Friday, December 2, 2011

It's a shame, really. And, a pity...

...that I have not visited my own diatribe in months. So many reasons really, now that I think about it:
  • Sometimes saying (writing) it makes it more real.
  • It was created as a suggestion for therapy, but sometimes it just gets too depressing.
  • For a long spell we were in another lull while holding.
  • I am spending my words on other blogs.
  • Time has become such a commodity.
Many things to be thankful for this season. Kate is pushing through her college education as if it were a race, moving into new digs, and working a part time job since June. She still comes home on Fridays, but works most of the weekend leaving out on Monday morning for a noon class. Kate knows that if too many days go by without her daddy laying eyes on her creates issues and manages her class schedule accordingly. She's adding a minor to her schedule and a few soft courses as everything on the horizon for her revolves around her major. Finishing up the first semester of her second year and already 61% complete amazes me. Smart, focused, driven. Just like I like it.

We recently had a scare with our daughter-in-law, but seem to have thankfully dodged a bullet. After a six weeks of testing, nothing significant was found to explain 3 spots on her brain. Joni is a trooper and has a Trojan will. When she started nursing school, she announced that she would be concentrating on geriatric care (and that she could one day help me with Bill). Joni gives large and gives privately and is like nobody else I have ever been around. In her heart and in her body, she knows something is just not quiet right. Knowing that she had anything going on in her brain sent me into a tailspin. Having become very aware of what any kind of brain deficiency does to not only the patient, but everyone within striking distance seems to invoke slight panic....around here, anyway.

I prayed diligently for nothing short of a complete healing for Joni. God is good, that way. We have an understanding. He is fully aware that my pail is full. No doubt about it. Blessings come in all kinds of ways, I just have to remind myself to recognize them.

A busy summer ended with several days at the beach with our good friends, the McKays. This has become a yearly ritual to spend time with them on the most beautiful stretch of beach in the world. We left earlier for home than originally planned, as Bill began having issues finding the right bedroom. The longer we stayed, the worse it got. I would probably rather be at the beach than any other place in the world and only hope that before my time expires, there's a window of opportunity for me to soak up vitamin D without a schedule.

We had Andrew, Preston and Taylor Paige from Texas and Will and Meghan from Boston. House was full from June 1st until Labor Day. It is a joy for me to know that they want to come. We still don't do a lot, but I suppose we manage to find things they enjoy.

Susie comes from Boston every chance she gets and I cannot describe in words how wonderful that has been. To have someone to talk to until the wee hours of the night, someone who loves WB as much as I, who doesn't witness the daily grind, that sacrifices work schedules and leaves her kids, to just acknowledge and support us girls and then the bonus, she brings with her Maddie, Dalt, Meg and Will - it's been a wonderful thing. To know that she knows WB has nothing to offer, nothing to share, nothing at all and yet still makes the trek. I admire her. Any difference of opinion we have ever had is long forgotten as we focus on WB's needs. Another blessing.

Several days a week, Michelle wrangles WB for me, either taking him on rides or running errands. By the time he rises in the morning, I been studying for hours and she's taken over his first cup, the pop tarts and his morning medicine routine. It is a pretty tough job, but she can keep him entertained until at least after lunch. Michelle absolutely handles the heavy lifting.

Since May, I've been able to make one weekend trip to the beach with Sheri, a weekend trip to Memphis with the girls and one ballgame with Kate. Other than that, its pretty much all hands on deck. Sometimes you just have to get to a place where you know its going to be easier on everybody and resist at all costs "not upsetting the apple cart". It won't be easy with the sitters finally start coming, as WB just does better staying at home with the people he knows.

Moving on to the white elephant in the room, the reason the Blog exists at all, the main attraction...

It's just not good. You can dress it up, splash a little cologne on it, prop it up in a window - you just can't make a purse out of a sow's ear, which was once one of WB's all time favorite sayings. Not too much more to say about it except:
  •  Can no longer organize the materials for a sandwich.
  •  Can no longer cut his meat, butter his bread, ties his shoes.
  •  Train of thought is down to seconds.
  •  I could once finish his sentences, now I have no idea most of the time what he's trying to say.
  • We pretty much communicate for him.
  • Lots of crying and frustration.
I absolutely know without doubt the Alzheimer's medications are having little to no effect. However, he still never misses a dose as I refuse to chance it and daylight savings time is for the birds when there's an AD patient in the house. Just this afternoon at dark, he emerged from the bedroom fully dressed, pockets packed and dragging his shoe laces ready to head out the door. I'm not sure where we were going and it took a good 30 minutes to convince WB that we were not going to see "that other boy". He never could tell me who that other boy was, but it took a bowl of tomato soup and three grilled cheese sandwiches to get the cow back in the barn.

Just another one of those textbook symptoms, having slept in the den chair for three years keeps me pretty tuned in to the sun-downing and night wandering. Supposing now the meds it would take to keep him down all night would kill him outright, we just roll with the punches. At 2:00 am this morning and after hearing the biggest racket ever, I found he had moved the comforter and quilt off the bed and was having a Baptist pallet in the master closet floor. You may say leaving him there to sleep it off a great option, except for those damned consequences...

This is daily living, folks. Much like having a toddler in the house, its hell on wheels.And the stupid questions still keep coming, "How's Bill, is he getting any better?"

You're kidding, right? Just Google Alzheimer's. Please. Do it for me. Do it for yourself. Just do it.

His doctors, our neighbors, friends and people who you would never suspect have started opening the door to counsel. Kind words or just a look to let you know that they see the toll its taking and that it is okay to feel helpless. Never encouraged to take another route, just an acceptance that we're still in the weeds without a whacker. Ironically, I now see relief coming from those who recognize caregiver needs. As if to say, "we're shoring you up so that you can keep the vigil."

Since being blunt is one of my hallmarks or (faults), I see no reason to hold back now. You just have to get here to know what its like to see who's still standing with you. Then, you better have the guts to accept who is not.

Interestingly, this came out of my mouth tonight, "To know him now, is to love him most precious. A man who once feared nothing or nobody. A man who dedicated his life to his family and his children. Helpless and vulnerable. And of his antics he says, "I'm sorry, Honey." To which I now reply, "Not as sorry as I am."

The shame is that I see a shift in the focus. The pity is that I am in favor of accepting it. For most who are closest to us, who care and spend the time to really know what's going on, the question has become, "How are y'all holding up?" Upon reflection, perhaps they're starting to see a crack in the rock.

My name is Rhonda Brantley and my husband, Billy Ray Brantley suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

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