caretaking – Terri LaBonte- Reinventing Myself in Retirement

Loosening My Grip

Right before my mother had her stroke on August 17th, I made reservations to take a solo trip to California to visit my friends and recharge my batteries. I scheduled the trip for mid-September. Max was going to hold down the fort so I could go to California without worrying about my mother. I ended up cancelling the trip at the last minute because I could not see myself leaving my mother at that time. She was out of the hospital and in the rehab facility, but it just seemed too soon to leave. We were both confused and unsure of what was happening. I was too raw and my brain was too flooded with emotion to consider stepping away for a week.

We started forgoing vacations even before my mother’s stroke because it was difficult to leave her on her own for more than a couple of days. Even though she was living reasonably independently in her mobile home, she had no safety network in Florida and she often needed help with routine issues that come up in daily life. For instance, she would sometimes have difficulties getting the air conditioning or heating to turn on and stay on to the temperature that felt good to her. When I was home, it wasn’t a big deal to run over to her house and help her when there was a challenge. I could try to anticipate and take care of as much as possible before leaving, but she still often experienced unexpected problems when I was on a trip. It became more anxiety-fraught than it was worth to leave on a vacation.

When my mother started on the hospice program and I was losing myself in her illness, Max thought it would be good for both of us to have a vacation on the horizon. Being the maniacal planners that we are, we have always believed that anticipating a vacation is almost as big a pleasure as actually going on one. Even though I felt a bit stressed and pressured at the idea of planning to leave my mom, it did help to fantasize about a vacation. When Max pushed to actually schedule a trip to California, I felt a bit panicky because I was concerned that we would commit the money for the plane tickets and then have to cancel at the last minute again because of my mom’s condition. On the other hand, we were scheduling the trip four months ahead of time. Truthfully, I don’t think anyone, including my mom, thought she would still be alive by the time our airplane went wheels up.

As time passed, my mother stabilized. She adapted a little more to her condition. She settled into the nursing home and seemed comfortable there. Although one of my favorite hobbies is anticipating vacations, I could not wrap my head around thinking ahead to the trip. I worried about leaving her. I didn’t want her to feel abandoned or sad. I didn’t want her to think I didn’t love her or that I wasn’t going to come back to her. I worried that she would stop eating altogether if I wasn’t there to make her ice cream sodas and bring her McDonald’s milkshakes. I tried hiring a neighbor to visit her and bring milkshakes while I was gone, but it turned out she had a trip planned at the same time as ours. I wanted to go and I had a sneaky suspicion that I was getting to the point where a vacation was becoming less of a luxury and more of a necessity, if I wanted to keep getting out of bed each morning. Still, I was hesitant.

I wasn’t worried about the care the nursing facility was giving my mom. The staff has been wonderful with her. They make her laugh, which is officially my favorite thing in the world right now. They treat her respectfully and affectionately. They provide what she needs. The sweet hospice nurses volunteered to bring daily milkshakes so my mother would not get out of the habit of consuming some form of nutrition. I don’t think I was even really worried that she would die while I was gone. She seemed pretty stable and, honestly, I think my mother would almost prefer it if she were to die without me being there. It is kind of a mom thing. I think, at this point, she would rather die gracefully alone and protect me from the grief of watching her die.

Still, there was some huge something that was preventing me from anticipating the trip with pleasure. In short, I think it was some deeply buried belief on my part that my presence is some sort of talisman against my mother’s physical and emotional pain. Something in me thinks that, as long as I am there, I am some sort of shield against her hurting physically or emotionally. It feels like, if I can control the amount of time I spend with her, I must be able to control how much she hurts. That is clearly not true, given what she has been going through the past several months- even with my regular presence. The truth is hard to take. No matter what I do and no matter how much time I spend with her, I cannot change what I want to change- the reality that her condition is life limiting in every sense.

After much mental percolation and urging by everyone in my life, I decided to take the vacation. My mother gave me a wonderful and unexpected gift in the last week or so before we left. She was able to tell me that she was glad I was getting to go. Max and I ended up having a great time. Max and I had fun and enjoyed just being with each other, surrounded by the activities of our old life. I realized that the sneaky suspicion I had that the vacation was becoming necessary was more than a suspicion. I came back lighter and more refreshed. I was more able to perform my daughter-caretaker role. You always hear that you have to take care of yourself so you can care for others better. I understand that, but, like most caretakers, I tend to really believe that, with enough effort and will, I should be able to provide the best care even without taking time out.

