By Sue Collins, RN Courtesy of Caregiver.com
What do you do when you and your loved one have been punched in the gut with a terminal diagnosis? Or mom’s dementia seems to have suddenly worsened overnight? Or a family member faces a slow recovery from a serious accident? Few people are prepared. Most don’t know where to begin or what questions to ask. This can lead to feeling trapped. I’ve been there, as have many of my friends. It helps if you’ve got a practical to-do list to guide you while dealing with the emotional ups and downs of this new reality. A proactive approach will leave you feeling less trapped and in more in control.
Here are ten tips to get you started.
1. Sign Documents
There is so much in life we really can’t control, but you can take care of the necessary paperwork that will help in getting information and making timely decisions. For example, find out if a will exists; if not, get one in place while the person is still cognitive. Without a will, the state takes over and decides what happens to a person’s property when they are gone.
2. Power of Attorney (POA)
The POA authorizes the designated person (or people) to act on behalf of the loved one in financial and legal matters. This means the POA designee may sign checks, pay bills, do banking and other business on behalf of the person. Make sure you remember to get access to online accounts and passwords.
3. Living Will
Is there Advanced Directive or Five Wishes? A crisis can be a scary thing and decisions may not be well thought out when you are overwhelmed or in a state of disbelief or trying to second guess what your loved one may want. For more information see: https://www.reference.com/government-politics/use-five-wishes-living-d0b9ad5515627ce0
4. Medical Power of Attorney
The Medical Power of Attorney designates a Health Care Agent, who then has the authority to make health care decisions.
5. Identify the Primary Caregiver
Explore which family members or friends can help, and make a plan based on both ability and need. Those who cannot be part of the long haul may be able to participate as pinch hitters, which takes some of the burden off the primary caregiver.
6. Who Can Help You Weekly, Biweekly or Monthly?
Rally the troops and make a schedule. Having something in writing helps create a routine for all involved. Don’t forget to explore co-workers, members of religious organizations, clubs or community networks. When people offer to help, don’t be afraid to take them up on it.
7. How Can Out of Town Family Participate?
An out of town family member can set up a Facebook page, text or email thread to keep all family members and friends up to date with changes, which also helps to relieve the primary caregiver from repeating the same information over and over. Out of town family members can call and make doctor or treatment appointments as well as establish a group to provide meals, or have meals delivered.
8. Who Can Run Errands or Provide Transportation?
Having someone help with transportation to appointments or treatments gives the 24/7 caregiver a little break from the day-to day tasks. One group in my community set up a phone chain for the transportation of a neighbor who had bi-weekly chemo an hour’s drive away. Volunteers signed up for a one-time trip or even a once-a-week drive for the duration of the chemo. In one case, a retired executive who didn’t know the patient, Beth, drove her to a weekly appointment during which he got to know her, a pleasure for both of them.
9. Who Can Provide Caregiver Respite?
Scheduling respite from the daily caregiving responsibilities is critical in alleviating caregiver stress and burnout. Many caregivers put their own life on hold. It’s not selfish for the primary caregiver to take care of him or herself. It’s practical. Without it, there will be two people needing caregivers. Maintaining hobbies and club activities is important for caregiver wellbeing. Seeing a respite break on the calendar gives you something to look forward to.
When feeling stressed STOP! Take three deeps breaths, inhale for the count of four, hold for the count of four, exhale for the count of four and hold for the count of four. You will feel the tension you are holding in your body soften.
Caregivers are being asked to perform more complicated tasks than ever before, and the responsibility of managing many kinds of medications can be daunting. Some caregivers are required to provide some medical and nursing tasks. Helping loved ones bathe, dress, shop, cook and manage household chores although fundamental, may fell intrusive. Checking with the local Department of Aging, Health Department or Easter Seals can be resources for services provided in your area.
What Matters Most? Developing a plan, even a temporary short term plan. It can help alleviate stress, anxiety and perhaps thwart some family disputes. Recognizing that disease progression is constantly changing will help caregivers realize that plans will need adjustments along the way to accommodate these changes. And finally, realizing that you can’t ‘fix’ everything — especially when a crisis situation appears. Just doing your best is what matters most.
Sue Collins has been a nurse for 40 years and a hospice nurse for 28 years. She is co-author with Nancy Taylor Robson of OK Now What? A Caregiver’s Guide to What Matters (Head to Wind Publishing).
For more information contact my office at 561.267.2207.
LKG Law, P.A.’s is an Elder Law & Special Needs Firm with a focus on: Trust & Estate Planning, Long Term Care, Medicaid, Veterans Administration Benefits (VA), Alzheimer’s Planning, Guardianships, and Probate. We are located in West Palm Beach, Florida and serve South Florida in Palm Beach, Broward, Dade, Martin and St. Lucie Counties.