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 firstname.lastname@example.org.
Enjoy the quality of your life today!
10 thoughts on “Quality Of Life”
Quality of life means what you put into your life from day to day. I understand what you are saying in the guilt you feel, but you also don’t know what could have happened had you staying in CA or even if you had moved to FL and your dear mother would have stayed in CA. You can’t look back.
I thought of all this when we moved to Northern CO over ten years ago. I had many friends there in CA but wanted to move with my family to where they now live. I am very happy here and able to live within my means here as well. So we must all look forward to the future.
I wrote a response to a Bible study I was in just a few months ago and it read:
God’s Blessings in my Past
In essence I wrote that God helped me when I was 6 years old to find places to live. God was always with me in new places. God gave me pen pals, and protected me. God gave me Keith, my son. God helped me through a difficult divorce, and gave me jobs to keep food on the table. God gave me Debbie to help me in times of sickness (my daughter-in-law). God gave me 4 granddaughters and gave piano lessons as well. God gave me a friend, Don, and an Art class in which to enjoy and relax. God gave me volunteer groups and a good education. Finally God gave me a bright cheery house with a window facing the heavens.
You are absolutely right, Lois. We can’t go back, so we might as well praise God for what we have now. I guess it is the road not taken- no matter which path we take in life, we wonder if the other path would have been better.
Yet again, your topic has struck a chord with me. Although my husband and I always dreamed of retiring to Florida, the reality of the move brought regrets of leaving behind the place we both grew up in and a lifetime of friends and family. In addition, when the time came for us to retire and make the move, we made the decision to have our daughter move with us. She had been struggling for years with anxiety and depression. Although the move meant leaving behind the home she grew up in, her friends and family, the promise of a brand new start in sunny Florida sounded like the right thing to do for her. She would get to spend time with her grandparents who had lived in Florida her whole life. She would get to go to her favorite places; Disneyworld, Sea World, Universal Studios and the beach. I thought all of this fun and sun would somehow be the answer. I looked forward to an improvement in her mood, the depression, the anxiety. We made it almost one full year and things were not really getting any better. And then the worst possible thing happened. I have had many moments wondering what would have happened if we had stayed in NY. I have to continuously remind myself of the many “happy” moments spent doing the things she loved during that last year, even if she was still struggling with depression and anxiety. Sorry to be burdening you with this….maybe I needed to vent a bit today. I am here for you if you need to talk, need a shoulder to cry on, or whatever…..
Thanks, Kathy. You are never a burden. You honor me by sharing. As I’ve said, I’m going through something that almost everyone experiences, but you had to face a loss no one should have to face. It helps to know you struggle with similar “what ifs.” We can never go back and we can never know what would have been “better.” If it helps, I think our loved ones usually understand our decisions and forgive any we made that might not have been ideal. Even if they don’t understand them and are not content with them in this life, I know they absolutely will when they enter heaven. I try to remember that every time I make a decision for my mom. I do what I think is right and now she will be okay, in this life or the next.
A stroke is a sudden change in quality of life but the roots must have been there before you moved. Sometimes staying in place hides the problems that begin slowly. We moved my mom from her home of 60 years with a very active life like your mother to assisted living because of some issues. After 3 years she was having significant memory problems and is now in a memory unit. Although my sisters and I feel sad, it is clear that aging is not something that you can stop. We realize now that my mom had been having problems for several years but had hiddened it from all of us. Being compassionate, caring and supportive is all you can do.
Thanks, Mary. I think you are probably right that there were problems that my mom was hiding. I saw, after I retired, that she was much frailer and more compromised than I knew.
My sister-friend and I often have discussions about quality of life. We both maintain that quality is more important than quantity and at this point, wonder whether or not we would accept cancer treatment that would leave us with horrible symptoms that prevent us from lifting our heads off the pillow in exchange for 6 more months of life. Our values will be tested when/if we’re faced with that decision. Quality of life means that I can interact with my environment and experience some joy and contentment without constant discomfort and angst. The trouble with that statement is that I may not be able to communicate that to my caregivers; my responses may be misinterpreted by my caregivers. I’m reminded of my father who was a bilateral amputee. If anyone would have said that my dad would experience quality of life without legs, I would have said “Never!” But, he did, and I believe that experience gave him permission to do some things he wouldn’t have with 2 legs. Our values will be tested when/if we’re faced with that situation. It’s like being afraid of the bear – I can say I’m not afraid when it’s not in my face.
Mona, you make such a true, honest point. We can have lots of ideas and philosophies about what we would want “if” we were in the situation, but we can’t really know unless we are really experiencing it. That reality comes back to me every time I make a decision for my mom. I know her and I know what her general philosophies have always been, but I also know that those ideas may have changed now that she is actually enmeshed in this sad condition. She can’t really communicate and, honestly, I think she is even beyond being able to analyze the circumstances and the options. I just do the best I can and try to believe she will always understand that, whatever I do, I am doing out of my passion to act in her best interests.
Quality of life is such a relative term, in my experience. With no limitations on health, money, or imagination, the possibilities are endless, whatever you want them to be in your life.
As health, money, and cognitive changes happen, quality of life changes its meaning. I’ve seen many people become embittered and angry. Others become more focused on living each present moment fully and on sharing and loving. So I guess, like everything else that’s truly important, quality of life is what you make it.
I’ve been a caretaker and at the bedsides of both my parents during illness and at the end of their lives. Despite their stated objectives when they were healthy that they didn’t want to linger, they each chose medical procedures that would give them a chance to live longer. Neither they, nor we, nor their surgeons knew what the exact outcomes would be, but we respected their right to choose. My dad died during the operation he chose; my mother had the hip replacement but developed complications that were not fixable per a second operation. An observer looking in could have argued that there was no quality of life for a bedridden lady, but my mother lived a rich and full 2 years more.
Terri, you are in a much more difficult place because you are making the decisions for your mom. She is lucky to have a daughter who stepped up to the plate and is willing to act in her best interests. It’s only my opinion, but even tho your mother can’t communicate, her soul knows you love her and are committed to keeping her safe for the time she has left. In my experience, end-of-life illnesses burn everything away but love, and we rest secure in the certainty and strength of that love.
Ana, thank you for your beautiful, comforting words. I love how you put it- that end of life illness burns away everything but love. That is so true in so many ways.
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