My mother did great. She also seemed better than she was before I left. We have enjoyed clearer conversations and more laughter. I sent pictures from my phone to the hospice nurse while I was gone, so my mom already had some idea of what I had been doing in California and was well-prepared to hear about my adventures. In fact, it was kind of nice to have something new to discuss. Going to the nursing facility nearly every day, there isn’t much that comes up between visits to be fodder for new conversations.

I’m very glad I loosened my grip on my mother’s care enough to take my week away. I had to loosen my grip on her care to grasp my own.

What have you done to take care of yourself when you were in a caretaking role? Please share your perspective by leaving a comment. In the alternative, you can email me at terriretirement@gmail.com.

Take care!

Terri 🙂

The Long Haul

It has now been over nine months since my mother’s stroke. We’ve experienced several seasons of her prognosis. I’ve felt that each season has required a different response from me.

When my mother first had the stroke, I stepped into the war zone of my emotions, trying to be ever present and functional as medical staff triaged her towards “survival.” This season lasted only a day or two.

During the next season, my mother worked hard at rehabbing. The goal was for her to improve from “precarious existence” to “some truncated version of independent living.” During that time, I rabbitted around doing, doing, and doing. My focus was on doing all the administrative things to keep her life on hold and making sure nothing fell through the cracks so there was nothing to distract my mom from just getting better. I also invested my efforts in being her cheerleader and motivator. I concentrated on trying to share the rehab process with her, as if my doing the exercises with her could somehow take part of the yoke from her shoulders. I also tried desperately to provide some sort of normalcy and memory of what “real life” was like. I remember regularly pushing her wheelchair around the rehab facility in the hot, humid Florida weather. My goal for that little adventure in exhaustion and dehydration was to remind her how much she enjoyed just being out of doors. I wanted to show her that she could still enjoy some of her favorite things about living.

I think my mother knew before I did that things were not going to work out in the way I wanted. The season changed. It became darker and bleaker. The rehab wasn’t working. My mother’s life got smaller instead of larger as she kept struggling with the physical and occupational therapy. As her life got smaller, so did the number of life experiences she could still enjoy. She became so, so weary. She declined physically and emotionally. We seemed to have entered a season of good-bye. The hospice people believed she would pass quietly within a few days or weeks.

When someone you love is in their last days or weeks, everything in life changes. My life became all about her. During this short-term season, I spent much of my time just being with her at the hospice center. We didn’t talk much. We didn’t really do anything. I was just there. She ate almost nothing. She slept a lot. I think she was just worn out from the months of battling to make progress in rehab and from the emotional effort it took her to accept her reality and decide to just let things be. I did nothing to keep my life running that didn’t absolutely have to be done. I didn’t make much progress on the tasks needed to manage the financial side of my mother’s life either. Anything that wasn’t boiling over got pushed to the back burner, including my own feelings.

Once my mother had this opportunity to rest her weary body and soul, she stabilized and the season changed again. While it was clear she was never going to get better, it appeared that she would survive beyond the short term… whatever that might be. She was still journeying rather purposefully towards the end of life, but she was traveling at a languid pace. Sometimes, I think that pace has slowed for a reason. This new season has given her time to look at the totality of her life in a clearer, less confused way than she could during the rehab or hospice seasons. It has given us both the chance to reconnect in a more meaningful way. Whatever the reason for the slower pace, it is her pace and it needs to be what it is.

Now, we seem to be managing her illness and journey towards her end of life for the “long haul,” if one can speak of the journey towards the end of life as the “long haul.” The response must change. My role in this season has been to suggest and implement ways to make her memories and connections more satisfying and concrete. I’ve bought laptop computers and portable DVD players to show her family pictures and videos. I’ve suggested particular movies and television shows for us to watch together that have meant something to us in the past. I call and face time my brother regularly from her nursing home room so that they can interact I’ve kept up with her friends in California, which results in those folks sending her emails and cards.

