Joan Sutton2013-05-20T17:52:02-04:00Joan Suttonhttp://www.huffingtonpost.ca/author/index.php?author=joan-suttonCopyright 2008, HuffingtonPost.com, Inc.HuffingtonPost Blogger Feed for Joan SuttonGood old fashioned elbow grease.My Life as an Alzheimer's Widowtag:www.huffingtonpost.com,2013:/theblog//3.29448992013-03-24T14:25:02-04:002013-03-24T23:03:16-04:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
Given that the last seven were spent in the company of that thief, Alzheimer's, years in which bits of my husband were stolen away from me, day by day, week by week, month by month, one might wonder why the actual death is so painful. I expected that I would feel relief, a burden lifted, but that has not happened. It is puzzling. Surely I have been saying goodbye for years? Yes. But in those years, there was presence, the weight and sprawl of a body in bed, the sound of breathing, the touch of warm skin. With presence, there was possibility. Now there is absence, and with that, certainty. Period. The end.
In the beginning of this new status, I was numb. There was much to do, people to notify, a service to be organized, others to be comforted, paperwork to put in place, letters to answer. And then there was exhaustion, a deep, years old fatigue of body and the spirit, the sum of years of sleeping and yet, not quite sleeping. Now, I slept. And slept.
Awake, I did not know what to do with my days. I was unmoored, lost. I wanted to be alone. I wanted company. I made appointments, then cancelled them, started something, left it undone, wandered through the apartment marveling at how noisy silence can be. I never understood why people would turn on the television and leave it on when they were not watching it. Now, that nonsensical murmur is my companion too.
Grief was set aside, but it was there, clamouring to be let out. It came in many guises: a terrible restlessness that made me want to run; an unfocused anger; lack of patience with nonsense; and, to my surprise, it assumed physical form, nausea, attacks of hyperventilating. The tears were beating against my skin, constant, contained, but there.
I comfort myself with things. Walking the dog, I wear my husband's scarf and gloves. I sleep in his nightshirt, wrap myself in his cardigan when there is a chill. Touch his ties, his shirts, his jackets. Savor the remnants of Eau Sauvage; turn my head at the smell of a cigar. To the cigar, not from it. Consider the last bottle of wine he ordered, decide to save it for another day.
People reach out, and I appreciate that. I want to talk about my husband, to hear stories about him, to know what he meant to others, and, especially, to share anecdotes that have, at their heart, laughter. There has also been an onslaught of advice. Move. Don't move. Go back to Toronto. Stay in New York. Do something. Do nothing. Don't throw anything away. Call in the Salvation Army and get rid of everything. My favorite; wear more rouge. The yuckiest: which dating service to employ. Please!
People tell me I am lucky. Lucky to have known such a love. Lucky to have such glorious memories. Yes. True. But that is also the source of the pain. The greater the love; the greater the sorrow. People tell me that life goes on and yes, I know that. That is why I weep. I sit in the park with our dog, and I see life going on all around me. How can that be? Should the world not stop when such a splendid human being dies?
There has also been a plethora of articles and books on how to grieve. What, I wonder, did previous generations do without all these how-to manuals? Has all this instruction made us any better lovers, parents, managers of money, crises, our planet, than our parents were? Is there any part of life today that has not been commercialized, turned into a get rich formula for someone?
Fortunately, all the advice on grieving and mourning come to the same conclusion: each person has to find their own way. I am glad of that. My marriage was mine, unique to me. I want to own my own mourning too, thank you very much, not have it reduced to a common denominator.
This week, number ten of being a widow, will also mark what I suspect is just the first of a year of terrible firsts. A 34th anniversary, with no husband to raise a glass to me, and ask whether I would do it all again.
Yes, my darling. I would do it all -- all -- even the last years --again. In a minute. But, for now, I relive it. And when I see a good looking man tip his hat at a woman, automatically assuming that she is a lady, I smile. And I cry. At the same time. That is how I mourn.]]>Comfort Me With Gestures, Not Wordstag:www.huffingtonpost.com,2013:/theblog//3.26229152013-02-06T07:55:20-05:002013-04-08T05:12:01-04:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
And you are thrust into all the arrangements that have to be made after a death; surrounded by people; moving one foot in front of the other through the public mourning, awash in paper work and unimaginable questions like "How many death certificates will you need?"
