By my sister, Lee ReadSaturday, December 5th 5:57 AM. 2009
Written a few days before my father died.
A moment ago, after hearing your ragged breathing over the baby monitor, I tiptoed into the bedroom and placed a tiny drop, a “pediatric dose” as Dr. Britton called it, of Morphine in the corner of your mouth. This was the second time that I have used the Emergency Hospice box tucked away in our refrigerator…the one revered and feared by all…and of course, even the WORD “morphine” brought tears to Mom’s eyes this afternoon when Dr. Britton suggested a small dose to help you feel better. Morphine is so associated with that dreaded end-of – life carei dea…it’s difficult to understand that we are, in fact, there…and, of course there are so many different feelings even in our small family about what that means, that it has forced me to think even more acutely about the life that we are caring for.
As I read the recent recollections of your grandchildren and my other siblings, I am drawn to the striking similarities, the character traits described by each person without collaboration or prior knowledge of each other’s written thoughts. The consistency of language across their letters expressing the warmth, security, comfort and love that simply being in your presence has given each of them is astounding, but not surprising. We have all been the lucky recipients of your generosity of love, attention, intelligence, creativity, spirit, time and advice. This unequivocal knowledge is something that we share regardless of our feelings about your current situation or our generational relationship to you and it is the greatest monument to your
legacy, your enduring and ongoing presence in our lives. It is supposed to snow this morning…within the hour…the earliest snow
In Atlanta in recorded history. You slept soundly through the night last night, A first in your own recent history.
For the past two years, you have been waking at odd times most nights. This is normal behavior for Alzheimer’s patients. You have had some flip-flops in your day and nighttime activity for a good while. We have tried help flip you back to a normal schedule with numerous meds and as many strategies, for months, but with little success.
In the beginning, your nocturnal activities included wandering from the bedroom into the living room to wake Mom from her sofa sleep in front of a late night show, to encourage her to come back to bed with you.
As your nighttime wandering and activity increased, you enjoyed washing the dishes in the kitchen… occasionally forgetting to turn off the water running in the kitchen sink, but generally harmless activity. At some point every night for more than a year, you raided the freezer for frozen treats… popsicles, Eskimo Pies, ice cream sandwiches…always passing by the front bedroom on the way back to your bedroom to share an extra one with Charlie or me and returning to your bedroom to share another with Mom who had long since passed out on top of her nightly addition…the AJC crossword.
Occasionally a package of frozen pork chops or other perishable was found later…tucked away in a hidden spot. All of this harmless activity was endearing in the way it demonstrated your charity and industry, your frugality and your creativity.
Often, you enjoyed sorting through the corkscrew drawer in the kitchen, pulling them all out and trying to retrofit them by attaching them to one another or to other kitchen utensils in new and creative ways…by the way…why in the world do we really HAVE so many of those damn things? You began to experiment with bathroom collages in the sink or commode, working with new and unusual combinations (sometimes a little dangerous) of bath and cleaning supplies, but just as often you were content to quietly sort and count your coins while sitting on the edge of your bed, far into the night.
As your cognitive and physical health has declined, this nighttime activity has become more and more dangerous for you. You are now unable to make it from the bed to the bathroom or kitchen without stumbling or grasping for something…even falling, but you continue to try, to try to take care of yourself and others as you have always done. In the past week it has become clear that you cannot walk without dramatic assistance even for a tiny distance. Your care has become more than a matter of oversight; it has become a task requiring 24 hour vigilance. So, we are in the midst of many decisions about how best to care for you. Do we hire a professional to stay awake each night while we sleep? Do we continue to aggressively give you regular medicines, monitor blood sugars, administer heart medication? Which meds are for comfort, which will prolong life? What are you able to eat and how do we feed you? What tools do we need to have in order to properly care for you and for what end?
Last night was the first night that you have slept through the night without waking for many months. This was after some dramatic changes in your medication and some bold discussions with Hospice and family members this afternoon about your condition, your care, our goals, our concerns, our readiness to accept your passing and our physical and emotional strength.
Yes, we are all worn out…worn with worry, worry that you are not comfortable, worry that we will lose Mom through her endless effort to care for you, worry that we are not giving you the most appropriate care, worried that we don’t know or even agree on what appropriate care for you is at this time. And yes, it is difficult to witness your decline and to experience the continual chaos that Alzheimer’s has introduced in our lives. But, one of the odd things is that I doubt if any of us worries about forgetting the person you were in “real life.” Your instruction and impact on our lives for has been so huge that it is impossible not to consider how rich and full our lives are because of your character and companionship. You continue to exhibit gentle temperament, warmth, joy, and spirit even in the midst of tremendous cognitive and physical changes.
You still chirp “thank you” when you receive help. You continue to join us and to sing along with the traditional family blessing over meals, as corny as it used to seem to me, particularly knowing your non-religious stance. You snuggle in bed with Mom every morning and drape your arm over her shoulder “teenage-style” on the sofa in the evening. You chuckle along with Molly when you hear her deliver a good story or joke. You brighten beyond belief when Charlie enters the room or Henry engages you in a “business” discussion. You greet Max and pat his back when he gets home from school each day. You giggle with delight when your beautiful granddaughters arrive. You are so full of warmth, grace, character, good will, and agape that it is clear that there is some constant, some essential “Henry”, that is surviving this terrible, terrible disease.
On the other hand, the loss of your communication ability, one of your most aggravating and at the same time, endearing properties in “real life” and the loss of your thinking ability, the ability to offer enlightenment, deliver a story, devise a plan, develop a project, provide support…all of those tremendous gifts of the past are still with us, but only because they were previously given regularly and without hesitation.
Did we thank you? Did we recognize them when you could receive our gratefulness, our praise? I hope so, and I hope that you somehow sense that the love and energy we are offering to you in this time is a reflection of the gift of your love, your life and your lessons. I am grateful that you are not aware of our level of concern or care at this time because I know that you would never have tolerated the situation.
I can hear you back in the ‘60’s talking about the Hemlock Society…What would you do if…was it Communism or nuclear war? …and, I can extrapolate to this current situation enough to know that you would not have wanted to be in this physical or mental state if you could have chosen not to. But you didn’t really have that choice. This disease is so insipid, so sneaky, so ugly…that it takes that ability to “choose for oneself” away (an important lesson to those of us thinking about advanced directives). No. There is nothing beautiful about Alzheimer’s. NO sweetness, no redemption, no opportunity to reflect on one’s life as the end of it nears.
It is a thankless, heartbreaking disease and even though I would do anything to care for you in this condition, I know that you would have abhorred the necessity for that care.
We agreed yesterday to take advantage of a Hospice Respite service…a 4 night/5 day “rest” from caring for you ourselves…perhaps more out of uncertainty about HOW we are caring from you, than from the fatigue of caring for you. I know that you would understand this and wish it for us, but it is hard to let you leave this home even briefly, when what we really want for you is for you to be here when you are able to finally leave us. So, soon you’ll be leaving us for a time and resting while we also rest and reflect, rejuvenate and reassess what we need to do in order to best care for you.
My greatest wish for you is for you is for you to be able to leave on your final departure with dignity and comfort, to know with certainty that you are loved and to be surrounded by those who love you when that happens.
Did I say thank you? Thank you for allowing me the opportunity to learn and grow, to make mistakes and celebrate success, to watch and wait, to hope and grieve in your presence and care. You are our fearless and intelligent captain and the course you have chartered with your gift will pulse through the waters or our lives… through new and ever-changing horizons, waters smooth and turbulent. Thank you the bountiful gift of your life, your love and your lasting lessons in life.