Sunday, August 1, 2010

No, WB is Not Helpless.......

CRS disease. Can't Remember Shit. That's what we started telling WB about 10 years ago. Just thought there was too much on his mind, too much going on, too many obligations, a house full of kids. We're all in agreement that this may have started back about 9-10 years ago.

Just as recent as 15 years ago it was dementia, before that they just labeled you senile. With the total AD patient count quadrupling by mid-century (with all of us baby-boomers), they may name it something else altogether, like the plague. WHEW

I write often on what he can't do but have been asked to list the items he can do. In case somebody may want to visit or take him for a ride or walkabout, I agree it would be good to know what to expect.

Things he can no longer manage:

He cannot tell you what day it is, what month it is, what season it is.
He cannot count backwards from 100 by 1's.
He cannot work the credit card machine at the gas pump.
He cannot remember to put the gas cap back on.
He was forgetting when driving that he was driving, was doing too much looking, so no mo' driving.
He cannot keep up with anything: and most things are right where they always are and where he left them.
He loses his glasses when they're on his head.
He can no longer work the remote control.
He cannot remember to take his meds and after he's taken them cannot remember that he took them 5 minutes before. (when he took them)
He no longer reads at all, plays any games, works any puzzles.
He can't make change.
He can longer drink WHISKEY.
He cannot live alone or be left alone for long periods of time. He's a flight risk if he's bored.
He cannot remember what he had for breakfast or if he had it. Same with lunch and dinner.
He has trouble forming his words and finding the right words to use on occasion.

Things he manages pretty well......

He can remember nearly everybody he sees, unless he's at a funeral.
He can dress himself completely in his same uniform...wrangler shorts, Guy Harvey T-Shirts
Shower, shave and get ready although it takes longer.
He can take the trash out, but not get the liner back in the can.
He can drive the golf cart.
He can make a peanut butter and jelly sandwich, heat up a pop-tart but gets confused making his coffee.
He watches TV if you will get it on the right channel.
He would like to fish, but he can no longer get his gear right and each cast produces a bird's nest.
He would like to hunt, but I am scared to death to turn him loose with a firearm (alone).
He can reminisce about things and people (even call them by name) from the PAST.
He dreams a lot and they are vivid and real to him.
He loves to go riding in the car and visiting folks.
He likes going to the Barber Shop to see Joy.
He likes going to eat lunch at Fran's and he loves Fran, although he can't read a menu. They just bring him what they know he likes.
He likes to kick the dogs from time to time.
He loves seeing the grandies, but I can tell they're starting to wear him out some.
He feeds himself well and you can tell (250 pounds).
He loves to be hugged, kissed and made over.
He can mow the grass, is terrible at it and we no longer ask him to do it.
He will go to a movie, but its not one of his favorite things.
He will float in the pool but can't get too hot with the new meds.
He loves to watch deer.
He loves to ride in a boat on a lake ~ not in the ocean.
He loves to tell stories, always has, always will.
He loves company.
He can tell the time on his watch but asks me 20 times/day what the time is.
He will ask questions....over and over and over and over again. Because he can't remember the answer.
He won't wander too far away if he's out and about with somebody.
He knows most days that this is going to kill him and it depresses him greatly.
He will interrupt a conversation in a heartbeat. Otherwise, he knows he will forget.
He loves Diet Coke.

Of course there are other things he can do....other things he can't,  but  I wanted to relay a general idea of what really goes on at this level of impairment. If you think this is like taking care of a baby or toddler at this stage, that is simply not true. He does not require a care seat, does not need a diaper, can eat and toilet independently and will not make as ass of himself in public.

So, don't let me give you the impression that the AD has taken over to a point where WB's wandering around like he doesn't know anything. That just isn't so. Each and every day is different, to an extreme. Some days its better that he not even get out of bed, much less the house. Then others, we are amazed. Textbook Alzheimer's Dementia.

We understand his triggers and sometimes they just can't be avoided. If he decides he's going to run away from home, I cannot let him and then we have issues. If he decides to burn something in the backyard, I try and get the fire out of his hand. If he gets a power tool out or a ladder, I usually intervene. Generally, its the intervention that causes the breakdown. When we have to say no. 

This alone causes his depression. He knows that he can't do these things most days, but others I suppose he just gets to feeling pretty frisky. Again, I think its boredom. He needs more mental stimulation now than I have to give him.

In the beginning, he was so depressed he talked of "offing" himself, but now I do not believe he has the capacity to think that way. AD makes a person unable to think of anything else or of anybody else but themselves. Their thoughts, their feelings, their lives, their needs. Complete inability to connect with the feelings of others. 

Bill's oldest daughter Susie is coming on Wednesday from Boston to pick him up for a little field trip. I believe lunch and a trip to The Bass Pro shop are on the agenda.

Wade, Bill's oldest son, will soon be working his new job schedule around to include WB since there will be some drive time and job site visits.

If I were WB and in his condition, I would most likely be depressed about the prospects of knowing that there was no cure for my ailments and that each new day brought the prospect of more confusion and helplessness.

A tidbit about the 7 stages of Alzheimer's: WB was officially diagnosed 3 years ago this October 16th at level 3-4. We are now at full 5 with about 4 episodes of 6.

Stage 1: No impairment (normal function)
Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview.
Stage 2: Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer's disease)
Individuals may feel as if they have memory loss and lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers.
Stage 3: Mild cognitive declineEarly-stage Alzheimer's can be diagnosed in some, but not all, individuals with these symptoms
Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible during a detailed medical interview. Common difficulties include:
  • Word- or name-finding problems noticeable to family or close associates
  • Decreased ability to remember names when introduced to new people
  • Performance issues in social or work settings noticeable to family, friends or co-workers
  • Reading a passage and retaining little material
  • Losing or misplacing a valuable object
  • Decline in ability to plan or organize
Stage 4: Moderate cognitive decline
(Mild or early-stage Alzheimer's disease)
At this stage, a careful medical interview detects clear-cut deficiencies in the following areas:
  • Decreased knowledge of recent occasions or current events
  • Impaired ability to perform challenging mental arithmetic-for example, to count backward from 75 by 7s
  • Decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances
  • Reduced memory of personal history
  • The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations
Stage 5: Moderately severe cognitive decline
(Moderate or mid-stage Alzheimer's disease)
Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may:
  • Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated
  • Become confused about where they are or about the date, day of the week or season
  • Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s
  • Need help choosing proper clothing for the season or the occasion
  • Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children
  • Usually require no assistance with eating or using the toilet
Stage 6: Severe cognitive decline
(Moderately severe or mid-stage Alzheimer's disease)
Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:
  • Lose most awareness of recent experiences and events as well as of their surroundings
  • Recollect their personal history imperfectly, although they generally recall their own name
  • Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces
  • Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet
  • Experience disruption of their normal sleep/waking cycle
  • Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly)
  • Have increasing episodes of urinary or fecal incontinence
  • Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding
  • Tend to wander and become lost
Stage 7: Very severe cognitive decline
(Severe or late-stage Alzheimer's disease)
This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement.
  • Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered
  • Individuals need help with eating and toileting and there is general incontinence of urine
  • Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

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