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.
Personal Abilities & The Gender Divide
I’m going to defend the two male respondents who seem argue for institutionalization as the optimal choice for managing the care of people with dementia. At least defend them by understanding that men are roughly in the same position with respect to the feelings of being incapable to take on certain important social roles as women once felt about taking on certain roles say, fifty years ago. This is pretty much what Gloria Steinem was observing in her remarks about not yet knowing if men are able to do what women have always seemed able to do. Gloria, of course, speaks as a female observer, so that capability may not be readily apparent to her, though she does suggest that she thinks it is so when she says, “…men can be as nurturing and loving as women can.”
The truth is that women may suspect this is so, and may surmise it is so, but they can’t really know it is so. The reason being, that men don’t yet know if it is so. They are just beginning to learn how to expand and extend their abilities in unfamiliar ways – ways women grow up trained to do. Moreover, men like those quoted in Frances’ article, clearly can’t know if men (or women) should or should not be caregivers, but speak as though they know that to be the case and can speak for everyone from their limited male perspective. They can’t, of course. No more than women could before they took their own journey into testing themselves in traditionally male roles.
So, I won’t disagree that men’s ability to equal (or perhaps excel) in the role of caregivers is a question which still hasn’t been answered. While woman like Gloria Steinem and Frances Kakugawa may suggest that men have that capability, it is not yet something they can know, anymore than men could know how women might do at things like flying commercial planes and fighter jets, or building houses or being nuclear physicists, or challenging men in their own sports such as kickboxing or golf. The only way women could confirm that ability was by doing it. And so they did.
Men, then, are in relatively the same position now as women were at the beginning of their expansion of roles. It will be for men, if they wish, to assert themselves into these new roles from which they were once excluded. And it may be, that the very fact they are men will offer the added benefit of taking on those new roles in ways that might improve upon how women currently do them. There is evidence of this in some areas, such as nursing, where men have breached “the floral ceiling” and made steady gains and their own contributions to those fields.
Frances has suggested in other articles on the subject that men and women seem to bring slightly different capabilities with them when they first take on roles as caregivers. I fully agree with this assertion. And, moreover, with her suggestion that women are really no better equipped to take on the full range of demands that caregiving requires. They approach these requirements differently, that’s all. And, because of prior role-based training, some of those demands seem to be easier for one gender to perform, while others are easier for the opposite gender. There is nothing, in any of the jobs that caregiving requires, that cannot be learned and accomplished by either gender given time and the willingness to learn.
What divides those who do caregiving well from those who do not is not a matter of gender at all. It is a matter of temperament and personality and priorities more than anything else. In short, there are those suited to taking on the responsibilities of caregiving (and of realizing its rewards as well) and those who are not suited to the task. This division has nothing to do with gender. What is required of men, when considering the matter of caregiving as a personal undertaking , is simply not a question women can answer. Men must answer this for themselves. And, they will need to do it in much the same fashion that women did when they expanded their own role opportunities. Like women, men will need to try and fail and try again. For awhile they may need to out-learn and out-perform their female counterparts, j ust as women once had to do (still have to do in some cases.)
Social Obstacles and the Gender Divide
But the assertions of the men who were quoted go further than simple rejection of home caregiving due to difficulties which their male perspectives might regard as absolute barriers to such roles. They extend their thesis to assert that the role of caregiving , as a personal or family-based endeavor, is inappropriate for anyone, and that “institutionalize them” is the only sensible response for managing someone with Alzheimer’s. “For your own sanity,” one of the men says. “You don’t do anyone favors keeping them at home,” says the other.
We can understand where these men are coming from, and empathize. They are speaking about a journey ahead which they feel ill-prepared to take. They presume and project from the male point of view that no one is prepared to take on those responsibilities (at least not without risking their sanity), not men, not women. A male that has not yet considered such roles to be within their own skill-sets, would certainly not consider that anyone else could take on such a task and remain sane. This is not much different than women might have once thought before they thought about joining men on the front-lines of battle, or rattling all day on the brute end of a jackhammer, or endure the fumes of beakers and test tubes in a laboratory.
But there are also real social barriers and cultural obstacles to be overcome. For one, there are the language difficulties one finds when entering any work area defined by another culture. When women first took on those unfamiliar roles they had to master a whole new set of arcane languages. Not just those keyed to the job (difficult enough in themselves) but the whole “male way” of saying things, asking for things, instructing each other, even just having lunch together. It was a male world and a male language. Being isolated from that language and its codes was tantamount to remaining an outsider and ultimately failing at the job. As we all know, such jobs are as much tests of social interaction as they are of performance skills. That’s what work is, a social activity. [I'm excluding matters concerning language that is personally hostile and inappropriate, such as sexually offensive language or language designed to be insulting or derogatory . Men may also have to deal with some of that as well when stepping into roles currently dominated by women, but it is an entirely separate matter.]
