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 terriretirement@gmail.com.

Have a thoughtful day!

Terri 🙂

The Worst Day Of My Life

The single thing that I’ve dreaded most since my mother’s stroke has come to pass.  We transferred her to a skilled nursing facility.

I thought I was prepared for having her in the nursing home, but I completely fell apart.  The feelings of guilt, shame, and defeat about not being able to care for her at home just overwhelmed me.  After nearly four months of struggling through, I was right back to the worst case scenario we were trying desperately to avoid right after she had the stroke.

After migrating between the rehab and the hospital several times and, finally, going to a hospice house, it seemed that death was not imminent for my mother.  It was also clear that she really was not going to get better. Truthfully, she has been declining since her first rehospitalization after the stroke.  She did pretty well in rehab the first month after the attack, but appeared to start on a downhill road when she went back into the hospital for some auxiliary issues.  That road included several moves between the hospital and rehab facility.  That road was pitted with many physical, emotional, and mental obstacles.  While the doctors were able to stabilize the physical obstacles, her ability to process thoughts and communicate seemed to be fading away.

It appears that she continues to suffer from stroke-related language and cognitive impairment.  This is fairly common in stroke patients and, given my mother’s particular set of circumstances, it is likely that it will get worse over time.  It is similar to Alzheimer’s Disease, except that the cause and progression of the condition are different.  The condition can cause death, but usually the patient passes from something else first.

By the time she went to the hospice house, the medical staff believed that the combination of the obstacles she was fighting would prove to be too massive for her to overcome.  They believed it was likely that she would pass within a few days or weeks.  However, something clicked in my mom’s brain, and she started to adjust to her condition.  The hospice staff changed the prognosis.  They still believe her condition is terminal and they are still going to provide supportive care, but they no longer believe she is in her last days.  Because the actual hospice house is only intended for patients in the last stages of death whose symptoms cannot be managed in a “regular” (home, nursing home, assisted living, etc.) setting, the staff reluctantly advised me that it was time to find a longer-term residence for her.

Before she went to the hospice house, I worked with staff from what I call an “assisted living plus” facility.  It is an assisted living facility with additional medical certifications that allow them to provide a higher level of care than most places.  For most of my mother’s illness, our goal had been to get her strong enough to be able to live there.  It seemed an ideal answer. It would be like she was living in a little apartment of her own, with privacy and as much independence as she wanted and could manage.  Unfortunately, by the time she was facing release from the hospital for the last time, the assisted living facility staff evaluated her status and found that her needs were just too far beyond what even they could handle.

Kicking and screaming, I started looking at skilled nursing facilities.  This is a tricky matter for many reasons, but one of the most difficult to manage is the fact that many nursing facilities operate at full capacity. They have lengthy waiting lists.  In evaluating the residences, I had to balance quality ratings from Medicare, online reviews, my own observations on visits, availability, and proximity to my home.  Of course, the facilities with the highest ratings were also the ones with the lowest availability.  I ultimately picked one that seemed okay, had reasonably good ratings and reviews, and had availability.  An added bonus was that the facility is very close to my home.

When I checked on my mother once she was at the new place, she seemed okay… calm and content.  I was far from okay.  The residence was not bright and shiny and new.  The neighborhood wasn’t affluent.  At times, I could hear other residents crying and yelling.  Some of the other patients were holding stuffed toys or baby dolls, clearly convinced that these objects were real.  I’ve always said that, wherever my mom ended up, I hoped she would have a quality of life approximating or at least reflecting what her life was about when she was living it fully.  I wanted her to be in a setting that would help her form a social network with people who could become friends.  I didn’t want her to be the most able person and be surrounded by people living shadow lives.  I thought that would depress her and lead her down the same shaky path.  Now, I was leaving her in a place where she was living with people in just the situation I dreaded.  Unfortunately, the gut-crusher is that she became one of those people before she ever got to the nursing facility. In fact, I’ve learned that it isn’t so much that people who live in nursing homes have a severely reduced quality of life.  It is more the reverse.  People who have a severely reduced quality of life move to nursing homes.

