Saturday, August 20, 2011

Advice to New Caregivers

(The coordinator of our local caregiver’s support group noticed how well the group counseled new caregivers, people coming to the group for the first and just assuming responsibilities for the care of a loved one. She asked each of us to write out advice that we might give to new caregivers, so that she might summarize them into a handout for other caregiver’s groups. This is my submission to her.)

A simple definition of a new caregiver is this: Someone who has considered or even planned for an event his whole life, yet when it happens, looks like a deer frozen in the headlights. “Who me?” they seem to always say, as they panic at the reality of the situation, hoping against hope that someone else will step forward to assume a responsibility they know is theirs. This is some friendly advice to allay your fears, you new caregivers, and to get you moving forward again, deliberately and confidently.

There are two things any new caregiver needs to come to grips with, and as quickly as possible. The first is the hardest: yes, it is you who will have to do something. Whether it is the new baby or the newly-adopted child who is more-than-you-expected, your incapacitated spouse whether by accident or disease or old age, or your parent --- you have become acutely aware that this person needs special care, special love, and no one else is going to step forward. Yes, it is you who will have to do something.

You can continue to argue with your siblings: “You said you’d help care for mom.” You can continue to argue with the doctors: “Isn’t there something else you can do to ease their situation?” You can even continue to argue with them: “Mom, you really have to see a doctor about your memory loss,” or “Dad, you really shouldn’t be driving anymore.” You can defer taking responsibility for a long time, but at some point you will have to come to grips with the reality of the situation. YOU need to do something. So think about it, plan about it, seek advice about it, and then move on. That’s the first reality adjustment you have to make, but fortunately the second is much easier: You are not alone.

You are not the first person to have a baby, a troubled child, an injured spouse, or elderly parents. There are many others who have gone through this and ARE going through this. They can offer you advice and comfort. And you will find it a great comfort to know that these strangers care about you and what you are going through. They really DO understand.

So let’s get started. Now that you know you have to do something and you’re not alone in this, where do you begin?

1) Consult The Experts. This means doctors and/or medical advice in books or online. It means lawyers to make sure you are properly set on things like Wills and Powers of Attorney. Get more aware of what you are facing. What is the situation now, and what is it likely to be in the future. Much of our fear is of the unknown. Know what your loved one is facing, and expect it. Discover what experts say is likely to happen --- the progression of Alzheimer’s, or cancer, or the impacts on the body of a lack of mobility. At which stage is your loved one now. Know what will happen, and don’t panic when it does. Be prepared, physically and emotionally. Most long-term caregiving situations will involve a change in the status of the loved one being cared for. If it is an elderly person, the realities of death must be faced at some point. Get yourself prepared.

2) Get Emotional Support. Respite care, time away from caregiving duties, is a must. Siblings, relatives, neighbors, churches, or respite care agencies are available to you. Seek them out. Planning for yourself to be the caregiver 24 hours a day is not planning. You will fail, not only yourself, but your loved one. Day care programs or senior programs are available in most communities. Check with your local United Way. Find a caregiver’s support group, and attend their meetings. You are not alone.

3) Find God. You are not alone --- ever. But there will come days, there WILL come days, when you will feel terribly alone, and perhaps afraid. When my mom had her first TIF (a kind of mini-stroke) and didn’t recognize reality for hours, and didn’t even remember how to drink a glass of water, nor recognize me --- that first time I was in a panic. Call EMS or a doctor at 4AM? But in my panic and rapidly rising blood pressure, I called out to God. And as I lay back in the chair with my arm across my forehead, trying to calm down, despite her own confusion and panic mom saw me and said: “Aww, you’ve got a headache? I’ll be quiet.” And she was. And gradually I calmed down, and over some hours, so did she.

You are wasting your time reading this advice, if you are too proud to seek the advice of the ultimate caregiver. Coming to grips with the reality of God, that He is with you in the situation, greatly eases your problems. He is someone you can always talk to, an ever-present friend. But for some of us, before we can accept the help of God, we need the next step.

