A Thief Named Alzheimer's
Care giving takes it's toll on family. Alzheimer's robs you of your loved one. How you cope determines your sanity, but it is always a fine line. Anxiety & depression are potential for all involved. Missing a person who is still physically present is a difficult position to be in.
It's a weird feeling. To love someone that isn't quite sure who you are. It grips you, right in the heart, the blank stare. The one where they look right thru you. And you wonder, are they trying to remember? Will I get lucky today?
Sometimes, on a good day, you can tell by looking in their eyes, that they see something in you that clicks, reminds them of some other time. And on a great day, they remember your name. That's life with Alzheimer's.
The cruel twist of fate that grabs your gut & robs your soul, little by little, every second, every day. It's saying hi to a stranger, & goodbye to a person that you love with every ounce of your being, who could care less. It takes you, piece by piece.
In the beginning you say to yourself, I can do this, but then you forget yourself, and you crumble. You cry, and pray, and miss someone, someone who is still physically there. You hold onto a person, but that person is gone. You pray a silent prayer every time, this day they will know me, know us, know our love.
After a while, you don't even care that they don't remember your name, you just want that feeling, the one where it seems like they recognize you, and it makes them comfortable. Unfortunately, not all of our prayers are answered.
You feel the cut, no matter how much you prepare yourself. It's the first glance that feels like a knife, then the blank stare that feels like someone twisting the knife in your soul. And then you bleed...as you hold them, and feed them, and clean them...you bleed.
It's war, and you are the only soldier. The battleground is in your heart, and the weapons are empty stares. It's a war you don't win. No one comes to your rescue. No one knows your pain. No one that hasn't already fought their own war. It's not a disease that others easily relate too, it's not cancer, or a heart attack. Those diseases cause everyone to rally. Everybody's your friend, your support.
It's different with Alzheimer's. Your at home, because your loved one can't go out. It causes confusion, anxiety, & paranoia. They forget to tell you they have to go to the bathroom, they forget how to stand, they forget how to eat, they forget you. They get scared, agitated, and you find yourself holding your breath a lot. Waiting and forgetting to breathe, fighting off your own anxiety, and asking yourself 'what could possibly be next?'
So you're at home, alone. Isolation, desperation, and loss take control of you. You don't just loose your loved one, you also loose part of yourself. But it goes so much deeper than that, because it saddens you that they forgot themselves. And they were amazing! Alzheimer's disease is a physical loss to an invisible disease. It's a killer. It's a goodbye every time you look in their eyes.Last edit by Joe V on Jun 16, '18
Joined: Jan '14; Posts: 20; Likes: 99
RN; from FL , US
Specialty: 25 year(s) of experienceJul 6, '14Your article is so true. I've worked with many Alzh pts too. The disease is such a thief! And while all cases will run the gamut of different S&S, I found the toughest to deal with were the early onset Alzh (pts in their 40's) and then pts with the aggressive tendencies.
But THE ONE characteristic that was always there in every pt eventually was THE LOOK or rather that NON-LOOK. There's NO person behind the eyes. Memories, cognition, skills, etc all gone! As you've said - everything forgotten!
Sometimes if you take their face into your hands and look deep into their eyes, it's BLANK. GONE. EMPTY. NOTHING. Like looking into the eyes of a toy doll baby. It gives me the chills. And then I remember I can go home. But the burden that others carry never stops. The endless sea of emotions that wrack them.
OP, you said it all so eloquently. Alzheimers is truly a thief!Jul 7, '14Great descriptive essay! I have watched my Grandma go through this and it pains me to know she has no clue who I am. You have written the tail of many here and did an excellent job of expressing the feelings which come with caring for those with Alzheimer's.Jul 7, '14My mother has Alzheimer's. I tried to take care of her in her home, but couldn't manage it. Someone had to watch her constantly, day and night. I couldn't do it. I'm so grateful for the wonderful people in LTC who take good care of her.
My mother is in the late stages now, and there's nobody left inside the shell. There's no person behind the eyes. That's a very good description.
Thank you for the article.Jul 7, '14This is a personal experience for me, as it is about my mother. Thank you for getting it.Jul 7, '14Such a good description of this awful disease...and it heart wrenching to go thru it with a loved one. Thoughts and prayers with you!Jul 9, '14Thank you for the wonderful, well written article. I too have personal experience with the disease. My mom has vascular dementia. The mom I grew up with is gone. Replaced by someone that remembers 50 yrs ago, but not 10 minutes ago.
In the past when I cared for someone with Alzheimer's, it was easy to say, No I don't know where your mom is. It is not at all easy to tell my mom that I don't know where her mom is or where my dad (he is dead) is. Since I don't perform actual hands on patient care at this point in my career, it has become easier for me to accept my mom and her illness.
When my mom dies, we are going to have a celebration of her life. The mom that we knew is gone and not coming back.