Tag Archives: Alzheimer’s caregiver guilt

FACING THE DARK EMOTIONS OF CAREGIVING

EMOTION.jpgI want to share Joy Johnston’s recent post COPING WITH THE DIFFICULT EMOTIONS OF CAREGIVING on her site The Memories Project and also try to answer the question Joy raises.

Joy writes:

“Caregiving is a tough task, both physically and emotionally. There are many emotions that can arise while one is a caregiver, and many are not pleasant. However, it is important to recognize, acknowledge and process these feelings. Caring.com offers an excellent article, The 7 Deadly Emotions of Caregiving: How to Cope

The 7 emotions the article focuses on includes:

  • Guilt
  • Resentment
  • Anger
  • Worry
  • Loneliness
  • Grief
  • Defensiveness

The article explains how these emotions arise while caregiving, the risks that come with these feelings and most importantly, what you can do about it. Many caregivers will find the above list familiar; some of us will experience one emotion more than another. For my mother, it was loneliness and worry; for me, it was worry, guilt and resentment.

I think it is important as caregivers to acknowledge what we feel, and equally as important to figure out how to best process these emotions so we don’t damage our own physical and mental well-being.

What caregiving emotions do you feel most consumed by, and how do you cope?”

Most consumed by? Hmmm.

Guilt is always with me, because I am so frequently full of Resentment, Anger and Defensiveness, the terrible trio that I fight constantly if often unsuccessfully. Worry, too, because it is generally tied closely to Guilt, Resentment, Anger and Defensiveness. I find it impossible to eliminate or even order my priority of emotions. Loneliness is strongest when I am beside Ralph unable to share in the communication on which our relationship was built. Grief seems a bit strong, overblown and pretentious for what I feel since others have much more to grieve about. But maybe if I’m honest I work to repress the primal strength of grief because typing this sentence a black wave of emotion washes over me, emotion I do not want to feel.

Of course we are all dealing with these emotions in one way or another everyday in small and large moments. But looking at them as a whole has given me a sense of perspective I can easily lose or at least forget.

 

(P.S. Thanks again Joy, for allowing me to share and for asking the question.)

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Caregiver Brain Drain

 

 

cloudy.jpgLast week I wrote about Ralph’s concern over his IQ dropping.

This week, I’m worrying about my own brain. I walked this morning with a friend who has done a lot of caregiving herself in the last two years, though not for Alzheimer’s or dementia. As we chatted about responsibilities, etc., she admitted with a laugh that she was feeling less smart these days. I almost hugged her in relief. “Me too, me too, me too.”

She blames being exhausted.

And that is part of it.

But, in my case at least, there’s more than physical tiredness at work. (Of course, after typing those words, I felt a huge urge to close my eyes for a just an itty-bitty nap.) It’s a kind of emotional depletion.

Since returning from my semi-hiatus in GrandBabyLand, I have had some trouble re-adjusting to the reality of full-time life in Memoryland. Ralph’s memory and what he calls fogginess may or may not have worsened, but I am finding it harder to navigate.

I know perfectly well and remind myself regularly that our situation could be a lot worse. He is physically healthy and still more than able to care for himself. His memory is shot but he still knows his place in the world and can “pass” as normal much of the time. He is not angry or depressed. When I read about others in much more difficult situations, my heart goes out to them. My impatience with Ralph’s inability to carry on a conversation about some issue that I happen to be fired up about, my annoyance when I’m stuck with some chore he used to do, these are obviously petty problems in comparison.

And yet. And yet. Thinking for two is draining. Always putting his needs first is draining. And allowing myself to share/embrace the less demanding mindset/lifestyle he requires is not draining, but way too easy.

Am I mentally tired or mentally lazy? Probably a little of both. Spending as much time as I do with Ralph, repeating and explaining, making sure his life runs as smoothly as possible, acting as a buffer between him and his anxieties, wears me out. But there is also something lulling about the undemanding simplicity of the life he prefers and which I increasingly share. It is tempting to limit my focus on our meals, our pets, the weather, small housekeeping issues, and the novels we both love to read. (I spent the last few days, in fact, re-reading Trollope’s Barchester Towers, to escape the upside-down political realities and to refresh myself enough to write here.)

But carrying out tasks, and even taking on new ones like volunteering, is not really the real problem. “Chop Wood Carry Water” and all. More difficult these days is thinking. Anxiety affects my logical and organizational thinking now that I am making decisions for Ralph as well as myself, particularly in areas where he used to excel like financial and future planning decisions—decisions I frankly don’t much want to make or think about at all. Nevertheless I know I handle them competently enough to get us by. What I am not doing is creative thinking. I don’t seem to have room in my brain. And so far at least, “Chop Wood, Carry Water” has not cleared the way.

If I am honest, what has paralyzed, or at least enervated me is a growing fear of what the future holds. For years now, I embraced the present, the plateau I have written about here. I didn’t let myself think about the future. That future is harder and harder to ignore. I see the small signs and I begin to envision the possibilities. Not only the realities of Ralph’s eventual mental and physical downward slide, of the eventual need to face moving, but of my own eventual diminishment. It is incredibly frightening.

Yet, the flip side is that in facing my terror I also receive the gift of empathy, because I can’t help realizing this terror is what Ralph faces every minute of every day. And that recognition gives me a greater capacity to appreciate him and our life together.

Which is a good thing since we are about to drive alone together for the next six hours…..