It is simply that the different genders have different codes when conducting formal or informal communications. Female health professionals generally dominate the caregiving sectors of the health support industry. Male caregivers quickly learn that they are mostly dealing with women and that there are certain codes associated with the success of getting the support they need to fulfill many of their tasks. In some cases, it may be nothing more than the way a men differently describe what they need or ask for (or don’t ask for) , or how they respond to questions that keep them from getting their needs met simply because some woman felt their manner was too direct or abrupt or insensitive or somehow not in keeping with her expectations (expectations that another woman might recognize immediately). So, we can understand when a man says “it will make you crazy”, that some things, like trying to fit in to a women’s coded world, can certainly seem crazy-making to a man, until they become familiar and adept with those codes.
All of this presents certain difficulties to the home caregiver, and some special difficulties to the male home caregiver in a “woman’s world”. But none of them are insurmountable; many apply to both men and women; and, nothing about them argues for simply abdicating a new role in favor of turning the matter over to institutional caregivers and being done with it. There are real reasons for opting for institutional care, but simply asserting it is not something people should do is not one of them.
The “never ever’s” and the “forgotten’s” of Caregiving
There are good reasons to opt for institutional support to do the caregiving for people with Alzheimer’s or other severe forms of dementia. And some of those reasons may have to do with the personal sanity of the caregiver or the daily forgetting by a loved one. But it is not those things, per se, that argue against accepting the responsibilities of caregiving; nor of one’s being able to do the job. In many cases, family home caregivers can do a much better job than any institution could ever hope to do. But if that isn’t within a person’s makeup to take the job on, then there is no shame at all in accepting that caregiving is not for you and electing to opt for institutional care. This is as much true for women as it is for men.
What really makes the difference and decides the matter is whether one is “cut out” to be a caregiver. That may seem to be an awful vague definition for a job qualification. But that is really what it comes down to. Surprisingly, very few caregivers really know, beforehand, if they are “cut out” to accept such responsibility — and make no mistake, it is a difficult job. Usually caregiving comes upon the family caregiver without advanced notice or serious forethought . People often give less thought to whether they are really “cut out” for being a caregiver than they do when buy a pair of shoes. In truth, most home caregiving is accepted in the same manner as “boiling frogs”. Slowly, day by day, the role of being “helpful” changes to the role of being “supportive” changes to the role of being “depended upon” and then, without knowing quite how, one finds they have become a full-time caregiver.
That is the worst way to opt for caregiving. It leaves the matter entirely to a roll of the dice. If one happens to be “cut out” to do the job, then one will learn in time and may even find pleasure and reward in taking that role. If one is not “cut out” for it, then the job can only be entrapping and day by day it will threaten both the well-being of the loved one and the sanity of the caregiver. But, if it is the case that one is truly equipped to take on the responsibility, caregiving can not only be “the right thing to do”, but one of the most rewarding (if difficult and exasperating) things that one will ever do. Not only can it do “favors” for everyone – the loved one, the family, the health professions and the caregiver – but it can provide the basis for a type of personal sanity and healthy perspective that that pays dividends for the rest of one’s life. This has nothing, whatsoever to do with gender.
Of course, determining if one is really “cut out” for the job is another matter and a subject for another essay. Only to say here, there are things that one should do, long beforehand, that can help answer the question of whether caregiving is a ‘never ever’ or a ‘don’t miss the chance’. In my own case, I lucked out. It seems I was cut out to be a caregiver after all. At least, after 15 years of doing it, I came away with a new appreciation of what it was to care for someone else. More importantly, I gained an entirely fresh perspective on my own life and the gift of being alive.
In the end, I really got more out of the experience than I gave (and I did give plenty). No one can tell me I didn’t “do anyone favors by keeping them home” – if all she could do was squeeze my hand, my mother let me know how big a favor I was doing for her. And, if each day she “forgot” and we had to renew who we were, it was also a day of triumph and joy that we did it. But, for me, and as Frances writes in her poem, I am more a “somebody” today than I could ever possibly have been if I hadn’t had the experience of being a caregiver. That’s one favor I never expect to be able to repay.
Is The T.V. off?
