4/10/2000

Caregiver 101: Are You Prepared?

By Fran Sinclair

In response to the "A Hospice Story" (3/17/00):

Recently I read the article about Hospice in Insights. I thanked Beth Bruno for having it there and told her about some of my personal experiences with Hospice. She asked me if I would write about those experiences as they relate to what I've learned about dealing with the end of life. Although I am not a professional, I am happy to do so in a personal way.

As any family can tell you, who has used a Hospice worker or become a caregiver, the service they offer is invaluable. It's clear to me at 53 that there is not one person on this planet who does not know the word "cancer." Not everyone knows the word Hospice until they become a caregiver or need this wonderful service.

My work is with seniors, but long before I got involved I lost a dear friend to lung cancer. She was the first of many but also the first to teach me how to deal with losing someone I loved dearly and could not live without. I miss her dreadfully because of the lessons she gave me in life; now I thank her and I have a huge smile on my face because of the gift she has given me to deal with illness and loss.

If there is one word that can help you become a better caregiver or a great one, I think that word is "listen". This word should be followed by prepare, organize, encourage, believe and never give up hope for the cure. Take the time to become an informed and productive caregiver. Your slogan might be, "Get scared then get prepared". There is so much to be learned and shared and no time to be wasted in fear. The tools you will need are simple and you can begin the process by listening and learning.

People have said to me, "I don't know what to say to them." They are your family or friends. The discussions should be the same for them as they would be for those who are well. Sharing your thoughts about your hopes, dreams and fears, joys and sorrows, and yes, the weather, is just more immediate and should not be put off. Take the time to put a plan in place for each step in the process. This will make the passage easier. Then take the time to understand the process and by all means do not put off saying what you are feeling. Find the courage to tell them you don't know what to say or do. Chances are they will put you at ease before you can be of help them. These expressed emotions bring a much-needed positive healing energy to any illness.

You can do so much by researching the particular illness and attending support group meetings. There are many resources out there. I found that being with people who have cancer and hearing how they feel about daily activity is great. They discuss treatment options, eating, sleeping, dressing, insurance issues, legal matters, and all good and bad experiences of daily and hourly living. The meetings are full of tears and laughter for both family and caregivers. You have to remember, the illness they are going through you are going through also. You're in it for the long or short term. They need to know you are there sharing all of the many unknowns, but just sharing.

You need to stay well yourself and do what they cannot. Does that sound selfish? Yes, but if you think about it you'll realize that you can't help anyone if you are not rested, strong and positive although vulnerable too. Then get busy. Take the time to send a personal card or note. Do it now. Visit for a few minutes if you don't have an hour. I used to bring my dog along for my friend who could no longer have one but missed hers. Hold them close or just hold their hand. It feels so great to touch or be touched. If you don't feel you can make a grand gesture, make the small one. Be helpful by just doing a small chore the caregiver would do, like giving them a much-needed break to do the housework or run an errand. You can read a poem or better still a whole book. Just sit and watch television together until they fall asleep. Ask if you can write a letter for them. Talk about their life, past, present and future. You will develop a new and greater love and the knowledge that you do really care. Treat them how you would like to be treated if it you were going through the illness.

I've done all of these things, and I also decided not to put off the tests the doctor recommended. I signed an organ donor card, then held my breath. I got software for making a will. It took about an hour of my time to go through it and then I told my children. I had it notarized and filed it away. They didn't think I had lost it, they were grateful I put it in place. I've learned to be a much better listener and I resist the opportunity to give too much advice. I've taken a great deal with me and perhaps this will help you to do the same.

If you are a Hospice worker or a caregiver, you are a wonderful human being. If you are going through the illness, you are an even more beautiful person. No matter how little or how much you have contributed it will help you go away with a smile on your face knowing you have done not just a good deed but a great one! Good luck, as you go through your journey, and always remember to be happy, stay well, think positive, have that checkup you've been putting off and then you, too, will be prepared.

Please send questions or comments to bbruno@snet.net.