This post was sparked by two things.

One was an article I read about everything that is wrong with caregiving. I am guessing it was written by a caregiver, because there are certain things that only caregivers know. The article was in the Huffington Post. This is the link, if you are interested. https://m.huffpost.com/us/entry/us_57e2e78ce4b0e80b1b9fff6e

The other thing that sparked this post was a conversation on my Facebook page. Some friends and I were discussing the reality of caregiving versus the “advertised” reality. We agreed unanimously that the two are vastly different.

In the “advertised” reality, all I have to do is dial a phone number (perhaps the Alzheimer’s hotline or the local AAOA) and I will get all the help I need. The idea promoted is that finding help is easy. I am not saying these resources aren’t helpful because they are for many people. But they aren’t helpful when it comes to caregiving.

The reality is, when it comes to day to day caregiving there is no real help. While there are paid people that will help with certain aspects of it, at some point they leave. Then it’s just Jack and me. My shift never ends.

When I am feeding Jack dinner and he sneezes a mouthful into my face, there is no one to call. When I am wiping his bottom after he has diarrhea and he poops on me while I’m cleaning him, there is no one there to hold my nose. If he pees on everything during the night, I am the one who cleans it up. If he wants to find home and the only way to calm him is taking him out for a walk, I will walk him until he gets tired. I have no choice. There is no one else to do it.

The reality is, while people may offer to help (and sometimes actually do help), no one wants my job. If Jack is having a bad day, his caregivers are glad to go home and leave him to me. I am not knocking them when I say this. Dementia is trying on the best of days.

And Jack, since he has dementia, has no clue how much I do for him. He lets me dress, change, clean, feed and toilet him, but he fights me at every turn. Not because he wants to, but because he can’t help himself. The dementia has stolen his self awareness. He has no idea of how he actually is.

As hard as this reality is, however, there is one that is even harder to come to grips with. That is the knowledge that no matter what I do, Jack is going to die. It doesn’t matter how many things I try, how much I adapt to his needs, how many ways I use to reach him. In the end, none of it will make the slightest difference. I will keep expending more effort for less return until the day he finally goes home.

Getting out of bed every day with that reality staring me in the face makes things even harder. I have days where it feels pointless to try. But I make sure Jack gets the best care possible because I love him. He is worth it, no matter what anyone might think.

And I keep caring for and loving Jack, even though I know it won’t be enough. He will continue to fade out in front of me and nothing I do will stop it. But knowing that, and facing that truth daily, won’t stop me. When he goes I will have no regrets.