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

 

A (Weird And Strange) Sentimental Journey

When Max and I travel, our destinations usually have a wholly “vacation” vibe.  We are always visitors, not residents.  There is no overlay of “real life” on our trips.  There isn’t any consideration of work, chores, obligations, or normal day-to-day routine.  As a result, our usual emotional experience of vacations is fairly one-dimensional- pleasure, relaxation, excitement, fun.

Our recent trip to California was a whole different beast.  Some of what we did on the trip did constitute “vacation vibe.”  We stayed in a hotel with a jacuzzi, took a side trip to Nevada to go to the casinos, and didn’t worry about responsibilities.  On the other hand, we did a lot of things that recalled the time when California was our home- went to favorite restaurants, took a trip to the San Diego Zoo, visited friends.  Being in a place where we spent most of our lives made it impossible to escape the impact of the remnants of our past. Things were pretty much as we remembered, but not quite as we remembered.  Everything seemed too familiar to truly feel like “vacation.”  The rub, though, was that everything also seemed a little too stylized to feel like “home.”  California probably didn’t change.  It is more likely that the different lenses through which we now look- ground by our new lives- are the reason for the differences we sensed. Reconciling those feelings of “home” and how they have changed was a huge theme of this trip.

This nostalgia created by a vacation tangled and snarled up with the memories and associations of “home” produced a much more complex series of emotions.  It was fun and wonderful, but also complicated.  Yes, we originally decided to vacation in California precisely to experience some of our old favorite haunts and activities that we have missed since moving to Florida.  I was just unprepared to still feel so connected and, yet, so ephemerally connected to California.  It was almost as if my old life in California was covered in cobwebs and I had managed to get tangled in some of those silken threads.  I was always aware of the sense of being attached and always equally aware of how easy it would be to pull away from the thread.  Still, I was not sure that I wanted to completely disengage… either from my California connections or the Florida connections that are just starting to form.

It was a very weird sensation that overwhelmed me several times during the trip.  Everywhere I looked, I remembered the best of my times and the worst of my times. I remembered who I was and how I perceived the world during the nearly fifty years I lived in California. I remembered the experiences I had with people who are either gone from my life or who have changed radically. I remembered how satisfying it was to regularly and routinely see my friends in California.   I think I felt more nostalgic and mournful about moving from California during this trip than I did when we actually moved. On the other hand, being in California didn’t feel quite real… or quite right.

The last time I went to California was a little less than a year after we moved.  At that point, I was still somewhat of a stranger in a strange land in Florida.  The brief trip back to California was a welcome, comforting dose of familiarity.  It was really too soon for California to not seem like home any more.  At that time, I had sketched in the outline of a life in Florida, but there was still a lot of blank spaces.  Since then, I’ve grown and expanded my Florida life.   I’ve colored in the blank spaces and the Florida life is more dimensional now.  As familiar as California felt to me on this trip, it also felt weirdly unreal.  It was hard recognizing that I am losing my attachment to my old home, especially when it still all felt so familiar.  Familiar… yet more faded, kind of like the way a copy of a copy of a copy used to look in the days before we had digital images.  Maybe it isn’t really that I am losing the attachment to California, but just redefining that attachment.  California may represent my past life, but it is still my life. Surely that means there is still some kind of attachment.  Besides, people I love are still part of the California life that is unfurling each day.  I think that means that California life is still a present part of my life, too.

When I went to church the Sunday after returning to Florida, a friend asked me how my trip was.  I replied, “It was wonderful, but I am glad to be home.” She looked at me and said, “so, here’s home now for you, is it?”

As soon as she asked the question, I realized it was true.  I had said “home” referring to Florida without thinking, but I knew I meant it.  California still houses a lot of the artifacts of my life- the memories and experiences that brought me to where I am now in my journey.  We revisited many of those memories and experiences during our trip, sort of like the way you might go to a living history museum to discover how people used to live in the “olden days.”  Then, after soaking up a dose of yesteryear, you go home and go on with your own present and future.  That’s what I did. After our trip to California, I went home to my present day real life.

Have you ever gone “home” after moving away?  What was that experience like for you?  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com.

Have a great day!

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 🙂