Some days, by no means all, I wake up disappointed that I am still alive. It’s not that I want to be dead, because I do love life and all its wonders and delights, but I cannot see any light at the end of my particular tunnel, and I am so damn tired and worn out emotionally that some mornings I don’t want to get up and keep going through this tunnel anymore. I need light; I need hope; I need to know there’s an end I will live to see. I want to be happy to be alive, but mostly I am only resigned because I am a dementia caregiver for my spouse. Dementia caregiving is a life I would not wish for anyone, not even my worst enemy, if I had any enemies, which, come to think of it, I don’t know if I do, but it’s one of those things people say. When you are a caregiver for a spouse with dementia, you enter a kind of isolating hell you never knew existed. Everything is turned topsy-turvy, inside out, and upside down. You are in a strange land with no road map, no guideposts, and no translator.
Before I continue this post, which may be considered quite negative by some readers, and I suppose it is a pity party post in a way, I want to make clear that my children are the light of my life, my joy. Purely and simply, our love for one another is what keeps me going. In addition, I am immensely grateful that my youngest son and his wife allow me to live with them and, more importantly, not just live with them but make a home with them. Their love, good humor, and help with my husband on a daily basis make life bearable, for the most part.
But what about the least part? A good question, which I will attempt to address for your illumination and understanding.
When my middle son developed schizophrenia, the psychiatrists and psychologists that we saw tried to explain that life is all about perception. I struggled with this idea because I loved my son with all my heart and did everything to help him. Why couldn’t he see this? But he firmly believed that we, his family, including and eventually mostly I, his mother, were cursing him and ruining his life. Everything I said or did was twisted into an ugly misinterpretation/misperception, and all my loving words and actions were contorted into vile lies that became, through some unfixable chemical imbalance in his brain, my son’s reality. Our two realities, while sharing the same actual events, were diametrically opposed to one another. How could that be? My logical brain reeled. My heart broke. My hope, however, did not and does not waver. It may be a mother’s heart talking, but I believe one day my son’s brain will clear, and he will see things as they truly are, and feel once again my unwavering love for him.
Dementia, however, is different from schizophrenia. It is not the challenging, possibly impossible, matter of getting a chemical imbalance corrected; it is the brain atrophying, dying, never to revive, and taking with it your loved one’s reality as well as your own reality, which is intrinsically linked to your loved one’s. Whether it is forgetting with Alzheimer’s Dementia, hallucinations with Lewy Body Dementia, apathy and indifference with Frontotemporal Dementia, or a host of other brain changes that are part of the many existing dementias, the changes in our spouses plunge us caregivers into nightmarish existences, no two of which are the same.
But for all the day-to-day horrors of dementia caregiving that remarkably turn into routines—that’s how resilient we humans are—perhaps the worst thing to happen to a caregiver is to have a family member or friend disparage your situation, your caregiving, and, bottom line, your sacrifice because caregiving is a sacrifice. Your life is on hold indefinitely. So any comment that makes light of your caregiving is a slap in the face that stings and stings.
For reasons nobody, doctor nor layperson, understands, people with dementia are often able to rouse themselves and present normally for a few minutes. So, if you are having a family barbecue or wedding or birthday party, your spouse, whose dementia behaviors make your life difficult at best and a living hell at worst, may, for a few moments, be jovial, polite, and engaged, behaviors you never see in your day-to-day life with your demented spouse. Then, a family member or friend says something like, “He/she is doing so well. Caregiving can't be so difficult for someone so nice and easy to get along with,” implying that your description of your caregiving life is an exaggeration if not a flat out misrepresentation. You want to scream, and, for a moment, you feel like the living embodiment of Munch’s painting “The Scream.”
Why do people make such hurtful comments and implications? We caregivers often discuss this in support groups because we all encounter it. The word perception might be suggested here, but I flat-out reject it, unless the different perception is an excuse. Often, I believe, people want to protect themselves from having to do something. Your caregiver’s life is so unimaginable that to imagine it would be to want to help, to alleviate, to comfort. But everyone is so busy, and genuine helping takes time away from weekends, holidays, and vacations, so friends and family may create a fictional alternative to your reality in order not to imagine it, and, as an extra benefit, not to feel guilt.
Truly well meaning people, I have found, do not make glib comments. If in doubt about what to say, it's better to be silent and give a hug, thereby adding light to the tunnel.
Caregivers live a lonely life filled with anticipating the next minor problem or major disaster; it is a daily life of guaranteed uncertainty; but most of all, we live a life of loss. Memories, jokes, shared glances, shorthand comments, traditions, sitting companionably together, making toasts to the future, all the simple things that make up a marriage, a relationship, are gone. We go into our futures, beaming with pride at our children’s graduations, dancing with delight at their weddings, celebrating with pleasure their jobs, and holding with exquisite joy and awe our new grandchildren, alone, all alone. The irony that is dementia is that our spouse is not dead, but still very much alive.
Because our spouses are alive, our caregivers’ desire to share these celebratory family moments with our spouses is as natural as breathing, but when we do try to share a special moment with our living, breathing spouse and are met with complete indifference, it leaves us gasping for the breath of a reality that is no more. We are in a tunnel with no light nor end in sight.
And what we caregivers need in this seemingly endless tunnel of dementia caregiving is companionship and validation because we do not get either from our demented spouse. We long for and appreciate kind words, thoughtful expressions of caring, and hugs. We need to feel connected to the outside world. My daughter takes me to lunch each week, and this is a highlight of my week. It gives me something to look forward to. My eldest son sends me NPR articles to read that keep me engaged with the world. My best friend John regularly gives me verbal pats on the back in emails. Students post things on Facebook for me. Each and every expression of kindness and caring helps and makes me smile. It is some light in the darkness.
Some mornings, though, when I wish I hadn't woken up, all that gets me up to face a new day is remembering that once upon a time, my husband and I had a great love for one another that resulted in our children, my favorite people in the whole world, and that awareness gives me the energy to live through another day with hope that I will one day see the end of the tunnel.