::: January 2006 :::

Q. Dear Frannie, I am married with two small children. My husband works full time and I am very nearly bedridden. How can I take care of my children while being so sick? I am not the kind that asks for help, and I find that very hard to do. What can I do?

A. When motherhood is going smoothly, to some on the outside it seems like a simple task. However, one only has to be a mother to know that isn't so. Motherhood involves impeccable organizational skills, compassion, patience, love and intellect. The world begins with motherhood, and the future depends upon it. A simple task, no. It is quite complicated and intense for anyone who takes it seriously.

Because so much depends upon mothers and it is a full time job for some even with other full time jobs, when one gets sick they cannot do all what they did before. Yes, there are many expectations that other family members have of you. And your first response is to care for your children before you care for yourself. But how can you care for your children if you don't care for yourself?

I remember being in this exact place with two toddlers running around my bedside. I spent many hours mothering them from my bed, year after year. As they grew older, and they attended school, we would have snack on my bed, and do homework from my bedside. I spent as much awake time as possible with the children, and tried to be as encouraging as I could. I did not have a support system, it was up to my husband and I. My family was not willing to help and I had not yet established friendships in the new town I lived in.

Most of you will not be in the above situation. Many of you have family members who will want to help you. Ask them if they might come and spend some active time with your children, playing ball and hide and go seek and doing things that you are not able to do. Ask friends if they might come by and cook for the family or bring meals on occasions. Everything a loved one does to help you, goes a long long way.

On weekends if your husband cooks, have him double the recipes to freeze and have during the week as well. Just two meals doubled and frozen provide two more meals for the weekdays. Don't worry about having a tidy house. Clean bathrooms and kitchens, but leave the items on the carpet and teach the children how to do their own cleanup work.

Being ill many times is always about letting go. You will need to set your priorities and let go of the things that cannot be done. Your basic priorities are food, clean clothes, time with your children so that they can feel safe, loved, nurtured and inspired, and basic cleanliness. Tidiness, and cooking elaborate meals are not a necessity. Let go of what cannot be done. Do the best you can within your limitations without hurting yourself.

Yes, its a hard situation, but you must call upon the people who wish to help. One day, you may be able to return the favor, because of their nurturing and caring for you. Make that one of your goals. Your other goals are to be there forever for your husband and children, and in order to do so, you must now care for yourself.


Q. Dear Frannie, When my friends and family members find out that I am ill, they tell me that there are better answers than seeing my doctors. Each one has a particular remedy that they would like for me to use. How can I tell them that I have a real medical illness and I need my medication? Or should I be trying their holistic methods?

Frannies response: Your friends and family members are not you, and are not physicians. They are observers who are outside of your body, telling you how you should feel and what you should do to feel that way. As you know giving advice is easy. Being the patient, is not. And giving medical advice to someone with an illness is not a good idea.

Only your doctor knows your condition. And anything you take outside of what is prescribed by you doctor should go through your doctor. There are many contraindications and conflicts when holistic medications are taken with prescription medications. And there may be conflicts between your physical health and things in these holistic medications that only your doctor would know about.

My point of view is that holistic medicine is great when you have nothing to lose or you have something which does not respond to medication, and has been checked out by a physician. But when you have a medical diagnosis and are under medical care, then your PCP needs to be the one watching the things you take and what happens as a response to taking them.

Don't let your friends and family members double as doctors. Tell them that you already have a doctor, and he is doing fine. And if something they say sounds interesting or perhaps something your doctor overlooked, then speak to your doctor about it. Not doing so, can be dangerous.

Dr Levine's response:It is nice that your friends want to contribute to your care, but it is easy for them to offer without having any responsibilities for the consequences. If I did that you could sue me. If you like your doctor, and feel that he/she is on the right track with your illness, discuss these opinions with him/her. Some alternative therapies can be helpful, some harmful … just like pharmacologics that we prescribe. Talk to a professional, even an alternative non-physician provider, rather than ‘trying things’ offered by well meaning friends who do not really know what is wrong with you.
Joel S. Levine MD, is from University of Colorado Health Sciences Center, in Denver, Colorado. He is a Gastroenterologist and Internal Medicine doctor who deals with many patients with Chronic Illness. He is a great patient, family and medical advocate. As always, I thank Dr Levine for this month's contribution.


Q. Dear Frannie, I am a caregiver and I feel my wife slipping away from me. Her whole life is her illness. She spends all day on the Internet researching her illness and speaking to others who are sick as well. I feel like she has left "our world" and is now in a world of her own, one she will never come back from.

A. I understand your feelings of loss and your concern for your wife. I also understand your concern for your future sharing with your wife. These are valid concerns and are felt by many people who take care of sick loved ones.

But the truth of the situation is that your wife has a real illness and she is frightened, feeling helpless and alone, much like you are. She is reaching out to others who feel as she does, for support, and to increase her knowledge and power as a medical consumer.

On the healing path we all go through periods when support from others with our illness becomes priority. Sometimes when a new symptom arises, or a new medication is given, it is natural to research on the Internet or with others who have had similar experiences. The danger point comes when one with a chronic illness uses the Internet to substitute for the real, active world, when family members and friends are living in the home. Or a person with a chronic illness becomes "stuck" on the road to healing because they are too afraid to move forward, and take a new step. The patient needs reminding that loved ones are close by willing to listen, and to help in any way they can.

