A Million Tiny Things
My Experience in Caregiving
"Everything I know, I have learned."
               Renée Norman

Latest Tips & Learnings

Latest NEW Tips !

Tip: If you have long-term care insurance please, please make sure your loved-ones know you have it!  A wonderful colleague who has been a leader in the long-term care insurance industry for 16 years, told me what a big problem this is. Many family members pay out-of-pocket, not knowing their loved one has a LTC policy.  Also, if you are thinking of long-term care insurance, Linda Caruthers said you should be starting your policy when you are between the ages of 40 - 50 years old. If you would like more information from Linda, her website is www.ltccinc.com..

Tip: If getting out is difficult or impossible and you are feeling isolated, please reach out to me through "Contact Us" and/or find a chat room in one of the many organizations out there supporting caregiving. We can't find you, you need to reach out! There are some amazing people out there wanting to help, thank you.."

Tip: Wondering what to do for someone who is not feeling well? In addition to a nice home cooked meal, how about a gift certificate to a "wash n' fold" laundry service that picks up and delivers? No one is comfortable asking another person to clean their dirty laundry! Also, if the person has cancer, there are free housecleaning services available through the non-profit organizations.  Make the phone calls, get the information, then offer to coordinate housecleaning for your friend.

Tip: Many hospitals are starting a program called "Meds to Beds". Dina at the Hospital at the University of Pennsylvania (HUP) was kind enough to explain their program to me. As you know, I write in my book about the importance of being able to follow through on your instructions at home. One of the things I write about is getting your prescriptions for your loved one, while they are still under care at the hospital. You can't have them sit in the car on the way home and you can't leave them once you get them home.

 

Well, finally HUP and other hospitals are making the prescriptions needed for home, easy to fill/get. The earliest possible, ask your nurse/doctor to please submit your prescriptions to their "Meds to Beds" (there may be another name at your hospital) department so your prescriptions will be ready when you/your loved one, are discharged.

Even though you may not know all your prescriptions until the morning of discharge, the earlier you are registered in their program, the quicker you get your medications. Especially where prior authorisations from your insurance are necessary. The earlier you submit your prescriptions, the more time they have for prior authorization. Important: some speciality drugs can take time.

This program helps you follow through on care at home. They have studies showing it reduces re-admission occurrences. It helps you and your loved one continue treatment at home according to your doctor's orders. Your insurance is accepted, refills will be transferred to your home pharmacy and there is no additional cost.

As you know form my book, I explain the importance of using one pharmacy, so they know all your prescriptions and can watch any interactions. Please give your normal pharmacy the names of all the prescriptions the hospital fills for you. Just an extra safety precaution, as well as, a complete list of all your medications will be in one place!

Tip: Fold pieces of paper towel or washclothes to fit your loved-one's forehead or place needing cold, moisten (but not dripping) each cloth, put each in its own baggie and place in the freezer. Generally, I prepare 3 at a time so I always have a cold cloth in a hurry. 

Tip:  If you are doing a self-directed collection of blood prior to surgery (autologous), or a loved one is donating their blood for your use, the timing is tricky. Your doctor's office will direct you how they collect the blood, it varies. If you are doing your blood collection through the American Red Cross, timing is critical. I was told today, they need sixteen business days from time of collection to process the blood and send it to the hospital where surgery is scheduled. Generally, each Red Cross location collects blood one specific day of the week. Your blood has to be less than 30 days old, yet 16 business days plus weekends are required for processing. Start about 40 days prior to surgery, allowing you to get collection scheduled properly no more than 30 days prior to surgery. You may need to go to a location farther than planned, so that you time the collection properly.

Tip: Medicare emergency room visit.  Please, please ask your admitting doctor about your options depending on how they classify you or your loved one's visit. There are two classifications; 1) "inpatient/treatment" or 2) "outpatient/observation". (Different hospitals use different terms.) It affects your billing,  as well as, the three-day inpatient stay requirement for Medicare admission to a skilled nursing facility. THE RULES CAN CHANGE...please ask upon arriving at the Emergency Room/Hospital.

Tip:  The county I live in offers a "Yellow Dot Program" through their senior advocacy office. Please check your county for this simple yet important tool. You put a yellow reflective dot on your rear window on the driver's side/lower corner. This will tell first responders to look in your glove compartment for medical information. Either fill out the yellow dot form, or simply fill out my "ICE, appendix 1" fold it inside the Yellow Dot folder and place it in your glove compartment.

 

Additional Tips From My Book  

Tip:     Please do not visit a sick person at home or the hospital with a lot of perfume, cologne, scented lotions, or deodorant. The scents can cause nausea, difficulty breathing and leave the person smelling of the visitor, requiring an additional bathing.

Tip:     When bringing food to a sick person and their family, please bring it in a container not requiring it to be returned.

Tip:     If you are the recipient of food in a container needing to be returned, ask the person to please wait while you transfer the food into one of your containers. They can then take the container home with them, relieving you of the need to take the time to get it back to them.

Tip:     When staying with your loved one in the hospital, breath mints and gum can come in handy. You may not be drinking or eating, and you may find gum or mints refreshing. Mouthwash for your loved one is also helpful at times.

Tip:  When going to doctor appointments, bring a bottle of water for each of you and a non-smelly snack such as, a granola bar for each of you. Also bring the next dose of medicine due that day. Often medical appointments take much longer than anticipated.

Tip:  Have a variety of candy out on your kitchen table, in addition to nuts. The candy is a fun stress reducer for visitors. A “Happy Zone” as a close friend said.

 

These "Learnings" are the pieces of wisdom learned from

each chapter of my book...

Learning:  Trust but always verify.

Learning:  If you know you are not getting the care you should, insist politely but firmly for the care. Be persistent. Do not leave until you get the care you are comfortable receiving.

