent the most wonderful 2 hours in Costco with a friend. But I returned to find that WB had escaped the girls and took the golf cart to visit a neighbor up the hill. Never met them....just came up missing for about 20 minutes and returned home with a piece of paper with names and phone numbers. He says he parked in their driveway, knocked on the door and just introduced himself. I asked him what they talked about and he replied, "old people shit."

I wonder what they thought about that. I'll have to call and explain later, that's another lost time slot.

Last night Lori and Sierra came over and we grilled out the most delicious steaks, huge baked potatoes and WB's favorite, Key Lime Pie. He was happy with his meal, bragged on the cooks and generally appeared to be having an outstanding time. Hugs and kisses all around. He is always in the best mood and exhibits his best and most jovial behavior when we are around others. Its as if its OK with him to make only those of us who take care of him the most miserable.


This morning, I can explain to him the reasons he cannot drive, why it is unsafe. By this afternoon, tomorrow or this weekend he will have completely forgotten this explanation and that we had an understanding about it. He will then go to his chair in the garage (in front of the fan) and sulk for several hours, perhaps get himself worked up again, perhaps not. Do I give him the "as needed" medication to calm him down, which puts him to sleep? Do I wait? It really is a crap shoot.

While careful to not raise my voice, the beginning spiel of my reasoning for why he cannot not  drive meets with his cutting me off mid-sentence. Lately when he does not want to hear the reason, he just leaves the room.

He said to me only moments ago, "All I am good for now is to mow the grass". I reminded him that he did not mow the grass yesterday, that nobody ever expected him to mow the grass again or do anything he did not want to do around the house." Then, he turns and leaves me for the garage with an "I'm sorry." 

Dr. Lee encouraged me once to get him involved in woodworking (he is a former builder). HARUMP. Work a crossword puzzle, do memory games, read the paper, read a magazine. Excuse me folks, WB can no longer work the remote control! We love and appreciate his doctors, but really. Unless you live with AD and the patient afflicted, you have no idea. Think cat-n-mouse, Sybil, One Flew Over the Cuckoos Nest. I often wonder what would happen if we were to turn him loose with a circular saw, let him scale a ladder, paint something. My best hope is that we get through each day without a major financial mishap (as his tinkering has become somewhat expensive) or worse, with WB in a cast with a broken something or another and missing hand/fingers.

The psychologist who saw him in the hospital suggests "talk therapy" for WB and the family. I laugh out loud at the thought of it. More wasted money, time and effort. What WB understands from day to day changes, the tone of our voice and how we communicate changes to accommodate his moods. No talk therapy for me. I'm nixing that in the bud, now.  We've had more experience with him in the home and living with his illness than any of his doctors ever imagined. Just give us the drugs, help us find the resources, support us when we attempt to articulate the madness and let us be. Again, no talk therapy for me. What we need is a big nurse with a customer bat.

Wade, Amy, Kate and I have found humor. Mike and Michelle....not so much. Sometimes, we just laugh out loud to keep our wits up. We recall special moments, funny outbursts, silly things the AD makes WB do and how it makes him act. To outsiders, it may seem crass, but it helps keep us sane. More often than not, WB just laughs along with us. Mike and Michelle, on the other hand, are horrified. Mike is in denial and Michelle just rings her hands.

I was reminded last night that I am losing my humor. A good friend on the outside looking  in commented that I looked tired, worried and not myself. That I was losing myself and that if I did not pay real close attention...this could eat me up and make me useless to WB in times when he will need me the most. Upon reflection, she is probably dead on. However, I think he's needed me so much in the past 10 years that I am at a point where nobody else can need me at all. I think it is already here. 

(As the always on the ready, go-to person for whatever. The stable and most reliable resource for any and everything. Something that is part of me, makes me who I am. The most resilient person I know is me)

His clinical trial doctors at UAB constantly ask, "how are you?" Perhaps this is why. Suppose they know what happens to the primary caretaker? Can they see it on my face, in my eyes? They know. I now know that they know that WB and this disease have the capacity to use me up.

So, it started early this morning. Chances are, this will be a shitty day for all. The pattern will now include us all trying to soothe his bruised emotions to lessen the chance of an outburst. Instead of spending the day trying to work, I will be the most distracted while wondering who is going to set him off (kids, dogs, cat, neighbor, me).

I had been researching other sites for information on early onset when this began this morning. I rise early as it is quiet and tip-toe around with coffee in hand. It is my time and I am extremely selfish with it. 

Currently, Alacare is working on a prescription for a Home Health nurse to visit 1-2 times per week to check him out. Hopefully, we will get the RX and a psyche nurse. Then, when a crisis may arise, I call the nurse who will then decide which path of treatment comes next. It is also my understanding that getting this level of help becomes advantageous to the entire family as their resources for help with therapy, support groups, counseling is vast. Looking forward to having an advocate and am hoping it all works out.

In a better effort to keep track of this decline, I will try to be more diligent and post more often, include more technical information regarding his medications and treatment, etc. Lists do not inspire me like the crude written word. It would be impossible to express the emotional side of this journey with only a list.

Had an old friend of Bill's tell him Monday that he would be coming by to get him for a few hours Tuesday. Still haven't seen him and its Thursday. WB has a hard enough time keeping up without having to keep up with dates that never happen. 

He is getting tougher to handle for sure, but we love him and have always been committed to making sure that we care for him with respect ~ even if it does require a bat.

Update: Kate's University of Alabama parking pass just came in the mail. Seems WB has been out to the mailbox and noticed there was something there for her from UA. She explains to him what it is. He kisses her on the head and gives me orders to buy for him more nose spray, mouthwash and denture cleaner. Then, he informed us he's taking a ride on the golf cart.

Things sure change fast around here.

Sharing a tidbit from a great site:

No one is free from the threat of Alzheimer’s. It is in fact a very democratic disease and has afflicted the likes of former President Ronald Reagan, former British Prime Minister Harold Wilson, singer Perry Como, actress Rita Hayworth and former Secretary of State Cyrus Vance. There are currently 4 million Americans living with Alzheimer’s, a number that is expected to skyrocket to 14 million by mid-century.

While Alzheimer’s is primarily a random disease, there does exist a rare, hereditary form called Familial Alzheimer’s disease. Familial Alzheimer’s affects less than 10 percent of all Alzheimer’s patients; those with familial Alzheimer’s stand a 50 percent chance of passing it on to their children.

Over 90 percent of Alzheimer’s patients suffer from a non-genetic strain termed Sporadic Alzheimer’s disease. There is no known cause for this illness, for which the only accepted risk factor is old age. Some experts believe there is a link between Alzheimer’s and health disorders such as high cholesterol and obesity. Scientists have even considered a possible relationship between the disease and mental inactivity. For the most part, however, there is no way to determine who is and isn’t at risk for Alzheimer’s.

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