Its hard for the one who is ill, and hard for the ones who care for them. Without good communication during times of stress and times of difficulty, it can almost appear as if the person with illness is "slipping away" from loved ones.

Tell your partner that you love her and that you are missing interaction with her. Explain that you are there to listen, and will help to research things with her. Find ways to share your lives that are not a physical strain to the one who is ill, and provide support for both of you. Some things that you might try doing together:

1. Reading to each other, a novel or a book that you both enjoy. Poetry and inspirational reading can be something that may bring you together. The book, The Power of Now, by Eckhart Tolle, or Stillness Speaks by Eckhart Tolle are suggestions, to help you both to learn how to live in the present and use this time for total healing.
2. Watching DVDs together
3. Keeping a Journal together
4. Watch sports together
5. Writing letters to one another when you are not together.
6: Setting health goals together. Set priorities, and make a plan.

Make sure that part of the time you spend with your loved one is spent on talking together and better communication.

Frank's reply: Your wife is on the road to self-advocacy. It is much better for her to be in a position where she still has initiative and is trying to find a way to combat her illness, than one of apathy. Coping with an illness takes time to adjust. At the same time, its not good for anyone to obsess on one thing alone. She needs to allow enough time for the two of you to have a relationship. Communication is the key like in any other aspect of marriage.

We thank Frannie's husband Frank for his input in the caregiver corner.
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Life-raft concept for the month:

"People are like stained glass windows. They sparkle and shine when the sun is out but when the darkness sets in, their true beauty is revealed only if there is a light from within " - Elizabeth Kubler-Ross

The new year brings with it a certain relief that some things are in the past, and for those with illness a certain anxiety of what lies ahead in the future. I spent many years thinking to myself on December 31st that the next year might bring more pain and suffering. It was only after a while that I realized, thinking that way helped to make it so.

One of the many lessons I have learned through illness is that life has become too complex. Sick or well we use our minds more than we use our hearts. We complicate our schedules adding more tasks in a day than are humanly possible. We find the special moments in our memories instead of in our present. Many are so wound up in routine that it has been years since they have seen a sunrise. The "heart" of living has been lost in the shuffle of just existing.

Now is your time to find the beauty in your life. For some it comes easier than others. Today I want to talk about finding the beauty through simplifying your life. Instead of going through the motions trying to do a thousand things, I inspire you to try living in the moment and do fewer things.

When I work with patients who are very ill or dying, I often speak about the beauty of the moment. I talk with them about watching the sun's reflections on the window glass, and the artistic shadows that the trees create. I speak with them about watching the squirrels gather nuts and find food, and hearing the voices of the geese fly overhead from one lake to another. Simple things, simple pleasures. The softness of the blanket beneath you, the sound of the music the wind makes. These are things we all take for granted when life becomes so busy, so painful, unexpected and so anxiety-ridden.

The beauty of the earth can be felt deep within us. When we see the red and orange of a sunrise, and spend a moment reflecting upon that, it energizes our soul. When we spend time perceiving the beauty of a tree and the colorful birds that live inside of it, we can feel a special love arise from deep within us. These are the moments that make us sparkle. These are the things that philosophers reflect and write about. This is the stuff that life is made of.

Look at yourself in the mirror. Has your life become routine, mundane and are you merely going from task to task? Do you see your worth and beauty dependent upon your productivity instead of your sparkling soul? Can you see and feel the sunshine deep within you?

It is easy during times of happiness to see the good in everything. But in times of illness, fear or sadness it seems that only the worst things are reflected in our lives. Try making space for the beauty, nature, sunshine and simpler moments. Try turning those simple moments into moments of special pleasure. And as your day progresses, those moments will stand out to you as a thing of beauty. They will show you that your life is worth living. They will make you sparkle and shine much like the sparkling and shining light you observe in the window at sunrise.

As the fire I am sitting by is smoking, I smell the fragrance of its inner essence. The wood has to be burning hot before this happens. Pain brings you closer to your inner essence, closer to who you really are. Suffering brings us closer to it as well. On the other side of happiness is suffering. On the other side of suffering is happiness. Suffering can be our greatest spiritual teacher. Many are changed forever by it. I was. Some are changed for the better. Many learn how to shine brighter than they ever did before.

Learn to shine from within by creating special, simple moments for yourself. Share these moments with ones you love. Take simple melodies and make them into symphonies. Go deep into your inner being to find the sweet loving spirit inside of you. Let go of negativity, use your inner spirit to shine brightly and surprise yourself.

Its a new year of wondrous possibilities and infinitely beautiful sunrises.

I assure you, better days are ahead of you.

Let us walk down this healing road together.
Always with peace and love,
Frannie

Frannie Rose, author of Fixing Frannie, available online at www.amazon.com and www.barnesandnoble.com is a Patient-Advocate, Inspirational Speaker and Writer on issues relating to keeping your spirit alive when dealing with chronic illness, and the medical system today.  Copyright 2004 Frannie Rose. All rights reserved.

-To send a question, send an email to FrannieRose12@aol.com.  You will receive a private answer and some questions will be published in this weekly column, anonymously.

isclaimer: Frannie Rose strongly urges list members to consult a health care professional on all medical treatment issues. Do not substitute any of the above information for that of your physician or health care provider regarding your medical condition.