Don’t Just Disappear

She exists in two worlds—the reality that we all know and the reality that her mind creates.

Some days she’ll look me straight in the eyes and tell me about how she’s exhausted from running here or there for a husband who has been gone for years.

Looking at Gram in her wheelchair—where I know she’s been all day, all week, all year—I can see the confusion-filled cloud of dementia that hangs over so many that live in the home.

But lately she’s slipped past the frustrated stage into one of simple contentment most days. Sometimes she’s with us and sometimes she’s lost in that world of her own, but the fear of those two worlds colliding seems to have lessened a bit.

I’ve written about the relationship between my mom, my grandma and me here dozens of times, but this past year it’s been really hard. While there are moments of tenderness and heart-breaking hilarity, continuing to visit and watch mental and physical deterioration—and being powerless to change any of it—isn’t easy to do.

It’s no longer the way that it was.

She doesn’t understand watching baseball anymore, so our biggest shared interest is gone. And at times I don’t want to clean up the room or stop in and find that she’s still sleeping, blinds closed and room dark in the middle of a sunny summer day.

But recently an aide commented to me, “It nice that you still come and visit so much. So many families just disappear.”

As hard as it is, I admit I know exactly how those people feel. Most times I just don’t want to go.

Maybe it’s fear. Maybe it’s knowing that she is safe and in capable hands without me doing the work. Maybe it’s the difficulty in seeing a person you love with your heart and not just your eyes fade into the gathering darkness.

It’s hard when she’s not the person that she used to be, and in a way she exists in two worlds for me—the reality that we all know and the reality my mind creates, the way I want to remember she was.

But if being on the outside is rough, being on the inside must be harder, even if her recognition of this has passed, too. We all have times that we feel alone or fear that somehow we’ll be forgotten simply because we’ve changed in a way that others find hard to accept.

But while it’s not always fun and it’s not always easy, it’s also not all about me.

So I go to make sure she’s comfortable, to selfishly lessen my guilt, to connect her two worlds when I can and make sure she knows that I’m there—wherever her “there” is on that day.

I go because this is our reality now.

I go because deep down she’s still the same Gram.

I go because love doesn’t just disappear, and because she hasn’t either, neither will I.

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29 responses to “Don’t Just Disappear

  1. oh…

    as I come up on the year of Dad’s death, I am thinking back to the final days. those days I’d rather not think of (except when I accidentally gave him a dropper full of straight bourbon on his birthday, and he suddenly perked up and looked straight at me – OOPS, Dad, I know you don’t drink it straight!).

    I cannot imagine those who “just disappear”. I couldn’t do that, I wanted to be there constantly, because there were still glimmers in there every now and then. Even when there were not, I know he knew I was there. I talked to him. and yeah, because while I had round the clock care for him, I was also there to run it. I could not give that up – it was my job to make sure he was comfortable.

    thinking of you. I am here for you. please let me be? like you were for me.

    XXO

    • Thanks, Kristina. To be honest, I’m totally fine with things. I love the years we’ve had and cherish every moment-good and bad. XO

  2. oh..wow,this is really deep.

  3. Ah, what a deep breath of writing. Thank you for this, it took me back to my grandmother’s final years in a home and slowly watching her disappear into her past. You’re in my thoughts today.

  4. Your story about visiting your Gram is touching and something many people can identify with. Just your being there must brighten her day so much even if she can’t show it.

  5. Beautiful, Abby. This brought tears to my eyes. You’re so right that it’s hard to accept when our reality has changed and when things are no longer as they once were. It can feel comfortable to pretend for a little bit that normal hasn’t gone anywhere. But I’m glad for your grandma’s sake that you still go to comfort her and show her that you care.

  6. I loved reading this!! I can relate to this. My grandmother had dementia and it was so hard. I knew that she would have been by my side threw all the hard times so, I was always by hers.

  7. What a lovely post. Well said! I work with people at the end of their lives, many of them coping with dementia. You said, “But if being on the outside is rough, being on the inside must be harder.” I suspect not. I think it may be much harder on loved ones, those trapped on the outside looking in, powerless to do anything about it.

