Thursday, September 9, 2010

I've Been a BAD, BAD, Girl.....

Its been two weeks since my last confession. 

Our plan all along was to visit our friends Skip and Cathy at Inlet Beach. They vacation there every year for 10 days around Labor Day. This has been a ritual of ours as they include us. Normally, we go down about mid-week and stay until Monday, however this year we went down the first part of the week. It was splendid. Just the four of us for a few days, then folks started trickling in. WB slept until he woke up and napped often. No place to go, no place to be, just enjoying each others' company and laughing out loud at WB and the odd things he remembers. He confided in Skip the troubles he is having with speech and cognition. It was huge, for everyone. Again, unless you are around this everyday, it is extremely hard to understand.

Everybody who knows WB, knows that he loves to ride in the car. We made our customary stop in Clanton for homemade peach ice cream, then the exit at Davenport took us through the country to our destination. WB has been making this trip all his life as his grandparents owned property in South Walton so at the first opportunity to get off the interstate, we do. It has taken me many years to learn the pig trails his family took, but on this trip, I remembered them and he did not. That was somewhat disturbing. He was not completely turned around, but I could tell he would never be able to make that trip alone. 

We made additional stops for pictures and one special stop to see my old friend in the muscandine and scuppernong fields. He had grapes picked for me as if he knew I was coming, knew that I will stop and most likely remembers the wasp sting I took last year when picking. He also had grapes ready for me on the way back and the jelly is already processed and put up. WB reminded me daily while at the beach about "stopping to see the old man" and his grapes on the way home. I see a growing fascination from him about the smallest things often taken for granted. We never take a drive that he doesn't mention the clouds and their shapes relevant to other things they remind him of.

Prior posts mentioned a new routine with an Occupational Therapist, a Speech Therapist, a Phych Nurse and a Social Worker. This began 3 weeks ago and we have at least one of these girls in the home every day. It has been interesting to observe WB's interaction with them and we are already seeing improvements in his speech. He is stumbling less for words and finishing sentences. He explains it as though he knows what he wants to say and can see the end of it, but there is a barrier standing between his brain and his mouth. Pretty interesting observation and most telling that he shared it with Skip. 

They've asked me what I expect from this therapy and at first I honestly could not say. Supposing that just daily living skills would be a blessing, that is where they began. First they practice with him his writing and signature, then sorting a deck of cards in order and by suit and today it was just simply getting the things together to make a sandwich. His homework is to begin preparing both his breakfast and lunch independently and, we are not supposed to help or enable him. Time and time again they ask him what year it is and over and over his reply is 2006. Makes sense as that was when this all began.

Karen, WB's Social Worker, is on a mission. She too learned rather quickly the lack of resources for families living with Early Onset Alzheimer's Dementia. Very few safety nets and support groups for this stage of illness and absolutely nothing for young caregivers such as Kate. That said, she has produced quite a list of things for me to look into. The most promising is an Intensive Outpatient Program at Princeton Hospital. If admitted, they will pick him up 3 days a week and work with him for 6-8 weeks on the emotional and psychological fallout he's experiencing.

This new round of stimulus has been good for him. It was Dr. Counce who said, "there will come a time when you cannot give him everything that he needs." How right she was. I would have never insisted on him making his own lunch, requiring him to use the iron, having him peal the potatoes.  But these small things will keep him active, give him purpose, allow his mind to flow through to his hands and perhaps prompt him to finish a task or lay out something other than the mayo for a sandwhich.  

I am not sure why I waited so long to ask for help. The support that we are getting from the kids has been a huge relief. It has allowed me to receive a gift of a mani/pedi from my Amee and take advantage of a few gift cards that have arrived in the mail. I spent about 2 hours in the bookstore and it was divine.

All of this wildness has me behind and I am working feverishly to catch up on work that has come in. I have thank-you cards to send that are way overdue and find myself talking on the phone less and less as my emotions will not cooperate. Well-intentioned calls from friends normally ends with me sobbing, which in turn makes WB anxious.

We seem to be at that plateau again with the last big dip in the rear view mirror, but still  fresh in my mind. My hope is that we stay here for a spell. I am breathing again instead of gasping for breath.

Our days still remain full of activity. Canning, cleaning, yard puttering, visits from the grandies, website building, blogging, appointments being juggled and made with all of the medical staff, the wrestling with Medicare, Blue Cross, the pharmacy, trying to get Kate back up and running ~ 

I had been playing phone tag for a month with a contact in Phoenix about a website. After finally making a connection with her she mentions to me a new health supplement that is showing promise for AD patients. WHOA. Thinking we may just try a round of that.

Laying it all out there with this level of transparency was at first very hard to do. Admitting that I had my hands full was even tougher. I don't know if Bill understands this anymore, but the love that comes to this house is precious to me. To know at times like these that you are not alone is immeasurable. It absolutely fills me up.

What a test.

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