As long-term caretakers of a long-term terminally ill family member, we have devised a few ways to cope with the pressure and frustrations of every day life. Some work. Some don't. Most involve humor.
Several years ago when Mom had lost most of her short-term memory, but was still able to share the long-term stories, we used a simple change-the-answer game. Every night at dinner, and usually several times during dinner, she would ask us our favorite meal. So, our game was to change the answer and think of something that had never been said before.
Each and every night she would also share the story of her walking the fields of her grandparents farm where she "always had a salt shaker" in her pocket. So, on the rare occasions that she didn't share the story, one of us would ask if she had ever been to a farm. She appreciated the interest, we enjoyed a fun way to relieve the stress of the situation.
It's been a while since we have been able to do anything as silly and harmless. There is so much more anger and frustration in this house now. Very little relieves the stress. We are bombarded with the same questions over and over. Often, the question is asked again before we have had time to answer the question. More often, we receive angry responses if we give the "wrong" answer. So, we have decided that tomorrow we will play a game. We are going to keep a list of Mom's favorite things to say. Then we will each choose one of the phrases and "bet" that it will be the phrase of the day.
Here are some of her favorite questions/phrases:
Are you hungry/I haven't eaten in 3 days/I'm hungry
Are you going out/Are you going any where/Can I go with you when you go
Where's that boy/Where did that man go/Where are the kids
Does my family know where I am/Can I go home/Do you know who I am
Do you know that you just got me fired/You just cost me my job
I'm scared
Can I help you
Don't you think it's time to get up/You've slept enough/Get up/I'm hungry
I am aware that to anyone who has never been a caretaker (and possibly to some who have), this may sound callous. It might be .I do know that the words written above are painfully, unbearably sad. But, I hope I am teaching my children alternative ways to cope with an unimaginably frustrating situation. Is it at my Mom's expense? No, I don't think so. If you feel differently, please leave a comment. I welcome other opinions. I also welcome you to choose any one of the phrases above and repeat it over and over to your family. And I do not mean for a couple of minutes. I mean dozens of times. All day. And don't wait for an answer. Just ask it again. And again. Oh, and it's especially appreciated when others are busy or on the phone. Try it. And tell me if I'm callous.
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