Today is World Alzheimer’s Day and September is also Dementia Awareness Month (with November being Alzheimer’s Awareness Month). Although these manufactured days and months are really created for other people, they always feel a little incongruent to me, because the truth is that when you are living up close and personal with one of these diseases in your home, every day is Dementia Awareness Day. There is not a moment that I forget its presence in our lives.
In the beginning, one can have dementia and still be pretty high functioning, but as these diseases progress, they start to touch everything. Before it stole its way into my home, like most people, I thought Alzheimer’s was dementia and that it was mostly cute little memory lapses and “Oh, look, Grandpa put his napkin in his biscuit again and is now complaining that his sandwich is dry. That guy!”
But the truth is that it’s so much more. As proteins like beta-amyloid and tau accumulate in the brain, they form plaques and tangles that we think slowly rob the brain of function until they spread and eventually the person dies. And that’s the heartbreaking thing about dementia. Even though it is the leading cause of death in the UK and 6th in the U.S., there is no treatment and there is no cure, only the certainty that the disease ends in death. And it’s not just an old person’s disease either. Early-onset forms are on the rise.
The difficult thing about dementia is that (at least in the early and mid-stages), depending on the part(s) of the brain affected, personality of the person with the disease, and type of dementia (Alzheimer’s is just the most well-known of a host of forms!), behaviors can vary greatly. While my mom had some short-term memory issues in the beginning, her ability to reason and do things like complex math remained intact for a long time. Even now, she can figure out percentages, but she doesn’t remember what she did an hour ago and sometimes has really inappropriate emotional reactions to little things or nothing at all. She can’t be left alone–not ever, because her judgment isn’t great and it isn’t safe if I don’t want her heating pork chops in the toaster or wandering off and not finding her way back.
Other people have semantic variations, where they lose the ability to communicate and there are still other forms where other abilities are compromised. But as the disease progresses and more parts of the brain are affected, eventually there starts to be a lot of overlap in forms — mobility issues, loss of continence, difficulty processing too much sensory input at once, ability to swallow, and ability to perform self-care (a common thread is challenges with and resistance to bathing). And then, there is anosognosia, where some people do not have the self-awareness to know they have a disease, which further complicates things, because they just don’t understand why they need this medication or why it’s not safe to drive or why they suddenly need to wear a diaper or why they can’t stay or go out alone. Can you imagine as a functioning adult having someone suddenly tell you, “No, you can’t go to the Starbucks alone. You need to wait until I can take you.” Wouldn’t it make you angry?
It is a hard, hard road, not just for the person with dementia, but for family caregivers too. As loved ones decline, we are faced with hard questions like placing them in care facilities (some are caring and good, but it’s always dicey, if you know about some of the abuse people suffer in others) or hiring in-home care or giving up a career to do it ourselves. Did you know that family caregivers provide $470 billion (yes, you read that right BILLION) in unpaid care each year and our average out of pocket costs are $10,697, often at great sacrifice to their own futures. I know I have already spent just about my whole 401k on care for my mom, so no retirement for me. Before we are done, I will likely have to sell my childhood home to finance the rest. I do work and am lucky to be able to work at home doing something I love, but my hours are limited, because, hello, 24/7 care needs. And I am in no way unique. There are people in a much direr straights and we are lucky to have a home to sell.
And let’s talk about support for care needs. Not a millionaire? Thinking about using Medicaid? It’s great it’s there, right? Yeah, well, not so fast. It’s different everywhere, because it’s administered by the states and they get to make up their own rules. Living in Oregon, my mom would qualify for about 60 hours a month of in-home care (mind you, she must be supervised 24/7). Living in some other state, she might not care for anything at all.
People sometimes qualify for Adult Day-Care (but, again, not enough to help with any kind of significant respite, but, even that is not for sure, because care facilities (and this is true of living facilities as well) will often kick people out, if they have any kind of behavior management issues. My mom has FTD, which can come with behavior challenges, and went to a respite facility specifically designed for individuals with dementia for about a year until she was nicely asked to leave for (gasp) exhibiting symptoms of her disease that were hard on the staff.
If it’s hard on a team of 10, imagine how it is for ONE family member managing it 24/7, 365 days a year. In fairness, they did try to work with us and move her to a sundowning program, but the end result is no respite for me and no daycare or socialization for her. We’ve adapted, but the truth is that our systems for dealing with these diseases are half-assed at best and mostly place the burden on the caregiver to give up significant parts of their life or just say “Too bad for Dad. Guess he’s on his own now!”
It is perhaps one of the saddest aspects of these diseases that services often fail when they are most needed. I didn’t need respite when we were in the sweet shadowing or mild memory lapse phase, but on days where I wake up to door slamming, screaming and being called a fat, lazy, bitch until I want to cry, yeah, I could use an hour off here and there.
And don’t think it’s just respite care. Even doctors lose interest when they see that they are no longer making any progress treating the untreatable. That sad truth is that many are just not well educated on dementia, especially the rarer forms. I don’t know if it’s discomfort at facing their own lack of ability to do anything or frustration or what, but there is a huge learning gap and it’s often clear that doctors and medical staff have no training on how to interact with an adult with dementia.
And then, there are people. There are some true blue friends who check in regularly or do nice things with like leaving boxes of chocolate on your doorstep because they know it’s been a hard day. But for every one of those, there are several who fade away, even ones you thought you were really close to. These diseases are isolating and change everything. I am only in the middle of my journey and I know things will never be the same again. Caregiving has changed me so profoundly as a human being and it’s changed my view of a lot of people so much that things will not just go back to normal with the ones who disappeared once it’s all over.
And then, there are the strangers. They too are a mixed bag. There are the ones are so amazing, you could kiss them. They are the ones, who smile and play along when your loved one thinks she knows them (she thinks she knows everybody!) or kindly offer to help when things go wrong or just treat your loved one with compassion, like a human being. But then, there is also the guy who uses the public meltdown your loved one is having to cut in front of you in line at the pharmacy while an employee threatens to “call someone” (aka the police) and the woman who loudly proclaims to her friend in front of your person that she “stinks” (remember I said bathing and also continence were sometimes issues?).
And, at the same time as all of that, there are moments that you treasure, like rides into the country or the same stupid joke that makes her laugh every time you pass a Jack-in-the-Box (Her: Why is Jack in a box? Me: Because he wouldn’t stay in the bag) or when you sing together or when you play your violin and she dances like she was 17. Or, my favorite, when after days of crabbiness or forgetting who you are, your loved one’s face suddenly lights up with recognition and she grabs your hand to tell you she loves you and for one precious, fleeting moment she is just your mom again and you love her and she loves you.