More than ever, Alzheimer’s Disease is touching our lives. From having a grandparent forget your identity to watching a friend suffer through her mother’s early onset, the effects on the people that aren’t diagnosed are more personal than any textbook can hint at or prepare you for.
My Nana was the vice president of a bank she worked at for nearly 45 years. Her mind was sharp—numbers came naturally to her, as did leadership. This is how she climbed the career ladder, not only as an employee, but as a woman encountering challenges from male counterparts along the way.
A few years after her retirement from the bank, something didn’t seem quite right.
“Her mind was sharp—numbers came naturally to her, as did leadership.”
The woman that once prepared 25 Christmas “countdown” presents for me, her only grandchild, was suddenly unable to sign a birthday card correctly.
Years of filing, entering, sorting, and reporting numbers had been reduced to my grandfather having to fill out checks on her behalf. Homemade family dinners had transitioned into eating out each night or my mother cooking the meals her mother had forgotten how to.
The worst was not her inability to complete tasks. These things were easily substituted. The worst came when my Nana could no longer recall names, or didn’t know how she knew someone, or couldn’t remember how she knew me. The worst things were those that couldn’t be covered up.
In early March of 2019, my mother and I planned to leave town for Spring Break. Our plans were postponed when my Nana complained of not feeling too well, so we went instead to be with her at the hospital.
“The worst things were those that couldn’t be covered up.”
We thought hardly anything of it. She had been dizzy, so we assumed it was dehydration. “Do I get to go home today?”, she would ask my grandfather nearly every day. We did not know that she would never return home.
Leukemia unexpectedly took my Nana before the month was over.
In a way, we were relieved. Her battle with Alzheimer’s was only in the middle stages (she had been suffering for only around three years) and we knew that if it progressed she would eventually forget how to eat, bathe, and function on her own.
The challenge with her death was not wishing it wouldn’t have come. Rather, it was coping with losing her, losing a person that I loved very much, without ever really being able to say goodbye due to her memory deficit. Instead, I felt as though I had lost someone I hardly knew. But I hadn’t.
“I felt as though I had lost someone I hardly knew.”
I had lost my grandmother, who I would spend every weekday with over the summer. The woman who would sit and paint watercolors with me. The smiling face in the crowd at every volleyball game.
But I struggled to see this woman within her in her final weeks.
Instead, I saw a patient, a resident in a memory care facility. I saw the IVs and the late nights and her beginning to blend in with the others who wouldn’t remember that I had been there the day before. I described her “real” death as having happened long ago, and it did seem this way.
Since her passing, I have learned a few things from losing a loved one with Alzheimer’s Disease that I felt important to share.
What I Learned from Losing a Loved-One with Alzheimer’s
1. Be with Your Loved One All That You Can
After learning my Nana’s diagnosis, I would avoid her home, which I viewed to be riddled with awkward conversations, false relationships, and a massive elephant in the room.
I had decided that since she probably didn’t know who I was, that there was no point to me visiting. My relationship with her evaporated.
I was mistaken to believe two things—first, that I would not miss this lost time with her since it wasn’t truly her in the first place, and second, that it was all about the relationship between her and I.
Not only did I miss out on memories that could have been made with her—whether it had been the woman I knew my whole life or this newly introduced character—I made the process of her memory loss more difficult on my mother and grandfather by choosing to be absent.
Thankfully, I made this realization a month prior to her death, which made every second by her bedside all the more valuable.
My point in saying this is simple: don’t wait.
2. Say What You Want (And Need) to Say
Being left without closure by losing a loved-one with Alzheimer’s is difficult enough.
I struggled internally for a while with how and what to say before it was her time. This was in part due to her obvious incomprehension of the situation.
Around the age of eleven, I had written a song commemorating my Nana’s mother. This song was one of my Nana’s favorites to hear me play on the piano.
She had never heard the words to the song, and as far as I know, neither had anyone else, until I brought in my guitar and sang it to her in the nursing home.
The song was accompanied by a letter.
In the letter, I disclosed to her my planned future happenings that I knew she would not be able to see herself: my graduation from a 4-year university and attendance of graduate school, my future career as a clinical psychologist, my likely marriage to my high school sweetheart, and my plan to give her many, many great grand-dogs.
This letter was the first time her and I had openly acknowledged her disease and was the first time in a long time we had truly “seen” each other.
I will forever value this as our last true conversation, no matter if she recalled anything an hour later or not. I had to learn to be okay with that conversation being for me. Some things I needed to say for myself.
This wasn’t selfish, but was rather a realistic way for me to receive closure. I learned that the memory of a moment like that is not what counts when dealing with Alzheimer’s.
It is the moment itself, no matter how brief, that truly matters.
3. You’ve Got to Talk About It
A common mechanism when coping with grief is to stay silent. For some reason, we tend to think that avoiding any mention of our lost loved-one will heal our pain when in fact the complete opposite seems to be true.
The loss of my Nana taught me that talking about the situation, and the person(s) with Alzheimer’s, is vital in the healing process. Not only does this allow for members of the family to be open and honest and rely on each other for support, it keeps the memory of the lost loved-one alive.
It would be a disservice to my grandfather, my Nana’s husband of over 50 years, to deprive him of the spoken memory of his wife.
It is our job as able-memoried individuals to pass on stories of our loved-one that they are unable to tell us themselves, and to keep the memory of them alive.
It is our job to speak of them when we can, to laugh and cry when we can, because we cannot allow an exit from the Earth to result in an exit from our minds.
4. “Goodbye” Is Both Internal and External
When you lose someone that is suffering from Alzheimer’s Disease, it is hard to feel like you were ever truly able to say goodbye.
The person that has passed seems like they passed so long ago. The person you are left with is not the same as the one who has been taken from you.
So much of our lives revolve around memory, and it almost feels as though a person is not a whole person without it. I wish that I could have known which was my last conversation, my last time spent with my able-memoried Nana, although it is unrealistic to think that we could have said our goodbyes then.
Our external goodbye, and by “external” I mean physically spoken goodbye was one that I hardly remember and one that I know was near meaningless to her. Even then, when I kissed her and told her goodbye for the final time, it was similar to kissing a stranger. There was hardly anything there.
This is why I say that “goodbye” must also be internal, meaning within oneself. I did not have one shining comprehensive moment during which I knew my grandmother would be leaving me as the person I knew her as, and in a way, this was a challenge. I was not as prepared for her mind to slip away, and for her to as well.
I received no closure. However, I have since learned that this type of closure can be found within myself.
“This type of closure can be found within myself.
Knowing the love that she had for me, how proud she was of me, and thinking about our memories made and the value of the 20 years we were lucky enough to spend together gave me closure.
I’ve heard people say that Alzheimer’s is worse than cancer. My family was heartbroken that someone we valued so much managed to be taken by both. In a way, I view this loss of my grandmother as a life lesson.
Since her death, our family has grown exponentially closer.
I have begun to cherish the moments with my loved ones more than ever before. I’ve learned to spend a little more time, hug a little longer, and love a lot stronger. I hope that others, without a loss to trigger it, can learn to as well.
Written by: Danni Huber
Danni is a rising senior at Queens University in Charlotte, North Carolina studying psychology.
In her free time, you’ll find her singing, writing and playing music, and reciting all the US presidents (in order!) to anyone who will listen.