Written By: Rudi Lamy, MLS, MAS, Consultant to the Peter Lamy Center on Drug Therapy and Aging
Follow the Caregiver’s Mantra
Whether caregiver or advocate, you need to keep yourself healthy: physically, psychologically, and emotionally. Shower or bathe, brush your teeth, sleep, eat well, and see your doctors. Be sure you understand the purpose and uses of your prescriptions and ask about COVID vaccinations with your health care team. Your pharmacist can help you review your medications as well as over-the-counter purchases (including foods such as grapefruit) against your prescriptions for interactions and ways to optimize. Find a counselor, support group, or confidant to learn as well as provide stress relief.
Remember the caregiver’s mantra: “You cannot care for them if you do not care for yourself.”
My Duties as Advocate and Caregiver
- Visit as often as I can (in my case, almost every day)
- Keep her in touch with her family members
- Inspect skin for rash or sores
- Inspect toenails, asking a podiatrist if needed
- Monitor hair for when it needs a wash and cut
- Bring picture books and magazines
- Clean and straighten space
- Create labels on clothing
- Participate in regular care plan meetings
- Engender good relations with staff
- Help nurses, techs, and aides when possible or necessary
- Be an adjunct physical therapist
- Find or replace lost glasses
- Fiduciary and economics leader
- Find activities that keep her engaged and lucid
- Help with feeding if needed
- Answer the phone or be responsive to meet the needs of your loved one
- Be prepared to run errands. If your loved one has a roommate, you may be pressed into service. Remain calm and say “yes ma’am” a lot
- Be prepared for the oddities, such as sitting in your loved one’s room with her roommate, while the two elderly ladies with dementia watch “Fifty Shades of Grey”
Research and Readings
As you get further toward the end of this post, you will notice a lack of readings in professional journals concerning the duties of the advocate who watches over a loved one with dementia. This could be because there simply aren’t any, but I also did not go looking for them. Truthfully, it matters not at all the affliction of the patient. Dementia or not, every patient, every advocate, every situation will be different from another.
What I write about, what I base my blogs upon, is my personal experience, so I can’t provide one-size-fits-all advice to advocates and caregivers. I am soon to be 69, my wife 84. She has fully grown children, the oldest only four years younger than me. Our health care issues, finances, personal experiences, care history, and education will differ from each of yours.
In at least one respect, we are all alone because our situations are unique to us and us alone.
However, don’t give up. If you have questions, look for resources to help you. They are out there.
As I said in my previous blog, you can ask me questions through the comments section below. You can find me on Facebook. You can speak with your neurologist or psychiatrist. There are support groups that can help. You might even start by researching professional and para-professional readings and journals. Don’t forget to check their bibliographies as well.
By the way, I did actually Google “Duties of Dementia Advocate” and got some results.
The mission of the Peter Lamy Center on Drug Therapy and Aging is to improve drug therapy for aging adults through innovation research, education, and clinical initiatives. To learn more about our work and view resources for yourself and loved ones, visit our website.
Be well and thanks for reading,