4) Find Humility. This is a non-negotiable. Find humility, or it will find you. Some of us are people of many talents. We are business leaders, educators, or scientists. We are smart. We have never faced a problem we couldn’t figure out a solution to. We will find the best solution to our loved one’s needs, and implement it. And then all will be well.

It won’t.

I’m sure there are some who have had success with this attitude, but I wonder if their loved ones FEEL loved with the results, being treated with some scientific formula for success. Every person is unique, as is the progression of any illness they have. It is THEIR illness, not AN illness. Doctors know this, which is why most fear government programs that might dictate some standardized care. There is no average person; each is unique. And if you really love your loved one, you will treat them as the special person they are. This means to care for them, your life will change, and you must accept this fact. Even if the most caring thing you can do is to place them in an assisted living arrangement, still, you need to be there for them more often than you were in the past. You need to take care of their finances. You need to make their medical decisions. They have become a greater portion of your life because they need help, because you need to give them help, because you love each other. You need the humility to change, to accept the fact that you can’t predict how their illness will progress – and so you’ll have to change even more in the future. Which leads to a final piece of advice: Not only you, but they need to get humble also, and you will need to help them in this transition.

5) Be Who You Were Made to Be. The Catholic Church teaches that we are called to grow in holiness, our whole life. Our relationship with God is not a stable thing; it should be getting ever better, culminating in the perfection of heaven. Human relationships are constantly changing also, but most noticeable in the relationship between the caregiver and the one cared for. In human families, in life-long commitments, there often comes a time when the caregiver and care-receiver must reverse roles, and that is a very hard time, for both.

A baby, needing everything given to it, crying in the night needing constant attention, eventually grows up. And its needs change, and so does the responsibility of its caregivers, its parents. Eventually, the babies grow into adults and there is some parity between caregiver and cared-for. It is the way of life; they become who they were meant to be. But with old age comes a reversal of the roles, parents begin to need the attention and care. Fortunately for us, this is a gradual thing, and we can see the signs of change, and gradually step up to some caregiving role for our parents --- or not.

Just as letting the teenager go onto adult things and responsibilities is a very gradual, subtle thing --- “Can they handle it?” so our taking over responsibilities for our parents is a gradual and subtle thing: “Can they handle it?” Just as teens often think they can, and their parents disagree and say no, so it often happens that elderly parents think they can still handle things, and now their children must say: “No.”

I’m not sure who this gradual role-reversal is most hard on, the parent who must cede some of his freedoms or the child who must assume them. But the key word is “must,” we must be who we were made to be, at all stages of our life. Even as the teenager wants to reason with the parent: “If I can die in the army, certainly I can drink,” so the elderly parent wants to reason with the child: “I only got lost shopping once,” or “Yes I forgot dinner was on the stove, but the house didn’t burn down, did it?” At these change points in the relationship, the stronger, more responsible one must take loving leadership of the situation, and not yet strong or weakening one must accede to their loving care. It is a most difficult time, but it must be faced and accepted.

At one point in my relationship with my mom she expressed frustration with my doing the things she couldn’t. Sometimes she grew angry at me. One day, I was confessing my feelings about caregiving to a priest; I felt that I was not loving enough. He wisely counseled me: “No, you are loving very well. What you are not accepting is that life has run its full course: now you are the parent, and she is as the baby. You do things, many stressful and difficult things, out of love for her. But as a baby, she just doesn’t understand. Don’t try talking or reasoning with her anymore, to explain your actions. Just try hugging her more. All babies understand hugs.”

6) Try Hugging More. Even yourself. Caregiving is not easy. You may sometimes think you are alone, but try hugging a little more: your loved one, your family, and your God. It helps.

Good luck, and God bless you for caring. And do not be anxious.


  1. This is great advice, Tom. You are spot on! You have drawn from your own life experiences, to give sound advice to new caregivers, and their ailing loved ones.
    Most important,is the advice to consult with the ultimate Caregiver. Without that dimension, we all fail.

  2. Ah, ME, these are drawn from your life experiences, also. You are an inspiration for me and others.

    I saw your note on Clinton, and pray for his recovery and God's care.