Life After Caregiving

There is life after caregiving. As much as we love those who are close to us and want to make them as comfortable as possible during the last years of their lives, once they've moved on, we need to grieve, let go, and reenter our lives.

I spent more than seven years caring for my elderly parents as POA and health care proxy, and it's taken me more than a year to begin to reclaim myself and my life. I hope that this blog is helpful to those who are or have been caregivers.

Blog Posts:
Caregiver Guilt…and All That Jazz
No, Really, We're Fine
Dream Healing
Father's Day
End-of-Life Service
The Last Visit
Taking Care of Yourself
No More Emergencies: An article I wrote for Fiftyshift.com

Caregiver Guilt…and All That Jazz
You feel like you just can’t do enough for your 84-year-old mother.

Monday, it’s a new medication. You stop on the way home from work to pick up the prescription.

Tuesday, there’s a new symptom. You call the doctor to schedule an appointment.

Wednesday, your mother is depressed and keeps you on the phone for an hour, needing your support.

Thursday is the appointment to get a new pair of eyeglasses, because she’s not seeing very well lately.

Friday, she falls and sprains her wrist. Does it ever end?

As much as you (probably) love your parent and want to do everything you can for him or her, the fact is that elderly people need a lot of care, and if you try to take care of all their needs yourself, you risk running your own health into the ground.

When I was caregiving for my parents, my biggest problem was guilt. Even though I took care of every need I possibly could, it still felt like it wasn’t enough. That’s because I couldn’t reverse the aging process for them – I couldn’t make their joints work like new, I couldn’t give them back the foods they used to love and couldn’t eat any longer, I couldn’t give them back the energy or the positive outlook they’d had when they were younger. I couldn’t assuage the sorrow that losing health and vitality inevitably brings to the aging.

But I finally realized that my guilt was counter-productive. It doubled the weight I was carrying. I couldn’t change the reality of my parents’ aging, and there was only so much I could do for them.

Guilt is really just a habit. I decided to develop a counter-habit of reminding myself (and it took concentrated practice) that my guilt wasn’t doing anybody any good, that it wasn’t helping the situation, and that I didn’t need to go there. I finally broke the guilt habit. And when I got most of it out of the way, I found I could respond more from my heart instead of my head.

Moving beyond guilt actually makes a better caregiver, and helps the caregiver take better care of self. November is National Caregivers Month. Do yourself a favor and get some help and support during this difficult time. Check out some tips for caregivers and start taking care of yourself. It doesn’t mean you’re neglecting your responsibilities. And it may even help you be a better caregiver.

No, Really, We're Fine
Last week, a friend of mine lost her uncle. He was in his eighties, and she’s been the sole caregiver for him for the last six years. Though he was fairly functional up ‘til the end, a lot of her time, energy, and attention went to make sure he was getting his needs met – doing his grocery shopping, picking up prescriptions, visiting at least once a day to make sure he was okay.

When he went into the hospital a few days before he passed away, he kept saying, “Everything is fine. I’m ready to go back home,” even though he had been complaining to my friend for years about how bad things were, and he was obviously very near the end.

It reminded me of my mother, who years ago when she was in her eighties, complained constantly that she needed help with the house, the chores, the grocery shopping, everything. I couldn’t help because I lived more than 1,000 miles away, so I suggested contacting an elder agency for help. She thought it was a great idea.

Imagine my surprise when I took my parents to the agency on one of my visits, and my mother told the intake counselor, “Everything is just fine. We don’t have any problems. We don’t need any help.” She just couldn’t be vulnerable with someone outside the family. Shortly after that, my parents moved into assisted living.

The current generation of elderly people was brought up to be completely self-sufficient, relying on family whenever help was needed. So that’s the public façade they present, even when they feel life is falling down around them. Though they seem extremely needy to family members, they deny to the world at large that they need help, and this can be very confusing for caregivers.

Often, this is the first time that a caregiver needs to overrule a parent’s wishes. If the caregiver cannot provide for the family member’s care, he or she needs to find an agency that can. Every state has some form of elder care assistance, and a caregiver need not feel guilty for taking advantage of them – that’s what they’re there for.

It’s extremely important for caregivers to keep their own needs in mind, to care for themselves as well as their elders. I’ve been there, and I can tell you, if you don’t take care of yourself, your own health can suffer terribly. My friend landed in the hospital a few weeks ago, totally burned out from having to care for her uncle on top of making a living and keeping her own life together.

