by Alan Coleman

From the beginning, remember this: Yes is not a dirty word. There is one question that you will hear often, “Is there anything I can do to help?” You need to get in the habit of answering that question with Yes. There are two reasons to do so.

1. At the beginning of your caregiving experience, it might be that you don’t actually need the person’s help. In fact, you may feel that accepting their offer will impose upon them — even though they volunteered the offer. But the people that love you and your loved one will feel an overwhelming sense of helplessness regarding your loved one’s condition and they truly want to help. They actually need to help you more than you need their help, so start saying Yes from the beginning. Don’t deny them the privilege and satisfaction of taking part in your caregiving responsibilities.
2. Even if you do not need the help initially, your loved one’s condition may eventually reach a point that extra help will be necessary to care for them properly. If you’re already in the habit of saying Yes, then it will be natural to continue doing so at that point of need. If you haven’t been accepting offers of help, it can be difficult to start ... especially with people that you may have declined several times. In fact, if turned down a couple of times, some people will quit offering because they don’t want to seem intrusive.
3. Just say Yes ... it’ll help everybody involved.

Make a list

Not only do you need to say Yes, but you need to be able to answer the next question you’ll hear: “Okay, what can I do?” To answer this question, you need to make a list. Before you start your list, understand this: the help you get from others DOES NOT have to be direct care for your loved one. It can be anything you do in your daily routine that can be done by someone else. When you start your list, think of it as a diary of everything you do for a week ... and I do mean EVERYTHING. Start in the morning when you first get out of bed and list everything you do for your loved one AND everything you do for yourself all day long until you’re back in bed at night. As the week goes on, you can leave off things that you’ve already put on the list. For instance, if you go to the mailbox every day, just list it one time. At the end of the week, eliminate any items that repeat.

Then you are going to remove anything on the list that is physically impossible for someone else to do. For instance, nobody but you can go to the bathroom for you (remember, I said EVERYTHING goes on the list). Next, remove anything from the list that your loved one simply prefers that you do. There were some bathroom chores that my wife, Dink, didn’t mind other people doing for her and those stayed on the list. There were other bathroom chores that Dink did not feel comfortable with anyone BUT me doing, so those things came off the list.

What you should have at this point is a list ... preferably a long one ... of everything you do that can be done by someone else. Actually, what you have is the initial list. You should never consider your list as being “completed.” Add to the list constantly as your daily routine changes and always keep a few copies of the list with you so you can give them to people who ask.

Now you’re set. When anyone asks what they can do to help, whip out the list and let them choose.

Bring in the cavalry

The extent to which you need outside help with your caregiving responsibilities is going to vary depending on the nature of your loved one’s condition. If your loved one has a degenerative disease, like Dink’s ALS, then having outside help will be critical to the success of your caregiving efforts. In fact, you will not be able to do it alone ... there’s just not enough hours in the day and you simply don’t have enough hands! Obviously the solution is to recruit as much help as you can, but what is not so obvious is that you may have to recruit help to handle all the help you get.

We had some wonderful people step to the plate for just that purpose. A lady at our church volunteered to organize all the meals that people brought to us. It was awesome. When anybody came up to me and said they wanted to bring us a meal, I told them to go talk to Judy. I never had to worry about it ... all I had to do was be at home when the meals were delivered. Two other ladies — one from church and one from Dink’s work — volunteered to coordinate the sitters that came in to stay with Dink when she could no longer be alone while I was at work. They handled everything from recruiting to training to scheduling the ladies that we came to call “Dink’s Angels.” There’s no telling how much stress they took off my shoulders as the efforts of all of these people allowed me to concentrate on taking care of Dink.

You can find volunteers among any group of people to which you belong. Your workplace. Your loved one’s workplace. Your church. Social or business clubs. Obviously family — Dink’s entire family gathered monthly to clean our house and do yard work. Just put the word out that you need help, identify key people who will be willing to help you manage the help you get, then turn those responsibilities over so you can concentrate on caring for your loved one. Remember, the goal is for your loved one to be cared for, not for you to martyr yourself to their care. Which leads to my next point.

Take care of yourself

This was the hardest thing of all for me to do when I was taking care of Dink. But it’s also the most important thing you can do. If you don’t take care of yourself, you won’t be able to give your loved one the best care you’re capable of. It’s just that simple. I know ... there will be times — many times — that you will feel guilty about doing things that you used to do with your loved one. Or doing things that your loved one simply can’t do anymore. But you have to do those things to keep yourself healthy ... in mind as well as in body.

Arrange times that someone else can stay with your loved one for a few hours while you get away, BUT, don’t use those hours to do things on the list you made! This time is for you to get away, get rested and get rejuvenated. Go for a drive. Go to a park. Go to the library and read something pleasurable. Go for a walk, run, bicycle ride, swim, workout, or whatever else you enjoy doing to keep yourself fit. If you have a hobby, concentrate on it for a while. Go see a sappy movie. What you do is up to you, just be sure that you do something for your own well-being.

I can’t help thinking about those goofy instructions you hear every time you get on an airplane. Put YOUR [oxygen] mask on first, then take care of the other person. It’s important enough to repeat: If you don’t take care of yourself, you can’t take care of someone else.

(Reprinted with permission by Alan Coleman, author of "Firmly in His Hands: Smugs and Hooches, Dink," 2002.)