How To Watch Someone You Love Forget Who You Are

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loving someone with alzheimer's
Heartbreak, Love

Knowing what’s coming can be just as painful as the reality.

The first time I met my husband’s grandmother, it was a warm and pleasant summer day. I’d gone with him and his mother to her apartment where they spent 3 to 5 days a week taking care of her, organizing her medications, and getting her groceries and meals prepared.

The meeting was filled with niceties, the talk was typical and small but every so often, she’d have to be reminded of certain minor things: What we were talking about, if we’d eaten lunch already. I ended up telling her several times what I did for a living, what my name was, or responding to her repetitive questions while my husband and mother-in-law bustled around the tiny, 1940s-style apartment, cooking, cleaning, and gently reminding her of things she’d forgotten.

At the end of the day, we smiled, said how wonderful it was to meet each other, and hugged our goodbyes. The next time I met her, a few days later, she had no idea who I was.

Though I ended up helping my husband and his mother care for her for several years, not once did she have any idea who I was. Despite the lengthy visits, driving her to the store, taking care of her groceries, feeding her meals, and even comforting her when she had to put her cat to sleep, she never said my name again outside of that first meeting.  

The night we took her to my sister-in-law’s wedding, it was filled with dazzling lights, dancing, food, and a slew of people coming to visit our table, eager to talk to her. She was pleasant, smiling and laughing, even dancing to a few songs with one of her sons. She ate and chatted, and commented on how lovely everything was.

When it got late, my husband and I drove her back home and took her up to her apartment. After she came back from changing out of her dress, she saw her grandson in a tuxedo in the living room and asked, “What are you all dressed up for?” The wedding, the dancing, the night she’d spent with friends and children and grandchildren was gone like it never happened. And for her, maybe it never really did.

This is the brutal truth of living with, caring for or loving someone with Alzheimer’s: Day by day, they will forget. They will eventually recede into a world where you simply cannot follow.

When someone gets diagnosed with Alzheimer’s, there is suddenly a time limit that’s even more aggravating and unknown than death. Death is assured, you see. A disease chipping at your loved one’s brain, however, is sneaky. Uncertain. You’ll never know from one day to the next if they can say your name, or if you’ll just get a blank look when you explain that you’ve met many, many times before.

To the woman that I helped take care of, that I helped feed, that I helped get groceries, and even cut up meals for her in the hospital — I was nothing more than a stranger. I’d known her for years, but she’d known me only for minutes. Maybe even less than that.  

The frustration of reminding her of things that had just happened, or trying in vain to pull a memory of something that happened years prior from the dark parts of her brain went hand-in-hand with grim relief at knowing if she accidentally gave in to anger in heated moments, it would soon evaporate like it had never existed. The petty irritation at hearing the same story for the (quite literally) hundredth time was mixed with heavy guilt of feeling that petty irritation and knowing there was nothing we could do to stop it.

Watching a loved one suffer from Alzheimer’s can be painful in a way that no other disease can. But it can also give people an opportunity that no other one can, as well. Maybe you won’t have the past to mull over together, and you may have to remind them of who you are quite a bit.

In 50 First Dates, Adam Sandler’s amnesiac girlfriend had to watch a video every day to be reminded of who he was, his love for her, and what her life was like. Every day was a puzzle that needed to be put together and every night it got jumbled back up. While there were some bad days, there were also some good days. And when you've seen the bad days, the good days are that much sweeter.

Loving a person with Alzheimer’s is much like loving someone with amnesia. Sometimes it will be difficult, and you will get frustrated — and that’s OK. Other times, you can look at it as a new chance for you to reconnect and explore your relationship together in ways that weren’t possible before.

You can literally spend every chance you get with that person delighting them. You can prove day in and day out how much you love them, and give them joy at the happy moments in life you’ve shared with them. You can spend your time focused on making sure that whatever memories they may be building with you are happy, and every single get-together is a chance to rekindle that relationship.

It won't be what it was, but that doesn't mean your time with them is over just yet.

And if the dark storm clouds roll in, and they forget a little more or slip when they call you by your sibling’s name instead, just remember to play your own little "video." Remind them of who you are, and why you love them.

Memories are a part of us, mind and body. The love that they have for you is still there, and no disease can take that away completely. You’ll just have to keep finding new ways to bring it out.

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