Belatedly Thankful

After my mother suffered her stroke, I subscribed to all kinds of forums and discussion boards aimed at caregivers.  It was definitely helpful to hear other people’s perspectives on the issues I was encountering.  I learned some valuable, practical information.  Knowing that other people struggled with the same feelings helped me tolerate the conflicting emotions I had misfiring all throughout my sympathetic nervous system.  

There was one recurring theme that kept coming up in different posts that I just couldn’t get behind, however.  So often a participant would write to encourage someone in the throes of caregiving by saying that the day would come when the caregiver would be grateful for the experience.  While I was living it, I don’t know that I could ever really say I was grateful for the experience.  It wasn’t that I thought the well-intentioned commenters on the discussion boards were lying.  The term “Pollyanna” might have come to mind.  On the whole, I accepted that those people were being honest about their own experiences and their feelings of gratitude, but their experiences just didn’t seem to apply to me.  

People said that caregivers end up triumphing over the drudgery, exhaustion, and sadness.  They said that it is common to transcend the difficulties of the long struggle so that providing care becomes easier.  I didn’t see how that could happen with me, as inept as I was.  They said that the difficulties of caregiving take a backseat to the benefits the caregiver receives, like the satisfaction of providing for a parent’s comfort.  I didn’t see myself really providing for my mother’s comfort, just witnessing her decline.  They said that a caregiver can consider any additional time with the dying parent to be a gift.  I often felt like this gift came at too high a cost to both my mother and me. They said that, no matter how painful and difficult it is to walk with a parent on this final journey, the caregiver is rewarded by a closer, more intimate and loving relationship with the parent.  I didn’t see how this could be possible with my mother and me.  Our relationship has always been closer than that of any other mother and daughter I know.   

So, all in all, I could not find much for which to be grateful while slogging through the tragedy of my mother’s last thirteen months of life.  I admit that I found the folks who posted about the “gift” of being a caregiver to be somewhat suspect.  When I read those posts, I remembered the saying, “If you can keep your head while everyone around you is losing theirs, perhaps you don’t understand the situation.”  In other words, if the posters who were touting the joys and benefits of being a caregiver were sincere, perhaps they didn’t really understand the situation.  I admit that this was probably a bit of misplaced anger on my part.  Still, I also knew that I was not finding caregiving to be a gift.  I felt that I was somehow fundamentally flawed because I couldn’t get past the pain to grasp the joy. 

Now that my mother is gone, I am beginning to understand a little better. I can look back and be grateful for the time we had together at the end of her life.  I was not a very talented caregiver, but I did learn a lot of the skills necessary.  I see that my mother did derive substantial comfort from my presence.  Yes, it was very difficult for me to observe my mother’s decline, but I do now appreciate the time I had with her in the last months.  Even though we have always been exceptionally close and our ability to communicate verbally all but disappeared in my mother’s last months, I feel our intimacy grew richer and stronger and more honest as we took this journey.  No, I never did get completely past the drudgery and exhaustion and sadness, but I do now see the gift.  The gift was loving my mother through it all and letting her love me.  Now I am thankful for it. 

Gratitude deferred is not gratitude denied.  Gratitude deferred is growth.

Have you ever had an experience that you hated while going through it, but came to appreciate it after it was over? Please join the conversation and tell us about it!  Please share your perspective by leaving a comment.  In the alternative, you can email me at  

Have a thankful day!

Terri 🙂

P.S. Special programming announcement…. I am going to be on a trip around the world (Disneyworld, that is) for a few days next week.  I’ll be posting on Thursday evening instead of Wednesday morning.  

The Stealthfulness Of Grief

Nobody tells you how sneaky grief is. 

For the first five months or so after my mom’s stroke, I rode the emotional roller coaster all the time.  It was understandable.  So much was happening and changing on an hourly basis.  Of course my emotional reactions fluctuated. 

After about five months, my mother’s condition plateaued.  She was not improving, but neither was she undergoing stressful medical procedures.  I got her settled in the nursing facility.  I resolved the financial side of things.  I sold her mobile home. Once her status quo seemed to be pretty stable, I thought I might be able to begin to stabilize myself and start learning to cope with my own feelings. 

For the most part, I thought I was doing pretty well.  I was figuring out how to accept the new reality. I was even starting to carve out a “mini life” for myself.  I was regularly spending some time without being engulfed in my mother’s condition and care.  None of it was easy.  I certainly can’t say I was truly “okay,” but I felt I was gradually repairing my shattered psyche.  Both my mother and I seem to be living in the now with a little more good grace and good cheer.  Our relationship is certainly not what it was in the pre-stroke days, but we are starting to find our footing in our new one.  We both seem to be recognizing each other again and are acting more like ourselves.  Things are far from “okay,” but, for right now, they are better than I can expect.  So there is every reason for me to put on my big girl panties and get on with life.   

