My husband has dementia.
It’s a shitty disease with no cure. The only absolute is that it will progress until nothing is left of the person but a physical shell. But here’s a fact about dementia that many don’t know. Until the disease reaches the “severe” stage, many sufferers present fairly normally, especially those who remain “high functioning” socially. It is only in the home environment where the true decline is seen and experienced by the 24/7 caregiver.
And it is the “high functioning socially” aspect of the disease that makes the present so difficult. My husband can pull off pretty much anything in a limited social setting. He can converse intelligently. He may have a short lapse in conversation, but for those of us of a certain age, who doesn’t every now and then? He’s aware of current politics, of science, of most of what is going on. The true ravages of his moderate-stage dementia are easily concealed when it’s only for a few hours.
I’m sure (am I really?) that people mean well when they say “there’s nothing wrong with him. He seems just fine.” But these people only see a small window of time. They are not living the 24/7 life with us. They don’t know the reality of our lives, a reality that I am not going to write about in excruciating detail because it is too personal and painful.
When a person is suffering from a physical disease – cancer is an example - no one argues with the FACT of the disease. No one denies the reality that the cancer patient and his or her family are living. No one ignores the medical evidence. No one tells the caregiver or the patient that they don’t have the disease or they aren’t taking the right treatment or they aren’t making the right long term care plans. No, most people keep their mouths SHUT even if they have a different opinion.
That courtesy has not been extended to me or my husband by several people who should know better. And that infuriates me, because as the 24/7 caregiver the last thing I need on my plate is some judgmental, self-righteous platitude disguised as concern, or worse, denial.
I am angry. I’m angry at this disease which is afflicting my husband. I’m angry at all the ways this disease is affecting our life. I’m angry at people who refuse to accept what is happening to my husband, who act poorly in response and who infer that I am exaggerating about the reality of my husband’s condition and our life. I’m angry that there is really nothing that my husband and I can do about what is happening to him and to us. I’m angry that this disease is making our life smaller and smaller.
So, why am I writing this essay? Well, I suppose partly it’s to put voice to emotions, for by speaking and naming what is eating at us, we somehow diminish its effect on us. More importantly, perhaps, is to bring some sort of awareness to people about dementia and how it progresses. It’s only at the very end stages that the personality has fled, leaving behind what most of us envision as a “demented person.” The journey is, unfortunately, death by a thousand little cuts. Just because you don’t “see” the decline, it doesn’t mean it’s not there. It’s there alright, and it’s affecting the lives of the caregiver and sufferer 24/7 without any respite.
It’s a shitty, cruel disease.