Update 11/28/15-11/29/15

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.

 

 

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Caring for a loved one with Dementia/Alzheimer’s

I’m going to keep an online journal of my care-giving experience with my father in hopes of helping someone else going through the same experience. I am 24 years old and an only child. My mother and father have been together for over 30 years. My father is now 78 and my mother is 53. I have recently moved back in with them to help my mother with the task of caring for my deteriorating father.

My dad has chronic worsening dementia; he is also handicapped. He spends his days in a hospital bed in the living room. He enjoys watching TV, specifically Blue Bloods, Law & Order: SVU, NCIS, Criminal Minds, Walker Texas Ranger, and In the Heat of the Night. Most days, he sleeps the majority of the time; on his good days, he is awake and bright-eyed and enjoys laughing.

It has been less than a year since my dad was diagnosed with dementia; I’m still trying to understand why and how the disease has progressed so quickly in him. Two years ago, he was the same dad that I’ve always known. Somewhere between then and now, everything has changed. It started with several trips to the ER, numerous trips to his family doctor, and researching things at home- my mom and I knew something was happening, but we had no idea it was dementia. Not long after, he was too much to handle; he became crazed, confused, and violent; he was diagnosed with dementia and was put in the geriatric psych unit at a local hospital. From there, doctors and nurses worked with him during his waking hours, medications got regulated, and physical and mental therapy got started. After two weeks, he was sent to a nursing home for rehabilitation. My mom and I wanted to do everything possible to get him to be able to come back home. A couple months later, we were bringing him home. During his stay in the nursing home, the house was remodeled to be handicap accessible and I moved back in.

My dad has been home for about 3 months. He started off being able to walk (using his walker, of course), go to the bathroom, go to the kitchen table to eat, etc. As of today, he is bed ridden. I change his diapers, bathe him, feed him, and tend to his every need. This disease is the most quickly deteriorating illness that I have ever seen. When I wake up every morning, I’m unsure of how he will be. Sometimes, for days at a time, he can barely keep his eyes open; he will barely eat or drink. Other days, he is awake and happy and has the appetite of a hungry school boy. Communication is a constant issue, but again, some days are better than others.

Being his care-giver has taught me a lot. If you or anyone else you know is in a similar situation, remember that the most important thing is patience. Never yell or raise your voice. Never get in a hurry. Never ask “why.” Never talk quickly. Never ask open-ended or complicated questions. Never argue. Never debate. Do one thing at a time, and if possible, allow your loved one to know what you’re doing. While giving a bath, let him or her know exactly what you’re doing. Make a joke or smile at them so they that what is happening isn’t so bad. Their mood and reaction is based a lot on the emotion that the care-giver is emitting. If the care-giver is upset or tense, that is going to be sensed and transferred. Often, depending on the person being cared for, things can get frustrating; just walk away and take a deep breath. The person with dementia doesn’t want this anymore than anyone else does, so be patient and be kind, as you would with a child.

I plan to update this several times a week. If you or anyone you know is going through this, please, share this with them. It’s nice to know that you aren’t alone and that there are ways to handle going through this. I’ll also gladly talk with anyone that needs help or a shoulder to lean on.

I’ll be updating soon. Thank you.