On my Soapbox to Two Men Caregivers
“Never ever take care of an Alzheimer’s patient. Institutionalize them for your own sanity.”
“You don’t do anyone favors by keeping them home. You’re forgotten the minute you walk out of the nursing home.”
I’m shouting through a megaphone on a soap box after reading the above comments from two men on giving care to loved ones with Alzheimer’s disease. I’ll try to remain calm.
1.Some sons (and daughters) are not meant to become caregivers.
2. No, they don’t remember but they deserve dignity, compassion and love from us because this is what it means to be human. Being human doesn’t end because one has no memory or speech or whose bodily functions have been eliminated.
3. Better said than done, it may seem, but as a caregiver for my mother the daily discoveries on how to be the best possible caregiver brought many answers not yet found in medical offices. I couldn’t change the physical and medical aspects of this disease, but I could change my attitude and this dictated to me, what caregiving was going to be about. Never, you say? There are as many circles to caregiving as there are families. Never or Always denies the individuality of each situation.
4. Above everything else that goes on in caregiving, we must preserve human dignity because whatever we do to others, we do to ourselves.
Some of my discoveries:
There are two normal worlds, mine and hers. I entered her world instead of trying to bring her into mine because the disease doesn’t allow this. So when she said, “My sister was here,” and in my world, her sister has been gone for years, I entered her world and asked,”Did you have a good visit?” And she shared her hallucinations with me. We flowed together, she and I, in her normal world. I often brought her into mine when we went to restaurants or walked or wheeled the mall or sat at the beach.
Yes, the constant repetitions do hit many nerves. In her world, she was asking it for the first time so I entered her world and answered each repetitive question as though it were being asked for the first time.
I also embraced the new person who was evolving before me and I learned to love this new person, perhaps more than the one before Alzheimer’s because of the care she needed and of who we were before Alzheimer’s. The changes in our roles transformed our relationship, and had I held on to the former, it would have evoked helplessness and negative human emotions.
Words. Words make such a difference. They create attitudes and attitudes become part of how we perceive caregiving. To call any of her behavior abnormal creates frustration. To call that exact behavior as her attempt to retain her own dignity brings compassion. Words.
To those two men, I’ll put my megaphone down after I repeat my Emily Dickinson poem, the poem written when I asked myself one day, if my mother could speak, what would she say?
Emily Dickinson, I Am Somebody
If I could speak, this is what
My voice would say:
Do not let this thief scare you away.
Do not let this thief intimidate you
Into thinking I am no longer here.
When you see me, tell me quickly who you are.
Do not ask me, “Do you know me?”
Help me retain my own dignity by not forcing me
To say, “No, I don’t know who you are.”
Save my face by greeting me with your name
Even if the thief has stolen all that from me.
It shames me to such indignities to know
I do not know you. Help me
In this game of pretension that the thief
Has not stolen your name from me.
My words have all forsaken me,
My thoughts are all gone. But do not
Let this thief forsake you from me.
Speak to me for I am still here.
I understand hugs and smiles and loving kindness.
When I soil my clothing or do something absurd,
Do not ask me “Why didn’t you?”
If I could, I would.
I know I have turned into a monstrous baby,
If I could, I would not allow this thief
To let you live and see what he
Has stolen from me.
I know my repeated questions
Are like a record player gone bad,
But my words are gone and this is
The only way I know to make contact
With you. It is my sole way of saying,
Yes, I know you are here. This thief has stolen
Everything else except for these questions
And soon they, too, will be stolen away.
I am still here
Help me remain a human being
In this shell of a woman I have become.
In my world of silence, I am still here.
Oh, I am still here.
Gloria Steinem recently said that changing the way we think about masculinity is one of feminism’s great remaining challenges. After decades of feminism, she said, “we know that women can do what men can do… But we don’t know that men can do what women can do.” And that needs to change, because “it’s really important that kids grow up knowing that men can be as loving and nurturing as women can.”
I’m reacting to those two men alone tonight because I know many men caregivers who are as compassionate, caring and capable as women. These men obliterate gender. I hope these caregivers, along with women caregivers, will add their stories to this post so we can reassure Gloria Steinem that what she suggested has been happening for decades. And more importantly, we reach those caregivers whose voices echo those two men above.