And then, and then. When I wrote in my last blog that I disliked euphemisms just as "passed", or "lost" rather than dead; and that I could not bear the word closure, some readers thought that I was criticizing individuals who might come to me and offer comfort using those words. That was not my intent. Tell me that you are sorry that I lost my husband or say how sad you were to hear that he has passed, and I will say "Thank you", and mean it. I will accept that this is the way you express your sympathy and I will hear your words with my heart.
I was railing instead at a society that thinks of sadness and tears as an aberration that should be treated with a pill or a visit to a therapist, and a culture that cannot accept death as part of the cycle of life. Of course, most of us are not sure what to say to someone when they have lost a loved one. How could we be when we use words to deny the reality of the end of life?
How should we comfort the bereaved? Toronto writer Jane O'Hara reminded me of an interview Toni Morrison gave to Emma Brockes in The Guardian. Discussing the death of her son, Morrison said:
"What do you say? There are really no words for that. There really aren't. Some people say, "I'm sorry, I'm so sorry. People say that to me. There's no language for it. Sorry doesn't do it. I think you should just hug people and mop their floor or something."
I can only say what works for me. What comforts me may well alienate someone else. But I will take hugs, absolutely. I can't get enough of them. And practical help. You don't have to mop my floor but please don't say, "Let me know if there is anything I can do", because I am never going to let you know. But bring me a casserole sized for one. Drop off some bagels. Make sure I am eating, because I am not. That first stab at shopping for one; cooking for one; sitting at the table where he sat across from me for so many years, now by myself: I still haven't been able to do that, and the idea is so upsetting, that I'd rather not eat. But if you drop by, bring a sandwich, sit with me, you will help me get over that hurdle.
I don't want to go to a noisy restaurant, to have to get dressed up. But ask me to your home, with just people who knew my husband, let me talk about him, make it casual and cosy. Don't be offended if I have to leave early. I am exhausted, and fatigue hits me suddenly like a moving train. Don't be offended if I make a date and then cancel. Don't be offended, period.
Be the friend who volunteered to address the envelopes to the many letters I will now write. Offer to take the dog for a walk. Come watch Downton Abbey with me. Bring the scotch. Tell me you are going shopping and ask if there is anything that I need. Help fill the silence of my life with a phone call, an offer to bring over a movie.
Be there when the others have gone because most of the people who surrounded me in the first week are back at their own lives. I am touched by the friend who waited for three weeks to get in touch with me because she knew that there would be fewer people around then. Be patient with me. There will be days -- there are -- when I don't want to talk or see anyone -- but the next day I am restlessly searching for comfort. Do not be upset with me if don't answer your call right away. I will, in time. Don't be embarrassed if I cry. Don't get bored with my sorrow. My grief is not a two week, or three week wonder. It is unpredictable -- a song, a bench, a man hearing a fedora -- any of those things can make me suddenly cry. And my guess is that will go on for some time.
Above all, talk to me, or write to me about my beloved. Make him live for me. Tell me how you knew him, what you learned from him, what you shared with him. We could have long debates about whether there is an afterlife or not, and if so, what form it would take. But we can surely agree that we all live on in the lives we touched on earth.
Tell me how my husband's life touched yours. Fortunately, I have received many letters like that, and they bring me joy. I read them with pleasure, often several times, take my time with them, and will answer them, each and everyone, a few at a time, day after day and preserve them for family members to also read. Don't be afraid to tell me something funny about my husband. Humour was a great bond between us and I love it when people share an amusing story about him. He would like to know that from beyond the grave, he can still make me smile.
Please do not disappear from my life. I know there are people who cannot deal with illness or death, because it reminds them of their own mortality. I feel sorry for them. They don't stay away because they are more sensitive than the rest of us -- it is because they are afraid and because of that fear, they cut themselves off from an important chapter of what makes us human. They have yet to learn that you can only truly experience life when you accept that death is part of it. Until then, you are living on the surface.
Others disappear because "they don't know what to say." To that, I say, say anything. Or say nothing. Bring a hug. Send an email asking "How are you?"
Just be there. Your continuing presence in my life is the tribute you pay to my husband, to your history with him, to our marriage and to the friendship I share with you. And words be damned, the friendship is what matters.
As to society, and our culture, I will continue to rail, in the hope that some small voice may be joined by many other small voices to bring about a change, so the day might come when we accept aging, not as "the new fifty" -- what nonsense!, but as the glory it is for itself -- when we enrich our every day, say what needs to be said, stand in awe at the wonder of our world -- all the more -- because we know our time on earth is limited.]]>After My Husband's Death I Don't Want Closuretag:www.huffingtonpost.com,2013:/theblog//3.25690512013-01-29T12:32:00-05:002013-03-31T05:12:01-04:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
With each funeral, we realize two seemingly contradictory things: death is the universal experience yet, every death is unique.