Paradoxically, part of the sadness and guilt over placing my mother in the nursing home comes from the fact that my mother’s cognitive and language skills seemed to improve somewhat over the past couple of days before the move. Originally, I didn’t feel quite so bad about the nursing home because my mother seemed to be withdrawing from the external world- not being very communicative or alert.  Everything I read about hospice talked about this withdrawal as being typical when people approach the end of life. The way she was withdrawing and sleeping so much, it didn’t seem to matter too much where she was.  As long as it was clean and safe and met her basic needs and I was there frequently, I didn’t think it was going to make much difference to her.  Then, just as the hospice people were getting ready to transfer her to a nursing home, she started consuming a bit more fluid and nourishment, staying awake much more of the time, and talking more clearly about more sophisticated ideas than she had since the stroke.  I was almost sorry because it made the move to the nursing home seem worse.

Still, as time goes on, I am encouraged.  My mother is truly only experiencing the tiniest sliver of the quality of life she enjoyed before the stroke.  However, she continues to seem content, comfortable, and reasonably happy at the nursing home. Her cognitive and language skills are spotty, but I appreciate that there have been times when I’ve been able to communicate with a person who really did seem like my mom again. Because the nursing home is the longer term living situation, a lot of things are easier… both for my mother and for me.  The health care professionals are very responsive and practical.  The administrative side of the operation has been helpful and understanding.  Between the nursing home staff and the hospice folks that work with them, they are finding ways to make my mom’s life more comfortable.  They spend time with her.  They talk with her.  They are truly caring.  On the other hand, they respect her wishes and don’t bother her by pushing her to do things she doesn’t want to do.

Maybe the most important factor in my journey towards acceptance of this new reality is that my role as caretaker is changing now.  Since the medical staff is pretty much on the same page as my mother and me as to the type of care she wants, I have to fight fewer battles as her advocate.  Since she is now where she is going to be for whatever time God has left for her in this world, I don’t have to keep analyzing different residential options.  I’ve retained a law firm to help me with the financial burden and I’m working through the administrative issues more methodically, so I find I am spending less time and energy on those problems.  My caregiving is now much more about just being with my mom, showing her I love her, and letting her love me.

Since my mother has been in the skilled nursing facility, I get to be just a daughter again.  That has been the best unexpected positive result…. Of the worst day of my life.

My mother has been in the skilled nursing facility for about two months now.  All things considered, everything is going okay.  My mom seems reasonably chipper and content.  I am with her at least six days a week.  I can’t completely shake the sadness and guilt, but I’m holding it at bay most of the time.  My current challenge is finding new ways to communicate and engage her as her language disappears and her thinking becomes more muddled.  Anyone have any ideas for me?  I’d appreciate any suggestions!  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com.

Have a loving 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 terriretirement@gmail.com. 

Have a “nicer than normal” day!

Terri

Growing Towards the Joy

Strokes suck.  There are just no two ways about it.  They just suck. However, in the time since my mother’s stroke, we have been trying very hard to stay positive and grow towards the joy.  There are many days when I feel like the sun has moved beneath a permanent cloud. It feels like I am struggling futilely through a nightmare. I feel resentful that I can’t just wake up and be done with it all.  On those days, I try to focus on our small victories. 

There was the day I walked in when she was having occupational therapy and she read the message on my t-shirt out loud- “I’m not saying I’m Tinkerbell.  I’m just saying that no one has ever seen Tinkerbell and me in the same room together.”  Until that happened, I didn’t think she was able to read any more.  That was a great day.

There was the day I was doing physical therapy with her and the therapist was trying to get her to take plastic cones from the therapist with her stroke-weakened right hand.  She made several attempts with her right hand, then smiled devilishly, quickly grabbed the cones with her left hand, and began to laugh.  Until that happened, I wasn’t sure she was able to find something to joke and laugh about any more.  That was a great day.

There was the day I came in while she was in the dining room not eating lunch and she started pushing her wheelchair along with her feet. The look on her face told me that she had been waiting for me to show off her new skill. Until that happened, I didn’t know if she would ever have anything about which to feel proud any more.  That was a great day.

There was the day I brought her a card that came in her mail at home. She opened it by herself and immediately knew that it was from an artistic friend of hers because the card was obviously lovingly hand-crafted.  Until that happened, I wasn’t sure she truly knew who I was, much less remembered old friends.  That was a great day.  