I have to acknowledge, though, that it is no longer possible for me to react in the same way I did while my mother was at the hospice house. All those practical and logistical tasks that I postponed during that sad, strange short haul have to be dealt with at some point. I must invest some time and energy in other relationships, if I want those relationships to survive the long haul of my mother’s decline. I have to feel the feelings that I pushed to the back burner when the only thing that mattered was my mother’s comfort. I need to take time for myself to replenish the reserves of strength that I’ve been depleting over the past nine months. Over the long haul, my life has to be about more than watching my mother come to the end of hers.

I struggle with how to prioritize and balance over the long haul. I’m confident that my mother likes it when I live in a world outside her narrow one. She enjoys the pictures and stories I bring back to her after my “day off” each week. It is still pretty excruciating to leave her, for a lot of reasons. It is still exhausting to conduct my life with the extra layer of hurt over my shoulders that doesn’t ever really disappear. In some ways, of course, the short haul season was more difficult because it was so dark and intense and lonely. The long haul has been lighter and more purposeful. On the other hand, the long haul is just so relentless. I am so aware that I have no idea how much longer this way of life will continue. I have no idea how much longer I will be rearranging my days to visit the nursing home during my mother’s “sweet spot” of alertness. I have no idea how many more days I will have to do what needs to be done to manage her affairs. I have no idea when I will run out of strategies to keep her engaged. I have no idea how long I can handle the grief. I have no idea what is ahead and how far ahead it is, except that the situation is likely only to get worse. As difficult as the “now” is and as difficult as it is to journey this path with my mother, it hits me in the gut that the day is coming when I won’t be traveling with my mother anymore. That reality sneaks up on me from a dark, cold corner of my brain on a regular basis. I am terrified of what it will feel like when it happens.

Sometimes I think I cannot face all the sorrow and fear one more day. Then I realize, I don’t have to face it for one more day. Right here, right now, I only have to do it today. I do much better when I keep my eyes and heart focused directly in the present. I can go to the nursing home today. I can think of ways, however small, to make my mother happier today. I can handle seeing her pain today. I can avoid experiencing the pain associated with my mother’s eventual death today.

What is the answer to handling the stress of everything related to my mother’s illness over the long haul? The short haul.

What do you think? How does a person balance the needs of oneself with the needs of others? Please share your perspective by leaving a comment. In the alternative, you can email me at terriretirement@gmail.com.

Have safe travels today!

Terri 🙂

PS For those of you who read last week’s post, I wanted to provide an update. Last Thursday, when I was walking into the nursing facility, I noticed that the warped places in the pavement are now covered by cement structures that look like speed bumps. Apparently, my nice gardener guy did more than just help me up and clean up my mess. I’m glad they fixed the problem!

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 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

Growing Up

My relationship with my mother has changed since we all moved.

I knew about the phenomenon of role reversal that many adult children experience with their parents. As the parent ages, the adult child becomes the caregiver. The parent becomes more and more dependent on his or her child. I have seen that happening gradually in my own relationship with my mother since my father died suddenly about twenty years ago. The velocity of that role reversal has certainly increased since our move. In our old home, my mother needed a lot of help with even simple physical tasks, but was very independent and competent when it came to arranging her own life and making decisions. She always made her own medical appointments, decided on her own purchases, and even untangled problems like a glitch in her credit card billing on her own. Up until a year before we moved, she was even preparing her own tax returns. Since our move, she has had something of a crisis of confidence. She is still perfectly capable of making her own decisions and arrangements, but seems reluctant to do so. I am making her doctors’ appointments, overseeing her home improvements, monitoring her health insurance coverage, and, at her insistence, reviewing any research she does prior to making any decision.

At first, I was a bit disconcerted with this, as I thought it meant that her move across country had somehow triggered a decline in her general ability to cope. After all, if she was doing all these things on her own and working full time for several months a year and doing substantial volunteer work while she was in her old home, why could she suddenly not trust herself to decide on a medical insurance plan once she moved across the country? Then, a friend of mine suggested that it was very possible that my mother was managing all the routine tasks of her life the best she could simply because she had to do it herself. My friend was absolutely correct. My mother might not have been comfortable or confident in what she was doing, but didn’t feel she could ask for help because I was working fulltime at a very stressful job and lived 70 miles away from her. Once I retired and we were living 15 miles from each other, she felt freer to show her vulnerability. In reality, she has not declined. In fact, quite the opposite is true. She is feeling well and her blood pressure is under control, even without medication. She admits to feeling happier and less stressed. Now, my challenge is finding the balance between helping her continue to feel well and making sure she retains her sense of independence and competency.

