Oliver: What can we do if we feel that we aren’t doing enough as a caregiver?

So much of caregiving, at least for me, is managing emotions and expectations.

My husband, Tony, doesn’t require heavy lifting yet. Despite his early-onset Alzheimer’s disease, he can get himself from point A to point B without me having to push, lift or carry him.

A day will come when I will have to add lifting skills to my repertoire. Still, we aren’t there yet.

Now, most of my job is supervision and handling every day-to-day matter for our family. That, and cajoling an uncooperative person to get with our daily program.

It’s not physically taxing so much as it is emotionally and mentally draining.

Each day brings us closer to the inevitable, when Tony’s disease will claim his life. That realization is something I must manage, so often pushing it aside to focus on what needs to be done on that day. I don’t ignore it entirely; I just don’t allow it to dominate my thoughts. We aren’t there yet.

Then there are the times when I must cope with my own inadequacies as a caregiver. If I’m tired or not feeling well, it can be difficult to stay positive and exhibit the patience I know I should have.

Hard as I try, I sometimes find myself feeling guilty.

I experienced a lot of that when I was caring for my mother, who had vascular dementia.

I found myself struggling to deal with all the quirks of her illness. Add to that a strained mother-daughter relationship, and it often resulted in failures to communicate and the feeling that I was in over my head.

Oh, and what guilt I felt about the day she fell and broke her thigh bone. It directly led to her death days later. Why couldn’t I have prevented that? How could I have let her down?

All these feelings are what’s known as caregiver guilt. An article from the Family Caregiver Alliance mentions a few more: Guilt over feeling like you want the caregiving to end. Guilt over having been impatient too much with your care receiver. Guilt over not loving or even liking the care receiver at times. Guilt over not doing enough or not doing a good enough job. And guilt over thinking about one’s own needs and seeing that as being selfish.

That’s where managing one’s expectations and emotions comes in.

One thing that Tony and I did early on was to put a name to Tony’s illness so that we both could point to it as the cause of our frustration. We named his Alzheimer’s disease “Fred.” I wasn’t mad at Tony; I was mad at Fred. If Tony got frustrated with himself, we could redirect it and blame Fred.

These days, when my dear Tony is acting less like himself, it’s a good reminder that Fred is the cause of the aggressive behavior. Tony can’t help it.

A blog post about caregiver guilt from the Alzheimer’s Association points out that frustration, anger and guilt are all normal emotional responses. There isn’t something wrong with us if we have these feelings, nor do they make us terrible caregivers.

However, we caregivers need to address these feelings. The Family Caregivers Alliance recommends forgiving ourselves because we can’t be perfect 24/7. We aren’t going to be in perfect control of our emotions all the time.

The Alzheimer’s Association recommends getting support and learning as much as we can about the disease stage our loved one is in. Support groups can offer tips and coping strategies.

Another tip, and one I employ, is to live in the day. Focus on the positives, and if you don’t see them, go looking for them. Even the hardest days have them.

It’s hard to let go of unrealistic expectations. However, it’s something to work on.

We’re going to make mistakes. Let’s learn from them.

We’re going to have bad days. Let’s remember that tomorrow is a chance to do better.

No doubt we’re doing the best we can. And that’s all anyone – ourselves included – can ask of us.

• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.