This is not a post about how to take care of somebody with dementia. It’s not about what you can do if you are taking care of a loved one. It’s not even about the experience. This is but a raw diary of emotions, watching from the sidelines, a mute spectator. An outpouring of the things I feel and wish I could share with somebody but I’m afraid to.
Trigger warning: Demetia, memory loss
Dementia is a disease that leads to a slow loss of memory and the ability to function normally. It’s hard to catch at first, hard to tell apart from usual forgetfulness. But at some point, it hits you hard. When you struggle to convince your loved one of something that you know as sure as day, but they refuse to accept. That was when it dawned on me that something was wrong. It took a while to get a diagnosis. Getting them to a doctor was an ordeal. Even now, there is no acceptance that there is something wrong.
As things went on, there were several realizations that were shattering. We all have our raw emotions, thoughts, prejudices all inside our heads. But those are filtered out and thought through before we speak, right? It is those very filters that also get removed when dementia strikes. You hear and see things that you would never have before. Irrespective of surroundings or the people around you. The worst qualities in the person get exacerbated. A stunning realization hits you when you hear what really goes on in their minds. That was probably always there and just was never expressed? Or maybe it was something else that was also picked up sub consciously due to the disease? You never really know. But a lot of those things can disgust and shame you. There is no better way to put it. You feel like the past has been a lie, wonder how you had never seen this side of them before. The paradox being that you still need to care for them, while slowly losing some of the love and respect. This makes the days harder as you go along.
Dementia could manifest with a lot of impatience and aggression from what I have seen. They become very demanding and irrational, be it for information, food or anything else they need. This takes an enormous toll on the care givers. Finding time for yourself, to switch off and do what you feel like becomes almost impossible. Even small delays or oversight can lead to a lot of aggression from them. Constantly nudging, pushing and bickering you, over and over again. They would not remember how many times they have said the same thing. They just keep going on and on. Your frustration is met with puzzlement, confusion and sometimes plain anger. There is no easy solution here. You may need to build up your patience and not show what you’re feeling. I had become really adept at hiding what I really feel and stoically put up a straight face.
The biggest source of frustration when dealing with a disease like this, is that there is no end in sight. Recovery and getting better are never options. The best you can hope for is that things don’t get worse. Even that means your current scenario would go on. You may desperately wish for the life before, when things had some semblance of normal. But that is but a memory, something that lies in your head, something you can dream of and yearn for but never get again. You move on, with your head down, hoping for the best, hopefully today might be a good day?
Through my experiences, I have realized something. During times like these, it is really important that you take care of yourself physically and mentally. Caring for, or just living with, someone who has dementia can be mentally very exhausting. You must be aware of what that is doing to your own health. Then, see what you can do to counter that. Make sure you have all your meals and check on your health regularly. The toll on your mental health can be even more severe. But it may not be immediately evident. You need to be really conscious and make an effort to take care of yourself and heal. If you have really disturbing thoughts and feelings, it is completely ok and understandable. Give yourself permission to feel that way, without guilt. Acknowledge what you’re feeling and process the emotions. Talk to people you trust, take some time to have someone else take your place and step out. Do something that give you joy and happiness. You need that, you deserve that!
We are all fighting battles, this particular one, watching a loved one struggle with dementia is devastating and difficult. Take care of yourselves as you power through it!