Darlene continues to amaze me. Not only is she a wonderful wife but also an excellent caregiver. Home life is still a full time operation and Darlene skillfully and compassionately balances care for Laura with care for herself and time alone just with me. She also prioritizes maintaining relationships with our other 2 children, extended family and friends. Over the past month Darlene has taken Laura and her sister Emily to Sherwood Gardens to enjoy the tulips and we hosted 20 people for Easter brunch at our house.
I wish I had the patience that Laura has. A month ago when the movie "The Hunger Games" came out Laura expressed a desire to see the movie. One thing about Laura though is that when a book turns into a movie she always wants to read the book first. She's done this for all the Nicholas Spark novels and this was no exception. The challange is that now Darlene and I must read out loud to her. It really is a bonding experience, though another reminder of the nature of this disease.
Laura continues to patiently wait to see this movie. Usually we read 10 - 15 pages a night and since we only have 50 pages left in the book, we hope to finish the novel this week. And then it's off to the movies to see how this book was adapted for the screen. Here's another slice of bitter sweet: Last week we recieved formal notification that Laura has been accepted into Maryland's R.E.M. program. This haas been something I've been working on for about 5 months. R.E.M. stands for Rare and Expensive Case Management and is Maryland's program that classifies a select group from the states medicaid program for extra and individualized case management. I believe, though I'm still learning, that it takes the primary responsibility away from her Community Care Plan and shifts it back to a State/Federal program that is managed by the state.
A few things I do know is that it significantly increases the network of doctors she can see without prior authorizations, and there is one case manager that proactively assists you at all times - and I emphasize the word "proactively". As sweet as this inclusion is, it also has quite a bitter (read: sad) taste because it's just another reality check that this disease is significant, progressive, and expensive.
And just last night was yet another reminder. At about 10pm Darlene was helping Laura to the bathroom when I heard a loud crash. After knocking on the door, I went in to find Darlene and Laura on the floor. Darlene looked stressed; Laura was laughing. Actually, that means she was probably crying. Yet another of the sad realities of this disease is that the messages that Laura's body sends to her brain (afferent, versus when the brain sends messages to body (efferent)), often are re-routed to a different area of the brain, i.e, "I am hurt and my brain should tell my emotions to cry, but my brain is interpreting the message/command as "laugh". Simply put, you can call this a case of mixed signals. Practically stated, this makes proper diagnosis and care of her symptoms very challenging.
On another note, we are nearing the start date for the construction of a 42' long wheelchair ramp . It is designed to blend into the house and be as least obtrusive as possible. It will run along the east side of the house, from the back deck to the front. Later this month we plan on going to Ocean City Maryland to attend our nephew's wedding. A family from church has generously allowed us to stay at their condominium for 4 nights. It will be a nice break. In June we have a large extended family vacation at a house on the Chesapeake Bay, 19 overall guests. Typically these gatherings are filled with fun and festivities and this year will be no exception.
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