I try hard to remember these triumphs when she has a bad day and seems to forget how to do the very thing I was so excited she was doing the day before.  I try hard to remember these triumphs when I invest about six hours of my life on a ten-minute visit with a neurologist.  I try hard to remember these triumphs when I am trying to figure out what I am going to do when the rehab facility releases her.  I try hard to remember these triumphs when she goes back into the hospital because of some secondary issue that the rehab center believes needs to be evaluated.  I try hard to remember these triumphs when I am dealing with the administrivia required to run her life and care. 

I try hard to remember these triumphs when I am sad and scared of the future.  I also try hard to push away the next thought that comes to my brain, unbidden, when I remember these triumphs… that they are slim pickings to be considered joyful moments.  As meager as these joyful moments are, I have to hang on to the certainty that they are indeed joyful moments.  It doesn’t do much good to try to grow towards the sun when your brain is only too quick to bring on the rain.

What joyful moments have you found in difficult situations?  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com.  Thank you all for reading and for your support.  I hope you don’t have to look too hard for your joy today!

Terri

Change Squared

A little over two months ago, my mother had a stroke.  I have been posting blog articles that I wrote in advance during the time since she was taken ill.  I thought it was time now to share some observations about the situation with you.

In a wicked irony, the stroke occurred on the very day I posted my article, Growing Up, about the changes in the relationship between my mother and me.

I have been examining the transitions in my life since retirement in excruciating detail in this blog over the past ten months or so.  Despite this little exercise in egomania, the day my mother had her stroke I learned that I know exactly nothing about adapting to change.  Whining about my sod drama pretty much loses its “oomph” when compared to this.

When I went over to my mom’s mobile home (where, yes, she was living alone… as I have had to shamefully admit to one medical professional after another over the past several weeks), she seemed, at first glance, to be asleep.  That wasn’t too unusual, especially since she had been staying up to all hours to watch the Olympics on TV.  However, I quickly noticed that something was very wrong.  Her “magic button,” that is supposed to be her lifeline for help in case of emergency, was on the charger rather than around her neck. I pushed the button and got emergency services, but it is likely that she suffered the stroke several hours earlier.

My initial reaction was pure guilt.  How could I have let her live alone? How could I not have been there when she needed me? How could I have moved her from the world she knew across the country to a very different life?  Have the adventures, fun, and care I hope I’ve provided for her in her new home been enough to compensate for what she gave up? Has she been happy?  Does she regret moving from her old life? Have I done right be her?

These questions quickly morphed into a solid concrete boulder of shame lodged somewhere between my lungs.  That boulder remains to this day, impeding my ability to breath, sleep, and eat.

Even as I struggled with this tsunami of self-loathing, I knew this event was not about me.  I had to put my feelings aside to focus on what my mother needed me to do… whatever that might be.  Once more, I found myself in the situation of having to deal with problems and accomplish tasks I had no idea how to do.  Trying to achieve what she needed or would want was made even more difficult by the fact that my mother’s cognitive and communicative skills at that point were just barely above non-existent.

Trying my best and expecting an incredibly unrealistic standard of adequacy from myself, I plowed my way through fogginess and failure and frenzy to work with the doctors, nurses, therapists, and case managers at the hospital.  I researched and toured rehab facilities so that, when the hospital suddenly announced on Sunday morning that they were going to release her, I was not completely unprepared.  Still, this announcement prompted me to scamper around to ensure I decided on the best facility I could for her.  I hope I did, but there is really no way to know.

While I was pushing my way through the tasks and decisions necessary and keeping other family members informed, I realized I was also pushing through something else.  There was a sadness so deep and dense and profound, it felt like everything I did, I did while swimming through a turbulent ocean of jello.

My mother was living her worst nightmare.  As her body has aged and worn out, she has always said she could live with whatever physical impairments she had to face, as long as her mind still worked.  Now exactly what she has dreaded for years has happened.  Her brain in broken. In the early days after the stroke, it certainly looked like there wasn’t much hope of fixing it.  I couldn’t make it go away.  It felt like there had to be something I could do to fix it, if I could only figure out what.