Still, every now and again, I am just floored by sadness.  There isn’t even necessarily a reason or a trigger I can identify.  I’m fine…  and then I’m not.   

The other day, I was walking up to the door of the nursing facility.  I was carrying my purse, a case containing a portable DVD player that I bring to show my mom home movies, and a milkshake.  I don’t quite know how it happened, but I tripped on a warped place in the pavement. I might have been trying a new technique for long-jumping, except that I think you are supposed to land on your butt when long jumping, not forward onto your face.   It was as if I really believed I was Tinker Bell and had sprouted wings.  News flash- I had not.  

Luckily, I didn’t really hurt myself.  As I lay on the sidewalk, stunned, all I could think about was the milkshake that was now spilled all over the cement and the DVD player that might have been much more disabled by the fall than I was.  For some reason, that milkshake spill just demoralized me beyond almost anything I’ve experienced in life.  I felt so defeated that I kind of just wanted to lie there and hope the world would end.  It was a weird sensation of knowing that I was reacting beyond all rational thought but not caring.   

I knew the reaction wasn’t really about the milkshake.  It wasn’t about the DVD player (which, remarkably, was unharmed by its flight).  It wasn’t even about the fall.  It was the same old grief and stress that I thought I was conquering.  The reaction was about the fact that my mother is so compromised and I can’t fix it.  I thought I was coming to terms with that reality, but the sadness came crashing back out of nowhere.   

A very nice gardener guy helped me to my feet.  I stared at the mess I had left in my wake.  The gardener guy asked if I was all right and I said, “yes, but the milkshake is all over the ground and it is ruined.  Besides, there will be bees and people might slip on it.”  The gardener guy looked at me strangely and mumbled some sort of embarrassed response.  Still a little in shock, I made my way into the facility and into my mother’s room, where I greeted her sans milkshake.  I burst into tears when I saw her, apologizing profusely for the lack of ice cream.  I think I kind of alarmed her.  She kept telling me to go home but I wouldn’t.  I didn’t want the fall to win.   

When I did leave the nursing home, still feeling unspeakably sad, I noticed the milkshake mess was mysteriously gone.  I am sure that my nice gardener guy cleaned it up for me.  Thank you, nice gardener guy.   

I read somewhere that sometimes you don’t have to get over things; you just have to get through them.  Maybe the “getting through them” isn’t always by a straight path. 

Has grief ever “snuck up” on you?  How do you cope?  Please share your perspective by leaving a comment.  In the alternative, you can email me at

Have a thoughtful day!

Terri 🙂

The New Normal

When I was working, I participated in a training program designed to develop my potential for a middle-management position.  The course consisted of three sessions of one week each.  In between the sessions, we had homework to complete in the time until we reconvened.  At the end of the second session, the instructors explained that our third session would include a long (a whopping understatement- as it turned out, the word “interminable” was more accurate) simulation of a real business problem. The exercise would require us to prioritize needs and create a budget to run the entire agency in an environment of limited resources and continuing budget cuts. The instructors told us that, as part of the simulation, we would have to deal with constantly changing conditions and would have to present our decisions to a team of executives.  The executives’ role would be to pick apart our budgets and make us defend them.

To make the challenge more difficult, the instructors assigned each student a role to play in the exercise.  We would each have to play the part of an executive from an agency department with which we had no experience.  In the time before we came back to class, we were supposed to research our roles, figure out the interests and priorities of the person who actually held the position we were assigned, and be prepared to explain the inner workings of the department of which we had just become the executive.

During the months between the second and third session, I became a manic fact-gatherer.  I knew virtually nothing about my assigned department.  I scoured the internet for information about my role.  I tried to talk to people who actually worked in the department that I was going to “fake lead.” To be honest, I actually understood only about every third word that I read about the new department.  To say the least, my comprehension was a bit compromised.  Still, I kept printing things out and trying to organize the information in a way that made sense.  I built large three-ring binders of printed information.  I hoped that I was combining the bits and pieces of data that I did understand into a coherent overall general understanding of the department’s priorities and mission.

I arrived at class pulling a rolling suitcase behind me.  The suitcase contained the binders of pages printed off the internet, email traffic between me and employees of the actual department in question, and my own notes and analysis. I was a sitting duck.  As soon as I walked through the door armed with my suitcase, the instructors immediately re-assigned me to another position in a completely different department.  Other than killing a lot of trees and building my muscles lifting all that paper, my research was pretty useless.

The instructors were trying to teach me that I tend to rely too much on planning and preparation.  They wanted me to learn to develop my quick-thinking and adaptability skills.  I completely agree with their assessment of my obsessive-compulsive planning tendencies.  I also agree that the lesson they wanted to teach me is a valid life lesson.

However, I don’t learn that easily.  In the weeks since my mother’s stroke, the memory of this episode has come careening back to the front of my mind.  It almost seems like I am living through the whole thing again.

