alzheimers, caregivers, caregiving, dementia, faith, inspiration
Every now and then, you come across something that touches you so deeply you want to share it as widely as possible. That is the case with this sermon from Rabbi Steven M. Glazer. The words he writes about caregiving are profound, whatever your faith. I believe they have the power to provide comfort to many struggling caregivers.
Heroes Among Us
Rabbi Steven Glazer
September 29, 2011
Rosh Hashanah First Day Sermon
If some of what I am about to say sounds vaguely familiar to a number of you, it is because this morning I am revisiting a topic I addressed on Yom Kippur in 2005! It will be clear in a just a few moments why I have chosen to do so. I want to speak with you today about “everyday heroes.” Not military heroes, or others who have performed deeds that we customarily define as “acts of heroism,” but rather the countless numbers of women and men, some of whom are sitting in this sanctuary right now, who everyday perform “acts of heroism” which we do not usually recognize as such.
These are the people who, day in and day out, week in and week out, month in and month out, carry out the enormously challenging, the enormously draining, and the enormously difficult task, of being caregivers to those who are afflicted with one of those diseases that ravage the bodies and consume the souls of the people with whom their lives are bound. Today I want to talk with you about what we should do and how we should cope when someone whom we love is stricken with a debilitating disease.
Many of you already know the reason I have chosen to revisit this important, but painful, subject. This past winter, thank God only for a brief time, I became a caregiver, as Andrea’s lymphoma became aggressive and she also
developed something called Stevens-Johnson syndrome, which can be fatal. Having briefly experienced “caregiving” first-hand, and the physical and emotional exhaustion that accompanies it, I felt compelled to speak again about the topic. Please understand that I was only a very short-term caregiver, and in no way consider myself among the heroes we are discussing, but only someone who had a small taste of what they experience for months or even years.
As I look around the congregation, I know who in this sanctuary is wrestling with this situation in their lives right now. And I can tell who is worried that, if not this year, then maybe next year, this will be their fate. And I also think of all the people I know who suffer from such diseases and of their caretakers.
It’s terribly hard to be caregiver – whether to a parent, spouse or child! There is an old Yiddish proverb that says: “when parents feed children, they both laugh; when children feed parents, they both cry.” How true, how terribly true, that proverb is!!!
It is hard, terribly hard, almost unimaginably hard, to be a caregiver. For when you are a caregiver to someone whose mind and/or body have been greatly diminished by illness, so much of your life is consumed, and there is so little relief and so little respite, and sometimes so little appreciation from the one whom you are caring for.
When you are a caregiver, you must struggle against exhaustion, against self pity, and against resentment. You must struggle against anger and against a host of other emotions that no one who has not gone through what you are going through can ever even begin to understand. And eventually, your strength wanes and you become weary and worn out.
Other people may tell you how wonderful you are. Other people may say that you are saintly. But in your own eyes, you are simply doing what you have to do. It is not the life that you would have chosen, but you cannot imagine doing anything else in the situation in which you find yourself.
But the truth is that what you are doing is heroic, for there is an alternative. You could quit, you could give up, and you could abandon the one whom you are caring for. Therefore, because you have an alternative, to muster up the physical and the emotional stamina that caregiving requires, day after day, week after week, month after month, sometimes year after year, to hold on so fiercely to love, even when the person whom you love has changed so profoundly that he or she is no longer the same person, and to care for someone for whom you may have had, not always love but sometimes ambivalent and complex feelings, this is heroism, heroism of the highest order.
Does Judaism have any wisdom and any guidance to offer to those of us who arecaregivers today? Or to those of us who may face this challenge in the future?
It seems to me that the Jewish tradition has three lessons to teach us.
The first is that, according to Judaism, you have the moral right, and you have the halachic right, to follow the advice of Maimonides who specifically tells us that if the task of caring for a loved one becomes too difficult, then you have the right to turn over the task to one who is more competent, to one who is less emotionally involved, to one who will do it with you or instead of you. Maimonides is very clear. He says that there are limits to what a human being can do. And if you reach that limit, then you are allowed to hire help, and you are allowed to place your loved one in a facility that is set up to care for him or her, and you are allowed to share this difficult task. For if you don’t, then you will collapse. And why should there be two who are ill instead of just one?
Maimonides says that the decision to turn over the responsibility for the care of a sick one does not absolve you from the duty to visit, and to care, by no means. But it does absolve you of the duty to be consumed with the task until you yourself become ill as a result. And so, this is my first word of guidance to you: there are limits to human strength, and there is no point to self destruction. Therefore, there is a time when it is permitted, and there is even a time when it is a mitzvah, to share the care of someone whom you love with others who can do it with you, and who can, perhaps, even do it better than you.
The second lesson that the Jewish tradition teaches is that, as the Talmud puts it: “haShechinah shruyah al mitato shel hacholeh, – that God’s holy presence hovers over the bed of one who is sick.”
Now, what does that mean? I think it means that when you look upon the face of someone who is ill, frail and impaired by disease, it is a mitzvah to remember, to remember and to never forget that this person is nevertheless, even in his or her illness, even in his or her dementia, even in her or his dehumanized state, even when this person can no longer speak or think, even when this person can no longer recognize you, or can no longer even recognize herself or himself, that this person is still, nevertheless, made in the image of God. Nothing, nothing, whatsoever, not even the loss of the mind, can ever destroy the inherent dignity of a human being.
