Post #35
Accountability is a concept that we all know is important, but it sometimes seems a little harsh when we need to demand it of others. After all, as caregivers we want the best for those we give care for, right? Unfortunately there are those who claim to be “caregivers” but whose hearts aren’t really involved. Some people have been thrown into caring for a relative without the desire to do so, and sometimes hired companions feel sitting with an elderly or disabled person is just an easy way to make money. In addition, there are well meaning caregivers who need more training or are just overworked, so that giving personal attention to the care receiver becomes a lesser priority.
Let me start with a recent example that has spurred me to write on this topic. A couple of days ago a friend of mine received a call from the elderly care group that she works with asking her to work over night as a companion because another caregiver had called in sick. The ninety-plus-year-old woman she stayed with that night had obviously received little care during the day. It appeared that she hadn’t been offered food nor had the previous companion attended to her toilet needs. In fact, dry feces covered the bedroom floor. How long had the woman’s clothes and floor been left in this condition, my friend wondered as she scrubbed the floor and gently attended to the woman’s needs. She tried to report this negligence to the company she worked for, but that evening no one answered the phone.
This woman in her nineties has four children who all live in the same city as their mom. I’m guessing that they all believe their mom is being cared for by professionals who will consistently attend to her needs. However, as I’ve learned from my own experiences, as well as the stories of others, it is absolutely necessary to regularly check on the quality of care your loved one is receiving. Check daily, if possible . . . If not, you can make it known that you will be making surprise visits to assess the quality of care. If you live far away, hire an elder advocate* or ask a trusted friend to make personal visits for you.
Of course, before you sign up an agency to care for your loved one's needs, you will want to check into their reputation. Fortunately, this is much easier to do these days because of online reviews. Take all complaints seriously. Meet with someone from the agency in person as well as finding out all about their services online. . . Communicate your expectations and find out how the agency monitors their employees to be sure the expectations are met.
Perhaps all of this sounds like a lot of trouble, so maybe you should just place your dear one in a health facility (nursing home, memory care, etc.). Oh, if only it were that easy! While in a group situation there is the advantage of more people watching what is happening, even in a reputable facility there are sometimes lazy or incompetent workers, and/or too much to do, causing a lack of personal care. If you’re reading this and work for a health facility or agency that gives remarkable attention to each individual, I commend you. Yet even in the best of situations a mistake can happen, so if family and/or friends are paying attention then big problems can usually be avoided.
I changed my mom’s living situation several times because of problems at highly rated residential facilities. In the beginning, the first place she lived appeared to be ideal. As time went on, I realized there were small things that could be improved, such as Mom being encouraged to spend time outside. . . less sitting on the couch and watching TV, etc. However, I became really concerned as I began to realize that I was the only one who noticed when Mom was sick or in pain. One evening I arrived late to find that she was having a great deal of pain in her right leg, and I noticed that her leg was extremely swollen. Because it was the night shift, there was only one aide and one med-tech in her care unit, and neither had any idea what was going on with her. I took her to the emergency room for x-rays to make sure she didn’t have a blood clot. . . . Another time I came to visit during a meal and noticed that Mom hadn’t touched a bite. She was listless and her forehead was hot. Would she have eventually gotten the medical attention she needed if I hadn’t been there? I wasn’t sure, so I decided to move her somewhere that I could visit every day.
Unfortunately, the elder care facility closest to me wasn’t geared to those with memory problems— although they did have a few clients there who fit this description. I decided to try it out because Mom had not been walking much due to arthritis in her knees, so I didn't think she would wander. Because this facility was set up like small apartments, I stayed with her a week to help Mom feel comfortable and to make sure she was going to receive appropriate care. For meals, we sat with a table of pleasant people with disabilities and/or memory loss. Although there was supposed to be an attendant with them at all times, this was rarely the case. Sometimes they had to wait for an hour or more after their meal for someone to take them back to their room or to an activity. Some of the residents were cognizant enough to tell me the inside scoop of how their group was ignored during meals. One red flag already, but I really wanted Mom to live close to me, so we continued to stay.
When I thought Mom was ready for me to be away for a few hours, she escaped during the first meal. She was headed to the parking lot to look for her car. They called me after a couple of escapes that day and even before I managed to get there (less than 30 minutes later) she tried to leave again. When I arrived, no one knew where she was. Without waiting for them to give me more information, I ran outside to search the perimeter, especially all of the exits. I was both relieved and frightened to find that she had exited on the second floor and was about to attempt going down the cement stairs because the door she had exited couldn’t be opened from the outside. Needless to say, I hurried to find her a locked memory care facility even though it would require traveling through Austin traffic to visit frequently.
This next facility seemed to have good activities, but I noticed that there wasn’t much attention given to the residents at night. I visited frequently in the evenings, to make up for this lack. Sometimes I stayed until she fell asleep. Fortunately she had her cat Snookie, so this gave her companionship at night. Another problem Mom faced at this facility was with one of the residents who had memory loss at a very early age, and she tended to get into the rooms of others, which scared Mom. However, it wasn’t because of this resident that Mom suffered an injury, it was due to her own violent temper whenever someone tried to give her a shower/bath.
Mom always felt violated whenever someone tried to bathe her (which is the main reason I couldn’t care for her myself), so one day during her shower she took a swing at the nurse, the nurse ducked, and Mom’s hand hit the cement wall with force. I think residential facilities should have padded walls to prevent this, but what really bothered me about the incident was that I wasn’t called when the incident occurred. Instead the night shift nurse called me when she arrived to let me know how much pain Mom was suffering. She explained the incident and asked if I wanted them to call a traveling x-ray service. “Yes, and I’ll be there as soon as I can get across town,” was my prompt answer.
Mom needed someone with her 24/7 while she was healing, so I moved her home again, in spite of some of her caregivers feeling that it was unnecessary-- besides our contract was still binding. Because I knew Mom had difficulty coping with pain, I insisted, and due to the circumstances they let us out of the contract. The end result was that we bought a bigger house and had a friend and her daughter move in with us to help out with Mom in the evenings. I enrolled her in adult day care on weekdays while I worked. She was with us for about 7 months before I decided to investigate the possibility of her trying out on weekends a new memory care facility, which eventually became her final and best group home.
Because Mom was on VA support, we had to be accountable to the VA for her living situation. Each time we moved her they would come check out her living conditions. I think this was a positive experience rather than a stressful one. I found the VA case manager to be extremely supportive. He commended the place I had for Mom each time we changed and told me stories about some of the less desirable places he had visited. Unfortunately, abuse and neglect of the elderly and disabled is all too common.
Even when I found the almost perfect memory care facility to be Mom’s final home, I had a friend tell me that I should remain diligent. She warned about being complacent because she had several negative experiences with care facilities where her husband stayed as he declined with Alzheimer's. One system that seems to work when you can’t be there every day is to get to know other families who have residents in the same place as your loved one. You can watch out for each other’s family members as friends. If you exchange phone numbers, you can also call if there is a reason for concern. As I’ve said before, caregiving is a team effort, and it is very helpful to enlist others for support. For that matter, make friends with people who work at the facility—perhaps, they will keep an extra eye on your dear one when you’re not around.
*For more about “elder advocates” see https://seniors.lovetoknow.com/senior-care-advocates
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