I am stressed, no, that’s wrong, I am beyond stressed, I am ready to throw myself off a cliff . . . but, of course, I would never do that, not yet, anyway. I am a “caregiver,” for someone with “Alzheimer’s disease.” That someone just happens to be my wife of thirty-four years, and I would be lying through my teeth if I said caring for her is a walk in the park. Let me tell you . . . it isn’t!
There are no books that prepare you for this, and there are no manuals, complete with instruction guides, with step-by-step directions on how to deal with and fix, every issue that arises. Every situation, every individual, every minute, every second, is different from the struggles of other “victims,” and “caregivers.” Yes, I said victim, because that’s exactly what anyone with “Alzheimer’s” is. They are victims of a horrible disease that sneaks in during the night and steals their memories, their courage, their life-force, leaving them hopelessly, confused, frightened, angry, and sad.
As a “caregiver,” through “love, patience, and understanding,” I choose to try and make her happy and comfortable. Now, that doesn’t mean I don’t sometimes feel like I’m going to snap like a biscuit, and crumble to the ground, because it does happen on occasions. After all, I’m only human. I hurt, I cry, I feel pain, sorrow, and desperation, like everyone else. My situation just exacerbates these feelings ten-fold, and it isn’t fun at all. It’s Hell on Earth!
Unless you are, have been, or personally, witnessed, the struggles and pain of an “Alzheimer’s Caregiver,” then you have no idea what a “caregiver,” goes through on a daily basis. It is so much more than just watching them and taking care of their basic needs, that is just the proverbial tip of the iceberg. It’s attempting to decipher what they are saying, talking about, or asking for, because they forget words, make-up words, or tell a whopper of a story that never happened. It’s opening the bread box and finding a melted pint of ice cream, leaking everywhere. It’s having to hide all the condiments on the kitchen table, because ketchup by the cup full doesn’t go well on a salad.
It’s going to grab a fork and realizing that they have all been thrown away. It’s gently and lovingly explaining to them that when they put a bathing suit on, they’re not supposed to put it on over the clothes they are already wearing. It’s trying to gauge how difficult and angry they’re going to become once the sun goes down. (It’s called sundowning and it is exhausting and frustrating) It’s looking at old pictures together, then getting your spirit crushed when the person you’ve been married to for 34 years, points to a photo of you, and says; “who’s that?”
Society, in general, has no problem accepting a diagnosis of “Alzheimer’s disease,” when it involves an individual over the age of sixty-five, because it’s considered a “normal” disease to get when you’re an elder. But, what about the individual, like my wife, who, was diagnosed with “Early-Onset, Alzheimer’s disease,” at the young age of fifty-one? It is my belief that no one likes to talk about “Early-Onset,” because it frightens people approaching their mid-forties. Well, here’s the skinny, you all better start talking about it and pushing for public awareness as well as, funding for research, because it’s going to get bad . . . very bad.
Right now, there are more than 270,000 people in the United States, alone, under the age of fifty-five, who have been diagnosed with “Early-Onset Alzheimer’s,” and that number is projected to triple by the year 2025. Will you be one of those “victims?” For your sake and the sake of your family and friends . . . I hope the hell not! Unless something is done about it soon, our healthcare system is going to be crippled by the surge of “Alzheimer’s,” victims.
There are “Alzheimer’s support groups,” within each state, but you’d be hard-pressed to find one for people and families, dealing with “Early-Onset, Alzheimer’s, disease.” Because of this, I joined an online group and have met a few “caregiver’s,” of people living with “Early-Onset.” There is this one guy, (I’ll call him Bill to protect his privacy), whose story is almost a mirror image of mine, with a few exceptions. Bill is 55 and his wife is 56 years old. His wife was diagnosed with “Early-Onset,” at the age of fifty. They have two sons, one graduated college a couple years ago and the other is a senior in college now.
We share our concerns and fears about being super stressed, fearful, and sometimes even, resentful, but we both agree that loneliness, is one of the most difficult things we have to deal with. Bill has stated that before his wife was diagnosed with “Early-Onset, Alzheimer’s,” they had a close circle of friends they would go out with or go over their houses for dinner, but as his wife’s condition progressed, those same “friends,” became distant and pretty soon, very rarely even called to see how they were doing. He said that there is just one couple who still drops by every so often to visit, but it’s tough watching his wife try to interact and comprehend the conversation taking place.
Both of us understand that going out to a restaurant can be, and is, a living nightmare, unless you go someplace where the use of fork’s and knives, are not required, and neither is reading, You see, they can’t read a menu if their lives depended upon it. And reading a menu to them not only overwhelms their senses, but also humiliates them. Most time the item is just picked out by looking at the pictures of the food on the menu. They cannot order it on their own because they will; not remember what they’re getting, won’t be able to get words out that make any sense, or say something completely unrelated to ordering food. Also, unless they can easily pick up their food using their hands, such as; burgers, chicken fingers, etc, the chances of them figuring out how to use the knife along with the fork are slim to none.
