Wednesday, September 24, 2008


Even though I canot do everything perfectly for myself or my loved one, I deeply and totally accept and love myself.

The Color Coded Purse: What to Pack for Your Body, Mind and Spirit During a Loved One's Hospital Stay

If you have a loved one in the hospital, you might want to read an article I once wrote about navigating hospitalizations. I view this very seriously, because it takes every skill one has, every emotional strength and attitude adjusting ability to stay on top of this type of transforming life event. Of course I wrote this for challenging hospitalizations, not for the wonderful ones like when a loved one has a well baby.

Tips for Preparing for Hospitalization of Loved One (If You Know of Hospitalization in Advance)

1. Take a tour of the medical center in advance, to add to your sense of security, and reduce anxiety. Get familiar with the eating establishments, what is located where, and what hours they are open. Ask for the hospital information booklet that has directions, phones numbers.

2. You can call the hospital and ask for a security person, a social worker, a chaplain, to ask questions that help familiarize you with the hospital culture, policies, parking, services, routines, lay-out. You may make friendly, helpful connections, and find a familiar person at the hospital.

3. If various people are helping you with such things as your house, children, plants, cats and dogs, snake, frog, type a list with address and phone number of hospital, directions to hospital, and phone numbers of people involved, and e-mail list to all people helping.

4. Be as good to yourself as possible the week or two before the hospitalization, if it is a planned hospitalization. Get a massage. Avoid difficult people. (It is not unusual for a relative or two to behave badly at the worst times [don’t let it rob your peace] or for someone to be an angel out of the blue).

5. If you call a doctor or nurse and they do not call you back, avoid taking it personally, and focus on getting the answers. If ten calls fall through the cracks, and you keep asking why, you can get very stressed out. Ask what you can learn, such as that you can be perseverant in contacting medical staff to get whatever questions you have about the medical condition/procedure/hospitalization answered (call morning and evening, or five times a day, or very early or late if necessary).

Surgery dates are not written in stone: if you need one changed, call to arrange it. Call to confirm scheduled surgery/procedure date. If you have doctors at different hospitals, even if they have different specializations, do not rely on them to get on the same page; make certain they have the same agenda, especially for surgeries/procedures, and that they have each other’s cell phones. Have surgeons spell out for you what their plans and contingency plans are for a surgery.

You are needed to be a kind of care coordinator; the staff/doctor may be busy, unable to reach your other doctor, or otherwise not get around to it even if they intended to and told you they would. Doctors may have many pressures and patients, in a medical center environment which may be in the red and cost-conscious.

6. Consider the team approach: ask close relative(s) and/or friend(s) or members of faith community to be on the team to support your loved one, to take shifts with you in staying in the hospital to care for and advocate full-time when your loved one is hospitalized, or at least sedated or not fully themselves. {Call in the troops; it could prevent one person from getting post-traumatic stress disorder). Nurse’s aides and nurses are sometimes too busy to provide personal care desired. I believe if the person hospitalized is very close to you, it can help for you to have a support person there for you, at least for the days of a major surgery, to help with practical things and to ground and support you.

7. Attach a spiral purse-sized notebook to your purse, where you write down information, or put all notes in your daily organizer or wherever you keep things to be organized. The notebook is for keeping with you to write down notes on what doctors say, on the spot, such as mid-surgery, and during rounds. Men might want to keep a tiny pad of paper in their pants pocket.

Also collect doctors' business cards for correct spelling and fax numbers. Ask how to reach doctors generally, and at nights, on week-ends and holidays. Your notebook, or your scheduler, will keep numbers of medical team, and people, therapist, organizations you might want to call for support. (It also can be used as a journal for keeping favorite inspiring quotes, happy photos, reminders, a stress balancing plan, pages for journaling, and your ongoing, dated, lists of questions and staff’s answers).

8. Feel free to ask friends, relatives, faith community for help and give them an opportunity to reap the rewards of service. I asked a friend how often I could call, and she said daily, any time day or night – was I happily surprised! Perhaps you need a meal, people gathered around your loved one or yourself to pray the night before chemo or surgery, help getting the house in order to feel sane, or prayers. If you ask, the most wonderful people may come over to help, and be companions so you do not feel alone.

