I have been thinking about sacrifice for a great number of years. The meaning I’m referring to is “to give up something usually for a better cause”. As a caregiver, I sacrificed a lot of things in my 19 years: autonomy, independence, companionship, sexuality, and financial security. Being in a very loving marriage, I had to help my husband through his disease. He had no choice, and I woudn’t even consider the other major choice which was to leave him! Some people do.
The Emergency Departments of today are scary places for caregivers and those with dementia. A person with dementia is essentially experiencing slow and steady brain death in various but relatively predictable areas of the brain. As the disease progresses, the person will have all of their senses affected in some way: sight (narrowing of the field of vision), sound (loud noises hurt and are scary, constant noise causing sensory overload), taste ( changes of likes and dislikes), smell (loss of detection of smoke, gas, chemicals, body odor, spoiled food, urine or feces) and touch (more sensitive). Because of these sensory changes, the caregiver constantly adjusts the environment at home to reduce anxiety and have a more predictable (routine) and successful day.
Holidays are exciting times of the year, but they can be very stressful and fraught with many pitfalls if you don’t plan carefully beforehand. When planning for those special events you must take into consideration how far into the dementia your loved-one is, how much help they will need, how quickly they become overstimulated, how much rest they require, and how much recuperation time they must have after the event is over.
The other night I had a dream, really a nightmare I guess. It was one of the most emotional and anxiety producing dreams I have ever had. The setting wasn’t clear, but I think I was in a high school classroom, and we were taking a test. It wasn’t all written. Some questions you had to answer on paper, some were multiple choice, but others were a test of following through with the directions and completing a finished product.
Most of the dementia drugs presently prescribed are cholinesterase inhibitors. To understand how this works in the brain, we have to learn how the neurons function. We have over 100 billion neurons in our brain. Neurons are the message relaying cells. They consist of a cell body that houses the nucleus , mitochondria, and other important systems that keep the neuron alive. Each neuron also has an axon, which is a long “conducting” tube that extends from the cell body. At the end of the axon are the dendrites or “small branches” that extend into the space between the dendrites of the next neuron. The neurons don’t physically touch each other, so how does the electronic message get from one neuron to the other?
Too often the caregiver doesn’t think about this scenario of becoming ill until it happens. At that time it’s really too late and way too stressful to deal with arrangements that need to be made. Caregivers need to think about the possibilities when they can think clearly, weigh their options, and plan with less stress. Here are some pointers in making plans in case such a scenario/sickness/incapacitation comes your way!
Dealing with the Alzheimer’s diagnosis is always challenging. Although we were “glad” to have the diagnosis because it meant that Jim and I weren’t “nuts” noticing all the changes that Jim was going through, the diagnosis certainly singled us out. Being a person with early-onset or the caregiver of one brought with it special circumstances that made me feel like “the odd man out”.
Taking care of yourself as a dementia caregiver is something most caregivers overlook. Very few of us choose to be a dementia caregiver as a career in our personal life. We end up there because someone close to us, usually a family member, is sick and needs our help. Most of us don’t have the money to hire round-the-clock caregivers to perform that task, so we take it upon ourselves out of love, or out of necessity, or both. Sometimes it just “falls in our lap” because we are the family’s logical choice or there is no one geographically closer. We are “tapped on the shoulder” and … “You’re It!”
Dementia is the broad umbrella term used to describe a decline in mental ability severe enough that it affects your daily life. The activities of daily living that may be affected are grooming (dressing), toileting, eating, medication taking, decision making, loss of reasoning skills, reduced visual perception, or personality changes.
Glen Campbell died today of Alzheimer’s disease at 81 years old. Glen holds a very special place in my heart because he was diagnosed the year that Jim died.
I am a person who listens to the words of a song. It’s the meaning that makes me like a song, and whether it plays as a movie in my head. Many of his songs did. Glen was also from our era. Many people have said that after a person dies of dementia, they were so courageous . . . and they are. Anyone who faces their own demise before old age is courageous be it dementia, or cancer, or ALS. It’s a road that one can’t imagine unless you are the one facing it.