Caregiver’s burned out -- What now?

Dear Dr. Camardi:

I tried, for two long years I really, really tried. And I started out so strong thinking I could do this. And I did for a while.

I was “super daughter” because nobody would lift a finger to help me. But there is just no reasoning with Mom the way she is, she’s worse than trying to raise a baby and I can’t get a minute’s peace. And I feel so guilty now because I feel I am just not doing right by her.

I thought keeping her home instead of a retirement home was the decent thing to do but I really don’t know what I’m doing .

Can I come in and see you again and talk about putting her someplace good and safe because I have to bring some money back into this house and get back to work. My family needs their mother again. I feel like a failure to my kids and my mother.

— Roanoke

Please do not be so hard on yourself and listen to me: You are not a failure.

You have more courage in trying than people I’ve seen who have never tried. And I’m willing to wager that if you had never tried, you would have been uneasy with yourself, too .

Clinically you have many of the signs of caregiver stress; I prefer to call it “caregiver burnout.” Caring for a debilitated patient is a difficult undertaking and you were without the resources and training one needs in facing such a challenge.

And let me be clear, even with all the support in the world, caring for a geriatric patient can result in less than perfect results as we all have different definitions for what constitutes “great vs. good vs. adequate” levels of care.

Mom comes under the heading of “total custodial care,” which means, as you found out, that you have to do everything for her, all the time. Where does that leave you and your family? Who will strike the balance for caring for all who need you?

The answer is, you have to. And that means you have to seek help from other family members and outside support groups. One of your key issues was that, from the start, you thought you could go it alone and I recall you said something to the effect of “How hard can it be?”

Well it is demanding, constant and frustrating, and all that makes it hard. But you had the courage and the will to try and you gave her two good years.

Now this is not to say that when we find a nursing home you like that you and Mom will not have more good years together. So look upon this as a transition period from one level of care to another. Seeking admission to a nursing home is not a commentary nor condemnation of you.

From what I recall, Mom’s dementia was quite advanced after the stroke and, with two years removed, she more than likely is less aware of her surroundings than before.

Have you spoken to your family about this? It is so very important that you do so. I know there has been some friction between you and your siblings over helping you out financially and with caring for Mom.

Well she is their mother, too, and while they may have their reasons for standing on the sidelines, they have to face their responsibly for her and consider showing some respect for you and what you have tried to do.

Let’s take a deep breath and we’ll sit down and figure all this out … one step at a time.

Dr. Michael Camardi is a geriatrician at the Carilion Center for Healthy Aging and an assistant professor of medicine of the Virginia Tech Carilion School of Medicine. His column runs monthly in Extra.

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