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 ocean in his boat, today my father is wheelchair bound with very limited mobility and extreme cognitive deficits.

My dad doesn’t 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’s not for the faint of heart, that’s for sure. 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. A U.S. navy veteran, 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.

Addendum:

My father died in January 2018.  I wish I could say his passing was a peaceful and dignified one; but it wasn’t. I was grateful to be with him when his earthly journey ended. Our relationship was complicated; many things were left unresolved. But I feel in the end, love transcended them all. Godspeed, Dad.

Sharon Coulter, MA, PPS, MA LMFT

For children, when they experience death of a parent, grandparent, sibling or best friend, we often are ill-equipped to know how best to help them. In my work as a psychotherapist and grief/bereavement counselor, I share the following fundamental tips with caregivers.

• Don’t use euphemisms. For example, don’t talk to the child about death as sleep. Research has found that children become afraid to go to bed, because they worry they might not wake up.
• Don’t avoid the reality by saying the deceased has “gone away.” At ages 7/8, children can understand that death is universal, irreversible, and has a cause.
• Don’t say God has taken the child because God could become something to fear/hate. If the family believes in an afterlife, the child needs to understand that concept for this explanation to be helpful.
• Do understand that the child may show anxiety for some time. This may look like sadness, irritability, acting out, mentioning death in conversation at odd times, difficulties sleeping, upset stomachs or headaches. School performance may also decline for a time as children may have difficulty focusing on their work. All are normal coping patterns and part of the grief process. Show love and understanding. Have the child see a pediatrician if symptoms are not diminishing.

• Do be honest. Don’t tell lies about how the person died and keep explanations very simple. The child may well need you to repeat them over the course of time. An exception to this would be if the child is young and will not understand the cause of death or it seems inappropriate to tell the child the cause of death, e.g. death by addiction or suicide. If you are unsure what to say because of the circumstances, speak with a grief counselor.
• Do let your child cry. Crying is healthy and releases hormones and energy that promote healing. Telling your child to stop crying or “be strong” will only result in emotions being released in other ways – often through anger.
• Do let your child know that family and friends are also sad. If the child is school age, do contact the school counselor and the child’s teacher and let them know what has happened so they can give the child extra support, time, and attention.
• Do talk about the deceased person. The healing is in the talking and the memories – difficult and happy ones.
• Do create traditions to celebrate the legacy of the deceased person. These can be simple or on a larger scale. Let the child be a part of the creation of these.
• Do consider that a bereavement group for the child may be helpful after a sufficient amount of time has passed. Explore the options in your area.
• Do find books to help the child process what has happened and their emotions. Your local librarian can provide you recommendations.
• Do remember your own self care. Parents/caregivers are often so quick to get the child help. Remember, you can only help the child if you are getting the support you need to navigate this extraordinarily complex journey.

Sharon Coulter, MA, PPS, MA LMFT

Where we put our focus may lengthen our lifespan

Growing research suggests a “cup half full” philosophy may improve our physical and emotional health and even our life expectancy.

One of the largest such studies out of Harvard’s T.H. Chan School of Public Health analyzed data from 70,000 women who answered questions about how they viewed their future. Data analysis showed that women who scored higher on the optimism scale were significantly less likely to die from several major causes of death over an eight-year period, compared with women who scored lower. Numerous other studies duplicate these findings—indicating that to promote our optimal health and wellbeing it pays to be optimistic. (link below)

5 Simple Ways to Embrace a more Positive Perspective

Tune in to gratitude

Where you put your focus grows. Put a jar in your kitchen or somewhere visible. Think about something you’re grateful for that happened that day or a good memory and write it on a slip of paper that goes in the jar. This can be your own jar or The Family jar. Watch it fill up.

Tune out the negative</

When you find yourself habitually focusing on negative situations or possible negative future events, stop that train of thought, acknowledge your negative thinking with curiosity and choose to turn to something that you enjoy – go for a walk, call a friend, turn on favorite music that you know lifts your spirits. Note – this may take persistence and practice.

Tune in to self care</

Self care is not about being selfish but about being responsible for our bodies and minds. That means eating healthy, getting exercise, ensuring we get regular sleep, reaching out for help when we need it. It also means having fun!

Tune in to self compassion</

Practice becoming more aware of the critic within you that may try to beat you up with overly high expectations. Be your best champion and show yourself forgiveness when you make mistakes.

Tune in to your local community</

If you have time, look to make a small positive change in your neighborhood and feel a greater sense of belonging. It could be helping a neighbor, volunteering, baking cookies for a charity drive. Esteemable acts build self esteem and to be positive we need to have healthy self esteem.

Tune in to mindfulness</

Mindfulness is akin to awareness of the present moment. Nature is particularly powerful as a means of tuning in to everyday miracles. Watch the sun set or rise, smell the roses in your garden, sit by the ocean, star gaze. When we purposely focus on the present moment and feel it fully, we nurture our capacity to deal with stressful events.

Harvard Study: https://www.hsph.harvard.edu/news/press-releases/optimism-premature-death-women/

Sharon Coulter, MA, PPS, MA LMFT