So, I stop in to visit my mom at her assisted living facility a while back. We are chatting and totally unconsciously, she starts raking at her lower leg with her nails. I ask what is wrong. She says nothing, and honestly, she is looking at her hand like she has no idea it has been furiously scratching. I lift her pant leg and there is an angry raised rash on her leg that I have never seen before. I was expecting just the usual dry skin from being indoors and her tendency to forget to moisturize. I call in a resident aide. They have never seen it before (even though they help her get in and out of the shower), and take photos to send to the doctor to get a cortisone cream ordered, because of course it is Friday. Thankfully, the dermatologist is coming on Monday to the facility and can take a look. But my mother has never had skin issues, and so is not on the standing list of residents to be seen. And so I need to sign consent to treat forms to get her seen. Turns out it is psoriasis, which apparently elderly people can be susceptible to as their skin becomes more fragile and their immune system is more compromised, and the dermatologist prescribes a steroid ointment to fight it.
Honestly, my mother would never have said anything to the staff or to me about a random itchiness. She would have assumed it was just dry skin and let it go on indefinitely. She did not see this as “worth making a fuss about” and because she has never seen a dermatologist before, she would not have requested to be seen. She definitely would not have mentioned it on the phone and the staff apparently have gotten accustomed to her independence and were no longer examining her very closely because she seems pretty with it and could self-report changes. The elderly only self-report a fraction of what is really going on. Sometimes it is because of memory issues impairing their ability to recall on demand or because of confused time lines of when things occur, sometimes they don’t want to be a bother, sometimes they are afraid it will imply something more serious they don’t want to deal with, sometimes they just don’t even notice something has changed because their bodies are betraying them at such frequency. Although the staff at an assisted living facility means well, they are not able to spend time in the resident’s presence just observing. Staff turnover means they don’t know what is “normal” for a given resident. Having eyes on your loved one can give them the advocate they need and you the peace of mind you need. They don’t have to necessarily be your eyes. Let Family Link be part of your care team.
Sometimes "crazy" is the body's way of telling us something is wrong. What is no big deal for those of us who are strong and healthy can be a very big deal for someone who is frail and has a weak immune system. Add to that mix the inability or reluctance to describe symptoms to caregivers and you have the perfect storm for "crazy". Check out this article about urinary tract infections in the elderly. This is often misdiagnosed because cognitive decline is "expected", so we attribute behavior changes to dementia and the infection remains untreated. Most nursing staff is really good about recognizing this, but with turnover, not all the staff knows what is "normal" for your loved one. Forewarned is forearmed. Know the signs and symptoms so you can ask the facility to rule out a UTI before they try to move Mom to memory care! https://goo.gl/V6PaEu
In March 2017, Anita Desai, founder of Family Link, passed the Florida State Regulations exam given by the Agency for Health Care Administration (AHCA). A training program and successful completion of the exam is required to certify Executive Directors and administrators to lead Assisted Living Facilities (ALFs) in Florida. Anita is now better equipped to educate families who are new to having a loved one as an ALF resident. This certification enables her to help families manage expectations of facility staff within the scope of what they are allowed to provide and communicate to families the specific parameters which exist in the ALF environment. This "translation link" facilitates a better understanding between the family and the facility so that they can cooperate and find the best solutions for the resident's care. Continuing Education is required for Anita to maintain her certification and we will pass along what she gleans for your benefit here on the Family Link blog!
The learning curve and number of things to consider when you become a caregiver for your parents can be overwhelming. Family Link can help be your point person suggested in this recent NBC News video about conversations to have with aging parents. We attend appointments, help organize the complex documentation and facilitate conversations as you make these tough but necessary decisions. https://goo.gl/sLPzys
Anita is the founder of Family Link and wants to share with you some tools and thoughts to help you with the complex responsibility of managing the care of aging loved ones while still managing the other aspects of your life.