In dementia care, I have never met anybody who likes to admit weakness.
The inability to do something is a truth of dementia care. Dementia becomes the elephant in the room – the topic that no one wants to talk about. This elephant of dementia must be approached and discussed openly.
Defining Dementia and its Denial in Demntia Care
To ensure that we’re all on the same page, let’s define dementia — and denial about dementia.
Dementia is a brain disease that causes symptoms such as “occasional difficulty with language skills, like word-finding and vocabulary. [The person living with dementia] may explain away these situations with a general excuse about forgetfulness or fatigue,” writes Ashley Huntsberry-Legg.
People living with dementia are often in denial about their changing abilities. When they can’t complete the simplest of tasks, they will deny needing any help. For example, when a parent forgets to bathe for a week, misses appointments, or leaves food on the table, he will insist nothing is wrong.
“Typically [they] insist that they do not need help and are fully capable of performing daily activities independently despite clear evidence to the contrary. They may also react with anger when reminded of their mental impairment, which they are fully convinced does not actually exist,” writes Huntsberry-Legg.
Is it Natural Aging? Or is it Dementia?
Dementia is something that can be tested for and diagnosed. A family doctor can complete a complete physical exam, including blood work. Mom or Dad will need to also see a specialist for a brain scan, a psychiatric evaluation, and a neurological test.’
My father had Alzheimer’s and underwent testing. I remember him struggling with the “clock test” – a common tool used to test for dementia. The doctor gave Dad a page with a pre-drawn circle. The doctor then asked Dad to create a clock by writing numbers and drawing hands to signify a certain time. One might think these were simple, even childlike, requests. Yet Dad was unable to do them.
A neurologist may prescribe medications. These are effective in the early stages of dementia care and may slow the condition’s advancement. Each has its own side effects, which may become problematic. The three main medications are:
- Donepezil (brand name Aricept, used to treat confusion)
- Galantamine (Razadyne, Razadyne ER, and Reminyl)
- Rivastigmine (Exelon)
You must exercise caution and common sense with these medications. My sisters and I tried Aricept with our father but didn’t notice much improvement. However, we may have started using this medication too late.
Early diagnosis leads to early treatment, so don’t delay.
Denial About Dementia Snuck Up on Me
When the Aricept didn’t work as promised, my sisters and I nearly disbelieved the dementia diagnosis. I vividly remember Dad repeating stories and relying on his pocket notebook to remember things. We chalked that up to simple absent-mindedness (it’s what happens when we grow older). As we found out later, this was much more than simple “senior moments.”
Dementia Care: What Happens After a Dementia Diagnosis
Even following medical testing, people may try to run and hide from dementia.
How do people pretend they don’t have dementia? They become silent. Or they are stubborn about not doing activities. They say they are tired. Or they don’t feel well. They lose their balance and fall. They have traffic accidents. They lose their appetite. Their memory lapses.
Dementia can steal even the most significant memories. Dad forgot my mother’s birthday. He was cognitively aware enough to realize his mistake, and felt intense shame. I drove him to a shopping mall and we selected several gifts for Mom. Everything turned out well.
Family caregivers can also hide from dementia care. Or, they become a “super caregiver” – one who can do everything, not have to talk about it, and is not fazed by dementia. Sorry, you will need to be realistic now. The red tights and cape cannot completely protect you.
Is Dementia Painful?
An affected individual can experience pain. They may, however, not be able to verbally explain or point out the source and intensity of pain. Caregivers should be cognizant of a senior’s facial expressions and body language.
Dementia can also be painful for caregivers to watch. All I could do for Dad was to ensure that he was well taken care of and safe.
After my mother died, my sisters and I knew that Dad could not live independently. We moved him to a care home. A small group of people lived there and received around-the-clock dementia care. Then, we moved him to a secured Alzheimer’s community.
Not long after Dad’s second move, I experienced one of my most painful days. Dad asked me who I was… and this was not the only time that he posed that question.
Let’s Not Talk About Dementia
Family members can deny oncoming or existing dementia. They feel awkward or embarrassed. They assume friends would not understand. They resist sharing their personal caregiving stories at the lunch table at work.
Family members may not want to look ahead, resulting in denial about dementia in their parent or spouse. We are eager to find other excuses. Dementia can be more difficult to accept when someone you love is involved. When something happens very close to you, you cannot always see it. The changes happen slowly and subtly, and are hard to notice.
Keeping quiet, as I learned, can also be a way of avoidance. Fair enough. Natural aging, oncoming illnesses, and death can all be unpleasant subjects of conversation.
Back when my own parents were alive, I foolishly convinced myself everything was fine. Mom had Parkinson’s disease and Dad was showing the early signs of Alzheimer’s disease. Yet I didn’t step in. I didn’t “wake up” to my parent’s needs until my Mom was diagnosed with Leukemia. In retrospect, a “proactive” approach to caregiving can be far better than a “reactive” approach.
My Family Can’t Care For Me
Sometimes, an elder’s family can’t be long-distance caregivers, too busy, or unwilling to help. This happens more often than you might think. When it does, the local probate court will appoint someone to act as a legal guardian or conservator. This person becomes responsible for the elderly person’s care.
If you feel you can not provide good care for a parent, you can seek a legal guardian who can care for them. Visit your local probate court. There, you can learn more, and even collect the paperwork necessary to start the process.
Keeping Quiet About Dementia Won’t Work
Denial of dementia is dangerous for the affected person and their family caregiver. The dangers of denial about dementia include:
- Car accidents
- Medication overdosing
- Forgetting to use medications
- Loss of balance and falling
- Wandering into traffic
- Judgement lapses
- Delay seeking help
- Financial risks
Clearly it’s Dementia! What Can I Do Now?
What can a family caregiver do when their loved one denies any signs of dementia?
“From time to time, we’re all in denial about various aspects of our life. It’s how we cope – denial masks emotions of grief, loss, fear and uncertainty,” writes Marc Agronin.
Things get stickier when our parents or spouses are involved, continues Agronin:
“We see things changing and notice the person losing the ability to do what they once could. Often we’re reluctant to step in and take over as it may feel like we’re giving up the person or crushing their dignity. Yet, it can be heart-wrenching to watch them suffer. We want for things to stay static and for the person (and us) to maintain independence.”
When dementia becomes apparent, family caregivers need to take further legal steps. Locate the affected individual’s will. Read it, to direct you about current, future, and end-of-life plans. Caregivers must also become familiar with legal documents. These include Guardianship, Durable Power of Attorney, Living Trust, and Living Will. A lawyer can better explain these – any of which may become necessary.
Facing Dementia and Dementia Care Head On
Recognizing dementia is only the first step. Caregivers must now face the condition and act.
Caregivers can “accept that denial is often part of the dementia journey, explain it in more gentle terms, try a few therapeutic lies, appreciate that ignorance can be bliss, take measures to keep them safe, and find ways to work around it.”
A therapeutic lie is introducing a doctor as a ‘friend’ who wants to help. You could introduce the new caregiver as someone who is here for your own peace of mind, or to keep you company. This can be gentler than saying this person is here to “take care of you.”
The Best Advice?
Recognizing dementia is one of the best things a family caregiver can do. It is not something that will simply disappear. You may be in for a long road ahead. Dementia is intimidating, but family caregivers should not run from it. Meet dementia head-on.