“What we had as a couple is gone. Now it’s all about coping with him and the way he acts. I still love him, but I miss normal.”
I hear variations of this so often.
“My mother is gone.”
“I don’t recognize my brother.”
“This isn’t the father I knew.”
“I wish…I wish…I wish…”
There’s a time for grieving and missing what was, but it needs to occur away from your loved one. Write it out, find a professional to talk to, or a friend who can understand. It is a grieving process, and you need time to work through your feelings.
When you are with your loved one, you need to find normal.
What do I mean by this? You have to take a long look at who they are today. Has dementia eroded their memories? Perhaps anxiety has stolen their joy. Is their pain being controlled? Who are they today? What is normal?
Start by listing the things you know. Here are a few possibilities:
- she loves music, but it has to be classical, and not too loud.
- he likes to watch sports on TV, and his favourite team is _________.
- he loves to be outside in good weather.
- she loves birds and is knowledgeable about them.
- He will always say “yes” to ice cream and “no” to a shower.
- She gets anxious as the day progresses.
- He likes to colour. It relaxes him.
- She wants to sit with people she can talk to in the dining room.
- He doesn’t say much.
The important thing here is that you list what is true today. So often, I have family tell me a significant fact about their family member, and I will pass it on to staff in the pre-transfer notes. When the person arrives a few days later, we discover that the important information we were given is no longer true.
Normal is what’s true today. It may be true tomorrow, or it may not. Your loved one is changing, and the most successful care partners study them every day and look for normal.
It’s imperative that care partners be able to release what is no longer normal for your loved one. Even if watching sports was something special you did together, if Dad stares blankly at the screen without comprehension or enjoyment, normal has changed. Perhaps the two of you could share important moments during a walk outside. If that doesn’t work, maybe time spent with a visiting dog will bring the spark to his eyes. Finding normal is finding that activity that will bring joy.
The difficult issue with normal is that you are never sure how long it will last. A love of ice cream might be life-long, but the love of colouring might be gone in a few months. It might be gone tomorrow. Just when you settled into a pattern of doing something together, you have to start searching for a new normal.
It can be exasperating. But the care partner who doesn’t cling to today’s normal, and is willing to be creative and flexible, is the care partner who has delightful times of fulfilment and joy with their loved one.
Find normal. It’s worth it.
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