You are just as important as the person you’re caregiving for. Get some help before the burden becomes overwhelming.

Dream Healing
It’s been fourteen months since my father passed away. I dreamed recently that he had been living with me, though I never saw him. I only knew he was living in my space because I saw his shoes, and the newspaper was always open to his favorite page: the financials. His presence permeated every corner of my living space. It was as if he had always lived with me.

In the dream, one day I came home, and he was gone. All of his things had been removed, and his presence had evaporated. I woke with the realization that I had carried him in my psyche for a long time, and that I’d finally achieved enough peace about the difficulties of his last years that I could let him go.

The dream helped me to realize that I need to let go of my identity as caregiver. For over seven years, my caregiving experience was so engulfing that I sort of forgot that it’s not an integral part of who I am.

Feelings that I had to repress while I was caregiving have surfaced in the last year: leftover frustration at not being able to relieve my parents’ suffering, resentment at how much of my own life I had to put aside, and sadness at the impending loss and the general difficulties of aging and the death process. I wasn’t able to express these feelings while I was caring for my parents, and they’ve been bubbling up, wanting to be released. It’s a comfort to finally have the time and attention to let go of it all.

An experience as profound as long-term caregiving doesn’t just dissolve when it’s over so that everything can go back to normal. There are feelings to process, and sometimes it takes a conscious decision to let go of it all and move on.

The dream helped me to release the energy of emotions that have been pent up for many years, and begin to move on. It’s about time I started to look forward to the rest of my life.

Father’s Day
I’m reminded of the time I spent going through my father’s effects after his death last fall, still feeling really guilty that I probably hadn’t done as much for him in the last years of his life as I should have.

I open one of his desk drawers and discover piles of cards – Father’s Day cards, birthday cards, Christmas and Easter and Thanksgiving and Halloween cards – that I sent to him when I wasn’t visiting. In looking at those cards, all the things I did do for him suddenly come to the front of my mind. Along with the cards, there were many phone calls, packages of gifts, even calls to the nursing home staff to get an objective view of how he was doing when I needed some perspective.

I imagine him opening the drawer full of cards when he felt lonely or needed a lift. The guilt lessens as I notice in the cards the presence of my caring for him over time, of letting him know again and again that I thought about him, that I loved him, and that he had a special place in my life, even if I wasn’t by his side.

I remind myself that even if I felt like I wasn't doing enough, I did the best I could, and I made a real difference in his life.

End-of-Life Service
I got the call on a Sunday afternoon in April, 2005. “You’d better come,” the director of the nursing home told me. At 89, my mother had been diagnosed with ovarian cancer six weeks earlier, and she also had heart problems. The director indicated that she was showing signs of getting ready to go.

I flew to Illinois the next morning, and my mother sat up in bed when I walked into the room, but she was clearly not in very good shape: restless, anxious, unable to settle. Over the next 24 hours, I spent as much time as I could with her, talking, comforting, praying.

The following afternoon, the minister at the nursing home suggested to my father and me that she’d like to perform an End-of-Life service, the Protestant version of last rites. We agreed, and an hour later we gathered in my mother’s room. The service was simple but beautiful, offering thanks for my mother’s life and prayers for her journey. What I remember most is a section where the minister told her that we could walk with her to the gates of heaven, but no further. My mother kept saying, “It’s so beautiful.” Her voice and her body were peaceful for the first time since I’d arrived. The service provided a superb container through which we could all acknowledge our feelings and say goodbye. My mother passed away very early the next morning, totally at peace.

I highly recommend some kind of End-of-Life service when the time comes. It offered all of us, each in our own way, the opportunity to come to terms with the fact that my mother would be journeying to a new life and that my father and I might continue on, but that as a family, we were no longer a unit. It allowed my father and me to separate from my mother and let her go, and I think it gave her the permission she needed to leave us and move on to the next stage of her journey. Most importantly for me, it provided a tremendous sense of closure not only for my relationship with her, but for the long and difficult process of her aging and death, a process which we had shared for many years.

Family ties can be incredibly strong. Formalizing the natural occurrence of death in some way can give permission to the dying to let go, and permission to the living to go on with their lives.

Please let me go when it's my time, don't keep me here to suffer just because a pill will keep my heart going or unclog my arteries. When I'm old enough and there's nothing more to look forward to, I want to move on.