This means that no one is ever allowed to refer to someone as “the case in room 503.” It means that no one is ever allowed to treat this person roughly or disrespectfully. It means that no one is ever allowed to exploit or mistreat the person who is in their care. It means that no one is allowed to talk in their presence as if they were not there. And no one is ever allowed to treat them as if they were less than fully human. For “the Shechinah hovers over the bed of the one who is sick!” And we dare not ever forget that!
There is a wonderful Midrash that I would like to share with you today. I believe some of you already know it! When Moses came down from Mt. Sinai and saw the people dancing around the golden calf, he smashed the two tablets of stone, on which were written the Ten Commandments. And then, after God forgave the people for their sin, Moses went back up the mountain and brought back a second set of tablets. The Midrash asks: What did Moses do with the broken pieces of the first set of commandments? The answer: he put those broken pieces in the ark right next to the set that was complete. Why? In order to teach us that that which was once holy remains holy, even in its broken state. In order to teach us that broken people, senile people, people with Alzheimer’s, people with Parkinson’s, are still holy. People, who were once holy, remain holy, even in their broken state.
The last lesson that I would offer to those of you who are, or will one day be, caregivers, is this: know and understand that the task of the caregiver is not always to cure. Sometimes curing is simply not an option, not for the doctor and not for the caregiver. The task of the caregiver is not to cure, but to give to the person who is ill the most valuable gift that we can give them, the gift of reassurance. Every day you have the power and the ability to send a message to the one whom you care for, whether they have the power and the ability to receive it and comprehend it or not. You have the power to say to them, by your words or by your deeds that: “you matter to me and that in my eyes, you are still precious. You may not know who you are anymore, but I know who you are, and I care about you. Despite the damage that illness has done to your body and your mind, you are still precious to me.” And if you can do that, if you can send that message, difficult as it is to convey, and difficult as it is to receive, I can think of no mitzvah that anyone can do that is greater than this.
I conclude with a story, one that speaks to my heart, and that I hope will speak to yours as well. I can think of nothing that I can say to you today that is as important as this story.
Several years ago, I was at the doctor’s office. I was waiting in line to sign my name at the receptionist’s desk before I sat down, and I couldn’t help overhearing this conversation between the receptionist and the man in front of me. He said to her: “Look, would you do me a big favor. I see that the doctor is running late, and I have to leave in just a few minutes. I have an important appointment, a very important appointment. Could you please get me in early?”
The woman said she would do what she could, she would try her best, but then, for some reason, I don’t know why, she asked him, “what is the appointment? What is so important that you have to leave so quickly?”
And he said to her, “It’s my wife. She is at a facility for people who are suffering from Alzheimer’s, and I have to get there in time to have lunch with her.”
The receptionist said, “But if she has Alzheimer’s, will she really know whether you are there or not?”
And the man said, “oh no. She doesn’t even know who I am anymore. She hasn’t for a long, long time.”
And the receptionist said, “If she doesn’t even know who you are, then what’s the big rush to get there in time to have lunch with her?”
The man replied, “You don’t understand. She may not know who I am, but I still know who she is.”
The receptionist walked into the doctor’s office and said something to him. And then she came out and escorted this man right into the doctor’s office. Then she turned to me, and with tears in her eyes said, “That’s the kind of love that I would like to have in my life someday.” That is the true meaning of caregiving.
May God bless each one of us with much strength and much good health in this New Year. And if, in the future, we become infirm, then may God bless us with the joy of having such a caregiver as that gentleman, one who is truly devoted, and one who is truly heroic. And, if it turns out to be our lot to be the caregiver, then may we perform this sacred task, as carefully, as lovingly, and as patiently, as we can. And may God help us in this task.
Rabbi Steven Glazer
September 29, 2011
Rosh Hashanah First Day Sermon
If you wish to contact Rabbi Glazer please go to his website at www.glazerconsulting.com or call 703-402-7279
Glazer Consulting: Empowering Compassionate Critical Decisions
Great post!!! The last story brought tears to my eyes…
Ann Napoletan said:
Same for me; Rabbi Glazer’s words are so compelling. Thanks for reading.
Yes, beautiful. My mother didn’t know me, but I knew her. I am now in charge of my mother-in-law, 98, of slipping, but relatively sound mind, but having TIAs and becoming more confused and losing all rationality. She’s angry about her blindness and inability to live without aides. I arrange the aides, see her a few times a week, do her shopping, and leave my dog with her for a few hours because the dog is something she still enjoys. I do everything to keep her in her own apartment and out of a nursing home, but to her I am the enemy because I enforce her doctor’s orders and the requirements of the place where she lives. No aides = nursing home. I hope I’m getting good karma or receiving helpful lessons in detachment, because it’s a challenge to keep myself from reacting to her anger as I try to help her. I know she’s very frightened of death and of her own dependence. I’ve done lots of caregiving in my life. This is the hardest. So, it’s good to be reminded of the true role of a caregiver. Thanks, Ann. Keep up the great work.
Ann Napoletan said:
Elaine, I am certain you will be richly rewarded for the care you are providing to Vic’s mother. Not everyone would be willing to stay so consistent in what sounds like a very challenging situation. Life has a way of teaching us all sorts of things, and as you mentioned, this time with your mother-in-law is no different. Every challenge has its reward. You’re such a strong, beautiful soul. Thanks for your comment as well as your continued support and encouragement. With gratitude, Ann