All day and most of the night, I strategize about how to help my mother, how to advocate for her, and how to provide a comfortable future for her.  I run errands.  I talk to experts.  I google so much my brain hurts.  Just when I think I’ve got a good enough plan to tame the tigers of uncertainty in my gut, I start the day and something happens that makes all that planning pretty much moot.  It is as if God sees me hauling my rolling suitcase of information and plans, gently unclasps my hand from the handle, and puts me in a different situation where all that wonderful research I’ve accumulated is completely useless. Instead of shrugging and just dealing with whatever the new situation is, I find myself heading headlong into another flurry of research and preparation.  I think I must have the hardest head ever.

I am still not real good at living in the moment and I’m really bad at living in the particular moments I’m experiencing right now.  I think I’ve been kind of waiting for the “new normal” to begin.  I know that I have to find some way to live some semblance of my own life in order to stay sane for myself and stay strong for my mother. However, I keep thinking that I will be able to gradually disengage somewhat from the “stroke world” where I visit my mother every day and work with her on therapy and do the administrative work necessary to provide for her life.

The thing is- I keep waiting for some milestone of recovery to jump start that gradual disengagement process.  I’m not sure exactly what I expect that moment to look like. I am thinking of milestones such as regaining enough speech to truly be able to express her opinion of activities concerning her, moving into her eventual home in assisted living, or having no reason to expect that she will go back to the hospital in the forseeable future.  Maybe that milestone is even just having several days of progress in a row. Maybe one of the reasons that I am so tired (aside from the manic midnight internet research, I mean) is that I’ve been holding my breath waiting for that magical “new normal.”

It strikes me now that maybe this is the “new normal.”  Maybe the “new normal” is not stability.  Maybe the “new normal” is a series of amorphous, disorderly days from which I cannot expect anything specific.

Despite the vagaries of this version of “new normal,” I do try to schedule time for myself.  I’m just not very good at it.  Something always seems to get in the way. I feel like a dog wearing one of those electronic fence collars.  As soon as I start nosing around the perimeter of “stroke world,” I get a shock that sends me scurrying back well within the boundaries.  I had to cancel a trip to California because the stroke was so fresh and rehab so new.  We had an overnight trip to Disney scheduled and I was going to avoid the hospital for the entire day we left.  I ended up having to go to the hospital because it was the only day the paralegal could come to get the Power of Attorneys signed…. And then she didn’t show up.  I had a reservation, made months and months ago, to spend a day at a local day resort to swim with the dolphins.  I cancelled it because the hospital suddenly scheduled surgery on my mother’s leg for the day of my reservation.

For the first two months after my mother’s episode, I went to the hospital or rehab facility every single day while also trying to handle the administrative stuff of her life and keep my own household running, too.  I kept thinking that I must find ways of doing things for myself, but rarely put those thoughts into action beyond meeting my most basic needs.  I needed a day off from “stroke world”-  a day when I didn’t have to watch my mom struggle in the hospital or rehab facility, when I didn’t have to chase down medical professionals to share information, when I didn’t have to consider different strategies for paying for care, when I didn’t have to enact administrative procedures to manage my mom’s life.  After two months of going to the hospital or rehab facility every day, I craved a “day off” from “stroke world.”

When Hurricane Matthew threatened to stuff Central Florida into a blender and hit the “liquefy” button, I finally spent a whole day without visiting my mother at the rehab facility.  As it turned out, Matthew’s impact was pretty minor in our neck of the woods. There probably was no reason for me to not go to the rehab facility.  Still, even a girl raised in Southern California knows enough to question the wisdom of going out in the rain… especially when the rain has an actual name.  I was glad I did stay home, if only to show myself that I carry no magic talisman with me when I visit my mother that will ensure her health and safety.  She was just fine without me for a day.

Since then, I have taken one day each week to not go to the rehab facility.  Max and I went to Disney Springs one day, Epcot one day, and to the Lowry Park Zoo one day.  I think it has helped, although I am still learning to manage the discomfort I feel about leaving and the dread of what I will find when I go back.  Overall, these excursions do help me wring out my stress-addled brain so I can start fresh.  Still, it is a bit of a conundrum.  While I want these “days off” so badly I can taste it, it feels disloyal.  After all, my mom doesn’t get to take a day off from “stroke world.”

I know that it is irrational.  I know that I can’t decrease my mother’s anxiety and misery by feeling anxious and miserable myself.  I know that there isn’t much I can do to decrease her discomfort and frustration in seven days that I can’t do in five or six.  I know that my mother would want me to have a separate life.

I know all these things in my head.  But not so much in my heart.

So how do you deal with a “normal” that isn’t?  What pointers can you give me?  Please share your perspective by leaving a comment.  In the alternative, you can email me at 

Have a “nicer than normal” day!