In our minds, we categorize them. If you are a parent, the worst, the very worst, has to be the fear of the death of a child. The pain from that would be unimaginable but, even so, we find ourselves imagining it. And when it happens to the children of friends, we see that the response to death is as unique as the dying. I have seen the death of a child bring a couple together in a way nothing else possibly could; and I have seen the different ways of mourning tear a husband and wife apart and with it, their marriage.
When the daughter of a man I loved died in an automobile accident, all joy died with her. He could not allow himself to find delight in anything. "Every sunset," he said to me, "every piece of music, every good book -- I think, she should be enjoying that, not me." Yet a woman whose teenage son died of leukemia went on to absorb that loss and continue to live an engaged life. When I asked her how she survived, she said, "I am just very grateful for the years he was alive."
Grateful. John Downing, a fellow Toronto journalist, shared with me a quote from Thornton Wilder:
"The highest tribute to the dead is not grief, but gratitude."
I understand that. I am grateful that my husband lived a long and productive life. I am grateful that I met him, that we fell in love, that we married, that we had so many years together. I am grateful that he died before Alzheimer's inflicted even more indignities upon him. I am grateful that he died before I could no longer handle the caregiving, that I have no remorse. And, above all, I am selfishly grateful that he died before he forgot who I am, that he remembered that I loved him, and remembered that he loved me, that those words of love were spoken.
The death that comes to an Alzheimer's patient whose self dies bit by bit long before the body does, is very different from the death that comes suddenly; the death that comes to someone elderly, is different from the death that strikes down a young breadwinner; the death that is the end result of a long fight with pain is very different from the death that steals a last breath while someone is peacefully sleeping; the death that comes from a violent act is like no other. All those left behind will mourn those deaths in different ways.
So, please do not tell me how to grieve. I weep no tears because my husband has died. I do weep tears for the lost years. I weep tears for the young family members deprived by Alzheimer's of the opportunity to truly know him. And, oh yes, I weep tears for myself, for the silence of the house -- how can it be so quiet, when it was never really noisy? I weep for the emptiness of the days that stretch before me without someone to care for, I weep for the uncertain future; I weep for the loosened ties. I am rudderless.
Do not tell me that you feel my pain, because you don't. None of us can feel another's pain. We can try. We can experience empathy. But we cannot truly feel another's pain. The skeins of life and emotions that are part of a person's grief and mourning are unique to that individual.
So, do not assign me a stage, as if the mysteries of the heart can be reduced to some cookie cutter psycho babble. I will experience the coming days, weeks, months, in my own way, and I will work through them -- or I won't -- in my own clumsy fashion. If, after a year, grief is still the dominant characteristic of my life then, you might suggest that I see a grief counsellor. I still might hit you. But I certainly will snap at you if you suggest such a thing now. Who would I be, what kind of woman would I be, if I did not shed tears for someone I loved and lived with happily and joyously for 33 years? Leave me to my tears and to the healing that only tears can bring. Leave me to what is natural for anyone who has loved.
Spare me the euphemisms. My husband did not "pass." He died. I have not "lost" him: I know exactly where his body is, and his spirit is with me.
And. Do. Not. Speak. To. Me. Of. Closure. What a hideous word. Closure. If you have truly loved someone, you do not ever want to close off the memory of that love, the richness of that experience.
Let me be strong enough to absorb this death into my life, let it deepen my understanding of the mystery of life, let it make me wiser.
Bring me acceptance but, never, closure.]]>Alzheimer's: Goodbye, My Lovetag:www.huffingtonpost.com,2013:/theblog//3.25221462013-01-22T08:50:15-05:002013-03-24T05:12:02-04:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
It was indeed, a long goodbye. Seven years spent with Alzheimer's.
And a final year, playing hide and seek with death.
We first felt death's presence a year ago. A beautiful, brisk bright January Saturday in Manhattan. We had lunch at our favourite French bistro and, although Alzheimer's had staked its claim, my husband was engaged with his surroundings, watching the many young families, smiling at the little girls, enjoying a Bloody Mary and a delicious lunch. Outside, he said his back hurt, and then that he had to sit down. Almost instantly, he was collapsing in my arms. Two men passing by, noticed, helped me get him to sit on a newspaper box, where he lost consciousness. They called an ambulance and the verdict: heart attack, followed by another heart attack in the emergency room, and a week in hospital.
