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.