I completely understand where he’s coming from, the loneliness at times can be unbearable. These are supposed to be the best times of our lives. The kids are grown and mostly on their own now, and that new found freedom of doing what you want to do and going where you want to go, is supposed to be the beginning of your new life. Sadly, that life never came for either me or Bill, and instead we have to sit back and watch our family and friends go on all sorts of great vacations and road trips, as we sit home sinking deeper and deeper into despair. It’s not that we begrudge anyone, not at all, but unless you are a “caregiver,” you’ll never understand why we feel so secluded and lonely.
We are moving and it’s heartbreaking and sad on so, so, many levels. We’ve lived here for more than twenty years, but this is the house my wife was born in and it’s been in the family for almost seventy years. Like us, the house isn’t aging well, and we hope the new owners will give it a new life . A life that we sadly, just can’t provide right now, a life, like our own, that I wish there was some sort of magic spell, to make this nightmare go away, healing both my wife and I, and giving us back our lives. Yet, I know of no magic that can undo what the universe has given us and quite frankly . . . it sucks!
The move is confusing my wife more than anything else right now, and I’m not sure how she’s going to handle the actual, move, or how she’ll be after we settle into our new place and that frightens the hell out of me. I have had to hide the boxes that I pack from her, because all I have to do is turn my back for one minute and she’s unpacking them, putting all the stuff back in all sorts of fun and inappropriate, places. I have even found a smaller, bag, of clothes in the vegetable drawer, of our fridge. Now, isn’t that exciting?
The dedication, patience, and love of an “Alzheimer’s caregiver,” is never to be questioned . . . never! We go through so many emotional, events, on a daily basis, that by the end of the day you feel as though you have nothing left to give. But, somehow, someway, we figure it out, and find the strength to keep going. So, if you associate the term “caregiver,” with someone who just makes a few meals and sits and watches television all day, then you are sadly mistaken. Keep this in mind because statistically, many of you are looking at your future, and the storm is about to make landfall in your own backyard. When this takes place, you will see that when you’re a “caregiver,” it’s . . .
It’s asking them to set the table (just for two), then looking down to a table with; six plates, one fork, twelve spoons, a spatula, and a coffee mug. It’s being outside on a very, hot, day, and asking them to get you a glass of water (because you’re busy doing something else), and they return and hand you a pair of your boxer shorts, instead of a glass of water. It’s being the resident “asshole,” and it doesn’t matter how much you do for them, or care for them, because the “caregiver,” is always the “bad guy,” the asshole. I was gently, warned, about this by her neurologist, but in a comical/truthful, way, and he was so right about this. (my heart goes out to all you future assholes.)
It’s carrying on what you think is an intelligent conversation with them and then asking a relevant, simple, question, and their response is something, completely off the wall, and off topic. They have absolutely no idea what you’re talking about, or any memory of the conversation you were having seven seconds ago. These are the moments when the strongest bouts of loneliness seem to drag you deeper into despair. It’s hearing the toilet flush multiple times, walking into the bathroom and catching them attempting to flush a stack of paper plates down the toilet. And then for the next half hour, you’re the enemy (the asshole), for telling them that paper plates cannot be flushed down the toilet.
It’s being verbally and sometimes, physically attacked, for no reason, other than it’s just how the disease, manifests, itself. It’s constantly reminding yourself that it’s just the disease making them act the way they do and that the “true” them, is lost somewhere, in the shadows. It’s taking every bit of strength, courage, patience, and love you have to restrain yourself from saying or doing something you’ll feel horrible about later.
It’s being followed (like 4 inches behind you) around all day, everywhere you go, even to the bathroom, because you can’t be out of their sight for more than a minute. It’s being so frustrated and angry, that you have to lock yourself in the bathroom, even for five minutes, just to take a breather, and refocus your energy. It’s being a full-time chef, short-order cook, server, housekeeper, nurse, translator, and punching-bag, all at the same time, except you’re not getting paid for it.
It’s getting out of the shower and opening the bathroom door to find many different piles of cat-food, on the floor, in a row leading out into the other rooms. I’m not sure who’ gets confused more, me or the cats? It’s being out at a grocery store or other place, and having a person call out her name and come over and give her a big hug. I can see the tension in her body, and the fear in her eyes, as she quickly realizes that she has absolutely no idea what this persons name is or where she knows them from. It is then up to me to somehow carefully, navigate, the conversation away from anything that would require her to pull a memory from her “locked, memory, bank.” Let me tell you, it isn’t as easy as it might sound.
