Quality Of Life

One of my many sources of guilt since my mother’s stroke revolves around my decision to move to Florida.  If I had stayed in California, obviously, my mother would also have stayed.  It isn’t that I think that she wouldn’t have had the stroke if we had stayed in California.  It is just that she had a much more active, independent life when she lived in California.  She drove.  She ruled the docent world at the local reservoir like Glinda the Good Witch ruled Oz.  She had friends.  She worked full time for the school district during the summers. She had my brother living close by.  I hate to think that my mother sacrificed what was to be her last relatively healthy year and a half of life to make sure I didn’t postpone creating the life I wanted in my retirement. 

My original plan was to stay in California while my mother was still alive.  I know my mother had no burning desire to move to Florida.  I know she chose to embrace the move so that I would not put my life on hold.  The irony is that neither one of us wanted the other to sacrifice.  I guess that is a sign of a loving relationship, but it doesn’t preclude pain or guilt. 

Of course, I struggled with the guilt born of the decision to move long before my mother had the stroke.  I’ve argued to myself that my mother is a grown woman and she was the one who made the decision.  I’ve tried to provide as much care, company, entertainment, and love as I could to compensate for the amusements and activities she left behind.  I’ve acknowledged that there are many practical ways that her life improved when she moved to Florida. 

If anything, these months since the stroke have shown the wisdom of the decision to move.  If I had stayed in California, I would have been living over 150 miles round trip from my mother.  Here in Florida, I was only 15 miles from her mobile home before the stroke and I am only 7 miles from the long-term care facility now.  I don’t think I would have been able to do as much for her as I do now if we had stayed in California. That would have been a huge loss to both of us.   

All that aside, I still wrestle with the guilt.  It is always hard to know what the best answer would have been, even with the benefit of hindsight. 

The other day, I was responding to an email from one of my mom’s California friends.  I mentioned that I hoped that the benefits I provided in Florida compensated for the life my mom gave up in California.  The friend replied with a reassuring message about how my mother had always talked about all the fun things we did in Florida.  I decided to use that email as a starting point for a conversation with my mom.  I read an edited version of the email from her friend.  I said to my mom that I hoped she truly had enjoyed the activities and adventures we had together in our new home.  She looked a bit bewildered, so I continued.  I said that I sometimes wondered if I did the right thing moving to Florida because I worried that she gave up so much to move with me.  A light went on behind her eyes and she sputtered, “no, no, no.”  I forged ahead.  Looking around at the nursing home room, I said, “This is no one’s idea of fun, I know….”  She cut me off, insisting, “no, but HAPPY, HAPPY.” 

I think my mother’s cognitive and communicative abilities are no longer anywhere near sophisticated enough for her to try to say the “right thing.”  I have to assume she was genuine in telling me what she really feels.   

It was a gift. It was especially a gift in that my mother could not have that same conversation today, just a few weeks later.  The decline is so gradual and so ephemeral I don’t often realize it as it happens.  However, when I compare her condition today to what it was a few weeks ago or even a few days ago, I see the disintegration.  This ooze down the horribly rough road is so difficult to watch, it is hard for me to understand the “happy” response.  She is so frail and weak and disconnected, I don’t know how she can be happy. Her life has become so small and limited, there doesn’t seem much left that could inspire happiness for most of us.   On the other hand, my mother has always had a talent for happiness.   

Maybe, when you boil happiness down to its very essence, loving and being loved can be enough to generate joy.

What does “quality of life” mean to you?  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com. 

Enjoy the quality of your life today!

Terri

 

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 🙂

 

How Are You, Really?

If people realized how dangerous that question is, I think they would stop asking it.

Ever since my mother’s stroke, I have struggled with how to respond when people inquire after her health and my emotional state. These dear, kind, lovely people are genuine in their desire to express concern and offer support. I don’t know what I would do if no one asked.  The support of others may be the only thing that is getting me through this challenging time.  On the other hand, I don’t seem to know how much to say.  I’m okay at responding quickly and generally when someone politely asks how she is doing. It is when they follow-up with a subsequent, probing question about how I am “really” handling it that I have the problem.

