The Long, Slow, Goodbye

August 11, 2014

My mother has Dementia.

Or Alzheimer’s. Her doctors have never given us a diagnosis with 100% certainty. What it’s called really doesn’t matter though. What we do know without doubt is that my mother’s memory has been slipping away progressively and alarmingly for the last 5-7 years, and in all likelihood, the process has been going on for much longer than that. The disease is slowly strip-mining away her memories, personality, intellect, and any other mental quality with which she would define herself as an individual. She looks like herself, sounds like herself (apart from the largely incoherent nature of her speech), and has most of her lifelong mannerisms and quirks, but the mother I knew now really exists only in my memory.

Very few of my friends are aware of this situation or the heartbreak and turmoil this disease has put my family through. My father has certainly had it the roughest. My parents are boomers and were married young, raised two sons, had successful teaching careers, and have never been apart from each other for more than a couple days during their entire marriage. This disease however, has slowly robbed my father of his best friend, companion, and wife of fifty years. Not all at once though. Dementia picks away little things, one by one, with seemingly infinite patience until one day those little things add up to a big whopper, such as when my mother asked my father if they had attended my wedding 8 years ago. (In case you are wondering, yes they had).

Not only has it broken his heart, but it’s forced him into the role of her 24-7 caregiver, a job he could never have been prepared for. When a couple gets married and they recite the “Through sickness and in health” part of their vows, few imagine having to make good on that pledge to such a degree. Despite that, my father has been an amazing and compassionate caregiver for my mother as her condition progresses. In our somewhat unconscious denial of the severity of my mother’s disease, I think my father, my brother and I imagined that he could go on indefinitely providing support for her. Such is the nature of this situation, you want to believe everything is normal and that we can always make it work so we can maintain our own level of comfort.

That’s a dirty lie.

If you know of any Alzheimer’s or Dementia caregivers or read up on the subject, you’ll know the experience is incredibly taxing and can take years off the caregiver’s life, due largely to the amount of chronic stress they are under day in and day out. This was the effect upon my father, a man now 75 and a veteran of not one, but two heart bypass surgeries. My brother and I could see the wear and tear showing on him and realized that something needed to change, not just for Mom, but for Dad as well. So about a year ago, he accepted the help of a part time caregiver who would come to the house a few days a week to help out with Mom. For a while this leveled the playing field and gave my father a respite. But in time the disease upped the ante. New challenges, changes in my mother’s behavior, and the ever pressing concern and uncertainty about the future and what next steps should be considered.

All the while, I (and perhaps my brother as well) tried to go about business and usual, often avoiding thinking too hard about what the future would hold because, honestly it was just too painful. Nobody wants to consider that their mother is going to forget them sometime in the not so distant future. But despite the largely automatic and unconscious adjustment to the “new normal” I would reset to after each visit with my parents or update from my father, the situation was never far from the front burner. It was always there, reminding me of the uncertainty, the impermanence and frailty of our human existence. The byproduct of which was a tangible level of emotional toxicity in the form of anger. Not anger at someone or something, not even the disease that was taking my mother away from us, no; this was free-floating anger that seemed to settle on whatever turked my canister that day. I felt I was doing a semi-decent job keeping the anger in check, but it was still eating me up inside. As is typical for me, I turned a portion of my anger toward myself and it split off into its step brother – guilt. I was awash with guilt. Guilt for living so far away from my parents in Florida. Guilt for not being able to help my father more. Guilt for not more aggressively encouraging my parents to eat healthier, get more exercise, and meditate (all of which I believed may have slowed the manifestation or progression of the illness). Worst of all, guilt for not knowing what to do. Anger, guilt, helplessness. I felt like I was doing shots of that cocktail on a daily basis. It’s only now, with a certain degree of awareness and hindsight that I can see the insidious way the disease was messing with my head and heart.

Thus was my mental/emotional state for my most recent trip to visit my parents, a trip during which Dad and I would visit the assisted living facility that we hoped would accept my mother as a resident and patient. I flew home to Pennsylvania not looking terribly forward to the experience. I typically love to go home and stay in the house I grew up in nestled in a country valley surrounded by 92 acres of rolling Pennsylvania hills, but this was different. After a recent visit of his own, my brother recommended for me to get up to see Mom and Dad as soon as possible so I could adjust and accept my Mom’s current state as well as provide some desperately needed emotional support for my father.

