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Monday, December 31, 2012

A Two Year Caring Anniversary

Bob, one month after being discharged from the hospital.
Today marks two years since Bob was discharged from the hospital. He came home a broken man. Severely disabled and in uncontrolled pain.

He came home able to say only a few words, such as "radio" or "window" and these words he repeated over and over and over again.

He came home weighing 145 lbs, a mere shadow of his former self.

Two years ago, I spent the week between Christmas and New Years fighting with the staff at the Acute Rehab Hospital. They were not going to allow me to take Bob home. The physiatrist (rehab doctor) pulled me aside, sat me down on the chair in the hospital hallway, and told me, in no uncertain terms, that I needed to understand this: "your husband is nursing home material, he will never be going home."

In my heart, I knew this wasn't true. Not Bob. And in my heart, I knew that sending him to a nursing home would be a death sentence. I felt I must get him out of the dirty medical facility environment as Bob continued to come down with infection after infection and already had dealt with two bouts of pneumonia and spent most of the time in "quarantine". But most importantly, I must get him to a pain management specialist to control his pain, and I must also get him to see his other regular doctors because I did not like this new mix of drugs the hospital had put him on.... and, too, I felt that I could take better care of him than any nursing home. But no one was listening to me.

The social worker at the hospital actually lined up a nursing home and had the coordinator meet with me at the hospital to begin Bob's admission process. This meeting was arranged behind my back. I felt defeated. Cornered. I did talk to the nursing home admissions coordinator. I asked her questions, such as what do they do for pain management? (Answer: pretty much nothing but keep him on the drugs he's already on) and how much therapy would he get? (Answer: 15 minutes a day, if lucky.)

I felt like I would have to figure out a way to smuggle Bob out the hospital, kidnap him in the middle of the night, sneak him out the back door, before they sent him away.

Bob, today.
Then, the nursing home called and said they had ran Bob's insurance through and now needed a co-pay of $3000.00. I told them, sorry, I didn't have the money. So the hospital was forced to discharge Bob home. They were not happy about it.

The therapists, at first, refused to train me on how to transfer Bob with a slide board. They told me that I was crazy, that it required two people to lift Bob from bed to wheelchair. They ordered a hoyer lift to be sent to our house. I cancelled the order and insisted they teach me how to use a slide board.

The rehab doctor pulled me aside again and also told me, in so many words, that I was crazy. She said she was certain that I would be calling her up within a month asking for a referral to a nursing home. She said that I would never be able to "handle it". That she could not condone my decision because Bob was "too frail" and "medically unstable".

Then, one of the nurses pulled me aside and whispered that, though no one could say it out loud, the nursing staff was on my side. She said, she knew I was making the right decision. She said that I was right, Bob would only decline if he went to a nursing home.

And when I pushed his wheelchair out of that hospital, the ladies who volunteered at the front desk actually stood up and clapped.

That was two years ago. On New Year's Eve.

And it has been one long damn two years. Two years of caring for Bob 24/7. Without a vacation, weekend or holiday off... Heck, two years without a decent night's sleep! But also two years without a single hospitalization or infection, and Bob has gained back all of his weight and is happier and healthier than ever. And he loves being home.

And I wouldn't have it any other way.

Happy New Year


Anonymous said...

Diane, I applaud your tenacity in doing what had to be done, not what was the easiest to do. I take my hat off to you for all the fights you take on each day for Bob, i.e. HMO's.
I take a bow to you for all the sacrifices you have taken yourself for all the care you provide Bob. And I kneel in prayers for both you and Bob for continued improvement, reduced stress and of course, winning those fights with the "experts" when you know best.

May your 2013 be much better with great improvement. Happy New Year Bob & Diane. Celebrate all your successes!!!

Hugs, Dan

J.L. Murphey said...

WTG girl. Stick yo your heart. For me, it has been a twelve wonderful year struggle with my husband with a six month or less diagnosis with his heart, lung, and cancer fight. I wouldn't trade a moment of it.

I was talking about a vacation before May for a week break from his care. He agreed and then he asked the question, with him or without him. I hadn't left his side except for a few hours each day for work in 12 years. I was thinking about my decision when I had my stroke.

When I had my stroke leaving me paralyzed on my right side, barely able to swallow, walk, or talk when I was discharged, the social worker approached me about hospice care again for my husband. Although I wasn't sure how we would manage. They were flabbergasted, but

I showed them my new method of drawing up "morphine" (it was saline for them) with one hand and injected an orange. It shocked them. They had never seen such a thing done. It helps that I'm an old retired life flight nurse and paramedic. I was trained to reason situations out without help.

I came home to my husband and after six months, I'm glad I did. Whereas before he was basically total care, he has now become a care giver. Most times it is a battle of the care givers in my house.

Don't get me wrong. He is still terminal and there is a lot of frustration on both of our parts. But isn't that what marriage to your soul mate all about? You love and care for each other through hell and heaven.

barbpolan said...

Your and Bob's story describes the strongest and most committed relationship I have ever heard of. When my husband and I think we've got it tough, we both think of you and how our life is a breeze compared to yours and Bob's. Congrats on your 2-year anniversary. Pat yourself on the back for proving all those experts wrong! May 2013 be a wonderful year for both of you.

Susie said...

He is so lucky to have you in his life. Sadly too many people believe everything the "medical world" will hand them without question and without the confidence of knowing that they know this person better than others. You are very brave, and I am certain, very tired. Know that you are understood by others that admire what you are doing.