I have been an RN for 38 years and have specialized in helping those who live with dementia and their families for the past 12 years. Caregivers are the experts on their loved ones. There is no doctor or nurse who knows their loved one more than they do.
Gail Weatherill has been an RN for 38 years and has specialized in helping those who are living with dementia for 12 years. She runs the Facebook Group Alzheimer’s and Dementia Caregivers Support, which has over 37,000 members, as well as her Facebook page The Dementia Nurse.
Those who live with dementia and their caregivers need to learn as much about what their rights are in the health care system as possible. I have been an RN for 38 years and have specialized in helping those who live with dementia and their families for the past 12 years. Caregivers are the experts on their loved ones. There are no doctors or nurses who know caregivers’ loved ones more than they do. Caregivers often feel as if they have to go along with what the doctor recommends, but that’s not the case. If something doesn’t feel right in their gut, they always have the right to say no or seek a second opinion.
I often hear that families are told that they can’t go into the examination room if their loved one with dementia ends up in the emergency room. In the state of Virginia, where I live, that’s illegal. If a loved one has dementia, families have the right to join their loved one in the examination room. Being in the hospital alone is scary for someone with dementia. Many physicians are not familiar with dementia and often, the message that this person has cognitive impairment doesn’t even make it into the exam room. Your loved one with dementia may say, “Oh, I’m fine,” even though 30 minutes ago they were screaming in excruciating pain. The doctor would be unaware of that without a family member present. I worked in intensive care for 17 years before I started working with dementia patients and I always emphasized that families should be allowed to go to the exam room with their loved one. Who are we to tell others that we know more about what’s happening to their loved one than they do?
In assisted living facilities, there are federal regulations on resident rights. Whenever you admit your loved one to an assisted living facility, whether it’s for short-term therapy after a hip fracture or for long-term care, you should get a copy of these resident rights. Facilities are required to give that to you. However, these documents are often 20 pages long and some information gets lost in the shuffle. Plus, most people who are admitting someone to a facility, especially after their loved one has been in the hospital, are already distraught and vulnerable. They often do whatever the facility tells them and sign whatever gets put in front of them, then may regret it later.
If the only thing I ever teach people is this, I will know that I made a difference: In most contracts for long-term care facilities, there is a clause that says that if there is a disagreement, the patient agrees to “binding arbitration.” That means that the patient and their family cannot sue the facility. For example, if an aide places your loved one in the bathroom, doesn’t come back for three hours to check on them and your loved one had a stroke, you cannot sue the facility. It is horrible, but it is how the owners of these facilities and the health care industry continue making billions of dollars. However, families have the right to say, “I’m not willing to sign this document with this paragraph in it.” Since it’s rare for anyone to sign paperwork before their loved one is already in a bed, most assisted living facilities won’t turn families away and will agree to remove that clause from the document. If they do turn you away, then you wouldn’t want to be at that facility anyway. People need to understand that the nursing home is not in charge of them or their loved one; they are in charge. It can be difficult to be assertive in these situations, but caregivers can take a friend or family member along to make this process easier.
Antipsychotic drugs are also an issue. While they are not a good fit for everyone, there are cases where patients’ quality of life can be improved with these drugs. You have to determine whether they’re a good fit for your loved one. In general, it’s important to make sure that your loved one with dementia is getting the medication they need for other disorders they may have as well. I started caring for someone with dementia when a client I had come to love became too ill to continue living alone. Betty was 82 years old and never married or had children. She had lived with another woman for many years, but after her loved one passed away, she was truly alone. I had a big house at the time, so she moved in with my teenage daughter and I. When I first met Betty I was doing case management and she was living alone in a trailer with a seizure disorder. I got a call from Adult Protective Services because she kept ending up in the ER; she was there three times in a 10-day period. They told me that a young girl came to help her sometimes. No one could understand why she kept falling, but I learned that she wasn’t getting her medication. Eventually, I started caring for her instead and once she went back on medication, she didn’t go back to the ER for two years.
Those with dementia live in the now and that’s something we can learn from them. They may not have the past or be able to project into the future, but they care about what’s happening in the moment and deserve a good quality of life. The first day I met Betty, I asked her what her favorite foods were. She said she loved sweet potato pie. The next time I went to see her, I brought a sweet potato pie with me. It only took me a few minutes to go to Food Lion, purchase the pie and throw it in the oven, but based on her reaction, you would’ve thought I gave her the Crown Jewels. We may not have enough money to take our loved ones on a final tour of Europe, but there are little things caregivers can do over a long period of time that can improve their loved one’s quality of life. I often tell people, “Don’t go to 20 different doctor’s appointments. Go to their favorite restaurant. I guarantee you they’ll benefit more from that than they did from another doctor’s appointment.”
I tried to follow this advice when caring for Betty. She also had lung disease, so she had to go to a nursing home. One day, the social worker called me because she visited Betty in the nursing home and was concerned. I had just visited Betty four days before; she’d be doing fine and was doing physical therapy. However, the social worker told me that she was lying in a bed on oxygen and was likely going to pass away soon. I was devastated and confused. Because I was her POA, I went to the nursing home, but her doctor was out of town. Then, I demanded they look at her chart. Apparently, she had slowly been developing renal failure, but the doctor had been blowing it off. At the time, Medicare was fining nursing homes if you sent patients to the ER for someone they should’ve been able to handle there, so they’d been reluctant to send her to the hospital. I got her out of that nursing home, found a new doctor and we learned she had retrocardiac pneumonia, which is fatal. Luckily, they gave her an IV antibiotic and some fluids. One week later, she was completely fine. When she was sick, I asked her, “What did you like to do best with the woman you lived with?” She said that they used to go to Charles Town to play the slot machines. I said, “Betty, if you get out of this pickle and get better, I’m taking you to Charles Town, sugar.” Her hip doctor called to schedule Betty’s surgery for the following week, so Betty and I went to Charles Town the week before. We stayed overnight and had a lot of fun.
Something I enjoy most about caring for those with a brain illness is that it takes so little to make their quality of life better. When Betty passed away, I was so proud that we had been able to love and care for her. Now, I continue working with those who have dementia. When I signed onto our Facebook group, there were just 200 of us. Today, we have over 37,000 members from 100 countries around the world. We’ve got people from everywhere because dementia is everywhere. I continue to spread awareness about what rights caregivers and patients are entitled to.