Our OLD YELLER Moment

 

old-yeller

Our dog Zeus had a bit of excitement last week. I was driving to the grocery store when Ralph called and announced that Zeus had been in combat with a wild boar, or at least a feral pig, or maybe a domestic hog that got loose. Whatever it was—Ralph said it had black hair and weighed a lot more than Zeus—must have drawn the dogs’ attention while they were in the yard outside Ralph’s workroom. Ralph said he heard a ruckus and found Ralph in a dried gulley with his teeth in the pig/boar’s neck and the pig/boar trying to get at Zeus. Somehow Ralph managed to separate them and the pig/boar ran off. (If you are thinking, ohmyGod, Ralph could have been badly hurt himself, I know I know but can’t dwell on it or I’ll go nuts.)

I could tell Ralph was upset and excited at the same time, basically on the adrenaline high anyone would experience under the circumstances, and he seemed surprisingly in control of the situation. He said he’d cleaned up Zeus who didn’t seem to have been hurt. By the time I got home with the groceries man and dog were already asleep and I assumed fine.

However the next morning, Zeus was definitely limping when I let him out for a pee. I had an appointment I couldn’t cancel and left soon after, having warned Ralph to check Zeus more thoroughly. Ralph called me half an hour later to say he’d found a gash near Zeus’s belly that he hadn’t noticed. By then I was driving through pouring rain, and my phone was barely working, so Ralph was pretty much on his own.

Although I directed him where to find the vet’s phone number on the fridge, Ralph called on his own, made an appointment and took the dog in by himself: In the poring rain. To the vet’s office that’s not on his usual driving radar.

When he called back to say that Zeus was scheduled for surgery and would be staying the night, he sounded definitely in control of the situation.

I was impressed. Guilty that I had not paid more attention to the situation. But mostly impressed, thinking that maybe I shouldn’t underestimate Ralph, that I need to recognize he is still up to handling a crisis.

Of course in the morning I did have to remind him where Zeus was and why. And luckily I was in the room when the vet called because afterwards Ralph wasn’t sure what the vet had just told him. I called back to give the vet office my number for future reference, they explained they wanted to keep Zeus an extra day. (Zeus is now something of a vet celebrity by the way, our own local Old Yeller, especially after they pulled coarse black hairs out of his mouth where Zeus lost a fang from biting down so hard.) Still, I was feeling really good about Ralph’s competence when we picked up Zeus and brought him home.

But here’s where things get sticky. The meds, morning and evening pills, I can deal with myself, but keeping Zeus inside, per the vet’s instructions, has depended on Ralph’s help. And this he seems incapable of remembering, any more than he can remember that the wound is on Ralph’s thigh not his stomach. Each time I catch Ralph and the dog outside, I go through the routine of reminding and explaining Zeus’s injury, his treatment and that he is supposed to be inside until the stitches heal. This recovery process is driving me crazy of course.

Gotta go make sure Zeus is in the house……

RALPH LOVES TO TALK BUT… PHONE COMMUNICATION WITH THE KIDS

PHONE

The big issues connected to Alzheimer’s and dementia are almost too hard for me to grasp at this point despite the never-ending stream of factual information pouring off the internet and in the media. It is the small moments that capture what it means to live with memory loss.  For instance:

When I get home in a grumpy mood after driving my daughter through rush hour traffic to catch a plane, Ralph is in his usual spot, the front porch rocking chair, with cell phone to his ear. I head inside without stopping to ask whom he’s talking to.

After all, Ralph has his regulars: one loyal friend who checks in weekly, his sister, and the oldest of our three kids.

He talks to his sister almost every day. Both have a lot of time on their hands. Often they can talk for over an hour. Whenever I ask what they talk about, Ralph shrugs. “Small talk.”

He talks to our oldest son almost every day. If Ralph is laughing, but again, I assume it’s Josh, but again when I ask what they’ve been talking about, Ralph says “Small Talk.”

Our much younger two kids love their dad but they are of the text not talk generation. Their phone conversation with their dad are fewer and farther between.

So I was surprised when Ralph came inside and said he’d been talking to our younger son Jacob.

Surprised and pleased until Ralph added, “I called him but he didn’t seem to want to talk. It was a short conversation. I don’t think he likes me. Was I a bad father?”

This is no excuse, but I was hot and tired when I answered with the truth. “Not exactly but not always very nice. You weren’t very supportive.”

Ralph gave me a heartbreaking hangdog smile. “I wish you hadn’t told me.”

“But you asked.” (I know, I know, I could kick myself.)

“You should have lied.”

By then I was already desperately texting with Jacob: Dad said he called but you didn’t seem to want to talk. / Really??? It didn’t seem that way to me but ok / I made it worse because I said he was kind of mean / LOL

Jacob immediately texted Ralph saying he hoped he didn’t sound “out of it” but he’d just  come in after riding his new bike home from work. Evidently they had talked at length about the bike during their not hour-long but not short conversation.

Of course, then I had to figure out to get Ralph to find the text since he never checks for texts on his fliptop unsmart phone.

I waited about twenty minutes, said my phone was dead, asked him to check his because I was expecting a message from our daughter to let us know if she made her flight. He said he didn’t know how. We looked together.

“No message from her, but look there’s one from Jacob,” I said casually and read it to him out loud.

“Why would he send that?”

“I don’t know. Didn’t you talk today.”

“Maybe so. I don’t remember. But this was nice of him.”

Guilt, angst, manipulation, all for nothing maybe. Or maybe not. Ralph went to bed smiling.