I look over and see her fast asleep, her head hanging slightly off the chair. I slowly and softly walk over and slide a pillow under her neck and cover her with a blanket. I place my hand on hers, watching her chest rise and fall.
She looks so peaceful, especially compared to the frazzled and angry woman who was with me just an hour prior. I wonder if she’s dreaming, and if so, what about. Is she seeing her late husband? Are they back in 1980, playing music together in a room full of people? Is she a little girl, running across the land on the farm that she grew up on? Is she holding one of her newborn babies, swelling with pride? I hope that her dreams are full of light and love and bliss; her waking moments have so much apathy, depression, and sometimes, anger.
My grandmother was diagnosed with dementia and the early stages of Alzheimer’s last year. We saw the signs a long time prior though. It started with little things. She would call and say that she was pulled over to the side of the road because all of a sudden she didn’t know how to get to her nail salon, even though she had been going there for years. One day, she called me in a panic because she couldn’t find her car keys and couldn’t go to work; they had been sitting on the table by the door the entire time. When I showed them to her, she swore up and down they weren’t hers. She would sometimes call people, even me, by the wrong name. It was those little occurrences that foretold that the disease had already started hijacking the brain of my vibrant, wonderful grandmother.
The day we found out that she did, in fact, have Alzheimer’s, I spent that night, into the early hours of the morning, researching. The only knowledge I really had was from what I had learned from TV shows, movies, and my pre-med studies. I scavenged the internet, reading and taking notes, adding books about Alzheimer’s to my shopping cart. I was ready. I was prepared. This will be easy, I would be ready. Sure, she would get worse and we would deal with that when the time came, but overall, I was armed with all my resources and weapons and we could take this disease to battle — and win.
It doesn’t matter how many books you read, how many support groups you go to, or how many times you meditate and reflect; you will slowly crumble. The thing that not many people understand about people with Alzheimer’s and their caregivers is that it takes a toll on the trifecta of your health: physically, mentally, and emotionally. Your body will be exhausted from running around all day, helping your loved one do all the things that they can no longer do on their own, i.e. bathe, cook, clean, go to the bathroom, etc. Your mind will be fatigued from dealing with the bills, the phone calls, the appointments, etc. It will be exhausted from the repetition of simple words and phrases, i.e. “Today is Thursday,” “Please, you have to eat,” and “No, you have to take your medication.” Your emotions will be drained from loving them so much, but hating this disease that is essentially taking them away from you.
She calls me her best friend. She may be my grandmother, but she tells me that she feels so close to me that she knows that she can talk to me about anything — she’s a kindred spirit. I’ve been through some traumatic events in my life, but I cannot bear the thought of my best friend not only turning into someone else, but a someone else who is angry and sad and mean. I can feel my heart breaking every time that thought appears in my mind.
Alzheimer’s is not just a disease that kills the host; it kills their loved ones, on the inside. And if that weren’t bad enough, it completes this process at an agonizingly slow rate, making the goodbye a long one. Alzheimer’s is a killer and a thief. It steals your loved one’s mind, taking memories, positive emotions, and their recognition of family and friends along with it. In summary, Alzheimer’s is a cold-hearted bitch.
While the road I’m on has just begun, and I don’t presume to know everything there is to know about Alzheimer’s whatsoever, I have learned some things so far.
1. Expect the unexpected. You don’t know how the disease will present itself today. Or tomorrow. Or even five minutes from now. One minute, you could be laughing hysterically, and the next, you could be trying to calm her down because she doesn’t realize where she is. You have to learn to be flexible and “just go with it.”
2. Don’t argue. Perception is reality and if she perceives something to be true, that’s her reality. Telling her that she’s wrong does not help the situation. It only pits me against her and she will start to resent me for it. In time, she will feel as though I’m the enemy and she won’t trust me. It’s more important to make her happy, than to be right.
3. Be a keen observer. Study her patterns. Learn what she does right before she starts to get angry or upset. See the signs. That way, you can try to contain it, or at the very least, you can hunker down and get ready for the storm.
4. Use the “process of elimination” method of learning. Don’t be afraid to try new approaches with her until you learn what works. You might go through many different options until you find one that works. And then, expect that to change. Eventually, that tactic will not work anymore. When that happens, get frustrated, cry, and then get over it so that you can try something else.
5. Allow yourself to be angry at times. I’m not a saint, and I don’t pretend to be. I get angry. I get angry at the disease, at the pain it causes, at the time we both have lost, at my inability to be a “normal” twenty-something, at myself. Get angry, do what you need to do, then release it. You can’t harbor it. Feel it, but then let it go.
6. Develop a thick skin and a very big reservoir of patience. There will be times that she says things that cut you, deep. Learn to take these things with a grain of salt and let it roll off your back. Be patient with her as you repeat the same sentence for the fifteenth time in the last hour. And try not to act like you’ve said it before; to her, this is the first time she has heard it. Treat it that way.
7. Forgive. Forgive her for the things that aren’t her fault, as ludicrous as that may sound. Forgive yourself for the things you get wrong, realizing that this is new for you as well. You’re still learning how to handle these situations and you’re going to get some things wrong. It’s okay.
8. Celebrate the small victories. Being a caregiver for a loved one, especially one with a neurodegenerative disease comes with a lot of hurdles and obstacles. I remember the first night she finally slept through the entire night, without waking up (she usually wakes up every half hour or so) it was as if she just won the Nobel Prize. When she was able to dress herself for the first time in a while, we were ecstatic and appreciated this small feat. Alzheimer’s doesn’t give you much to rejoice about, so appreciate those small accomplishments.
9. Get used to watching the same old shows, multiple times, even in one day. They are what she finds familiar and what she can relate to. New things can confuse her and then cause her to become upset. Find ways to make it fun. See if you can remember who the killer was on this episode of Diagnosis Murder. Try to guess how many times Rose will say something dumb, Blanche will do something slutty, and Dorothy will say something sarcastic on Golden Girls. Count how many times Barney Fife does something crazy.
10. Allow yourself to cry. As someone who doesn’t cry very often, especially as a female, I have shed my fair share of tears since her diagnosis. However, I bottle it up and try to put on a “strong” front, until I explode with waterworks. Allow yourself to cry as often and as hard as you need to. Cry until there’s nothing left, splash some cold water on your eyes, and “just keep swimming”.
11. Love. Love her, despite the times when you feel like you might lose your mind too. Remember that it isn’t her fault and she is hurting just as much, maybe even more, than you. Love yourself, remembering to take care of yourself just as much as you take care of her. If you allow yourself to deteriorate, how will you continue to care for her?
When this first happened, I thought I was armed with all of the right materials and knowledge to be able to handle this war. I was wrong. I am now armed in a different way. My weapons are the pictures and videos of the good times, the tangible reminders of the amazing lady that she has and, in my mind, always will be. My bunker is all of her sweet words, spoken at random moments when I least expect them. I will hold these words in my heart forever, to take comfort in and to keep me safe when the storm is above me. My armor is the many memories of us, that I hope to never forget, keeping me protected from any vicious things she might say during an episode. This armor, which includes the sound of her laughter that resounds in my head, will be impenetrable to any harsh words or actions that I may see from her in the future. You have to remember the good, hold onto it with a death grip, or the disease will chip away at you, slowly and painfully, until you are nothing but an empty shell. These are my only weapons, and I will use them confidently as I march into battle. While the end of the war approaches each minute, and no one can change the final outcome that will ultimately devastate me, I’ll be damned if I don’t put up one hell of a fight.