Emotional, Social, and Financial Cost of Long Term Care

A new couple has moved into my retirement/assisted living home. Just by looking it appeared that the husband was the one who needed assistance. He was in a wheelchair and sat rather crooked, his face a bit crooked too. They both looked younger than 65 and we are not a home for the wealthy, in other words, nobody with enough resources to retire early would choose this place. My curiosity peaked. Might he have MS like me?

Just as it was at my job, I am always looking for another with multiple sclerosis, though the last one here was a real B-word. She didn't stay long, just long enough to tell me and the maintenance man that we were total jerks. Lovely. Anyway, I will always, I suppose, be on the look-out for a like-bodied soul.

Now, I have never had much trouble asking. "Hi, I'm Diane. I have MS, do you have MS?" Sometimes the response is an indignant, "NO." Most of the time it is a welcome chance to begin a new friendship. For some reason I was hesitant to ask this pair. Luckily, I was summoned to their table during dinner the other night.

Another couple, with whom I have become good friends, called me to join them at the new couple's table. The husband had liver cancer and Parkinson's. They moved here to be close to our university hospital, which is doing trials on new cures for liver cancer. I found I had a lot in common with this couple. They had been going along just fine in life, following all the rules, planning the American Dream when illness pulled that rug out from under them. Now, they were here and the cost of long term care was overwhelming them. ($4,000/month is not unusual.)

It is such a sad situation, replayed, I'm sure, a million times: the ill person can get Medicare aid in a nursing home, but there is no place for the spouse to go. Medicare will not pay for a healthy spouse to stay in a room with their ill spouse. Romantic, isn't it? And such a nice way to head toward your final days---separated from the love of your life, no kisses when needed, no pats, hand holding, only during visiting hours. And without LTD (Long Term Disability) insurance, the spouse who may have never worked or made less income, is left to fend for themselves with less time or energy to visit a nursing home. 

Of course we humans made this problem, in other countries and in the U.S. years ago, families stayed close together and cared for their own. I'm afraid those days are over. For all our "advances" are taking part of us away. It is a new normal, so new I know of nothing else. Our government has not caught up with this new normal, our citizens have not. I was lucky enough to have worked in a union that fought for LTD insurance. I shudder to think what may become of others who stand, unknowingly, on the illness rug.  

The wife of this new couple said, "We were so healthy. We never thought we would need that kind of insurance." (FYI, if you ever DO buy it, buy the largest policy you can afford---a mistake I foolishly made during a marvelous MS remission, so arrogant that day, why, *I* was going to be just fine!)

Within minutes I could tell that they were here for her. She couldn't go it alone with him anymore. That is a hard fact to admit. I patted her, saying all I could about ways they might be able to make it work out okay. But I looked them both in their eyes when I told them that all they knew of their life together was over. They now had to live anew, take life one day at a time, one moment at a time. Mr. started speaking, saying with great difficulty something I couldn't understand. I asked him to take his time and repeat.

"Do you promise?" I had told them it would be okay.

"Promise what?" I asked, knowing exactly what he was asking, but wanting to get him in on the conversation.

His head bounced, droll was sneaking out of his mouth and Mrs. quickly wiped his face, "That one day at a time and it will be okay?"

Now, I must be the most gutsy, arrogant, or plain stupid person I know, but I am always ready to defend my positions. I do not speak without thinking. "Yes. I do."

Then he said the most wonderful thing, I will never (barring Alzheimer's or dementia or...) forget: "Then will you take some of my days?" and he laughed.

My smile was huge (I am not a big smiler.), followed by laughter all around the table. At that moment I realized how my brain had arrived at that pronouncement about everything being okay---I had been watching him while everyone spoke, he showed signs of getting the jokes, the witty put-downs of the Hell that our medical system is, the man had his sense of humor intact. 

One does not suddenly find life's tasers humorous after getting a diagnosis of incurable and/or deadly diseases. No, we either had it or we didn't. He has it. He has made his wife laugh many times. She laughs less now. I profoundly understand that, it is much like my own relationship. 

So, a new couple has moved in. I think we will spend much more time talking with each other, reminding each other that our new normal is slower, scary, but still laughable.