So, the real change in the relationship is not the role reversal. It is more related to that living 15 miles from each other thing.

When I was living 75 miles from my mother, it was easy to seem like a supportive, compliant daughter. I talked to my mom on the phone a couple of times a week and saw her every three weeks or so. I’m sure she thought I was pretty close to perfect. If I made a mistake or did something of which I thought my mother would disapprove, it was easy to just not mention it. Once we started seeing each other four or five times a week, it was more difficult to keep things from her. She knows when I buy something she thinks is frivolous. She knows when I give a homeless person money just because I don’t want to deal with his annoyance if I refuse. She knows when I agree to something that Max thinks we should do just because I’m tired of arguing. She also sees me get snappish and sarcastic when I am tired or hungry. I am pretty sure she knows now that I am nowhere near perfect. Even though she only voices her opinions gently and occasionally, I know her well enough to know when she disapproves. If I basked in the sunshine of her approval for 55 years before our move, I fear I am now in danger of sinking into the mire of her disapproval. And I care way too much about that.

It has been an uncomfortable transition. When I first noticed the shift, I felt sad and empty. I mourned that, in trying to do a good thing by taking on my mother’s caretaking, I seemed to have lost my relationship with her. I knew my mother still loved me and appreciated who I am and who I try to be. She probably has a much better grasp than I do on the fact that it is perfectly okay that she disagrees with some of my decisions. Still, I tended to become overcome by anxiety by the fact that my mother might not always agree with me.

If I am not the “easy” daughter who is never a cause for concern, do I cease to be lovable?

Of course not.

As more time passed, I remembered that love is a verb. And so, in some weird non-grammatical way, is “relationship.” It moves and changes and grows. As I went about my regular routine of helping my mother and trying to maximize the joy in her life, I realized that I was starting to enjoy the same closeness I used to share with her. As my mom and I “relationshiped,” we surfed through the turbulence. While we may not always pull in absolute tandem, we do respect where each other wants to go.

I learned that parental disagreement, even disapproval, is not a catastrophe. Growing up should teach a child that it is safe to disconnect from a parent and live her own life without losing the love of the parent. This education happens to everyone. It is just that, for most people, it happens at around age 15 or 16. It took me until I was 56.

As my mom and I continue to come face-to-face with disagreements and no catastrophe happens, I think our relationship is becoming more authentic again. Perhaps even more authentic than it used to be. We are both coming to terms with the fact that we are each complicated, real people and not just our respective roles- perfect daughter and perfect mother. Or more likely, we are just redefining what our “perfect” means.

So what do you think? Have you taken on additional caretaking responsibilities? Has it changed your relationship with your loved one? Please share your perspective by leaving a comment. In the alternative, you can email me at terriretirement@gmail.com.

As a side note, we had a bit of a “power surge” of new visitors this past week. Welcome to all! I hope you enjoy enough to continue visiting, reading, and sharing. I have been posting every Wednesday. If you would like to be notified when there is new content, please send me an email at terriretirrement@gmail.com.

Have a wonderful day!

Terri 🙂

The White, White Rose of Home

There was a white rosebush outside the house where I grew up. It grew in a stony, rocky area between the house and garage where we kept our trash cans. Nobody paid much attention to it. I can’t imagine that the soil was particularly nourishing. We didn’t water it. It was shaded by the buildings, so it didn’t get much sun. Still, that rosebush thrived and, year after year, it yielded beautiful white blossoms at Christmas. White roses were more of a Christmas tradition at our house than poinsettias and holly.

After we moved out of the house, I made sure my mother had white roses at Christmas every year. Sometimes, it was a table arrangement. Sometimes, it was a corsage. Sometimes, the roses were artificial. Sometimes they were real. Sometimes, when I was particularly poor, it was just a Christmas card with white roses on it. No matter what, there was some form of white rose for my mother at Christmas.

