I'm an exhausted caregiver on the point of collapse

In caring for my sick husband and father and my demented mother, I feel I've ceased to exist as a person.

Published June 4, 2008 10:00AM (EDT)

Dear Cary:

The last six months of my life have become a living nightmare. I had already been taking care of my elderly parents, who live near me. My mother suffers from early midstage Alzheimer's and my father has a myriad of ills that include diabetes, neuropathy and mild depression. We have an aide for them who comes during the day, but all of the emotional caretaking, the doctor's arrangements, the errands etc. fall to me. My sister lives in another country, and my niece is about to get married and is a typical work-driven busy person.

In November, my husband suffered a stroke. His physical state has somewhat improved over these months, but he has been left with aphasia and some cognitive diminution. He is in a subacute nursing facility, and our great hope is that he will be home by the end of the summer.

I am completely and totally overwhelmed by everything I need to be doing for him and for my parents. In addition, prior to his stroke, my husband became involved in a long, drawn-out legal case that continues unabated, costing me legal fees and much concern for our financial status.

Last, and greatest of all, I feel like I have lost my husband, my mother and to some extent my father. They are alive, we are a loving family, but our relationships will never be the same. It is agonizing to try to parse what my husband is saying, and he can't be of any help to me in dealing with our legal/financial crisis. They are all completely dependent on me.

Friends and family are sporadically concerned, but I have never felt so lonely in my life. I feel like I have ceased to exist as an autonomous being. My time, my energy and my thoughts are taken up with providing medical care and emotional attention, filling out forms, talking to bureaucrats and medical people, and trying to provide them with somewhat of a social life. My husband comes home on the weekends and by Sunday night, I am completely drained. I have an aide two hours a day on Saturday and Sunday, but I get very little sleep, as he needs to be changed usually twice a night. On Monday I am close to catatonic and usually don't recover until Wednesday.

Coincidentally, I had been between jobs when my husband took ill and I have not been able to sustain a consistent, concerted effort to get a job. I find that my mental energy is depleted for anything but what I have to do each day. Also, the job market for 49-year-old women is not exactly stellar right now, despite all the articles about employers looking for older, steadier employees.

I am in mourning for my husband, my parents and my life. And I am sad and angry at how alone I am, how unfocused and meaningless my life feels.

I am not a religious person and I feel like I have no cushion, no support and nothing to fall back on. I can't continue to live like this. I feel like my life is over.

How do I regain myself? Do I even exist anymore?


Dear Undone,

Yes, you do exist. I know you exist because you wrote me this letter. But you are exhausted. You are so exhausted that you have begun to doubt your own reality. That is understandable. We cook, we play tennis, we teach. We have roles. When we play our roles, we remember who we are. When for some reason we cannot play these roles, when the people we play them with are not available, and when we are exhausted by endless work and emotional ups and downs, we feel lost. We used to cook, play tennis and teach. Now we change blankets, deliver medicines, mediate, schedule, run errands, make appointments, deliver patients to appointments, keep watch, administer pills, prepare meals, clean, do laundry, get people up in the morning and put them to bed at night, plan their days, listen to their woes, explain them to others, apologize for them, help them walk, keep them from danger. In the midst of all this we ask, Where is the person we were?

We have to get that other person back. But there does not seem to be time. Our former life seems like a luxury, an indulgence, when every task is urgent. We think we can handle it. We shove our needs aside. We think we can manage. But soon we are lost. We are exhausted. That is what happens.

So there are many things you need to do. You need to get more help. You need to get more rest. You can't fix this all at once. But you can start with small steps.

For some of the things you need to do, you only need a minute or two. What about these errands you are running? The time between when you leave the house on an errand and when you return can be yours. You can take some of that time. You can pull off the road. You can take a detour. You can claim five minutes, 15 minutes, 30 minutes, an hour, for your own. Say you are driving to the pharmacy. Take the long route that goes through the forest. Pull off the road in the forest. Turn off the engine. Sit in your car. Breathe. Get out of your car. Make sure you have your keys in your hand. Lock the door. Walk into the forest and stand in the forest under the trees, breathing, listening for the sound of birds. Take a few minutes in the forest. Breathe. Or take the route that goes by the river or the ocean or a lake. Sit down by this body of water. Look at the water. Take five minutes. Look at your watch. If it is 10 after, stay there, sitting, until 15 after.

Take the time you need. Your body needs this.

You need a program of self-care. If you belong to a gym, take a detour to the gym and spend 20 minutes exercising. Get in the sauna or whirlpool. Take this time for yourself.

See your doctor. Have your blood pressure taken and check your nutrition. Ask your doctor if there are physical signs of the increased stress you are under.

Ask everyone for help. Ask your caregivers, ask the agencies that provide them, ask your parents' doctors, ask your insurance company, ask your friends, ask your niece, ask your sister: Ask everyone for help.

Get more respite care.

You say you are not a religious person and have nothing to fall back on. That has got to change. You don't have to get religion. But you have to get support. No, "support" doesn't sound right. Not support. Power. Aid. Workers. Labor expended on your behalf to your tangible benefit. That is what you need. You need human power marshaled on your behalf. You need more people with shovels. That is what people sometimes do not understand: An overwhelmed caregiver does not need sympathy or emotional support as much as she needs tangible aid.

You need emotional support as well. You do not have to be religious to take seriously the need for emotional support.

Consider these suggestions. Yes, they come from a Catholic organization. You do not have to be religious to understand the common sense in these words. You can also find emotional support in other places. If it is possible to join a group of other caregivers, do so.

Take concrete steps, even aggressive steps, to involve your niece. Pick her up and take her with you on errands. Pick her up and take her with you to your parents' house. Just involve her. Put her in the car. That way you will not feel so very, very alone. Also, if you can, get help with case management. Identify things you are doing that are case management functions -- and see if you can turn them over to caregivers or nurses.

Oh, and, three, see if by concentrating on caring for your father, you can increase your father's ability to care for your mother. That is, try to cut back on emotional care-giving and concentrate on tangible tasks.

Take care of yourself. Find moments in the day. Carve out time for yourself. Get yourself back.

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