Witness the day, the table, the resolve
that pours itself into new containers,
as if I hadn’t been on hand the day before
to make the same mistakes I’ll make
arranging things again to start over
again and do it anew, the buttons on her shirt,
the noodles on the floor, the sopping wet
Depends I’d just finished changing. Scoot
out the door, then out the door again
and then, out the door until we get it right
or get there late or give it up again along
with some before that might have been
paren’d and pinned between yesterday’s
begins and ends. Then, once more.
“Who are those people in the other room?
Have my students come for their lessons?”
That’s the t.v., mom, just the t.v. on.
Come take you pills, they’re on the table.
“Oh, first I need to go see whose here,
I hear them talking in the other room.”
It’s the t.v mom, just the t.v. Take your pills,
I’m poaching eggs for you. The water’s
on the table, there. “I will. But first
I must see who is in the other room,
I can hear them speaking, don’t you
hear them speaking? I do. I must
go and see. They may need me, don’t
you think they do? Don’t you hear them too?”
“Hello, this is Erik’s t.v. repair at 4th & Pine.
Do you know Isobel? She’s here in my shop
but I don’t think she knows quite where she is
or where she’s been; just wandered in alone
and doesn’t seem to know her way back home.
I asked if I could help, but she pointed to a t.v.
and said the people there had come in first,
that she would wait her turn. No, not at all,
I offered her a chair, she’s just sitting there
and talking to herself. I think she whispers
answers to the quiz show guests on the Sony
I just fixed. Yes, I thought it best she doesn’t
wander off alone. Fine, I’ll let her know
you’re on the way. I’m here till six, Not at all,
glad to help, my mother’s just about her age,
3am or 4am, it doesn’t matter on this watch.
Whatever follows is whatever follows next —
detached from all routines and regularity,
my schedule tunes to sudden expectations —
Isobel’s in bed asleep, the t.v.’s off and I am too,
my face is resting on a smear of sticky jelly
on the table; my mind a blur of kitchen LEDs,
though I hear the visitors that come and go
at her request. is she in bed? The dialogs
with students that blend sounds that burst
in sentences and then impromptu verse.
Did I wipe up the jelly? Is she in bed?
Are those quiz shows whizzing by?
Did I pick her up from Erik’s shop?
Is the t.v. off? Is that jelly on the table?
Are we late again, are we really out the door?”
Is the t.v. off? Is that jelly on my cheek?
Is she actually asleep? is the t.v. off?
Wow, some very intesting points Red brought up. I agree that no one is really prepared to take on the caregiver role and go on that lonely journey. Not sure if anyone can be “cut out” for the responsibility, I think it’s something you grow into. It does have rewards, sometimes fleeting, and mostly personal. Maybe women just pull up their big girl panties and take it on because traditionally they’re already there caring for husbands and children.
Barbara, thank you so much for mentioning you got something from my (uhm, rather screedish, longish) little essay. Writers are always delighted to hear that news. I think you’re quite right, and “cut out to be” was a poor choice of phrase, perhaps, to describe the difference that makes a difference between those who will find themselves suited to the demands of caregiving and those who should just say “No” without being judged or made to feel inadequate. I don’t even think the difference can be captured by a set of qualities or qualifications. Its something subtle, beyond questions of physical or mental ability — nurture skills and all that. I’ve met people who appeared entirely unequipped for the role and who didn’t even much like the thought of community and dependence on one another, but who made incredible caregivers once they had been “trapped” into being caregivers. So I don’t know what really does it. Maybe nobody really knows. But I do know that people should give careful thought beforehand, when they are considering how to respond the the challenge if it comes.
On rewards, yes, a good many are very personal – just the feeling of accomplishment of getting your loved one to the doctors on time (which often fails more than succeeds), or getting through the next feeding without major incident, etc. Those little personal satisfactions are the bread&butter of caregiver survival. A middle group of rewards can come from things like keeping one’s sense of humor (there can be lots of laughs in the most macabre situations) or of translating the experiences into art or writing or poetry or some other creative mode, as Frances often mentions. But there is also another level of “reward” that is entirely impersonal and abstract. At least it was for me. It may be one of those “male” insights that men might have to offer someday when they are fully prepared to take on these roles — a way of caregiving and nurture that might escape most female caregivers at this time. It was something that kept me going and I know I would have caved in had I not discovered this little surprise insight in the fifth year of caregiving.
I’ve described the matter elsewhere (also a bit long and screedish). If you care to consider it, its in the second section of “Steward of Mortality” in an essay of the same name. https://www.facebook.com/notes/red-slider/stewards-of-mortality-a-story-of-one-womans-courage/424256440954524
Thanks again for your very kind and thoughtful remarks.