What to Bring to Hospital for You and Your Loved One

1. Copies of previous tests, reports, and films (helps to buy films if illness could be progressive).

2. Comfortable, breathable fabric, clothes than can double as pajamas, if you stay over in room or lounge, and change of clothes - include hooded sweat shirt for warmth (especially if your loved one goes to the ICU and you sleep in a waiting room), and slip on shoes, for getting up at night. A few days’ supply of underwear.

3. Toiletries in an Organizer, placed in a tote bag - 1) Little boxes of soap, shampoo, conditioner; shower cap; deodorant; 2) mini tooth brush and tooth paste, mouth wash; 3) make-up; 4) nail care; 5) brush and comb, organic lavender lotion (or your favorite type) and massage oil to massage loved one and give self foot massage; 6) side pockets can hold packets of herb tea (e.g. Chamomile, Tension Tamer, Chai), spare socks, thank you cards, stationary and stamps. (I also included natural homeopathic and flower remedies such as Rescue Remedy - a few drops in water bottle, and 5HTP Calm - to reduce my anxiety). Organize in travel bag with multiple see-through and mesh compartments, like the Studio Basic's Overnight Pack.

Place overnight pack in a tote bag containing soft toilet paper and soft tissues, natural room spray, your filled vitamin box, water bottles and your favorite crafts/hobbies: knitting, magazines or projects, described below. Also include a notebook with copies of previous labs and test results, any discharge summaries, and current medications, (Some people have notebooks with copies of all records from doctors’ offices and from hospitalizations – obtained through Medical Records). A separate bag will be needed for your food, and food your loved one likes that fits in with the diet ordered by the M.D. This bag may or may not fit in your large tote bag. Any films from cat-scans, MRI’s…will be large, needing a bag of their own (could use a portfolio carrier) or carried by themselves.

4. Music: Radio, 2 CD player/cassette/"walkman" players, headphones for you and loved one, favorite CD's, tapes.

5. Favorite foods, drinks, teas. I included some fresh foods like red peppers and baby carrots, with ranch dip, potatoes, and salsa. Fresh food is pleasant to eat in the hospital, consider fruit salad. Treat foods are nice, such as quiche, and bottled water. Most hospitals have a little fridge and microwave in a pantry for guests. If caregiver stays at a hotel, a refrigerator can be requested. Next time I would bring a small blender as I like smoothies.

6. Knitting, crocheting, a handi-craft, short project, and/or favorite magazine, book of humor or short stories, and your MOST inspiring literature and/or tapes/CD's (may include something from your religion/spiritual path that gives meaning to illness/life challenges, and a tape that includes subliminal messages for recovering from surgery or illness), and videos or CD’s of movies. A flashlight. As you know, a caregiver can read an article or chapter, or do a project, while waiting for the loved one to get out of a test or procedure or while sitting in the room or lounge, and can be adaptable to stop for when a doctor, meal, visitor arrives. The flashlight is for night or early morning, setting up your music, journaling, reading including your most inspiring quote, poem, or sacred book, praying, meditating, and reflecting.

Sometimes people are so on remote control, focused, or with so much adrenaline and other stress chemicals, hyper-alert and juggling so many things, that they can’t read, pray and meditate in their usual way in the hospital – but can benefit from being in nature, looking out a window onto nature, taking a shower, writing a poem, using some physical relaxation method or some other way they find they can get connected.

7. Purse - with lots of compartments & attached cell phone carrier, and change purse with key chain attached (or other large key chain, to find easily), stocked with cash for cafeteria, phone card in case hospital has a policy against using cell phones, protein bars or other snacks to tide you over in case of an emergency room visit, and breath mints for close contact with your loved one. Keep everything, including spiral notebook, in purse at all times.