    There are some blessings to be found in dementia, some mercy there. Often that “other world” they slip into is a rather pleasant one. I had one woman who believed it was her birthday everyday, and she was madly in love with Gregory Peck. We had to go find the smallest cup cakes, because every hour or so, she would announce it was time for cake, and we’d have to bring her one with a candle in it. When she wasn’t having a birthday party she was getting all fixed up for this hot date with a movie star. That woman taught me an awful lot about the importance of our attitudes and what we choose to focus on and I realized that those visits were more beneficial for me, than for her. Some days I even got a bit envious, my life was full of stress and work, while this woman seemed to just be living one perpetual party after another 🙂

    • I agree on some accounts, but I meant that it’s even harder on her when she’s confused and no amount of explanation can make her understand that (grandpa is gone, she’s not at her house, etc.) But I agree that now she’s mostly in that state where she has a bunch of young boyfriends, goes dancing every night and has not a care in the world. 😉

  8. hollowtreeventures

    My mom and I were *just* talking about this yesterday. I used to work in a nursing home, and like you, I understand why people just can’t bring themselves to visit anymore, but I also know it makes a big difference – for everyone involved – when family does stay involved. I just hope, if I ever find myself in the same situation, I have your same strength and devotion.

  9. I go to see my aunt, who is in similar shape, to bring a tiny bit of outside that she used to so enjoy. It’s hard to see how different she is now, but it’s got to be so much harder staying inside one building all day every day. We just hope it’s not our future, too.

  10. Thank you for this beautiful, heartfelt,, touching story. I hope if I ever am in the same position as your Gram, that my Grandchildren will be as wonderful as you are. My prayers are with you and your family.

  11. Beautiful post, Abby. I went through this with my own mother last year. I believe your Grandma knows you’re there, even if she can’t vocalize it. You’ll never regret spending time with her, no matter how hard it gets – on the contrary, if you “disappeared” you might regret that later.

    • Oh, she knows I’m there most of the time and trust me, so vocalizes it on most days 😉 But I agree. I never regret the time that we’ve had.

  12. I just love you, sweet girl. Big hug.

  13. Ugh. This hurt. Dealing with my mom who is (unfortunately?) 100% there, mentally. Physically, she’s a wreck. And I have been disappearing. Wrestling with uncomfortable memories of our entwined pasts, trying to reconcile with the wounded girl I was and the good mother I think she was capable of being.

    You are good family for your Gram, Abby. I’m sure she loves seeing you, even on those days it feels like she isn’t seeing you at all.

  14. Beautiful Abby…now I have tears in my eyes. Hugs to you.

  15. As a Person With Dementia myself, thank you for keeping on keeping on. Have you read Nader Robert Shabahangi’s book “Deeper into the Soul: Beyond dementia and Alzheimer’s toward Forgetfulness care”? I love his portrayal in “Levels of Reality”. The book is currently pretty expensive on Amazon but only about $15 from http://www.elderspress.org and I bought about three copies hoping my family would read it before I get to the hardest stages, but of course they don’t “need” it, and it brings reality a little too close to home so they are not interested. So I go back to writing my blog. And that’s how I happened to read yours. I hope my own family will just be there and hold my hand, and rub moisturizer onto my back. I am finding the language of TOUCH is so important. Good job. Keep in up.

  16. Good for you, Abby. You are doing what you feel and believe is right for yourself and your Gram. That’s all we need to know about our own lives and family. I believe that we all, at one time or another, project into our futures. How will we end up at the end of our lives? So, it’s almost like paying it forward, and showing our kids what is the right thing. Love and respect and caring. Family. It’s so important. 🙂

  17. This piece of writing is so beautiful, poignant and full of love. I never knew any of my grandparents. They were dead before I was born. It must be wonderful to have memories of such a glorious relationship, albeit memories tinged with sadness. Thank you for sharing your Gram with me.

  18. Thank you for sharing. It is such a difficult yet inevitable process.

  19. When my grandmother on my father’s side developed Alzheimer’s, it was harder on my dad than on me. I had never been especially close to that grandmother, so it mostly was just sad to see her become so confused. But Dad told me that the day she turned to him with a smile on her face and asked “Who are you?” it broke his heart. My dad has always been the strong one, the one everyone turns to for help and advice. It would kill me to see what happened to my grandmother happen to him.

  20. What a lovely post, although a sad one. I’m sorry your Gram is slipping it way, and I understand how hard it can be to watch. My thoughts are with you, and I thank you for sharing this side of you with us.

  21. Thank you for sharing. I have an aunt who’s going through the same and she just lost her sister, my other aunt, who lived with her, and it was just heartbreaking to see her get the news over and over again in the days following. Now she says that her sister’s off visiting her parents, which I suppose, in a way, is true.

  22. This is beautiful, moving and direct and your reasons for going ,and especially that ” love doesn’t just disappear” are as right as they could possibly be

  23. Totally understand…same with grandpa!

  24. It must be very hard to cope with, although at least she is happy and pain free which is a blessing.

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