Supportive Care Bulletin
Helpful tips for family caregivers
National Healthcare Decisions Day is April 16th. This year we turn our attention to discussing advance care planning in the context of dementia. It’s a sensitive topic, but we provide you with ideas to make it easier. Other tips to ease your life include finding the right phone to address a loved one’s disability, and suggestions for working with hospital staff so your relative can sleep through the night. Caring for an aging relative is not easy. But this monthly newsletter is designed to help you through the process.
- Memory loss and advance care planning
- Phones for every disability
- Advocating for a good night's sleep
Memory loss and advance care planning
If the person you care for has received a dementia diagnosis, talk with them NOW about their wishes for medical care at the end of life.
It’s a critical time to update their advance care directive.
For both your sakes, the sooner you start this conversation, the better. Your loved one may have more difficulty communicating about it as time progresses.
Are you hesitant to bring up the topic?
You may fear an angry response or denial that anything is wrong. Or perhaps you worry about depression. Try reframing the conversation:
- Prior planning. Often, advance directives have been included in estate planning documents. Focus on updates and distributing to current physicians.
- Work on your directives together. Everyone needs an advance directive. Share what your thoughts are for your own directive (even if it’s complete already). Then ask about your relative’s wishes.
- Consider it an act of love. You want to know what kind of care your relative wants and what they most fear. With this, you can advocate for their preferences.
Choose a decision maker
If nothing else, it’s a good idea for your loved one to pick one person to be his or her medical decision maker. If the need should arise, this person would coordinate with the medical team to carry out your relative’s end-of-life wishes.
Other tips with dementia:
- Talk to your loved one shortly after the diagnosis. Awareness is high, and your relative is more lucid than he or she will be in the months or years to come. The earlier you have the conversation, the more likely it will be that the person has the capacity to sign needed documents.
- Plan on several conversations over time. People with dementia are easily overwhelmed. Keep the conversations short and focused.
For more tips, see TheConversationProject.org. They have a Starter Kit for families of persons with dementia.Return to top
Phones for every disability
Staying in touch with friends and relatives does a world of good for older adults. This is especially true for those who live alone.
The ability to easily reach out is important for well-being. And it can make a life or death difference in emergencies.
Limitations of aging, however, can make standard telephones difficult to use. Fortunately, special features are available that compensate for disabilities. Below are some examples.
- Alerts for incoming calls. Displays flashing lights to indicate an incoming call. At nighttime, a vibrational device can be put under the pillow.
- Amplified speech. Many phones can boost the sound coming through the earpiece. Some can even send the audio directly to hearing aids.
- Call captioning. This service types out the caller’s words on a small display screen. You may need a special (free) service to “translate” if one person on the call has a captioning device and the other does not.
Problems with vision
- Large-button display. Big numbers are easier to see and accurately tap.
- Programmable memory. Allows for preentering commonly dialed numbers.
- Photo-dial. The buttons display images of people or places that are called frequently. The phone numbers must be preentered.
- Talking keypad. Announces each numeral as it is dialed.
- Voice–activated dialing/answering. As more houses become “smart,” this hands-free option may prove useful for common disabilities.
Other medical or memory issues
Many of the options listed above—coupled with training until the skill is mastered—can be useful for people with memory loss or problems with dexterity, such as arthritis.
Advocating for a good night's sleep
Sleep has been underrated. There is no doubt that miracles occur daily in hospitals. But in the race to vanquish disease, simple things like sleep can get short shrift.
Choosing Wisely, a white paper by the American Academy of Nursing, has listed several common hospital practices that unintentionally get in the way of a solid recovery. We talked in the February 2018 issue about the problem of spending too much time in bed. Another problem is interrupted sleep.
Promote uninterrupted sleep
Sleep is one of the body’s most healing activities. It has a cyclic pattern that should be respected. When your relative is hospitalized, do what you can to advocate for:
- Medicines being given during waking hours. (Work with the nurses to arrive at a schedule that does not interrupt sleep.)
- Lights out, monitors silent, and doors to your relative’s room closed at night.
- No middle-of-the-night blood draws. Ask that draws occur when your loved one is awake in the morning.
- Vitals checked just before bed and then in the morning. Have blood pressure, pulse, temperature, pain, and respirations been fairly steady? If so, ask if there is really a need to interrupt sleep at 1:00 a.m. and 4:00 a.m.
- Effective and long-lasting pain management applied in the evening. This way, pain will not cause your loved one to wake up in the night.
Of course there are reasons a patient may need midnight attention. Maybe the medical situation is still unstable—the illness not yet under control. Perhaps a test is needed to help develop a plan of care. Or to make immediate treatment decisions.
But if things are generally stable, it’s perfectly appropriate to ask, “What are the real risks of no interruptions between 10:00 p.m. and 6:00 a.m.? Can it wait?” Healing may be a higher priority.Return to top