On Being There

When I wrote that poem last week about Alzheimer’s disease, I was in the middle of a pretty bad spot in dealing with Dad’s disease. It’s hard to watch him get worse every single day — with no end in sight to his decline. He will not get better. Not even before getting worse. He will continue to decline. Mom’s life will continue to get harder as she struggles to reconcile the man she fell in love with with the one who angrily greets her every day. For better or worse, indeed.

I was shocked, myself, when Dad’s anger turned to me (and some of my siblings). The last couple of times I visited, I can’t even count how many times I was called a liar. For what? I’m still not sure. Or asked what I was doing there. Dad’s eyes used to sparkle, a smile spreading across his face when I visited. Now, I’m lucky if he’ll talk to me. Dad’s birthday was last Friday, July 4. So, on Thursday, I took the day off work to go spend the day with him — and with my mom. It was a visit like so many these days — walking on eggshells, squeezing in laughs and smiles when we can. You know, “in the good moments.” As Dad slept in the afternoon, I did get some much-needed one-on-one time to visit with my mom. We used to do that a lot. Now? Notsomuch.

When I packed up and left for the day, I gave Dad a hug — as I always do. And I told him I loved him. So very much. His response? “Ha. I don’t believe that.” Well, at least he didn’t tell me he didn’t love me. Because that? I don’t think I could walk away from.

It is in moments like these — the desperate moments — when we all realize that this is life now. It’s not knowing what we’re going to find when we visit. It’s being nervous to visit — but knowing we must. Because there are so few visits left. And, no, Dad is not Dad. He is a shell of his former self. But, he also is Dad. The man who raised us. The man who loved us — who loves us (even if he can’t/won’t always say it out loud). The man who was always there. With hugs and smiles and laughter. Now it is our turn to always be there.

Hugs, smiles and laughter were always a constant with Dad.

Hugs, smiles and laughter were always a constant with Dad.

It is also in these moments where we are reminded how much of a difference a little bit of light can make in the darkness. How the smile from a friend can turn your day around — even if they don’t know the right thing to say. How a kind word or gesture can turn tears to smiles.

Recently, I participated in a “Send your 10” challenge as part of our fundraising for the Walk to End Alzheimer’s. I was hoping to get $10 donated over the course of the 10 days, adding $100 to the money I’d raised so far. Instead, I raised hundreds of dollars, causing me to up my goal from $250 to $500. And, you know what? To date, I’ve raised $545. These dollars mean so much to the Alzheimer’s Association. They mean money for research and spreading awareness. But, even more than that? They mean so much to me. In every donation, I felt the warmth of a friend. In every donation, I felt much-needed support. In every donation, I felt love.

In the midst of the sadness that does sometimes take over, I’m brought joy by the people who surround me. And, I just want to say thank you. You all make a difference in my life. You are all blessings to the world, and I wish I could hug every single one of you. Thank you for being there.

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3 Comments

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3 responses to “On Being There

  1. Wendy Warren

    I am told, many times a day, ” I don’t love you any more”. I do hope you never have to hear those words. Thank you for bringing awareness.

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  2. Schellee

    I totally understand…my grandfather had Alzheimer’s. He got to the point where he really didn’t know us nor did he really understand what was going on around him. Unfortunately, he became really mean and said really hateful things. I was a teenager when it was starting to get bad and I just didn’t really understand what was going on. No one explained anything to me or told me what exactly what he had. I feel bad looking back because I feel like I wasn’t as understanding as I should have been and definitely didn’t spend as much time as I should have with him. I can’t change the past, but I do encourage others in the same situation to just take advantage of that time regardless of whether or not your loved one recognizes you. That is time you will never get back. You are handling it so great.

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