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The ABCs of advocating for your loved ones

How would you feel if you could not speak or function for yourself? Frustrated? Confused? Seniors unable of managing their own affairs effectively may feel these emotions.
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How would you feel if you could not speak or function for yourself? Frustrated? Confused? Seniors unable of managing their own affairs effectively may feel these emotions. At such times, others must actively – and often tactfully – become involved to ensure loved ones get the best care and quality of life possible. After my dad lost his memories and his ability to talk due to Alzheimer’s disease, I served as his advocate, essentially becoming his eyes, ears, and voice.

Advocating is a significant job for caregivers; however, it doesn’t have to be complex or daunting. Taken from my own caregiving experience, here are some recommendations:

Apply for Guardianship, Trusteeship, or both: These are legal processes that allow someone to manage a dependent adult’s affairs. Guardianship and Trusteeship are two, very separate, processes.

Guardianship allows you to manage someone’s personal affairs (e.g. choosing accommodation, hiring care providers, etc.). Trusteeship allows you to manage someone’s financial affairs (e.g. paying bills, overseeing bank accounts, hiring a financial advisor, etc.). Having guardianship does not automatically grant you trusteeship and vice versa. Legal counsel can advise you with either role; however, there is another option. My sisters and I learned of the guardianship and trusteeship program (offered through SAGE). For a very low fee, they assisted us with completing the necessary application forms. For more information, please visit https://www.mysage.ca/help/guardianship-co-decision-making,

Ask questions: Quiz all individuals involved with your loved one’s care. There are no foolish questions. Ask until you fully understand. Personally, I carried around a notebook and pen to every caregiving appointment. I wrote down responses and returned to these later to ensure complete understanding. Many of today’s cell phones have a voice recorder application. Take a few minutes immediately following each appointment (so that you won’t miss anything) to record thoughts and 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 (closets can be easy spots to be out of sight and out of mind). While your loved one’s room may be swept and mopped daily, unhealthy germs can still collect in a dirty closet and pose a health risk. Don’t just stop at glancing into the closet; look at the facility’s public washrooms, stairwells, and food service areas. Dirt can accumulate under furniture as well. (We attached small wheels to the bottom of a bookcase in dad’s room so care staff could easily roll the bookcase aside and clean underneath.)

Visit sporadically: Years ago, I would stop in to see dad every Sunday afternoon, like clockwork. But I certainly didn’t stop there! There were also intermittent visits. By dropping in without notice, I felt better able to see any inconsistencies with my father’s care (or even the care of other residents). Schedule visits around resident mealtimes. These can be hectic times 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 condition to completely diagnose a problem, it can be easy to observe a person in pain. Does mom or dad limp when walking? Grimace when bending over? Keep your eyes open for any unexplained sores, cuts, or bruises on their body. Monitor bathing schedules – how often are baths or showers provided? Are teeth brushed or dentures soaked clean? I also routinely checked my father’s chin stubble to confirm that he had been shaved.

Insist on regular updates: Keep the communication lines between you and your loved one’s care facility open. If mom or dad is moved to another room for any reason, isn’t eating, or has experienced a nasty side effect from medication, you’ll want to know. Provide the care facility all means of available contact so that you can be reached at any time.

Meet with long-term care facility management: At my dad’s long-term care home, my family could schedule meetings with the facility’s management to talk about dad’s health, ask questions, and, if necessary, air grievances. Should there be any issues raised, be sure to create a paper trail; send a quick e-mail to facility management following your meeting that reads, “Thank you for meeting with us today. As discussed, I understand that you have noted (whatever concern) and have recommended (whatever answer).” If follow-up is necessary, state a date when you will be back in touch for further discussion. “CC” your e-mails to other family members and print out copies to save.

As a caregiver, you will need to speak up for your loved one, if and when necessary. Take advocating seriously and let your loved one’s facility staff know that you are serious about doing so.

Rick Lauber has written two books, Caregiver’s Guide for Canadians and The Successful Caregiver’s Guide (both published by Self-Counsel Press). Lauber has also served on the board of directors for Caregivers Alberta.