On one hand, I want to tell them. Oh, how I want to tell them! There is a huge reservoir of unexpressed thoughts and feelings living in my mind that constantly threatens to breech the levy of my composure. On the other hand, I don’t want to a be an emotional drain or a tedious attention-guzzler. I don’t want to be someone who can bring nothing to the relationship table except her brokenness. I have been that person and I hate myself when I am so pitiful. I also don’t want to be crying in public all the time, as I am wont to do when I start allowing all those thoughts and feelings to creep over the dam. Crying is not my best look and I seem physically unable to control it.

I am always resolving not to take the bait the next time someone asks me how I am, really. I’m afraid I usually fail. When someone asks probing questions, I tend to reward their kind concern by vomiting out a string of words, words, and more words, punctuated by awkward pauses and wrapped in weird syntax. The friend who has asked the question tends to look engaged and concerned at first. As the words keep coming, the friend’s eyes tend to go somewhat blank. Finally, when it is clear that I am either going to have to stop talking to take a breath or lose consciousness, I notice the friend’s eyes darting around in a panic, searching for an escape route.

I am pretty sure that the long outpouring of words is rarely lucid. I know it does not accurately describe what is going on in my heart and mind. That may be why I keep talking and the words keep coming out. I guess I figure that, if I say enough words, I’ll utter some that will actually reflect what I’m feeling.

It isn’t like writing. When I write about how I am doing, I can write all the words I want without burdening anyone. I can reread all those words I have written and focus on the few that actually ring true. I can highlight those genuine nuggets and expound on them, while excising all the words that seem unauthentic or unhelpful. On the other hand, when I’m in a live conversation, all those words just lie there between me and the other person. They litter up the personal space and often create a barrier between us. Once I’ve said them, I can’t edit them or “unsay” them. I think that is one of the reasons I have a hard time sleeping at night. I tend to replay past conversations, editing them in my head. I will surely be prepared for the next time that exact same situation occurs and requires a better version of the exact same conversation. I also anticipate future conversations, writing the script for what I should say when the time comes. Of course, since no one else gets a copy of the script, it may be a little bit difficult for me to say my lines without the other players giving me the right cues.

The other day at the nursing facility, one of the hospice nurses asked me how I was doing. I responded by saying I was okay, as well as could be expected. She asked again and I responded similarly. I was hoping she’d stop that particular line of questioning, but she just kept standing there, staring me in the eye, saying nothing. I’ve always known that a person who is comfortable living in the awkward silences of a conversation is a person is who is likely to get the information she seeks. It is a technique I employed often in my working life. My familiarity with the strategy didn’t help me in this situation, though. The hospice nurse didn’t have to live in an awkward silence very long at all before words started stumbling out of my mouth. I don’t even know why or what I was saying. I just had to talk.

The hospice chaplain saw what was going on, because there is basically no place that is private in a nursing home. He hustled over to hug me and add his voice to the “how are you doing, really?” chorus. Trying to stop the flow of tears that inevitably accompanies the flow of verbiage, I started babbling about completely unrelated subjects. The nurse and chaplain seemed to find the whole exchange pretty alarming.  They kept suggesting I needed to get away from it all much sooner than a trip I was toying with taking in September. They also thought I should do relaxation exercises, ask for help, and remember to put on my own oxygen mask before assisting others. This required even more words to convince them that I am doing things to take care of myself and actually feel like I’m approaching the situation in as healthy a way as I can muster. It is just a sad, exhausting situation, even if you do all the right things. And I come from a long line of easy criers.

Despite all the words, I don’t think I convinced them.

Do you have difficulty responding when people show concern for you during difficult times? How do you reply?  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com. 

Have a FINE 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