8. Lap-top computer - Some people like to bring theirs for projects, research, passing time, etc…

9. Photos and decorations for making hospital room a healing center, and dry erase markers (one medical center did not write the names of nurses on white board as people stole their dry erase pens). Pack photo of loved one in a setting they love, family photos, cards, quotes, that you and your loved one love, and place at bedside or on bulletin board, to inspire and heal you and your loved one. I put up a large poster of a rural farm house and stream, and brought in a lush green plant, as my husband has allergies to flowers. We hung a crystal by the window. Bring natural items of beauty or scent that you like to balance the hospital environment:: a sea shell, a peacock feather, a little Zen sandbox with a rake, a bouquet of lavender, sage and other fragrant herbs, grapefruit oil, herbal tea…

10. Bedding and bathrobe, slippers - Some people like to bring blanket, pillow and a few softer sheets (some hospitals have rough sheets) for the bed, from home, for their loved one. (A caregiver might have a preference for having their own pillow and blanket, too, if planning to stay over)

11. Gifts and thank-you for staff, loved one, for yourself. We gave small gifts/note cards to staff who was especially helpful, and gifts for unit, such as a placard we helped color, that said "Care" on it, Uniball© pens (they are like gold in a medical center]. According to medical center policies, gifts for staff need to be perishable - flowers, food, ordering a dinner delivered for nurses. Presents for your loved one, or for yourself – your loved one may be too sedated to thank you - might be a pretty new journal, a new lotion, music or book on tape, a pretty shirt with favorite colors; unwrap your presents when you need one.

Support for You Supporting Your Loved One in the Hospital

1. Soon after you arrive, scout out, or ask nurse or other families for locations of family pantries, lounges, family rooms, available cots, linen closet.

2. Monitor for safety and comfort: medications and dosages, any reactions; ordered tests done on time, nutrition correct as ordered; adequate blankets for procedures... Advocate in person for adequate sedation if test painful.

3. When doctors make rounds, briefly summarize what other doctors have told you. Be prepared to discuss clearly and concisely your list of questions, and let doctors know you have a list of questions in the first minutes of seeing them (they may only stop by for three minutes and may not ask if you have questions; you can supply them with a copy to refer to, or give nurse a dated copy to give to doctor). Remember that you are an important part of the team, with a unique perspective from being with your loved one consistently, and being familiar with what has gone on. Your love for the person hospitalized may be the strongest healing force involved. Even if you feel intimidated by a doctor, remember, they are not God, and it is normal not to understand medical terminology, especially when stressed. Feel free to keep asking. (It is normal to feel stupid).

4. A positive, grateful approach can bring out the best in people, and keep you less stressed. Nurses, social workers, chaplains, case mangers, can be helpful allies. If I had to give one piece of advice it would be: focus on being courteous, e.g. “Would you be so kind as to….?” A natural, and mutually beneficial way to do this is to make a connection with the staff person, by empathizing about their day or shift, asking how they are doing, noticing something in common. Ask and ask again as needed to prevent requests from falling into black holes.

One experienced nurse recommended standing at the nurse station with your request, if you want to be helped. She reiterated that the squeaky wheel only gets the grease. Squeaking early on can prevent being resentful and angry later. Be prepared to keep asking sweetly, with gratitude, as much as you need to, and to be more assertive than you have ever been in your entire life. My uncle who is a rabbi considers nurses as healing angels from God, and my aunt brings them home-baked treats; they came back from my uncle’s hospital stay with only positive things to say about the staff and the experience. Another uncle gave huge amounts of appreciation and even tips to staff – and people went out of their way to help him.

5. Find a safe, loving, and even creative way to feel and express feelings. Unexpressed feelings don't go away, but can come out in unexpected ways. One way is to share the real thoughts and feelings with someone who is both loving and honest. If they have experience with having a family member ill, or with hospitalizations, all the better. You want to be wise open up to people who have been consistently trustworthy.

Sometimes it is a dance to feel out who you feel comfortable talking about what to, and to trust it. The support may come from a hospital social worker, therapist, family member, friend, chaplain, telephone counselor from an organization related to your loved one's illness, person of your faith, and/or a support group.

In my particular situation, dealing with an ongoing illness of my loved one, I found it very helpful to find a touching piece of music that made me cry and listen to it over and over again, getting out my tears. I also found going to a expressive moment class (in this case based on the work of Gabrielle Roth, and her Five Rhythms work, including many tyles of music), writing poems, and doing journaling, including with free drawing, accesses different layers of feeling, and movis through mental barriers and stuck places into new awarenesses in a way that is surprising, and comes from within.

