Uncommon Grief – Reflections on Navigating the Alzheimer’s Journey with a Parent

Written by sharon on . Posted in Blog

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My father was diagnosed with Alzheimer’s five years ago. As is common, the course of his disease has been slow and cruel and we have come full circle—our roles of parent and child reversed. Once a social, vigorous, active man who owned a thriving business and loved to ballroom dance, water ski, and navigate the waters in his boat, today my father is wheelchair bound with very limited mobility and extreme cognitive deficits.

My dad does not meet the criteria for what we psychotherapists call “orientation times 3.” Time and space have retreated to a distant place in his mind of diminishing memory and awareness. What he still hangs on to is his identity. He knows his name. Gone is the time when he could say my name and call me his daughter. Yet, today he recognizes still that I’m someone special—it is in his eyes, his smile, and the way he kisses my hand when he sees me.

Losing one’s parent little by little to the disease of Alzheimer’s, a form of dementia, is a harsh and life-changing experience. It is not for the faint of heart. As someone who practices mindfulness and being present centered, it has posed the interesting question for me: if I cannot remember from one moment to the next what just happened or what event just took place, does my experience of that moment really matter? Memory is a beautiful thing as it allows us to replay a joyful experience over and over in our minds and to share it with others long afterwards. The conclusion I’ve come to is, yes, every moment matters. My father can still experience the joy of the moment. Thirty minutes later that moment may be wiped from his memory banks but that doesn’t make it any less real and precious.

Recently we were out at the marina. I had maneuvered the significant logistical difficulties to take him out of his depressing skilled nursing care facility down to the ocean where I know he enjoys the boats on the water. This is a place that meant so much to him for the majority of his life and where he found great peace and a sense of adventure.

On our arrival, I already felt mentally and physically fatigued. As is now customary, getting my father out of the car is a complex affair. He dismissed the waiting wheelchair with a wave of his arm and motioned that he would try to walk with his walker, something that is extremely challenging for him now. His gait was incredibly slow as he bravely put one foot in front of the next and steadied himself. I watched as he looked out towards the ocean with an aliveness I rarely see, on these days that are mostly lived from his bed. I was by his side trying to facilitate his proud independence while at the same time staying close enough so if he should falter I could steady him or, God forbid, stop a fall to the ground altogether. The smile stretching across his face as he watched the boats and felt the ocean breeze warmed my heart.

A stranger nearby, a middle-aged man, was watching us and could hear my words of encouragement as I coaxed my father to walk a few more steps for a better view. The man approached us and wished us a good day, and he said to me, “I hope you know what you’re doing is really important. I have a feeling that probably nobody ever tells you that but I want to tell you that I know how hard this is. Can I give you a hug?” He was looking deeply into my eyes and I could see there was nothing calculated in his approach … his words were heartfelt.

Strangers, we stood out there on the dock and he gave me a bear hug. Feeling deeply connected for a brief moment in time, I hugged him back and felt the tears running down my face. I thanked him quickly and my father and I continued. I knew I wouldn’t see this person ever again most likely. It was a beautiful gift that reminded me how profoundly we are all connected—in our joy and pain—and that even when we may feel alone, the human experience is universal.

Teenage Turbulence Survival Tips

Written by sharon on . Posted in Blog

Is it hard to remember the happy times with your “good” kid amidst the increasing distancing, disdain, disrespect, or downright volatility of your teenager? Take heart if this is your current experience because you’re most definitely not alone. What’s most important is how you interpret these changes and the ways in which you respond to your teen. Much of this behavior is age appropriate. The most important thing you can do is remember this is a phase. Don’t take it personally but keep them accountable.

Let me repeat that: don’t take it personally but keep your teenager accountable for their behavior.

The truth of the matter is that your teen is experiencing a chaotic time and some will navigate these difficult waters better than others. Think back on your own adolescence: would you want to go back to that, again! Hormones are raging, friends are changing (daily), school is becoming more complex—academically and socially—and the innate desire and need to individuate (be one’s own person) may well be pushing your teen to break away from his/her safety net – the family. A death, divorce, marriage, geographic move are only a few examples that may add another layer of complexity to your teen’s life. How to balance respecting your teen’s burgeoning desire for greater privacy and individuality and establishing parameters that maintain his/her safety and a respectful and cooperative atmosphere in your home is tricky to say the least. Indeed, it is an ongoing process. Equally important is the need to be watchful for signs of “acting in” manifested as isolation, depression, and anxiety.

The following are some guidelines for dealing with everyday teen challenges:

Connect with Your Teen
Despite the struggles between you and your teen, your ability to maintain a loving connection is critical if you are to have any kind of influence over him or her. Develop a ritual of checking in with your teen at the end of every day—it could be over dinner, in their room, driving home, or during an activity your teen likes. Let them know it was a difficult and confusing period of your life. Avoid asking your teen questions that require one word answers. Ask them HOW their day went: what was fun about it and what was stressful. Briefly let them know what was difficult about your day. Address changes in mood and behavior in your teen by remarking on the fact that they don’t seem themselves and you’re concerned. Ask them if there’s anything they’d like to chat about that may be bothering them. If your offer to talk is rebuffed, don’t take it personally. Just let your teen know that if they want to talk at a later time, you’re available, and you love them. Yes, continue to tell your prickly teenager that you love them and affirm as many positive behaviors as possible (even the littlest things). This is vitally important as teenage-hood is typically a time when teens feel that all their parents do is pick on them.

