Advocating for your loved one
How would you feel if you could not speak or function for yourself? Frustrated? Angry? Confused? This is exactly what happens with many older adults who cannot manage their own affairs. At such times, others must become actively involved to ensure he or she receives the best care and quality of life possible. My own father lost not only his memories but also his ability to talk due to Alzheimer’s disease. This left me to serve as his eyes, ears and voice and to advocate for him.
Advocating, while sounding complex and daunting, doesn’t have to be. Here are just a few of my recommendations, taken from my personal caregiving experience:
Apply for Guardianship or Trusteeship: These are legal processes that allow someone to manage a dependent adult’s affairs. Please note that Guardianship and Trusteeship is not one and the same thing.
Guardianship will allow you to manage someone’s personal affairs (i.e. accommodation, care providers, etc.) while Trusteeship will allow you to manage his or her financial affairs. Having Guardianship does not automatically grant you Trusteeship and vice versa. If considering either option, my best advice here is to get legal counsel; doing so will better ensure that all the “I’s” are dotted and “T’s” are crossed correctly. As a Guardian or Trustee, it can be a good idea to keep spare copies of the court orders handy (maybe even scan and save these on your computer at home so you can print off a copy, whenever required).
Ask Questions: Of doctors, nurses, lawyers, bankers, financial planners, pharmacists, social workers and anybody else involved with your loved one’s care. Remember when advocating for a senior, there is no such thing as a foolish question and clarifying information is essential. Ask until you fully understand the situation and don’t let any matter escape without being fully explained. As a former co-caregiver, I made it a practice to always carry a notebook and pen to every appointment. I noted responses and returned to these later to ensure complete understanding. You could also carry a small digital tape recorder in your car. Take a few moments immediately following each appointment (so that you don’t miss anything), to record thoughts or comments shared.
Peer Into the Parental Closet: You’re not looking for any skeletons here! Instead, you are examining how well the long-term care staff cleans the area (it may be an easy spot to be “out-of-sight” and “out-of-mind”). While your loved one’s room may be swept and mopped regularly, unhealthy germs can still collect in a dirty closet and pose a health risk. Don’t just stop at glancing into the closet(s)! Look at the care facility’s public washroom, stairwells and foodservice areas as well.
Plan Sporadic Visits: Years ago, when Dad was still alive, I would stop in to see him every Sunday afternoon, like clockwork. But I certainly didn’t stop there! My visits also came at intermittent times throughout the week as well. Through my random visits, I felt better able to see any inconsistencies with my father’s care (or even the care of other residents). Schedule a visit or two around resident mealtime. Breakfast, lunch or dinner can be a hectic time at a care facility… is your loved one eating a full meal and getting any help necessary?
Monitor Your Loved One’s Appearance: While you may not have the necessary medical experience to completely diagnose a physical problem, it can be quite easy to observe a person in any discomfort. Watch for pained facial expressions, limping, unsteadiness or unexplained bruising. In addition, does your loved one get a regular bath? This is vital for a person’s own hygiene and comfort. I also routinely examined my father’s chin stubble to confirm he had been shaved.
Insist on Regular Updates: Keep the communication lines between you and your loved one’s care facility open. If he or she is moved to a different room for any reason or requires a change in medical prescription, you’ll want to know. Provide all means of available contact (i.e. landline phone, cellular phone, e-mail, etc.) so you can be reached at any time.
Meet with Long-Term Care Facility Management: At my father’s long-term care facility, my family was able to schedule meetings with the facility management to talk about Dad’s health, pose questions and, if necessary, air grievances. Should there be any issues raised, be sure to create a paper trail. After each meeting with long-term care management, write a letter reiterating what has been discussed and when. Include any advice/plan of action suggested. Mail/email a copy while keeping a copy for your own files. If no such arrangement exists for you, speak up and make a recommendation. Talk to other family caregivers who may echo your thoughts.
Rick Lauber is the author of Caregiver’s Guide for Canadians available at national Chapter’s bookstores and here. More info at www.caregiversguideforcanadians.com. You can also follow Rick on Twitter at twitter.com/cdncaregiver.