In November this year, my mother announced that she did not want me to buy her white roses. She felt they were too costly, especially for something that didn’t last very long. Instead, she said, she wanted me to wait until spring when the stores were selling those sad looking dormant rosebushes (or maybe “rose sticks” might be an appropriate name) with the roots in a bag and plant her one of those.

“Oh crap, something else I have to figure out how to do,” I said. On the inside. On the outside, I smiled and said, “okay.” At least I figured I had a few months before spring to read up on rose resuscitation techniques. Who knows, maybe she would forget the whole idea.

A couple of weeks later, we were at Big Lots and a group of cub scouts were selling small plants for a couple of bucks. You guessed it. They had one small white rosebush, with a few little buds on it. My mother thought it was a sign from God that we should take it home and I should transplant it.

We took it home and I googled “how to transplant a rosebush.” There was a pretty explicit, lengthy set of instructions. Instead of trying to integrate the whole magilla, I focused on the first step, which was to wait until spring in order to prevent frost from killing the newly transplanted rose. Google-sanctioned procrastination! Right up my alley. I explained this to my mother, who seemed good with waiting until spring. On the outside. I started working up to my new project by moving the potted rosebush from outside to inside.

A couple of weeks went by and the rosebush was looking pretty rough. The term “scraggly” comes to mind. I put it back outside, hoping some sun would help. No luck. Every time my mother mentioned transplanting it, I brought up the Google instructions. Finally, though, the rosebush seemed terminal and extraordinary measures were warranted. My mother pointed out that it was unlikely that we would have frost in central Florida. Back I went to Google to refresh myself on the rest of the long list of directions. Armed with a print of the page, I went to the local home store and tried to purchase mulch, potting soil, and peat moss. When I came face-to-face with the bags of these items, I discovered that I couldn’t even pick up the smallest bag of each of them without the aid of a chiropractor. Not to mention that the cost and quantity seemed to be pretty much overkill for one tiny rose plant. As I tried to figure out how I was going to explain to my mother that transplanting this rosebush was not cost-effective and was possibly hazardous to my health, I noticed a small bag of something called “potting mix” a few shelves over from the gargantuan bags of mulch, potting soil, and peat moss. Sensing a conspiracy, I checked out the label and discovered that the $5 bag of “potting mix” contained…. mulch, potting soil, and peat moss! What a bonanza! I purchased the potting mix, feeling very accomplished. I was starting to get the hang of this gardening stuff.

Since I was on a roll, I went over to my mother’s mobile home and starting digging the hole. I followed the directions from Google and stuck that little rosebush right into the ground. Filling the hole back up, I just said a prayer and hoped for the best.

Two nights later, there were record low temperatures. And frost.

God must have sent angels to blanket that rosebush, though. Against all odds and despite my complete ineptitude, it flourished. Within a couple of weeks, new buds started to blossom. The bush is growing and roses keep on blooming!

It strikes me that this rosebush might be a microcosm of all the caretaking tasks I have taken on for my mother.

I won’t say that there are not real challenges and difficulties associated with caring for my aging parent. Cleaning and medicating her feet and legs took some getting used to. Doing her taxes wasn’t high up on my wish list of things to do. Fighting with the wheelchair to get it in and out of the trunk of the car everywhere we go wears me down some days. Navigating around crowded theme parks and stores can be very frustrating. Opening doors to restaurants using my backside is an acrobatic skill I never really aspired to learn. Cleaning her bathroom is not a pleasant task. Coordinating and attending doctors’ appointments can suck up a day like thirsty kindergarteners suck down juice boxes. Even the thought of comparing insurance companies can cause my eyes to cross. Dealing with the various contractors I’ve arranged to do work at her house at least doubles the burden involved with dealing with the various contractors at my own house.