He never really recovered from that experience. Once home, he seemed more confused and disoriented than before. Where he had walked, using a cane, now he required a walker and, despite physical therapy, never was able to recapture balance or the strength in his legs. But the most serious consequence was a loss of courage, on both our parts. The memory of him slipping away from me, losing consciousness in my arms was very strong. Because of that and other, more practical reasons, going out with my husband became more difficult. He was sleeping almost 16 hours a day, so our life revolved around home. We began to live in a even narrower world.
Then, death tapped on the door again. Breathing became more difficult. The diagnosis: congestive heart failure (chf). The verdict: time for hospice. Although an outside observer might have looked at my husband's life then and concluded that there wasn't much to live for, not much of what we think of as quality of life, clearly, he did not agree. Within three weeks, there was no longer a sign of chf, and his breathing was normal. He failed the hospice test -- he lived.
Death took a back seat, but Alzheimer's stepped up its pace, bringing more indignities to my gallant and elegant husband. Additional caregiving was required. Even so, we spent a summer at our home on Long Island where we enjoyed the garden that was my husband's creation, visits from family, and a long stay of two beloved Labrador retrievers, Clemmie and Luna who, when they were not playing docile females to our King Charles Cavalier, Brewster, monopolized the pool and then put large, wet heads on my husband's lap. It was a happy time. A never-to-be-forgotten two months of quiet joy.
Beside him, every day and every night, I did not notice the changes that were evident to those who did not see him so often. He was losing ground, both physically and mentally, weaker in the legs, needing a wheelchair more and more often, less and less aware. Still, when we returned to New York, to the excellent care of the Irving Wright Center on Aging, part of the extraordinary New York-Presbyterian Hospital, his vital signs were excellent, and there were many beautiful moments together. Around Christmas, there came some quite remarkable, isolated, moments when he was very lucid and showed flashes of his old sense of humour. They would catch us by surprise and, although fleeting, and unconnected, they were precious.
I decided to go back out to Long Island over New Year's. I told him we were going and he clearly understood that, and seemed to be looking foward to it, asking a couple of times when would we go. Our dear friend Dennis drove us out, my husband as always in the front seat where he and Dennis had more than once shared their assessments of the girls passing by.
Two days after New Year's, his speech was slurred. The next day, he had a small stroke. Local hospice was called in, and they advised me to suggest to the family that they come to say goodbye. But by that afternoon, he was sitting up in bed, able to say to a visiting son and grandsons, "Thank you for coming to see me." Had we dodged death once more? Later that day, he asked me, "Where are we anchored?" and in the middle of the night he insisted on sitting up, and said, "I need to go to San Francisco." He would never speak again.
His breathing became so difficult that we brought in a hospital bed. I thought that might upset him but by the time we moved him, he was in a coma. That night, me, alone in our bed, with him across the room, in a hospital bed, was indescribable agony for me. A separation of a few feet felt like miles. My children, his beloved step-children, arrived, along with a grandson and his wife. There was a constant rotation of people who loved him by his side, including our caregivers Martha and Gene and the extraordinarily caring nurses from The Brookhaven Memorial Hospital Hospice.
And, our dog, who stood on back legs, poking a nose through the rails to lick an inert hand.
One day, near the end of this vigil, my husband reached up, looked into my eyes, put his hand on my chin and turned my face away. What did that mean? Was he telling me to let him go?
Perhaps, because two days later, six days after that small stroke, I was sitting by his bed with my son. It was mid-afternoon. I looked at him, as he took a breath. I called out to the others who rushed to the bedside. And he was gone.
Wearing a pink silk pajama top, peacefully, softly, without pain, his beautiful mind, quiet and whole, at last.
See Joan's series about life caring for her husband here. ]]>Alzheimers: Caregiving, Seven Years Latertag:www.huffingtonpost.com,2013:/theblog//3.24324242013-01-09T07:57:27-05:002013-03-11T05:12:01-04:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
The grandchildren, whom he might or might not remember. When he doesn't, how does one soften that blow? The young men, who once looked to him for advice and mentoring: Now they try to bring the outside world to him, only to find a man whose focus is somewhere out there in the fog of the middle distance. Caregivers who are sometimes abused by a man whose default mode was once that of a gentleman: He might have berated the president of a bank; but never the clerk. His family, lonely for evidence of a connection to a shared past. And me, wife, lover, friend, companion, partner -- like my husband, I live in a half world. He is there, and he is not there.
