Supportive Care Bulletin
Helpful tips for family caregivers
Decisions and planning: hallmarks of family caregiving. This month, in honor of National Health Care Decisions Day (April 16), we are including an article about where to store an advance directive so it’s available when you need it. We also look at preplanning suggestions when visiting an assisted living community. In addition, we look at questions you can answer and share with the doctor to give him or her a better sense of your loved one’s daily life issues and needs.
- Can you find Mom's advance directive?
- Helping the doctor help you
- Visiting assisted living facilities
Can you find Mom's advance directive?
An advance directive is a legal document. It typically has two components. The first names the person who is to make medical decisions should your relative be unable to do so. The second gives guidance about a person’s wishes for care in the face of serious illness or at the end of life.
If your loved one has completed an advance directive, congratulations! But it’s of no use if you need it on a weekend and it’s locked away in a safe deposit box. Or at the lawyer’s office. You want the paperwork to be accessible 24/7. And ideally you want it available wherever your loved one happens to be.
Don’t hide this important document!
- Distribute many copies. Give a copy to whoever is named as health care decision maker and to any backup decision makers. In addition, your relative’s primary care doctor should have a copy. So should involved specialists and the local hospital. Consider all other involved family members. Also, any home care agency providing services.
- Store the original. Put the original, signed document in an easy-to-find place at your relative’s home. For example, create and label a “Medical Emergencies” file. Put it in the top desk drawer or at the front of the file cabinet.
- Consider using a national service. They charge a fee. But documents are available anytime from nearly anywhere. Plus the centralized location simplifies the distribution of updates. The U.S. Living Will Registry, for instance, is a secure, online service. It allows for Internet access by verified medical personnel. MedicAlert is similar. Your loved one receives a bracelet with an ID number. Verified medical providers can phone in to have the document faxed to them.
After putting so much time and thought into end-of-life preferences, let your relative’s advance directive serve its purpose. Make sure it’s easily available at the time of need.
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Helping the doctor help you
These days health is defined as more than the absence of disease. Good health includes
- physical well-being (having the ability to do activities)
- mental well-being (feeling clear headed and emotionally stable)
- social well-being (enjoying meaningful relationships and pastimes)
Doctors are prepared to help in all these arenas, but they can’t get started without your input. Lab reports do not reveal quality of life and general well-being! Doctors need your report from home. Plan ahead for your visit by preparing the following:
Describe the troubling physical symptoms. Some may be from the disease. But some may be treatment side effects! Describe the severity of the symptom using a scale of 0 to 10. (0 = no problem. 10 = the most severe possible.) Consider pain, nausea, fatigue, shortness of breath, diarrhea, or constipation.
Describe the difficult emotional issues. In the context of a serious illness, strong emotions are common, and understandable. But that does not mean they should not be treated! Is your relative depressed? Anxious? Irritable? Confused? Again, for each one, use the 0 to 10 scale to rate the intensity of your relative’s emotion.
Describe how health challenges are affecting meaningful life activities.
- Dad loves playing bridge, but his glaucoma means he can no longer see the cards.
- Mom loves to garden, but arthritis is now making it too painful.
Make a wish list of services that would be helpful. Include things that would help you, too. Perhaps transportation for your relative or financial assistance with the cost of medications.
Keep your report short and focused. Identify the top three priorities in each area before talking with the doctor.
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Visiting assisted living facilities
Getting your relative’s buy-in is essential before moving him or her to assisted living. That means making a round of visits to find the place that elicits a “yes!”
Lay some groundwork first.
- Prescreen every facility on your list. Have pricing, floor plan, and residents’ rules mailed to you. Better yet, pick them up, and take a preliminary tour. Draw up questions for each facility.
- Pick three facilities to visit with your relative. Try to sample a breadth of prices and styles so your loved one can compare the differences. It may help to show your favorite one last.
Clarify the purpose of the visit.
- Has your relative agreed to a move? Great. Then you are visiting to “find the place that’s right for you.”
- If your relative is still tentative, go easy. Make it clear the goal is educational, to “just look and see what’s out there.”
Maximize the usefulness of the visit.
- Go when things are happening. Check the activities schedule. Visit when you can observe an activity of interest to your relative. Music? Exercise? Bingo?
- Sit down and eat. Schedule to visit at mealtime, if possible. (Most facilities will gladly host at no charge.) This is an opportunity to sample the cuisine as well as mingle with residents.
- Meet a resident. Arrange to meet a resident or sit with residents for a meal. Ask for opinions about the plusses and minuses of the place. Encourage your family member to do the talking.
- Address the key questions. Make sure your relative’s particular concerns are answered. What issues have come up? Pet policies? Meal times?
Pause before signing a contract.
It may be tempting to forge ahead if your relative sounds positive about a facility. Instead, take the contract home and check to see that it includes everything that’s been promised during the tour and in brochures. Consider having it reviewed by an attorney.
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