These are all very real challenges and I wish it wasn’t necessary to deal with these challenges. I wish my mother was healthy and hearty enough to do all these things herself. Still, I love that I can do these things for her. If I can add to the happiness and freedom in her life, I want to do it. My mother has always put me before herself. Now, it is a gift to give. The time I spend with her while helping her is also a gift. We have a lot of fun together. I am learning things about her and her past that I never knew. My mom and I have always been close, but there is now a new dimension and richness in my understanding of her and of our relationship. We are playing a different kind of music together now, my mother and I, and I am enjoying the new song. Yes, there are days when I may get a little overwhelmed, but, for the most part, it is great. The real challenges involved with the help I provide are actually no big deal.

The biggest difficulty and stressor, though, is much less tangible. The biggest difficulty and stressor is my fear of doing something wrong. It feels like a big responsibility to be such a strong influence on the way someone else lives, spends money, and gets medical care. I want my mother to make her own decisions about her own life on her own terms as much as possible. I always want to do what I can to relieve her of any undue burden. I try very hard to find the right balance to preserve her independence and autonomy while also doing things to reduce any difficulties in her life. Still, I know that, more and more, she is relying on me to present her with the best options, give her good advice, and implement the decisions. The idea that I might do the wrong thing is really where the burden of caretaking comes in for me. It kind of haunts my thoughts. What if I lead her to a decision that costs her more money than she can afford? What if I recommend a doctor or insurance plan that means she gets inferior health care? What if my complete lack of mechanical ability and visual reasoning means her home isn’t as safe or as comfortable as it could be for her?

What if I can’t make her roses grow?

Yes, I think I should take a lesson from my adventure with transplanting the rosebush. Maybe all I need to do is just the best I can with all the decisions and projects that my mother needs. Continue trying, with whatever ability I can muster, to help her lead the happiest, most comfortable, and most independent life she can. Then, all I can do is trust God to take my efforts and make them blossom into roses!

Most of us believe that every day is a great time to build our relationships and demonstrate our love to those who are important to us. This weekend we have an extra special opportunity to honor our moms and those people who have been mother figures in our lives. Happy Mothers’ Day, all you moms!

So what are your thoughts? Please share your perspective by leaving a comment. In the alternative, you can email me at www.terriretirement.com.

Have a wonderful day and stop and smell the roses!

Terri 🙂

Moving on Up?

My mother says we have moved to a “stupid state.” She bases this assessment on the following:

The highway and traffic systems are wild, wooly, and weird.
There are more counties, with infrastructures supported by the taxpayers, than seems strictly necessary for sound governance.
The news broadcasts consist almost exclusively of predictions about when the rain will hit each particular city block.

I am aware that my mother is having some difficulty with the transition to her new living situation. She tries not to complain, but I can tell based on her frequent mentions of the “stupid state” and her abject despair whenever she is faced with any reminder that she has moved (like getting a piece of mail that has been forwarded from her old address). I suppose it is natural for anyone, much less an 84-year-old woman with chronic kidney disease, to grapple with the trauma involved with a change of this magnitude. I know I have my moments, as well. Still, I do wonder if I did the right thing in moving her to our new state.

The original plan was that Max and I were going to remain in the old state while my mother was still alive. She had a very active, happy life there. Despite her significant physical infirmities and limitations, she still worked full time during the summer. She was the queen bee of the volunteer docents at the local reservoir. She knows more about water than anyone not employed by some water district has any right knowing. She had lots of friends and acquaintances there. She was driving, something she stopped doing before moving (see “stupid state” reason number 1). My brother, who has physical and financial issues of his own, lived close by. She had access to excellent health care basically for free because of the wonderful insurance plan she has been patronizing for the past 50 years. Still, when I bought the house in our new state, there were a few things in her life that were starting to disintegrate. I thought she might want to move and it didn’t make sense to postpone our move for her sake if she truly would just as soon go, too. She surprised me by saying she thought she would like to move.

Although my mother talks about the “stupid state,” I think there are really three main reasons she has some regrets about moving.