I knew so little, and I wanted it to be not so.
The past seven years have been years of learning, of facing the inevitability of age, and what aging means, of stretching myself to accept new responsibilities. I am no longer the only caregiver and every day, and I bless the two members of our team, Martha and Gene, for the compassion and humour and attentiveness they bring to their roles. They watch over both of us, push me out the door when I need to get away, turn the growls to smiles.
Long before the Alzheimer's Association defined the seven stages of the disease, Shakespeare described the seven stages of man:
"All the world's a stage and all the men and women merely players;
And one man in his time plays many parts,
His act being seven stages..."
Shakespeare defines those stages as that of the infant, the whining schoolboy, the lover, the soldier, the justice "full of wise saws," the lean and slippered pantaloon, and concludes:
"Last scene of all that ends this strange eventful history,
Is second childhood and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything."
For me, until now, there were only two stages: before and after the heart attack. Before, the Alzheimer's moved slowly; his concentration was not what it was, he needed to be prompted to do things and helped to execute some, but we had a life. Then, a year ago, he had a heart attack on the street, and was taken by ambulance to the hospital where he received excellent care. But he has never recovered from that hospital stay. His decline, both mental and physical accelerated after that. I am told that this is a common experience -- that it is not a comment on the procedure (whatever it might be), or its success.
It's a variation on that old saw, "the operation was a success, but the patient died" -- the hospitalization did what it was supposed to do, but it left the patient weaker and more disoriented. It is not the doctors, or the nurses, or the surgeries; it is the hospital experience itself, lights, noises, strange faces, voices, and the consciousness such an environment brings that life is, for all of us, in the balance.
From then until this week, we dealt with the yo-yo progress of AD, plus the inevitable decline that is part of aging.
This week, exactly one year after that heart attack, we moved to a third and perhaps final stage in that process: My husband had a stroke. Decline is now the inevitable. Two weeks? Two months? Longer? No one, however skilled, can answer that. The body, the mind, the heart, they set their own timetable.
Throughout all this, I have found myself contemplating the mystery that is life. Heartbeat, pulse, breath, yes: those are the physical signs that life is present. But is it life? Or existence? Surely they are not the same. What do we mean when we speak of life? Recognition? Yes, recognition of self, of the senses. Responsiveness? Yes, an awareness of surroundings, taste, sensation, touch and above all, in the eyes, that light that says "I am not just a body. I am a unique human being. I am a soul." And perhaps, the recognition that I, too, am a unique human being, a soul, that I am still the wife who loves him. If he can give me that, as we near the end of our life together, I will be truly blessed.]]>Don't Let 26 Deaths Be in Vain -- Demand Changetag:www.huffingtonpost.com,2012:/theblog//3.23190942012-12-18T20:41:13-05:002013-02-17T05:12:01-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
I have raised two children. I have walked the floor with them at night, and I have waited at night for the garage door to close, finally able to breathe again, knowing that they were at last safely home. My heart has ached through various childhood illnesses, sports injuries, peer pressures, learning to drive, to date, to say no. Fifteen years ago, my daughter was diagnosed with stage three breast cancer, and I was on my knees, praying, "Take me."
And that is the prayer of every parent. If you must have one of us, take me.
The president quoted Elizabeth Stone,
"The decision to have a child... is to decide forever to have your heart go walking around outside your body."
True. Francis Bacon wrote that having children made you a hostage to fortune. Indeed.
Good parents do what they can. If we could, we would walk before our loved ones, protecting them from all harm, asking them, as the first responders did to the Newtown children who survived, to close their eyes so that they would see no evil.
But against some things, we are powerless. We cannot anticipate such senseless slaughter. But we can make the next one more difficult.
America does not have any more mentally handicapped, or developmentally handicapped, disturbed, or mad people than any other country. What it does have is more guns.
We cannot make sense of what happened in Newtown. We can only try to give this senseless massacre some purpose other than a cathartic outpouring of grief.
It is time to ban assault weapons in private hands. There is no reason, no reason at all, why a private citizen should have any kind of semi automatic, high power weapon. When the constitution guaranteed the right to bear arms, these kind of weapons did not exist.
It is time to put the sport back in sport shooting. My father was a hunter; so was my husband. Like most traditional hunters, they would be opposed to taking this kind of weaponry, with the type of ammunition now available, into the field. There is no sport when the target does not have a chance.