6. Do something relaxing and/or inspiring before going to sleep, whether it is taking deep, comfortable breaths, progressive relaxation, listening to a soothing tape, praying, or giving yourself a foot massage. Be open to healing, strength, and wisdom during your sleep.

7. When you are out of sorts, feel out how much space you need: try leaving the room, going down the hall, taking a walk outside, calling a friend/therapist; or going home for a break: to take a bath, hug the cat/child, and/or go to the hairdresser or masseuse. I felt bad leaving, but came back after a long stay in a massage chair, with a new cute hair-cut , and my husband told me I looked beautiful. Wow.

8. If your loved one is grumpy, don't take it personally. You and loved one may have different styles, and under stress of the hospitalization, conflicts can occur, sometimes over loved one wanting autonomy, but dealing with having limited independence.

9. When you stay over: arrange treats for yourself in hospital: have food delivered, rent movies, asks a friend to visit for you even if your loved one is not up for a visit. Take a nice hot shower to relieve stress. Visit with other pleasant family members/friends who are at the hospital for their loved ones. They can be an informal support group. Open presents you have brought for yourself, when you need one.

10. Whatever you are feeling, however strange, is normal. Give yourself understanding for anything you are feeling, even if it seems bizarre. You may feel strange to yourself and neurotic tendencies and regression might surface under these stresses. You may feel like you are on remote-control, hyper-alert, and anyone who tries to be intellectual with you might not make any sense. Feeling strange is part of the response during stress and crisis times. On the positive side, you may be more present, in the moment, where you can appreciate a smile, a pretty scrub outfit, a rose, a view out a window.

11. Don’t hesitate to ask for anything: all you can get it a yes or no. We asked for a room with a view, and when it was available, received it, and it made a difference to my husband. When our to be adopted daughter was born, we asked for a room for the night to be with her and received it. When my husband wanted to be discharged on a Sunday and there was no discharge planner available, we asked the head nurse and we got it done. I have seen people create their own realities at hospitals, such as a mom with a newborn in ICU who lived locally camping out in a family room reserved for out of town families, because it was essential for her that she be there.

12. You and your team members are the ones who can put the lip moisturizer on your loved one, massage their feet, read or sing to them, get the headphones and CD set up, go get a needed pad or blanket, adjust the room temperature, ask staff for something they need, tell staff they are not ready to be discharged if you are seeing signs of that. You are the ones that can advocate if there is a need; the nurse’s aides and nurses might be too busy. At the least, you may be preventing them being more stressed in an already stressful situation, and from slipping backwards. At the most, you could be saving your loved one’s life. Trust your intuiton and err on the side of speaking your truth.

While I sincerely hope you gain one or more helpful tips from this article, one that will be useful for you or someone else, and may be remembered at some later date when needed, you may find yourself at an ER, a medical center, an ICU, supporting someone, with nothing on any of these lists, no color coded purse. In that instance, you are the color coded purse. You are the best resource. Your presence, your instincts, your kindness, your ability to connect with staff, with your loved one, to focus on getting what your loved one needs and not react to the five things that are not happening like you might like them to, are the most important things you will need.

Friends, to be always ready for an emergency in such situations, you need to keep on top of giving yourself some care, some pleasures. As feasible, take big portions of things like: sunlight, sitting in nature, tea, your own hair cuts and dentist and health visits, showers, music, massage chairs, clean underwear, holding hands with friend, speaking to loving friend on phone. And don't feel guilty for not doing this perfectly. There is no perfection here, we all make mistakes and have delays with caring for ourselves and for our loved ones.

Best wishes to you and honoring you for your helpful, devoted services to your loved one, and for caring for your sweet self, in advance.

Remember Gary Craig's (EFT) wonderful affirmation formula, applied here as: Even though I canot do everything perfectly for myself or my loved one, I deeply and totally accept and love myself.
Claudia Gold-Fanning c 2008

I am currently offering consultations and presentations on The Color Coded Purse, through my company Foundations for Excellence, and have a forthcoming book on the subject. I can be reached at (310) 514-2484. You are free to quote from this article if you include author's name and title of work it is from.

1 comment:

Sari said...

This is really good, Claudia. I wish I had read something like this when I was dealing with all of Joe's (many) hospitalizations.