I made it home as soon as I could and for the most part; the trip was typical of my previous visits, but this time I really allowed myself to soak in the extent to which my mother’s condition had progressed and witness the toll it had taken on my father. We took it easy, spent lots of time sitting on the front porch or taking minor excursions out of the house to keep my mother occupied. My Dad and I talked a lot – about the symptoms of the disease, the overwhelm he was feeling, the uncertainty about what each new day would bring. All this we could discuss with my mother at his side, since she was in a world of her own and no longer had the ability to follow a conversation in any rational sense. Despite the pain, it was a very healing time for both my Dad and I. We grew closer in ways we had never been before, and for that I am deeply grateful.

During this visit another toxic emotional state began to pay me a visit: fear. I was after all, my mother’s son. What if her condition was genetic? Could this happen to me? Had I been having trouble remembering things lately, or was it just the stress and mental static of the situation making it hard for me to think clearly? Despite being the most health conscious person I knew with my my vegetarian diet, daily meditation practice, regular yoga, strength training and martial arts workouts, I was suddenly terrified that I too could experience what was happening to my mother, but this time from the inside out. Fortunately, I was able to talk myself down off that ledge, at least for the time being. This trip wasn’t about my selfish fears or worries. I needed to be present for my Mom and Dad. This fear did however help to cultivate an important shift in my awareness by helping me to empathize with my Mom, if even just a little, and understand how horrible this disease must be for its victim, especially if you know it’s happening to you. What a nightmare.

On the Sunday of my long weekend visit, we toured the assisted living facility in which we were in the process of applying for. It was a beautiful and modern place, filled with a loving staff, pleasant accommodations, and regular activities scheduled on the half hour to give the residents the very fixed and active routine so important to Alzheimer’s and Dementia patients. All of this was a challenge to take in, but the kicker was when my Mom was encouraged to join into one of the group activities. The residents were in the large common area watching a senior’s exercise video set to music from long ago. Within seconds, and I mean seconds, my mother was studiously watching the video and moving in sync with the instructor on the screen all to the tune of “Bicycle Built for Two.” My Dad and I stood in the rear of the room and watched how well my mother fit into this environment…and we promptly went to pieces in each other’s arms.

This was a good thing, though. As Mom enjoyed the exercise class with the other residents, it gave Dad and me the change to sneak away to chat with the facility administrator and ask all the questions we needed answered. We left feeling emotionally wiped out, but safe in the knowledge that this was the right thing to do for both Mom and Dad. And this was the right place. It’s not what anyone ever wants to think about – putting one of their parents into even the nicest of assisted care facilities. We all want to believe that our parents will always be able to take care of themselves in their own homes the way they always did when we were children. Sadly, the reality isn’t always the case. Placement such as we were planning for my Mom wasn’t what anyone truly wanted, but under the circumstances, it was the happiest ending we could hope for amidst the rubble left in the wake of this disease.

This decision would also bring about additional changes that were hard to anticipate. My Dad would be on his own. In the past 50 years, my Dad has never been on his own. Granted, the last few years, he’s been functioning more and more as an independent entity, my Mom might be perpetually at his side, but in most ways he’s been alone. But now he would be physically alone as well, and this would be a BIG change. The facility administrator recommended that the family members of new residents stay away for one to two weeks to help in the acclimation process. How well would my Dad handle this time alone? Would he have the opportunity to rest and recover from the 5 years of nonstop caregiving he had been providing for my Mom, or would it tear him apart? So many questions. But once again, we all realized this was the right thing to do and some bridges can’t get crossed until you get to them.

As I type this I’m siting in my old bedroom on the day I’m due to fly home to Florida. The words above are what’s been baking in my mind over the last 24 hours and I’ve felt the need to write them down. This experience, and I say that knowing it is far from over, has been the hardest thing my family has ever been through. However, as I’ve come to learn through my life, perception is reality and the way we choose to look at and interpret a situation has great power over how it will influence us. I’ve worked hard to find something positive in this situation, and while I can’t promise my insights are life changing or profound, they are mine, and are for me, completely valid.

