I’m not the man I was.
Not that long ago (or so it seems to me) I looked after my wife and family. I made decisions. I had a job and made money. I bought things. I went places. I had fun. I had purpose and meaning.
Now, life seems muddled. I can’t find things, and some days, I can’t remember which of my clothes to put on first. I look for something that isn’t there, so I keep looking. I am suspicious, but I’m not sure of what. I wander, trying to find my family. I can’t even find myself.
Who am I? Am I still a father, a husband, a brother? There are days when I feel like I’ve lost myself.
Your role is changing, and I know that confuses you sometimes. Sometimes I need you to just be my wife, but often you are the caregiver. But do you understand how I feel? I don’t know how you could, because most of the time, I don’t. I don’t know who I am any more. In this terrible journey of my disease, I have lost myself. Sometimes that makes me angry, and often i am afraid, but mostly I just wander in a fog.
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Have you ever wondered how changing roles affects your loved one? Perhaps they don’t have dementia, as the man I described, but their physical frailties are changing what they can do and who they know themselves to be. It can change a person’s perception of themselves to be unable to be independent in the bathroom, or with walking. Depression is often close behind.
How can the caregiver help? Understanding that every situation is different, here are some suggestions.
1. Acknowledge the situation if they express it. “That must be so frustrating. I can see that makes you angry?” etc.
2. Look for ways to show that you still respect them. Ask for their opinion or give them opportunities to make decisions. Ask them questions about their past that will take them, through memory, to a happier time.
3. Look for ways to keep life “normal.” Talk about your day and tell funny stories, as you would have done before you were a caregiver.
4. Ask their advise about a situation that’s troubling you. “I’m just not sure–what do you think I should do?”
When your loved one struggles with being cared for, when all their life they have done the caring, give them the gift that reaches past the disease to the soul within.
Give them respect.