Taking care of two elderly parents with different needs was not an easy task. For me it was on the job training that I learned from interacting with the professionals I met along the way, from living day to day with the challenges that I experienced, from others who had gone through this trying time, and especially from reading and learning as much as I could about what often has been called “the roller coaster ride of caregiving.” In response to this time, I wrote a book about my personal caregiving story and came to some conclusions about the process. The result is Mimi’s Ten Caregiving Commandments.
Commandment Number One: Analyze Your Personal Circumstances
More than anything else I have learned that we are all different and that we individually react to situations that arise. Disparate personalities involved determine how decisions are made within the caregiver support system. There can easily be a clash among these types. Some of us are deniers and refuse to admit that there is trouble. Some of us are needy and expect others to do all the things that we can no longer do. Some of us are naïve and just plod along until there is a crisis. Some of us know better but keep putting off doing anything about the current situation until it’s thrust upon us. Some of us think we know everything and want to stay in control and make all the decisions. In my case, my parents remained independent until my mother’s mental condition deteriorated, my father’s ability to make decisions needed assistance and my brother, who was the nearby caregiver, decided to move away. People are encouraged nowadays to try to “start the conversation” early and, though it has to be a work in progress, to begin to craft a beginning plan.
Commandment Number Two: Organize
It’s so important to have the care recipient’s basic information on hand and that’s not just living wills and powers of attorney. It’s social security numbers, computer passwords, home maintenance information, medical history, Medicare paperwork. banking information. It should all be in one place or else specified where this information is located. It should include insurance policies, important contact information, spousal information, birth certificates, marriage licenses, divorce
agreements, financial statements. Many books are out that will provide you with ways to compile this information. All this material needs to be collated and easy to access. I started with one notebook and one folder. I wound up with notebooks for each parent and a file box filled with folders labeled by category.
Commandment Number Three: Communicate
Whether it’s an ER physician who needs to know your loved one’s situation, whether it’s your loved one who needs to be reassured, or a family member who may have a different opinion, life is better if there is a continuing dialogue, a respect for different points of view, and a shared conclusion. Particularly in the case of my mother who lost her ability to speak, I had to constantly explain to the nurses, the caregivers, the home health professionals, and the geriatricians that Mom could not talk and to try to interpret what I felt to be the problem.
Commandment Number Four: Prioritize
There may be many decisions to be made for an elderly person such as who should be in charge, whether an elderly person should remain in his lifelong home or move to a senior facility and, if so, where to live, or what to do if there is a medical crisis or the money runs out. At the very minimum the final decisions should take into account how all parties involved can best maintain a quality of life and a sense of dignity. In my situation there were many choices that had to be made. One of those choices was whether to move my parents from their lifelong residence in Chicago to be with me in Denver. It was definitely a trade off but the most important thing to me was that they have someone regularly supervising them.
Commandment Number Five: Educate Yourself
As it’s often said, “Knowledge is power.” Knowing what to expect and what options are available makes it easier to anticipate what may be coming and to more readily cope with the challenges one may face. I have to admit it’s hard to sit down and read a book about eldercare when one is still functioning very well, but after taking care of my parents, I cannot stress how important I feel it is to familiarize one’s self with the possible scenarios of growing old. Today all kinds of resources for caregiving are readily available since one-third of our population is now performing some caregiving duties. Books, documentaries, websites, forums, flood the eldercare market. When I was going through the eldercare phase a few years ago, not that much material was available, and I was frustrated about my lack of knowledge on the subject. I worked hard to address the eldercare issues on a case-by-case basis.
Commandment Number Six: Learn Every Bureaucracy
How many times have we heard someone say, “That’s not my responsibility”?
Whether it’s contacting a physician, working with the Medicare system, managing medications, figuring out how home health works or filing claims with insurance companies, the more one knows about who to contact and how to proceed, the less
frustrated everyone will be. One of the hardest tasks for me was learning who did what at the senior living facility where my parents were living. At the beginning, I could never figure out who was watching over Mom. In reality, no one specific person had that responsibility.
Commandment Number Seven: Stay Fluid
There are going to be times when you will need help and support and the answers will not come quickly. It’s important not to panic and not to get mad. A sense of humor really comes in handy if you can manage to keep yours. If all that fails, take a few deep breaths or share the burden or, even though it might be hard, take an hour or two away from the situation. I remember once near the time of Dad’s passing when I just let loose on the CNA (certified nurse assistant) who could not find Dad’s prescription that it turned out was lost in an out box. These things are going to happen and you get more with honey than you do with vinegar.
Commandment Number Eight: Do Your Homework
Don’t rely on others for your final decision on an important matter without consulting experts or by seeking out credible reading materials. When my mother became more and more aggressive, the geriatric care manager suggested that Mom needed psychiatric help. When I ran this by the head nurse of her dementia unit, she laughed at the thought. Ultimately I felt that employing a psychologist of any sort at her advanced age would do more harm than good. I decided on a sedative as recommended by her geriatrician was more appropriate.
Commandment Number Nine: Stand Your Ground
Doctors, social workers, professional caregivers are all just people and though they have been schooled, they will all have different opinions. You’re in charge and you need to hear everyone out if that’s the problem or, in the case of a particular problem that has been ignored, it’s your responsibility to call attention to the situation. One time when Mom gashed her head and wound up in the emergency room, I had to keep courting the staff to attend to Mom. Knowing she couldn’t speak and that there wasn’t any urgency, the modus operandi was to take as much time as they liked. It was my job to keep questioning those in charge and be my mother’s voice.
Commandment Number Ten: Take Care of Yourself
Regardless of how needy the care recipient is, the caregiver should try really hard to eat right, get enough exercise and sleep and to find at least some other outlet for diversion. If you can, seek the help of someone else who can spell you for a little while. As it is said so frequently, “nobody is indispensable.” I let certain activities lapse and selected carefully where I spent my time but I made sure that I had outlets that mattered to me, a quiet lunch, a massage, the purchase of a flowering plant because I liked it.
There will always be ups and downs in the caregiving process, but if you follow these commandments, there is a better chance that when you look back on this stressful time, you will have comfort in knowing that you did the best you could for both you, the caregiver, and for the one you supervised.