Being one of the newest columnists to have the pleasure of being part of the Gilbert Guide family of contributors, I’d like to introduce my new column to you. By virtue of training and personal experience over the past 10-plus years, I have become very knowledgeable on a wide variety of issues concerning boomers, senior care, aging and caregiving. Am I an expert? I’ll leave that decision up to you, the readers of this column. What you can count on is that everything I write is honest, accurate, and has been thoroughly researched, or is based on my own personal experience as a caregiver. With that said, welcome to my column.
Now, let’s get started. As all of you may know, most family members don’t expect to become caregivers. When a situation such as a family member suffering a paralyzing stroke, receiving a diagnosis of Parkinson’s, or as it was in my own case, my mom’s diagnosis of Alzheimer’s disease, a family member, in most cases, the spouse or an adult child, is suddenly thrust into a totally new role as care provider. Most of us almost immediately go into “fire drill mode” and require lots of information to answer our many questions. Remember, we didn’t ask for (or volunteer for) this job as caregiver, and it can be quite overwhelming at times. While my own background at the time included a great deal of training and education on numerous issues impacting both seniors and boomers regarding their wealth, health and lifestyles, like you, I wasn’t even close to being fully prepared to deal with the dozens of problems facing my mom and our family as her disease began to affect her life. Nor was I ready for the impact that Mom’s illness would have upon my time, my energy and my life.
As a result of this initially overwhelming experience, which now includes more than five years of overseeing my mother’s safety, trying to assure her a decent quality of life, and being responsible for handling every detail of her day-to-day living, I am committed to helping others get through the first months of becoming a caregiver for a family member. The first step I took to accomplish this was to share my own experiences. While my caregiving experience is with an Alzheimer’s mom, most of the problems I had to deal with are very much the same problems facing caregivers of loved ones with any debilitating disease or illness. I used what I had learned about Mom’s disease, which included drawing upon my own challenging caregiving experiences, and wrote my book Caring for a Loved One with Alzheimer’s Disease. This book was published in October 2008 and it was designed to help family caregivers gain an understanding of the disease and its progression, and to provide crucial support in answer to the incredible stress that is placed upon homecare providers.
In writing this column, it is my desire to identify and discuss many of issues that you will face as a family caregiver as you are pushed into the role of parenting your parent or significant other. Future articles will address topics ranging from how to insert yourself into your parent’s life, to how to deal with parental resistance and denial of very real problems, like living alone, driving or personal safety. Other issues I’ll write about will include recognizing when there is a physical problem and understanding the difference between normal aging and illness-related signs and symptoms. I’ll share my mother;s personal experiences with exploitation due to her disease and suggest ways to protect your loved one from these predators. I will also make you aware of the professionals and community services that are available to you as a care provider. And equally as important, I;ll explain what you can and cannot expect from government programs such as Medicare, Medicaid, hospice, local adult day care programs, long-term care insurance and other common programs and services. One of the most important components of my monthly column involves your participation.
I would like to encourage all of you to submit the questions, concerns and problems that you are all dealing with as a caregiver. Through my responses, and the responses of other readers like you, I hope you will come to realize that you are not alone. While each caregiver’s situation is unique, many of us have already walked miles in your moccasins, and have dealt with very similar situations. Share with us and let;s all learn from our collective experiences. I look forward to becoming a reliable resource for solutions to your caregiving concerns and answers to your questions about caring for a loved one with Alzheimer;s and other devastating illnesses and diseases.
When aging parents come to the point when assisted living seems like the best choice, it is usually their baby boomer children who see it first. Perhaps the adult children live in another state. Perhaps they are not able to visit Dad or Mom often enough to feel comfortable with leaving them alone. The death of a spouse or a gradual loss of independence in self care, any of these reasons may lead to the adult child’s decision to move the parent. As an assisted living facility representative is likely to tell you, [it is often the adult children who first come to look the place over, later bringing their parents to see the place for themselves. These adult children are the hidden consumers of services.
Assisted Living vs. Nursing Home
As the hidden consumers, what do the adult children of aging parents need to understand about these facilities? Very simply: what the facility can’t do. Invariably, the sales pitch tells you what the facility can do, which is fine, and to be expected. But because of the fact that you are a consumer, you need to understand the difference between assisted living and nursing care. First, an assisted living facility is not a nursing home with fancy furniture. Assisted living is not licensed to give nursing care. Typically, assisted living facilities are places where elders live in a supervised community, with some personal care services available. Meals, social activity, and help with the activities of daily living such as bathing and dressing are all usually offered at such facilities. One focus is on giving a healthy social environment and preventing social isolation. It is a worthy focus, as isolation is dangerous, and widespread among elders whose independence is declining. If your beloved parent is in fragile health and seems to be steadily declining mentally or physically, be cautious about choosing an assisted living facility over a nursing home (also known as a skilled nursing facility). No one chooses a nursing home first. Nursing homes are more like hospitals, as they must be to deliver skilled senior care to frail seniors.
But if your aging parent needs nursing care, and must be watched day and night, or you believe that he or she is likely to need such supervision in the near future, it is the only choice. Assisted living facilities are not licensed by Medicare or Medicaid to give skilled care. Some have a separate skilled nursing facility on-site or nearby, but it will have its own license to deliver skilled nursing care. That license does not apply to the assisted living component, even the two facilities are located on the same campus or are operated by the same parent company.
Doctors & Nurses Not Required
Many assisted living facilities do not have any licensed nurse on staff, and may have no nurse connected to them at all. Because they are considered non-medical facilities, having a licensed nurse is not required by law. Even if a nurse is employed by the assisted living facility, the nurse cannot give hands-on care in the form of dressing a wound, administering around-the-clock insulin, administering oxygen, or other tasks that are defined by the federal and state governments as ” skilled nursing care “. Skilled nursing care may only be administered within a facility that is licensed to do so. Legally, this kind of facility is licensed as a skilled nursing facility, although it may have a different business name that it markets itself as, such as an ” extended care” or “long-term care” facility. Medicaid and Medicare also designate these homes as skilled nursing facilities. Because skilled nursing facilities bill Medicare and/or Medicaid for skilled nursing care, they must comply with many complex legal regulations and requirements. Assisted living facilities are regulated by the state Department of Social Services, not the Department of Health, which regulates nursing homes.
Assisted living facilities do not have the same safety or administrative requirements as a skilled nursing facility, and they are prohibited from giving care they are not licensed to give.
Limitations to Specialized Care Waivers
There are some exceptions to some of the federal and state government’s licensing requirements. For example, a licensed assisted living facility may take care of residents with dementia, including Alzheimer’s disease, if it has a waiver to accept this kind of resident. The facility must also have certain protections in place in order to prevent injury to its demented residents. However, it is still prohibited from restraining a demented resident who has a tendency to wander. Even with waivers, there are many other limitations to what an assisted living facility can do. Taking care of residents with dementia can be unpredictable, and skilled nursing can become necessary as the disease progresses. When an aging parent has to move out of the family home, or out of a long-term residence of any kind, the move can be difficult, even traumatic. If you are considering assisted living as an option for your loved one, be sure your focus is on the long run. Carefully consider what he or she will need a year down the road. Moving an elder twice within a short period can be extremely hard on both of you, so make your decisions based on the overall picture, not just on what the assisted living facility can do for him or her right now. As hidden consumers, adult children must be fully aware of the limits of assisted living. Assisted living facilities can be wonderful and supportive environments for residents who don;t need skilled care. If you are considering assisted living for your aging parent, be sure this kind of place is a match for your parent;s needs.
