Since this is a delicate subject and usually involves many family members, it would be wise to research as much information as possible, before making your personal decision of placing a family member in a nursing home or in a home care setting. Don’t rely solely on the advice of the physician. Don’t rely solely on a nursing facility either. If you haven’t already discussed this scenario with your family member for their wishes, this could become a heated discussion with multiple thoughts from all others directly or indirectly involved. But in my case, I saw first hand the pros and cons for each.
If you’re an optimist, quite possibly every situation in your life can be chalked up to a “life altering experience.” But to be able to convert that to a positive, when it refers to long term care for a close family relative or friend, can be quite the contrary. Experiencing day to day the 13-year battle for my dad with Alzheimer’s I felt it left me somewhat of an expert. Little did I know of the multiple variations of this devastating disease, when I embraced the opportunity to voluntarily care for our elderly family friend. She was afraid distant relatives would leave her in a nursing home with no one to look after her. That wasn’t happening on my watch!
Years later, when she eventually fell and fractured her hip, she was sent by the hospital to a rehab dedicated to the treatment of Alzheimer’s patients. So while she was undergoing physical therapy, they were also keeping her in a contained environment for her disease. Seemed like their assurances of her placement there were the final stages of her treatment and care. After two months of visiting and daily reports on her progress, I realized there was nothing more they were doing for her than tie her to a wheel chair and let her roam aimlessly on the three hallways of her containment, while her ankles turned blue. I was determined to bring her home to the place she would have wanted to be cared for.
Since I had a family of my own and a full-time career, I hired a 24 hr. live-in aide. I quickly learned the difference between an aide (nothing more than a companion – no assistance) and a CNA (Certified Nursing Assistant). Be sure to inquire which one the agency is sending, and if they are certified, ask for a copy of the certification. Likelihood they are not, but they will charge you more!
Be sure to ask if the agency has a nurse or doctor available for care as needed or on a regular or urgent care basis? Do they report their findings to the primary doctor? Try to stay with your physician for as long as possible. Doctor visits become difficult, but an ambulette for hire is an option.
Some of these agencies do little more than administer sleeping aide medications. Don’t leave the full care up to the agency and their nurses and physicians. Be sure to demand your specific instructions on what you want to be done each day for the benefit of your patient, including phone calls to you, bathing, changing of linens, turning of the patient, and specific food preparations. If medications are required by your loved one, be sure someone is assigned to administer the medication, and count the unused pills weekly.
Inquire as to whether or not you are required to purchase personal items and food for the aide. Be sure to keep specific receipts to be compensated, as the agencies will not let you deduct this from their monthly or weekly bills. Be sure to inquire as to who will be the replacement aide for your loved one, while the regular aide takes her monthly time off. (They do have personal needs to take care of as well, and usually very deserving of this time off.) Consider having a surveillance camera placed in the home as a precaution for not only physical abuse, but theft as well.
If your patient’s phone allows long distance, out of the country calls, be sure to cancel that. You could possibly wake up to a $2,500 phone bill the next morning. (Oh, yeah! I experienced that one first hand too!) Be sure you have neighbors that can watch over the home, while you’re away, at work, or on errands. Limiting outside visitors to the aides is a must! Have the neighbors or friends visit your patient at odd hours. You’d be surprised what goes on when the cat’s away!
It goes without saying that you need to check the weekly stubs and monthly bills with a fine tooth comb. It’s no surprised as to what errors are made each week.
Sure, there were times the nursing home’s words echoed in my mind, “You will return with her. You won’t be able to handle her.” Believe me, there were times I almost did, but I knew it was not her. It was the disease taking over her and the combination of poor care from aides, while I was away with my family or at work. This was still the person I had tea with, my confidant, my “Auntie,” my neighbor in the shell of a body I recognized as my friend. No, I couldn’t abandon her. Sure, the benefits of a nursing home included food, care, medication, 24-hr monitoring, and probably less stress on my part. But with the benefit of hindsight, I would not change one second of the countless hours, days, months, years of stress to have been close to my friend. It’s not always about the cost. It’s also about the love, trust, and friendship.