The Humerus NP
Practical Advice from an outspoken Nurse Practitioner
Written by guest blogger: Sunshine Unterwagner, BBA, RN
As I’m sure you know, dementia affects a vast amount of people in America, more women than men. It is a disease state of the brain that, depending on the area of the brain affected, can affect memory, motor skills, non-voluntary functions, behaviors and moods. There are several stages, and depending on the material you read, it could be divided into 3 stages or 7 stages. I prefer the three stage explanation, as it is just easier.
In the beginning stage, the person is newly diagnosed. This person can still function independently, maybe even drive a car. They may forget things that have happened in the recent past, such as a conversation with a family member or an appointment with the family doctor. They may misplace items even when they’ve always put them in the same place for years (such as a purse on the hallway table, or keys in that purse, or dishes in the cabinet). These may be “silly” actions, but nonetheless, happen often. Remembering names and dates may become a problem, forcing the person to feel uncomfortable in social settings. The person may begin to not enjoy the social settings they once have because they’re embarrassed that they can’t remember the names of close acquaintances, like pastors, best friends, and coworkers. They may stop going to church, family functions, and dinner parties. Things for the caregiver to focus on in the first stage: reorientation, encouragement, normalcy, talking about memories and safety.
In the middle stage, the person will be more dependent on those around them in order to function day to day. Cooking may become too complex for them to do. Anything with multiple steps is almost impossible to do without guidance and assistance. Even activities like brushing teeth may need coaching – pick up your toothpaste, twist the lid off, pick up your toothbrush, squeeze toothpaste onto your toothbrush, put the toothpaste down, put the toothbrush in your mouth, etc etc. It’s important at this stage to keep their safety in mind, first and foremost. This person should not drive a car – ever. Their depth perception is not the same, so coming to a stop sign she may misjudge the distance to the stop sign and actually pull into the intersection before stopping! Telling the difference in colors, or even the meaning of the colors, on the stoplight will become difficult or impossible. Also perceiving where the sound of oncoming emergency vehicles are coming from is not as simple as it used to be. It goes without saying that remembering where they are going, where they’re coming from or how to get there will be a task they will not accomplish.
Behaviors that seem like the person is acting out may become apparent. For example, while sitting at the table in the morning for breakfast, she may be served toast with jelly and a glass of milk, the same as every other day. This day, she may throw the milk across the table and scream something. Why did she do this? The caregiver will need to be an “investigator” to try and figure what was bothering her. It may not have been the milk, but rather it could be that she is too warm or cold this morning, or that she wants to watch TV instead. I always say that the person is on Planet Dementia in this stage, where the rules that we follow here on Earth are no longer in place. In their world, Planet Dementia, we have to follow their rules – which make no logical sense. Reasoning with a person while they’re like this is futile, and can cause even more frustration and problems. Staging a “scene” from their past may be helpful, with photographs, clothing, sounds/music or even furniture arrangements may be helpful. For example, a person that continuously tries to go outside every morning may be trying to “go to work” as they had for many, many years. So, in order to help them “go to work”, you could set up a desk, with items they used (pens, graph paper, envelopes, books, files, etc) and allow them to “work”. If they always came home and showered AFTER work, a morning shower may not be conducive to them. Try to follow the routines that they followed for so many years of their lives.
The person may become incontinent (cannot tell when they have to urinate or have a bowel movement) and have accidents in their clothes. Adult “diapers” or briefs may be necessary. Dressing, bathing, grooming, toileting, housekeeping, cooking – all these tasks will need to be done with great assistance or completely by the caregiver. The caregiver, because they are doing everything for the patient, can become very tired and worn down. It’s important that the caregiver takes needed breaks, accepts help when offered, and continues to keep medical appointments so that they can be healthy enough to take care of their loved ones. This is vital. Things for the caregiver to focus on during the middle stage: Safety, patience, nutrition, skin integrity, supportive network, talking about memories and writing them down, and caregiver rest.
Because dementia is a life-limiting chronic illness, this last stage is one that is the toughest for the caregiver. Because the brain doesn’t communicate to the body affectively, important tasks like eating, swallowing, and walking will become very, very difficult. The ability to pick up food and place it in their mouth, chew it and swallow it will decrease, and eventually cause great weight loss. Swallowing will become difficult, making the person more likely to aspirate, causing food or liquid to enter the lungs where it doesn’t belong. This can cause pneumonia, possibly leading to death. Falls increase along with the possibility of injury, so the patient may become wheelchair or bed bound. Behaviors can become difficult, or even swing the other way making the patient nicer than they’ve ever been. Conversations will become limited, usually less than 6 or 7 intelligible words at a time. At this stage, the person becomes “total care”, as stated in the medical community. Hospice should be consulted at this time or as they enter the third and last stage of dementia. Things for the caregiver to focus on during the last stage: safety, comfort, quality of life, reconciliation, peace, and support.
I know that this message seems all doom and gloom, and I apologize for that. I know it’s difficult watching someone you love fight this long battle against a disease with no cure. Medications are available to slow the progress of the disease, but the cure of dementia is still to be discovered. That’s why it is so important to support organizations such as the Alzheimer’s Association, and their endeavors to find that cure. They have a wonderful and resourceful website, www.alz.org. The time that you have with your loved one is precious and dear. Each day is a gift from God. With dementia, the next day or even next moment may be an uncertainty with what to expect, but just know that you are needed and valued and loved by this mother of yours. And even though one day she may not remember your name, she is your precious mother. A gift from God.
Sunshine Unterwagner, BBA, RN
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Melissa is a military spouse, mom, and professional boo boo fixer. She practices as a Nurse Practitioner in Northern Virginia and is passionate about teaching the public how to effectively respond in emergency situations. She founded Rapid Response CPR, LLC in 2017. She blogs to share her medical knowledge in a fun, yet practical way.
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