Maybe for the first time ever, I truly, truly understood what people mean when they say “my parent wouldn’t want to live like this.”  While I’ve always understood the general concept, I couldn’t help feeling that there was at least some measure of self-interest behind the statement.  Maybe the person is actually despairing over how she will take care of the parent without losing her own physical, mental, emotional, and social health.  Maybe she is despondent over finances.  Maybe she is hurting unbearably watching the parent suffer.  However, after seeing my mother for the first few days after the stroke, I could understand the belief that a person would not want to continue to live in that state, self-interest completely aside.

I don’t say that self-interest is part and parcel of the “may parent wouldn’t want to live like this” reaction to imply criticism.  It is absolutely fair, right, and necessary to consider self-interest in making decisions that will impact your life.  Good people consider all interests, including their own, trying to figure out the right thing to do when faced with a bunch of really bad options.  Balancing those interests to pick the course of action that best meets the most needs can be unbearably hard and scary, especially when one of the interested parties has severely impaired cognitive and communicative ability.  I find myself trying to think what my mother would have wanted, based on her general philosophies, before the stroke.  That at least gave me a starting place.  That methodology does have one major flaw, however.  Before the stroke, she had only a theoretical idea of what she would feel like if she was ever in the situation she is in now.

I usually do not sleep at night.  I spend the nights on the internet, futilely looking for any information to make me feel better.  I make endless lists of tasks I have to complete.  Each morning, I face the day with dread.  I dread watching my mother struggle and hurt from the therapies and transfers.  I dread tracking down one or another care professional to get the status of her condition.  I dread the administrivia that I had to try to conquer without a legal power-of-attorney. I dread the decisions that were going to have to be made about her future at some point. I dread trying to find the right words to update friends and family about my mother’s progress and prognosis.   I dread facing the financial cataclysm this situation will cause.  I dread the mourning for the loss of my mother as I knew her.  And at the same time, I am ashamed of myself for being mired in dread.  This isn’t about me; it is about my mother.   Truth be told, the thing I dread the most is facing another day of not being able to illuminate the dark place that my mother’s brain is struggling so hard to escape.

As the days progressed and my mother got therapy at the rehab facility, her situation starts to improve.  Her physicality is improving, as well as her cognition and communication.   The advances are tiny and we are both impatient, but those advances are steady.  I acknowledge and celebrate those small victories daily.  At the same time, each day exhausts, overwhelms, and guts me.  It is hard work to encourage her to do physical activities to maximize her therapy and to come up with exercises we can do together to strengthen her.  It takes incredible concentration to patiently listen and follow what she is saying.  It takes patience and respect to try to converse with her in a way she will understand.  It takes so much resilience to face her slips into a different time or situation on those occasions when her increasing cognition takes a detour.  It takes so much faith to keep going when she bounces back and forth between the hospital and rehab facility, as the medical providers come up with additional concerns to be evaluated.   I’m doing the best I can.  I am sure I am not doing it right.  I’m just doing the best I can.

While my mother battles with her physical recovery and I deal with the pragmatics of her care, we have sad, sparse conversations about independence, finances, and dignity.  I tell her I don’t want her to worry, but I don’t want to lie to her, either.  Some of these conversations are challenging, but, so far, they have also been productive and satisfying.  We try to be hopeful.  We try to maintain some happiness in what we share and what we still have.  In all honesty, though, joy is in short supply.  It is important to keep looking for it, though.  Maybe, just as a flower grows towards the sun, my mother and I can learn to grow towards joy.

As we make some progress, I start looking towards the future and what the “new normal” will look like for both me and her.  I am beginning to learn that there is really no way to know.  Maybe learning to adapt to change means you just have to be able to stand at the edge of the great blackness of the unknown and take a step into whatever is.  I just don’t know if I am brave enough to do that.  I also don’t know that I have a choice.

So what are your thoughts?  Do any of you have any suggestions about how to surf these challenging new waters without getting pulled under the waves by the undertow?  Please share your perspective by leaving a comment.  In the alternative,  you can send me an email at terriretirement@gmail.com.

Thanks for reading.

Terri