The very, last, thing any “Alzheimer’s caregiver,” ever wants to do, is to make them feel uncomfortable, or embarrassed, so how do you inform an old, friend, or colleague, who doesn’t know that she suffers from “Alzheimer’s disease,” that she has this horrible disease, and can’t remember a thing? To look at her, she physically appears the same, but once a conversation is started, well, then it becomes a different ballgame. Needless to say, we don’t go out as often as we used to. Plus, I can’t take my eye’s off of her for a minute, because I fear she’ll wander off and get lost. I can’t send her to the restroom by herself as she would panic and freak out once she’s in there and can’t remember why she’s there.
It’s watching her pet the cat’s saying; “oh, you are such a sweet little doggy,” Then having to remind her that our little doggy passed away a few months ago and that she is petting one of our cats. The look of sadness that comes over her is gut-wrenching to watch.
It’s tears welling up in your eye’s and getting a lump in your throat, when she’s having an extremely, trying, frustrating, episode, and watching your seven-year-old granddaughter (who knows exactly what’s going on, but still manages to have the empathy and compassion of a mature adult), tenderly, and with so much “love,” take her by the hand as she guides her into the living-room, while saying; “C’mon Nana, why don’t you sit down on the couch and let me read you a story?” Then she proceeds to successfully, read, a book to her, that is well, beyond the level of a second grader, and genuinely, calms, Nana down with “Love and patience.”
It’s seeing the sadness, fear, and concern, in your daughter’s eye’s, as they react to; their hero, their best friend, their rock, their mother, slip away to a place, where even they cannot rescue her. Sadly, two of my daughter’s know that by the time they have children ( if they decide to), their mother won’t ever get the chance to know them or remember them. “Alzheimer’s,” doesn’t affect just one person. In addition to the “victim” and the “caregiver,” it’s evil tentacles reach out and pierce the hearts of many others. “Alzheimer’s,” does not discriminate, it is an equal opportunity, pure, evil, entity, that destroys lives. It has mine and hers.
It’s telling her “I love you,” and giving her a kiss goodnight . . . every night, because tomorrow isn’t promised, and I never know what it will bring. It’s wishing for a miracle, but knowing that it’s not going to happen. It’s constantly thinking; “No, this is not the way our lives are supposed to be, this is not what either of us planned or asked for!” It’s being there for her every second, of every minute, of every hour, of every day. It’s making breakfast, lunch, dinner, giving medication, doing laundry, literally being (for lack of a better phrase), a domestic slave, and never getting a break. It’s wishing you had the resources to just have a couple of days off for yourself, to relax, to regroup, refocus, recharge, and come back with your sanity. It doesn’t make the “caregiver,” a bad person, it makes them “human!”
My hope, is that the next time you hear the word, “Alzheimer’s caregiver,” your thoughts will bring you back to this post, and help you to both remind, and remember, the struggles they go through every second of every day. It is so much more than just preparing them three meals a day, giving them their medication, sitting with them, and making them take a nap.
And no one should ever forget the pain, fear, and frustration, the “victims of Alzheimer’s,” must deal with as the disease progresses and their memory fades away into darkness. The “caregiver,” becomes their eyes, their ears, their voice, their advocate, their everything. It isn’t about them seeking or wanting, pity, but more about how you, as a friend, as a loved one, can show them; compassion, empathy, kindness, and love.
Please don’t confuse “stupidity,” with “Alzheimer’s.” People with “Alzheimer’s disease,” are not stupid, they most, certainly, know, that because of their condition, there are family and friends, who will try to avoid them like the plague, and this hurts them deeply. Don’t use the excuse; “Oh they don’t care, they won’t remember anyway,” because guess what . . . they do. Instead of writing them out of your lives, maybe try offering a hand to both the “caregiver and victim.” You have no idea the joy you would bring to both of them. Here are some suggestions;
- Offer to come and sit with the person with “Alzheimer’s,” for a few hours, so the “caregiver,” can go out and run errands, without having to worry about watching them.
- If you are a family member, for example; brother, sister, son, daughter, volunteer to either stay with the loved one with “Alzheimer’s,” for a couple of days, or bring them to your house, for a couple of days, to give the “caregiver,” a much, needed, well-deserved, appreciated, respite, from the stress, and chaos, that occupies, every day of their lives. I’m sure that “forever,” could spare a few days.
- Bring over a hot meal so that the “caregiver,” can actually sit and enjoy a meal. You’d be surprised at how much a thoughtful, gesture, like that, will make a “caregivers,” day. They have enough to worry about, on top of having to cook and clean.
- Volunteer to got to the grocery store for them. Have you ever had to grocery shop with a person who has “Alzheimer’s?” Let me tell you, it’s an experience you won’t soon forget.
- Just let them know that you are there for them. Let them vent, give them a shoulder to cry on.
Live your life with love, compassion, and kindness . . . It’s the “human,” thing to do. Never forget to tell someone that you love and appreciate them, you may never get that chance again. Most importantly, reach out to a “caregiver,” whether it be for someone dealing with “Alzheimer’s,” someone with a disability or sickness, or an elderly, person, and tell them they’re doing a great job.
Peace to you my brothers and sisters,