Alzheimer’s is hard. No scratch that. It’s harder than hard. It’s devastating and difficult to manage and it becomes the boss of your life. Several friends shared a post on Facebook with 33 things people wish you knew about Alzheimer’s. And that list was good. It covered lots of things – your loved one forgetting who you are…Alzheimer’s being more than a memory disease- that it affects mood, logic, decision making…and mourning the loss of your loved one while they are still living.
But there are a few more things I wish people understood about Alzheimer’s.
You are caught in a love/hate relationship. You love your family member. So much. You want the best care and treatment for them. But sometimes they do hurtful things (that they don’t realize), and you feel so much anger, fruatration, and even hate toward them. Those feelings wear off and you come back around to love, but it’s so hard to be loving when they say something hurtful or act out of character.
Alzheimer’s never “gets better.” While I appreciate people asking about Dad (and Gram while she was still living), it’s so hard because it’s always going to be sad news. While we do have good days here and there, overall, it’s a slow decline. Asking me “How’s your dad?” will always be sad, bad news.
Alzheimer’s has no cure. While some medicines can slow the decline, nothing makes the symptoms better or go away. Some people ask why we don’t have him on medication. We do! But the medicine only stops it from progressing to a point. It isn’t a cure and won’t do away with any of the underlying issues.
While there is a tiny bit of support out there, you’re mostly swimming alone. In our area, while there is an Alzheimer’s Association, they have been basically useless. The only support they’ve offered is hosting support groups for caregivers- which aren’t an option because they don’t have a solution for the PERSON WITH ALZHEIMER’S DURING THAT TIME. What? Who expects you to come talk about the challenges of caring for your person if you don’t have arrangements for your person? So we’re swimming with no tangible support and no referrals to local services. We are navigating this on our own.
People are (mostly) kind and understanding. Dad had an issue in a bank, and the bank tellers were super understanding. Or people at church or the gym who he talks to understand and are kind even though he says the same things every time. He may not always act “normal” but people have been mostly gracious.
Routine is best, so asking for things out of the ordinary are hard. Yes, he needs to sit in the same spot at church. And go to the same restaurant after church. And sit with the same people on Wednesday nights. And go to the same movie theater every time. And sit in the same spot at the gym while mom does Zumba. He may not “remember” those things, but routine will feel familiar and not be as scary. When things feel scary, we have a problem because he won’t cooperate.
We laugh so we don’t cry. We try and laugh at things because it’s too painful otherwise. We aren’t being insensitive, we are coping.
We never know what to do. There is no guidebook, no “normal” case of Alzheimer’s. We make it up as we go, which is so difficult. We don’t know our next move or coping strategy. We try to make good decisions.
Everything can change in an instant. Dad can be fine one minute, and breaking down the next. We might have to leave early or change plans around him. We might be in the car and have to change our plans.
You don’t get to pick and choose what they remember. Dad might remember and harp on ONE thing for days, and yet forget who mom is. He forgets what you just told him, but remembers that the UPS man dropped off a package yesterday. I wish we could choose.
It’s heartbreaking every time he doesn’t know who I am. Every single time. It hurts when life adjustments have to be made. It never gets easier.
I live in fear about getting this terrible disease someday. I pray for God to ease that fear (and protect my brain from it!), but every time I forget a name, I panic.
I would give anything to make Alzheimer’s go away.