Learning:  Write everything down, because it is easy to forget details.

Learning:  Talk to the person you will be caring for from the start. Be clear on what he or she wants. Talk about it on good days, long before anyone is sick.

Learning:  Everyone you come in contact with is important to your care.

Learning:  Admit your ignorance. Learn as much as you can. Let the medical staff know when you don’t understand something and ask them to please explain. Write things down!

Learning:  Don’t talk about a crushing diagnosis until you come to terms with it in your own mind. When it comes to children, get help in how to best communicate a major issue.

Learning:  Don’t underestimate anything you say or do, especially relative to your children.  Turn the experience into a positive learning experience, cultivate coping skills. 

Learning:  The loyalty of your closest friends may be your greatest gift.

Learning:  Everything you do or don’t do matters.

Learning:  Don’t underestimate the impact of a life-changing event on others. Try not to catch them off guard. Respect they have issues to process relative to you and themselves, their fears and their own experiences.

Learning:  Find a way to have completion with those you love.

Learning:  Make sure you can follow through on suggestions and orders independently at home. Make sure you ask questions. Practice your care techniques in front of the professionals. Have them critique you and teach you how to do things the best way possible for all concerned.

Learning:  Register with your local first responders (firemen, EMS, police).

Learning:  Have an up-to-date typed list of medications you are currently taking along with relevant doctors’ names and phone numbers. Include over-the-counter medications in addition to prescription medications. My website www.AMillionTinyThings.com has some suggested formats you can use.

Learning:  Follow the medical professionals’ directions.

Learning:  Keep both a copy of prescriptions given to you by your doctor and the original receipts from the pharmacy, in a section in your binder.

Learning:  Keep a chronological section in your binder. Pick a relevant date and start. Keeping track of any change in medications, symptoms and doctors appointments. It is very helpful for a doctor to look at a chronological list and identify a pattern for diagnostic purposes. Suggested formats are available on my website and are available for you to use for free. In fact, please use them, or use them as a template to make your own.

Learning:  Medical care professionals are human. Treat them the way you want to be treated. Make an effort to develop a great working relationship.

Learning:  Identify healthy boundaries and what works for you and your family. Communicate your boundaries and guidelines, and require others to either honor them or to stay away.

Learning:  Protect yourself legally. Do not underestimate how a vulnerable sick person will be taken advantage of, even by family members. Do not underestimate your need to protect a sick person.

Learning:  It is unfortunate that even family can be destructive when you may need them. 

Learning:  Ask for help from professionals in managing difficult family members. Family members may be your greatest challenge.

Learning:  Don’t be deceived by family or those close to you. Do what is best for your immediate family no matter what.

Learning:  A dying person only wants peace, no matter the cost.

Learning:  Be brave!

Learning:  Try to maintain a sense of normality, in spite of the challenging circumstances.

Learning:  Stretch your mind for options and solutions. Learn and teach coping skills.

Learning:  Make a “Sunshine List” for those who ask to help.

Learning:  Get help with your medical billing.

Learning:  It is necessary that you do what you can to take care of yourself.

Learning:  If you can, get some help a few hours a day – and don’t feel guilty about it. It will help simplify your life.

Learning:  Humor helps. When necessary to help a serious situation, let people know how important something is to you right now.

Learning:  Know that those with ALS (and many terminal diseases) suffer from a diminishing or altered brain function.

Learning:  Appreciate the good that terminal illness brings out in people.

Learning:  To be a caregiver for someone with a terminal illness you must have a thick skin and realize that the sick person does not always act rationally.

Learning:  Expect dysfunctional behavior, don’t play. Be clear on your values and boundaries.

LearningYou see your loved one on a day-to-day basis. For others, the changes in him or her may come as a shock. Don’t underestimate how difficult it might be for others to cope with the illness.

Learning:  A person picks the time they want to pass away.

Learning:  No matter how much preplanning you do, there is a period of chaos when someone dies. Your friends and loved ones often come through in remarkable ways.

Learning:  Find time to reflect with your family. Everything will get done. 

Learning:  You gain strength through challenges and personally benefit from your experiences. Be grateful for what you learn.

Learning:  Not everything you learn about someone terminally ill is pleasant.

Learning:  Prepare yourself for the dysfunction of others that will appear and even be directed at you, the caregiver. You have to deal with the dysfunction. Get help if you need help.

Learning:  Appreciate those who truly are there for you, without a hidden agenda. Those people do exist and are a treasure. 

Learning:  Be grateful for everything you learn from your experiences, no matter how difficult your experiences have been. 

Learning:  Talk with your loved one about end-of-life decisions and be prepared to follow through on these decisions. Have the guts and conviction to make decisions on behalf of your loved one, be clear on his desires. Discuss difficulties you have caring for your loved one, there usually is a solution.

Learning:  Prepare for the surgery waiting room and for the time you will be there. Manage yourself to handle the stress.

Learning:  Be aware a hospital environment has its own special needs. Be overly cautious of infection. Learn what you should and should not do. Make sure you can follow though at home successfully.

Learning:  Be practical, do not be an additional burden.

Learning:  Establish emotional boundaries. Announce your boundaries when necessary.

Learning:  Be honest with your family regarding emotions. Make it safe for your children to be honest with you about their feelings.

Learning:  You cannot be over-prepared and documented. On my website www.AMillionTinyThings.com, I have some sample worksheets in Excel. They are available to download for free if you would like to use them. I personally use, but do not endorse, www.broaderbund.com, family and business lawyer software.

Learning:  There is no such thing as being over prepared.

 

"What would you attempt to do, if you knew you could not fail?"

 


Photo taken just after Chris' diagnosis of ALS/Lou Gehrig's disease, October 2007.

Photo taken by Carolyn Evans