Rude Behaviour – Formulate a Response Plan
Develop a spoken mantra such as, “We’re respectful to one another in our family” and model it as frequently as you are able. Should your teen act out or try to suck you into a power struggle, refuse to accept the invitation. Just because your teen wants to argue a point, doesn’t mean that you need to comply, and getting into a shouting match with a yelling teen is a losing battle as it only fuels the emotional fire and demonstrates your loss of control. There is nothing wrong with letting your teen know you are angry at their behavior and need time to cool off before you can speak with them about what has transpired and decide what consequences will follow. The key here is to address the behavior. Your teen’s anger or rudeness does not mean he/she is bad, lazy, etc., and labeling your teen in this way is damaging to their self esteem. It’s the behavior that is unacceptable.

Formulate a plan that has appropriate consequences and that match poor behavior or broken rules. Keep in mind that consequences are NOT meant to make your teen feel powerless. Rather they are to 1) set limits; 2) motivate your teen to do something different; and 3) help him/her not to repeat the behavior. For example, you tell your teen she isn’t going out with her friends until she’s straightened up her room. She verbally abuses you by calling you a derogatory name. Name calling is verbal abuse and should not be tolerated. A consequence could be that she’s grounded in her room until she writes you a letter of apology for cursing at you and tells you how she will deal with the situation differently if it occurs in the future.

When What You’re Doing Isn’t Working
If your teen appears distressed or anxious over a prolonged period of time or your strategies aren’t working, visit your pediatrician to have your teen medically assessed and meet with your teen’s school counselor to discuss any school issues they can shed light on. Poor behavior is almost always paired with poor grades. You may also want to consider joining a parent group and consulting with a psychotherapist for yourself and for your teen.

Where real change happens

Written by sharon on . Posted in Blog

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The Trapeze Story – by Danaan Parry

Sometimes I feel that my life is a series of trapeze swings. I’m either hanging onto a trapeze bar swinging along, or, for a few moments in my life, I’m hurtling across the space in between trapeze bars. But most of the time, I spend my life hanging on for dear life to that trapeze bar, the one I have for the moment, that carries me along in a certain steady rate of swing, and I have the feeling that I’m in control of my life. I know most of the right questions, and even some of the right answers.

But, once in a while, as I merrily or not so merrily swing along, I look out ahead of me in the distance and what do I see? I see another trapeze bar swinging towards me. It’s empty. And I know, in that place in me that knows, that this new trapeze bar has my name on it. It’s my next step. It’s my aliveness coming to get me. And in my heart of hearts, I know that for me to grow, I have to release my grip on the present, well-known bar to move on to the next one.

Now, each time it happens to me, I hope – no, I pray – that I won’t have to grab the new one. But in my knowing place, I know that I must totally release my grasp on the old bar, and for some moment in time, I must hurtle across space before I can grab onto the new bar – and each time, I’m filled with terror. It doesn’t matter that in all my previous hurtles across the void of knowing, I have always made it. Each time, I’m afraid that I will miss, that I’ll be crushed on the unseen rocks at the bottom of the chasm between the bars. But I do it anyway.

Maybe this is the essence of what the mystics call “the faith experience.” No guarantees, no net, no insurance policy. You do it anyway because, somehow, to keep hanging on to that old bar is no longer on the list of viable alternatives.

And so, for an eternity that can last a microsecond or a thousand lifetimes, I soar across the dark void. The past is gone; the future is not yet here. It’s called transition.

I have come to believe that this is the only place where real change happens. I mean real change, not the pseudo-change that only lasts until my old buttons get punched. And I have noticed in our culture that this transition zone is looked upon as a no-thing, as a no-place between places. Sure, the old trapeze bar was real and the new one coming towards me, well, I hope that’s real, too; but the void between us is just a scary, confusing, disorienting no-where that must be gotten through as fast and as unconsciously as possible. What a waste! What a waste.

I have a sneaking suspicion that the transition zone is the only real thing, and that the bars are illusions we dream up to avoid the void, where real change happens. Now, whether or not my hunch is true, it remains that the transition zones (paradigm busting times) in our lives are incredibly rich places, and they should be honored, even savored. And with all the pain and the fear and the feelings of being out of control that can accompany transition, the transition zones are still the most alive, the most growth-filled, the most passionate, expansive moments in our lives.

And so, the transformation of fear may have nothing to do with getting rid of fear, or making fear go away, but rather giving ourselves permission to hang out in the transition between trapeze bars. Transforming our need to grab on to that new bar is allowing ourselves to dwell in the only place where real change can happen. It can be terrifying. It can also be enlightening, in the true sense of the word.

Hurtling through the void, we may just learn that ALL ALONG we have always known how to fly.