Caregiving is a big learning experience. We get better.
Things to know
You didn't sign up to be a caregiver. This job was thrown at you.
You have to navigate new, hard things while losing your Loved One and processing your own emotions.
How should you do it?
You are gonna grow. We've talked to a lot of you, and you all find new ways to meet the challenge.
If you mess up today, we get it. Scream, cry, go for a walk. You can learn. Tomorrow can be better.
And when you need them, resources and support are here for you.
We all could have done things better. Just because you can learn doesn't mean you should have known.
Some problems are really hard. Get professional help if you need it. Your Loved One may experience different facts; if you accept their facts, you may make things easier.
Own your role as a caregiver. Whether your the primary caregiver of playing a support role, you're gonna learn things. Be proud of it.
A FEW TIPS
How they did it
Age: Early 60s
Loved One: Wife, Mid-50s
Diagnosis: Early Onset
Years Since Diagnosis: 5
I wonder if it’s possible for anyone to actually feel like they are good at caregiving. The failures just stand out too much.
There is no blueprint for how the progression will occur. I’ve heard stories about how Alzheimer’s affects memory, leads to wandering. My wife couldn't talk. Some of the memory issues never came into play. I’m not aware of anyone who fits neatly into each stage and who moves predictably from one stage to the next. Early on she would have been severe on communication but otherwise mild.
All Alzheimers is awful. All Alzheimer’s is lonely. Early Onset has unique struggles. You read stories and they say “my wife was 74 when she started showing signs.” That’s not helpful when you are working and have young kids at home.
Age: Early 40s
Loved One: Mom, Mid-70s
Years Since Diagnosis: 2 months
I was talking to a social worker and she said “there is a point where you lie. Where you do what you need to do.” She gave me the go ahead. She gave me permission. I felt like I needed somebody professional to give me permission to do what I knew was right. That was one of the most invaluable things. I'm smart enough to know what I like. When I started questioning her investment people I went to different investment people and had them look at her portfolio. When I didn't understand what her lawyer was saying, I hired a different lawyer. I went out of my way to find a diversity of opinions. And then cross reference them. For me, it's research, research, research.
Loved One: Mom, Mid-60s
Diagnosis: Early Onset
Years Since Diagnosis: 13
My mom asked me if my dad was single. She said “who is that? I’d like to meet him.” And I said “ you wanna know more about him?” So I walked across the room and chatted with my dad and introduced them. Those are my better memories. Going along with what she was saying.
Sometimes she’d curse me out. I’d remove myself. It took time to learn that. Five minutes later she’d be fine. She’d forgotten.
I learned patience. I used to snap at her. I feel guilty. I would say to her “what’s wrong with you? You are supposed to be my mom? Why aren't you being my mom?” I wish i could have had more patience.
I think about it now from her point of view . She must have been scared. She was young and sick. She knew she would miss our lives.