Yesterday, my dad would barely open his eyes. He ate a little, as long as it was soft (pudding, applesauce, mashed potatoes). He drank quite a bit. His blood sugar stayed very low, so my mother and I gave him sugared soda to keep it up. He was clammy for most of the day and his body temperature felt cold to the touch. He had many hand tremors that would sometimes spread to his face. His hands stayed busy for a majority of the day: rubbing his face, scratching his head, touching his lips, feeling the blanket. Vocally, he wasn’t very responsive; he could muster out “yeah” or “no” most of the time when asked a question. My mom and I got a smile and a laugh out of him once when we were telling him how handsome he is. During the evening, he kept reaching his hand out like he saw someone standing at the foot of his bed; my mom and I asked him several times, “Who do you see? Who are you reaching for?” but he could never respond. All day, he seemed peaceful, but very busy at the same time. I believe there’s a lot going on in his mind that I can’t comprehend. From what I’ve read online and from talking to the hospice nurse, this is a time of transition for him; his soul is between his physical body and the afterlife. Maybe he’s seeing passed loved ones waiting for him on the other side, or maybe angels or messengers are talking to him about what’s happening. All that I know is, what he has in the physical world is no longer of much importance to him. As much as I want him to open his eyes and tell me that he loves me too, I’m afraid he will never be able to do that again.
Today, my dad hasn’t opened his eyes at all, nor will he eat or drink. He has woken a few times earlier in the day, but only for a brief moment. He is less responsive than yesterday. His nurse stopped by this morning to take a look at him; all of his vitals are good. She told us that if he doesn’t want to eat or drink, don’t force it. If he needs something, he will let us know. Usually when I go over to his bed to hug and kiss him, he will wake up and I can tell that he knows I’m there; a few moments previous to writing this, my presence no longer woke him up.
Dementia is a roller coaster of a disease; one day, someone can be alert and understand what’s going on around them, but that can quickly change. Every day, even every hour, can be different from the last. In my dad’s case, I don’t think he will have anymore good days. From the signs he is showing, his body is trying to shut down. This process is different for every person; sometimes it takes days, and sometimes it takes weeks. It’s important for my mother and I to stay with him so he knows he isn’t alone. It’s important for us to tell him we love him, even though he can’t respond. It’s important for me to thank him for being a wonderful father and letting him know how important he is to me. It’s important to me that he leaves this earth feeling as admired as a king.
If you find yourself taking care of someone who is ill and/or dying, these tips may help you:
If pills become too hard to swallow, don’t buy a plastic pill crusher because they are more trouble than they are worth. Order a mortar and pestle (I got mine off of Amazon for cheap with free shipping) and your pills will be completely in powder form.
If blood sugar is low and needs to be quickly brought up without food, a sugared cola with a couple tablespoons of simple syrup works wonderfully. Glucose tablets can also be crushed up and put in a sweet drink.
If the person who is sick will not open their mouth to eat or drink, try gently touching the straw or spoon to their lip so they can sense that something is there.
While taking care of someone who is ill, to avoid getting them anxious or upset, talk them through everything that you are doing; while changing their diaper, tell them every step as you are doing it. When feeding, always say “here’s a bite/drink” before putting the spoon or straw up to their mouth. Even if they can’t comprehend what you’re saying, a familiar voice may be comforting.
Never argue or debate. Never.
Try to avoid showing any negative emotions in your voice if at all possible, whether it be anger or sadness. Talk slowly and gently.
As blood flow slows down, a person is more likely to get cold; make sure you keep enough blankets around.
If something isn’t absolutely necessary, don’t do it. It puts more work on yourself and adds to their level of discomfort.
Don’t hesitate to call your hospice nurse, home health nurse, primary care doctor, on-call nurse line, etc. If you are every scared or have a question, that is what those people are there for. This is a scary time, but being informed can make it a lot less scary.