Her health insurance plan does not operate in our new locale. This has been a constant refrain since she contemplated moving. After nearly 50 years with the same company, it is a jolt, especially since the old plan operated completely differently from any traditional health plan. Basically, it was run sort of like a privatized socialized medicine system. The insurance company actually employed doctors, ran hospitals, and staffed pharmacies and labs within their own facilities. A patient makes an appointment, goes to the facility, pays her $5 copayment, and all needs are addressed in one location. While inexpensive and very efficient, the health plan was also pretty paternalistic. Patients didn’t have to worry about finding a doctor or lab or paying much of anything. However, if a patient isn’t happy with the doctors or facilities provided by the insurance plan, she is pretty much out of luck. My mother loved her care providers and the ease of the experience, so “having to go to their doctors” was a blessing, not a problem. I’ve got her signed up for a Medicare supplement policy now, which should mean that she should not have any significant costs. Still, she is worried about a myriad of scenarios, most of which are extremely unlikely… that she will have to pay the doctors and file claims for reimbursement, that she will somehow end up paying the maximum out-of-pocket costs every year, that she won’t be able to find a doctor who will give her an appointment, that she won’t know where to go to get lab tests. I’ve got her scheduled for her first doctor’s visit next week. Hopefully, she will like the doctor and everything will go smoothly. If so, I think that some of “health insurance” objection to moving will fade. If not, the upside is that she CAN go to another doctor.

If she was still in her old home, she would have been working in the accounting department of a school district food service department during the summer. Although my mother officially retired from her job at the food service department almost 20 years ago, she has been going back as a temporary employee during the summer every year since. She loves it. She has always been a social butterfly. At the school district, she visits with her old friends. People make a big fuss over her. She does an important job processing applications for free and reduced price lunches. Everyone aids her and makes allowances for her physical limitations because they love her and she really is very good at what she does. Now, she chokes up when she talks about how she would be working at the school district if she was still in her old home. The sad truth is, though, I am not sure how much longer she could have kept up with the job. When I bring up the possibility of volunteering now, she puts me off. Since she has moved here and I am with her more, I am seeing that she is much frailer and more tentative, both physically and in making decisions, than I ever thought she was. I’m sure she would have gone to work this summer, if she had not moved, but I’m not sure it would have ended well. Maybe it was better that she “go out on top” and stop because she was moving rather than because she became incapable.

My brother remains in the old town. It is hard for any parent to leave a child. My brother’s health and, with it, his reliability to assist my mother, has been diminishing for the past five years. I know she worries about him and it was probably doubly hard to leave a child who “needs” her. On the other hand, there really isn’t anything my mother could do for him ten miles away than she cannot do 3000 miles away.

On the plus side, my mother says she feels better physically than she has in years since she has moved across country. I think she is secretly happy to have left her volunteer empire, as she expressed that it felt good to not have the stress of the timesheets and all the phone calls. The mobile home where she was living (which she bought for $6000 in 1996) was falling apart around her. It was filthy and decrepit. She always said the mobile home bothered me way more than it bothered her, but the fact remains. Now, she says she loves the new mobile home here in the great southeast and that she feels her living conditions have improved considerably. I am at her place at least four times a week and take her out often, to run errands and to go fun places. I think she likes that, even though I can’t really compete with all the activities and interactions she had in her old environment.

There are arguments on both sides of the move issue. I truly don’t know if we made the right decision. I am sure that, as Robert Frost pointed out, there is always the “road less traveled” phenomenon. Whichever decision we made, there would always be “woulda, coulda, shouldas.” If my mother had not moved, my brother might not have been able to take care of her needs because of his own medical conditions. The wiring in the old mobile home might have failed and caused a fire. She might have gone to her volunteer job one day and been unable to get back in the car.

A friend of mine once said, when I was obsessing ad infinitum about some decision or action, “stop shoulding all over yourself.” I guess that is the problem. I want an answer that is guaranteed to be the right one, with no questions or regrets. I don’t get to have that. Also, people do get to feel the way they feel. Ultimately, my mother was the one who made the decision and if she has wistful moments, that’s okay. It doesn’t mean that she thinks it was necessarily the wrong decision to move. I will do what I can to help her be comfortable and happy in her new home. And if she ends up deciding to change her mind and move back west, she knows I have her back on that, as well.

So what are your thoughts? Do you struggle with making the “right” decisions, too? Have you discovered any successful strategies for living peacefully with the paths you take? Share your perspective by leaving a comment. In the alternative, you can send me an email at terriretirement@gmail.com.

Have a beautiful day, no matter which road you don’t take!

Terri 🙂