JOAN’S BLOG – MONDAY, JULY 8, 2013 – GOING AWAY

Lately, my position as Alzheimer Spouse has become too much to bear. Being in charge of EVERYTHING – finances, insurance, doctor appointments, navigating the Medicaid system,  researching care options, endless phone calls, meetings with Medicaid, nursing home directors, Medicaid specialists, organizing paperwork, waiting on my husband, grocery shopping, errands, being the medication tech, being his brain and memory – has paralyzed me. With so much to do, last week I simply shut down and did nothing.

Usually, after a day of handling most of the above, at around 4 PM, I lie down to rest my back. I turn on my Kindle Fire to a repetitive, addictive computer game, and stay with it until it is time to give Sid his supper. I do not just play the game, I escape into it. I shut off my mind to the outside world and concentrate only on the silly game, surfacing when Sid calls for something, then returning to the game.

When discussing my “getaway” with an Alzheimer Spouse friend of mine, she nodded knowingly. Apparently, she also escaped from the world of Alzheimer’s and caregiving by napping and reading. She completely understood what I meant by “going away”. 

Unfortunately, last week, instead of working and handling the issues mentioned above, when not tending to Sid’s needs, I napped, wrote e-mails, and “went away” into my game for hours at a time. I looked forward to the escape, losing a whole week of work because I so desperately needed to flee the Alzheimer prison in which I live.

An occasional escape into a video game is not a bad thing. It provides us with the break we need. However, an entire week of such escapism is a sign of needs deeper than a simple daily breather from caregiving. It signaled to me that in order to survive this Alzheimer journey, I need to change my life; to make it worth living again; to get out of this Alzheimer caregiving black hole.

That change MUST be placement of my husband in a facility. Those of you who follow my blogs know that I am at a standstill as far as placement. Medicaid does not pay for Assisted Living, which is not equipped to handle his physical needs anyway. As for nursing home placement, Medicaid will take his social security to offset the cost, leaving me with not enough money to live on, even accounting for the spousal diversion program ( allows you to keep some of  the ill spouse’s social security). Stay tuned for my next blog, which discusses the steps I am taking to make placement possible, so I will be able to crawl out of the abyss that is Alzheimer caregiving; the abyss that is making life so unbearable that I have to “go away” more and more often.

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