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I am currently facing a common dilemma that many caregivers face at some point — I can’t wait for my dad to die.
To be clear, before everyone jumps on me, I don’t want him to die…I will be crushed when he dies.
Let me explain, my dad suffers from Alzheimer’s. Advanced stage Alzheimer. The kind of Alzheimer’s where you have lost all capacity of your facilities. You wear a diaper because you can’t control your bowel movements. You lost the capacity to speak long ago. All communication — hand gestures and otherwise — gone. No ability to walk. You don’t even have the capacity to move your body around the bed, nor do you seem to have the inclination either. And now…now one of the final indignities…your brain has forgotten how to swallow.
So for that 1% of the day that you’re awake — that 1% of the day when you don’t recognize your wife of 50+ years or your 36 year old daughter or 29 year old son — you can’t even eat or drink because then you are not alert enough to assist in the “swallowing process” and you aspirate. Your food/water goes into your lungs and makes you choke. Which invites infections and pneumonia. Then if you don’t get flipped enough — you develop pressure wounds. Since you are bed bound and your family is relying on medical treatment that comes to the house, the medical treatment is sub-par. No matter how hard your family works at it, these wounds are going to keep getting worse without a hospital visit. Wounds that are open down to the bone. So now, your family, that already washes you, changes your diaper, brushes your teeth, picks you up and holds you so the blood circulates to your lower extremities, those who cook your food, then puree it just to add thickener in it so to try to avoid your choking on it.
For a man who was uber successful — someone who had advanced degrees, who could get a room to stand entirely based on his words, who could convince men to put their bodies on the line for him — his life has boiled down to a flip every two hours and a syringe providing liquid a few times a day.
This man, who was been everything to me for almost my whole life. The man who I couldn’t stop crying on during the father-daughter dance at my wedding…and the man who couldn’t stop crying either, has become an albatross. My brother has to leave where he is in the evening to come home and change my dad so he can go to sleep. My mother won’t travel or go anywhere else because she is worried that something will happen and she won’t be there for it.
At this point, he has lost so much weight and muscle mass, that he is literally a shell of his former self. He is not eating now, and he is melting away.
This is not the way to live — not for my father and not for our family. This long-drawn out battle that has long ago taken out the only combatant that could fight it, feels like a never-ending nightmare. Each time that you think you can handle the situation as it is…that things aren’t so bad…another complication.
I don’t want anyone to misunderstand, I don’t want my dad to die. I will be crushed when he ceases to exist in this world. But I am just not sure how much more any of us can take.