A Pound of Preparation

Blog 3-31 003I’ve been home with my husband Ken, who has MS,  for almost four years now without a break. It’s not that I want to get away from HIM, but I’d like a respite from our situation. Little did I know that preparing for a weekend getaway would take so much work. Yup. I’ve come to realize nothing easy when the government is involved.

One thing I had to do was put my respite in “the budget.” Ken’s in a Medicaid program, which is supposed to be self-directed, but I must meet with our coordinator in order to do anything. I must have misunderstand “self-direction” when we picked this plan. At any rate, putting items in the budget is always Step One.

Step Two is to find a service or place that will take care of Ken while I’m away. Ken expressed he wants to stay home because he’s so comfortable here, plus he’d have the added companionship of our little pug, Ernie. Okay. After going through lists of private providers, agencies, and nurses which my coordinator provided, I screamed for help. How does one pick competent care from a list? I acquired an inch-thick pile of paper which caused me to hyperventilate!

There’s a well-known agency in our area that came to our house for two other reasons, so I made a call to them and learned I first needed to be received into their “system.” Really? I had dealt with them two other times and I wasn’t in their system? Hmmm.  I told them he needs help with meals and some companionship, but they didn’t take my word for it. The woman took my information, and I learned at the end of the call I would be hearing from them to set up an appointment with an assessor to determine how much care Ken really needs. Hmmm.

Step Three. We decided it was a good idea to order a “Life Line” device, so when I’m away, Ken can get help if and when he needs it. This part was easy. Our coordinator put the request for this aid into our “budget,” called the agency which provides the device, and the next thing I know, an appointment was set up for Saturday.

Today is Saturday, but I forgot the guy was coming — luckily, we have our doorbell Ernie that alerted me to remember the guy was coming once he was on our porch.

And now I wait.  And of course, should the assessment process take longer than I think it should, I have a plan “B”. NOTE: If you should ever have to rely on government agencies, always have a plan B. Just sayin’.

Will I get away on May 10th as I hope? You and I will just have to be patient (God, how I hate that word!) and see what happens.

I promise to write, if I should get lucky.

3 thoughts on “A Pound of Preparation

  1. I empathize with your dilemma. As full-time caregiver for my terminally ill MIL for over two years, I had the fortunate advantage of Hospice. They permitted me 5 days of respite every thirty days. At first I didn’t take advantage of it, but after about a year of non-stop care giving, I decided to take full advantage of my 5 days each month. She is in a better place now and I’m just exhausted and like a ship without a rudder.
    I can’t imagine going four years without respite. I pray you get to go and have a relaxing, refreshing, rejuvenating time. I believe the scripture says somewhere that “in your patience, possess your soul”…so whatever you do, don’t pray for patience just try to have it. The old myth is that if you pray for it, God will send trials. Trials and troubles develop patience. God Bless you for honoring your husband the way you have. God will bless your for your sacrifice.

    • Your words touched my heart. I know there are many other people taking care of people they love, and I’m glad you told me about your experience. Hospice is a long way away–I hope; with MS no one can say for sure. But then can any of us? Your ship will eventually find its destination, in the meantime, hold on to the mast. Much love to you.

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