Oh, the stigma of having a mental illness! Once we got the diagnosis of dementia – Alzheimer Disease my heart sank and I thought: “How do I cope with a mental illness?” It was an honest mistake. Dementia of which Alzheimer Disease is the most prevalent form is NOT a mental illness. Yet, I too immediately classified this brain disease as mental illness. It was easy for me to grasp the outcome of a stroke, or brain aneurysm, but deterioration of the brain without such a direct cause was suspect and to be shunned. Yes, we have come a long way in recognizing what mental illness is but there is still a stigma about it and since dementia concerns the workings of the brain it all gets lumped into that basket of things not understood. It comes down to being ignorant, not knowing, a state we dislike, so we stigmatize.
Persons with a mental illness are no longer shut away in an asylum, or ‘madhouse’. Both understanding and treatment have advanced where we now recognize mental illness as just that, a mental illness. On the other hand dementia is a physical illness. Although this disease is being studied and research abounds there is still not a definitive cause for the more than 120 types of dementia that have been identified so far. Technical and medical terms like beta-amyloid protein fragments usually referred to as plaques and tau or tangles are batted around. I now can bat around such terms with understanding but they are the mechanics of a disease that attacks the brain and leads to death. You can begin to understand the complexity of the disease when examples include Lewy Body, vascular, frontotemporal, Parkinson’s disease and even Cruzeveldt-Jacobs Disease which is the human form of what is commonly called Mad Cow disease. Naturally the latter is an example not trotted out too often as the word ‘mad’ is a red flag to any raging bull or misunderstood brain disease which can lead to even more stigmatization.
Another honest mistake is to think that all these numerous forms are just a different kind of Alzheimer Disease. Like Alzheimer Disease these are types of dementia. In fact Lewy Body has its own abnormal protein called alpha-synuclein buggering up the works in the brain. Each one identified has its own pathology and just to make life more difficult there is also mixed dementia which is now recognized as being more prevalent than previously thought. That is usually a diagnosis which is a combination of vascular dementia and Alzheimer Disease. It signifies too that the two main engines of our body, the heart and the brain are both compromised. I think since research is ongoing we could wake up one day and hear that ‘mixed’ is not only two, but three or four or more ganging up on one brain.
My Bert is a classic case of Alzheimer Disease. The last doctor told him his blood pressure was better than many younger people, to which Bert replied: “I am only 19.” I was not going to correct him to say he was a toddler in the brain department! Yet, it is true that my Bert is healthy. He eats well, has not put on or lost weight. Whatever negative symptoms he exhibits, and there are many, all stem from those darn plaques and tangles that are filling up his brain, interfering with the memory and communication processes. Messages are confused, delayed, misunderstood or not understood at all. We are both frustrated.
It is uncharitable to stigmatize anyone for any reason. We have had the honour to meet and become friends with a most accomplished, outstanding citizen, and the epitome of a gentleman who had actually been institutionalized in a mental health facility twice. He was completely cured and felt enormous gratitude for the professional help he received. He acknowledged the fact of having a mental illness. He knows the difference between that and dementia. Many of us do not. However we can learn.
The Meander: A doctor making rounds in a Mental Health facility sees a patient writing furiously. “What are you writing?” He asks.
“A letter.”
“Oh, who are you writing to?”
“Myself.”
“What does it say?”
“How the heck would I Know? The postman hasn’t come as yet!”
A doctor making the rounds in a Memory Care facility sees a patient painstakingly forming letters on paper.
“You seem to be writing a letter.” He says.
“Yes.”
“Are you writing to a friend?”
“Yes.”
“What does the letter say?”
“What letter?”
Thanks for continuing to shed light and provide insight into the darkness that is Alzheimer’s. Although I enjoy the stories that bring a smile or some sadness, I am also grateful for the opportunity to better understand Alzheimer’s. Big hugs…
That is my goal. Thank you and big hugs right back at you!
You sum up our general lack of knowledge and understanding of this very well, Paula.
Thanks also for the bits of humour at the end. I imagine humour must help you cope when things get very challenging. Wishing you strength, dear girl. Wisdom you already have lots of. I love your posts.
What a generous comment. It is especially appreciated as I know you are very much aware of the healing power of humour. I do not know how I would cope with out it. Thank goodness I was blessed with a sense of humour, weird though it may be. In fact, I think the stars were well aligned when I was endowed with humour as they knew I would certainly need it throughout my life. Laughter IS the best medicine.
We never stop learning, Paula. I never knew that Alzheimer Disease is classified as physical.
I am impressed, though, that you have educated yourself and others about it. Just last Sunday I visited a cousin of mine (she has cancer of the blood and Alzheimer). Her daughter, with whose family she has been living, is still in the work force and is so stressed out that she eventually put her mother in a home–reluctantly. It is great that you are retired and can devote yourself to looking after Bert.
Glad to pass on any information I can, Erma. It must have been heart wrenching for your cousin to put your mother in a home. I am sure she got a good one. Service varies but there are many homes who are doing a yeoman job looking after those in their care. I am grateful to be able to do all that I do for my Bert. I also do spend the time to educate myself, to find the information I need to be as effective a caregiver as possible. As I learn I will try to pass it on. Your comment is appreciated.
Wow, yet another fantastic post. I cant say I’ve ever come across this kind of confusing, mistaking mental illness and Dementia. My mothers vascular Dementia is quite distinct. Being that I studied Mental illness in college as part of my Social Work work, I have seen people who are classed as mentally ill. It’s definitely very different from Dementia. Sadly, the stigma for mental illness still exists. Sometimes a stigma also exists for those with Dementia & Alzheimers. I used to think people would look at and treat my mother differently because of her disease. At first, they didnt but as the years past and the disease progressed; we all definitely treated her differently. We had to. For her own sake and ours. There is no right way to care for someone with Dementia or a mental illness. I think it’s about finding and making a plan that’s individual designed to benefit them in the best way possible. That’s just how I look at this problem; it’s how I cope. Getting support and comfort from friends and others is a great and necessary part of any good caregivers plan. I’m most grateful for that myself. Again loved this post Paula.
Thank you Stephanie. Yes, one reason people with dementia are stigmatized comes from the fact that it is brain that is being attacked. Some of the behaviours seen in dementia mimics those with a stroke e.g. aphasia, but some mimics those who suffer from a mental illness as sundowning, panic and anxiety attacks. You have identified a very important approach in caring for someone with dementia. Each one is an individual so the way you care for your mother is not the way to care for all mothers with dementia. Likewise the way I care for my Bert is not the way to care for all spouses. Take all support and help you can get. We need it.