On Being “One and Whole”...

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Posted on by Emily Gillespie Clement

Throughout my tenure as chief blogger from the spouse perspective, I’ve tried to present the realities of Alzheimer’s while sprinkling my thoughts with a light dusting of humor. Beyond the fact that this is my nature, I think it’s important. One of the key points of encouragement that we, as Alzheimer spouses, need to emphasize with one another is that we must try not to go down with the ship. Alzheimer’s is claiming one victim. Need it claim two? Can you, as the surviving spouse, say no, hang in there, and begin to put together pieces of a life after Alzheimer’s?

My oldest daughter gave me a lovely gift. It’s a quote from The Lord of the Rings trilogy, and even if you’re not a Tolkien fan, it may resonate with you as an Alzheimer spouse. The context: The hobbit Frodo has endured and completed an unspeakably trying quest, but has been left so physically and emotionally wounded by the process that he has been granted passage to Valinor, a land where he may find peace. His faithful companion, Samwise Gamgee, still has a life worth living in Middle Earth, but is distressed by their impending separation. Frodo says to him: “My dear Sam, you cannot always be torn in two: you will have to be one and whole for many years. You have so much to enjoy, and to be, and to do. Your part in this story will go on.”

If placement of an ill spouse becomes an appropriate option for you, you find yourself immersed in a new milieu. I am in Jeff’s “neighborhood” once or twice daily. The staff is awesome--I could not ask for better. But, surrounded by fellow residents, all of whom suffer from the same illness, you are looking straight on at the reality that there are not many plateaus at this stage. One who was rambling around speaking friendly gibberish at you now spends her days doubled over in an easy chair. Another has a hospice worker helping her with meals. Another has ceased to catch your eye and give you the smiles you’d enjoyed from him.

Mine no longer seems to notice that I am me. Or that his brother is present during his frequent visits. Our place in his remaining ability to perceive his environment has been minimized, and continues to grow smaller. I retain a function. It’s my duty to make sure there’s a good supply of disposable underwear, bed pads, and cleansing wipes. I help him with the bathroom if the need arises during my visit, and maybe I run the electric razor over his stubble. But there is little difference between me and the others who help him with these tasks. The ship is going down...or maybe it’s nicer to think of it this way: He’s setting sail for Valinor, and I don’t have a ticket. My place is here, feet on the ground, a few decades, maybe, left to work with.

So, this is where I am now: Working on going on. I find I do not have as much to say as an Alzheimer spouse blogger, and I need to look around and discover what else I might do with this life. Oh yes, there are the young adults still in need of some administrative help, the house in need of finishing work, and my usual obligations. And new for me--an 8-week seminar on songwriting. (You don’t have to know this, but as a 3 out of 10 in both instrument-playing and singing, this could be silly, but as someone said recently--do what scares you. So I am.)

I will check back in as I think of practical issues that we as Alzheimer’s spouses need to address. Meanwhile, I’ll be working on that being “one and whole” thing.

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