First, as a student of Yoga and meditation, I can’t imagine how I would have made it to this point without these practices to help me stay grounded and connected to my spirit. Situations like this test you to the very core of your being, and if you have a place of stillness to return to, to let go of the stress, the emotional toxicity and heartbreak, to have a point of self referral that doesn’t change when your whole world is topsy-turvy, it can be extraordinarily helpful and healing. In addition, one of the key principles of the Yoga philosophy is that of the impermanence of the world in which we live. No matter how we might try and deny it, everything changes and transforms. Friends and family grow old and die as will we. This isn’t meant to be morbid, it’s simply the way things are. If we can become comfortable with this impermanent nature of our lives, we can cherish our time together and not take it for granted. It’s also important for us in recognizing the difference between pain and suffering. In life, pain is a part of existence, but stuffing is optional. Does it hurt that my mother doesn’t really know who I am any more? Yes, it does. But I know that agonizing over it again and again robs me of the joy life has to give me in the present moment. Though not always easy, I try to feel the pain, process it, release it and move on. I’m not an expert, but it’s a work in progress and it helps. This philosophy also helps me to have some closure with the ongoing grieving process as the result of the slow-motion loss of my Mom. A materialist might believe that my Mom’s mind and who she’s been is utterly gone, never to return. The worldview of Yoga however, holds that our mind isn’t in our body or brain; our brain is simply the instrument with which we download our soul. For me, my Mom’s true self hasn’t been destroyed, rather, the instrument has been damaged, preventing the signal from coming through. She’s still there, just in a way we can’t reach right now.

This experience, as any emotionally traumatic experience can, has shifted my perspective toward what is really important in life. As I look at the world through the media or Facebook (to which I’ll admit, I have often become more than a little attached to) I see so much nonsense. Utter nonsense. Whether it’s politics or celebrities, countless surveys or polls, or hyped up stories to hook our attention and generate meaningless melodrama, it’s all so far from what’s really important in life. Ultimately what matters is our loved ones, family friends and those we care about. Wasting precious time in meaningless, trivial online nonsense only robs you of peace of mind and the true present. Let it go. Go spend time with those you care about. Live a life worth remembering, rather than commenting on what everyone else is doing.

Take care of yourself. Health and Wellbeing are precious commodities that should be cultivated and respected. Make the most of the time you have by our enhancing your mind, body and spirit. Take responsibility for your health rather than outsourcing it to another. Over 75% of all illnesses are lifestyle related and therefore largely preventable. Do I know that my mother’s condition could have been prevented with lifestyle changes? Absolutely not. I won’t even go there because no one can know that. But what I do believe is that we should do everything we can to keep ourselves healthy and fit so we can be with the ones we love for as long as possible. Creating a healthy body, mind, and spirit is not an activity to put off for a rainy day. Get off the couch, stop eating garbage, manage your stress, and LIVE!

Lastly, for me it was important to remember the words of Winston Churchill who said, “When going through hell, keep going.” My Dad and I both reflected on how there’s no instruction manual for dealing with this. Fellow caregivers offer much in the form of encouragement, suggestion, and camaraderie but like life itself, it’s essentially a pathless path. We read, we try new strategies to help my Mom, we accept and surrender to the things we can’t change. But in the end, the only way out is through it. But the important lesson for both my Dad and anyone else going through something similar is to remember above all else, you are not alone. Others have been through this and can help. Friends and family and a support network is vital. Strength in numbers, shared collective consciousness, whatever you want to call it, helps to give strength to the weak and hope to the hopeless. With them by your side, either physically emotionally or in spirit, keep going.

As such I am so grateful to all those who have reached out to help or just listened to me get some of this off my chest, including you if you’re reading this. But in particular my gratitude goes out to my wife, my brother and sister-in-law, and a host of dear friends who have never been far during this tough time. Thank you all.

In the end we’ll make this transition as a family and as best we know how; with love, compassion, and understanding. We (my Dad, brother, and me) have a wonderful support system of friends and relatives and we are fortunately in complete agreement as to what’s in my parents’ best interest. As I mentioned earlier, writing this down has been its own form of therapy for me. But there will undoubtably be new challenges to overcome as this experience changes us. If sending prayers, intentions, or healing thoughts are your thing, we’ll be happy to be on the receiving end.

Thanks for your concern.