It is time to demand background checks on those who would have guns, and high time to make those who would traffic illegally in guns charged with a felony crime.
I am not against guns. I am against military weapons used by civilians; I am against easy access to any gun to anyone, regardless of their mental state or background, who wants to buy one. I am for common sense. And the common good.
It is time for the politicians to decide whether they represent the people of America or the gun lobby.
And it is time for the media to go home, to leave the people of Newtown and the families of all those children, those killed and those who survived, to do their mourning privately.
Take the cameras and the microphones instead, to the state capitals and to Washington, and focus them on the policy makers, holding them in the spotlight of scrutiny, make them accountable to the 26 bodies that will be laid to rest this week in Newtown, Connecticut. Do not let them out of your sight, or sound, until they have acted. For once, make the story more than a one-week wonder. Do not go home until the change that President Obama so eloquently spoke of, becomes a fact.
It is time.]]>Alzheimer's: Transitioning From Partner to Caregivertag:www.huffingtonpost.com,2012:/theblog//3.22942572012-12-13T13:14:22-05:002013-02-12T05:12:01-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
An early diagnosis of Mild Cognitive Impairment/ First stage Alzheimer's gives the patient some control. He or she can modify lifestyle -- more exercise, less alcohol, elimination of sleeping pills, among other things -- which may slow down the progress of the disease.
Early stage patients also have the option to enroll in pilot studies or clinical trials which may benefit them, and certainly will help to develop better treatment. If the patient doesn't already have a living will and a health care proxy, or power of attorney, this is the time to see a lawyer. And perhaps most important, the patient can participate in developing the plan the patient and the family must have to meet the demands of the coming, not just months, but years.
For the caregiver an early diagnosis means time to digest the news, to understand and accept the mountain of responsibilities that lie ahead. In every partnership, there is an informal distribution of duties. One pays the bills, another does the shopping; one puts out the garbage, the other looks after the car; one organizes family gatherings, the other makes the travel arrangement; one cooks, the other carves.
However all that falls out, as caregiver, you will find yourself doing everything you have always done, plus everything your partner did. If, like me, you lived in a cocoon about family finances, now you need to know everything there is to know: details of insurance, (private and government), sources of income, the names of agents, accountants, bank officials. There is a sharp learning curve to climb before you even begin the real duties of the caregiver.
Let us hope that this diagnosis comes when your loved one is still capable of participating in a discussion about the future. There is no right or wrong way to proceed -- just what is right for you and the patient. This is the time to examine yourself, to accept your capabilities, your weaknesses. It is also the time for important decisions.
Are you going to want to stay in your home? If so, what would the eventual costs of that be, what resources are available, can you do it? The time will come when you will need extra hands. Is family available or will you need to hire aides? What resources are there in the community to help? Or is this the time to move to some type of assisted living? Or turn to a nursing home? What facilities are available and what questions do you need to ask? Jane Gross' book, A Bittersweeet Season, Caring For Our Aging Parents -- And Ourselves (Vintage, 2012), is an excellent source of information on this subject.
You should learn everything you can about the disease, its stages, and treatments. Knowledge is more important than hope. Scam artists and fake cures follow in the wake of every ailment -- AD among them. We would all like to think that there is an easy cure. There isn't. That doesn't mean that there are no treatments available that will make the inevitable progress of the disease more comfortable for the patient and the caregiver -- there are. As the gatekeeper to your patient's care, you need to be able to differentiate between the scientific fact and false hope.
An early diagnosis also permits a thorough examination of the medical assistance available. Is your family physician willing to take on this care through to the end? Does he or she have the patience for someone whose cognitive abilities are declining? You can't fit an AD patient (or any elderly person) into a 20-minute appointment. This may be the moment when you have to seek out a geriatric specialist. Unfortunately, there not many of them . As a result, it is not uncommon for a 90-year-old to be put on a waiting list at a geriatric service: surely that is one definition of irony! No matter which doctor you choose, as caregiver you are going to be the major coordinator. You can't count on the various services to remember the details of the patient's medications and various medical issues. You must be on top of the information, at all times.
In terms of care, you and your partner should discuss frankly the types and levels of care desired. Alzheimer's rarely requires the kind of radical intervention commonly dealt with in a living will. But you will be dealing not only with AD, but with the process of aging, and possible illnesses and disease. How much treatment should the patient receive for non AD issues? Should there be heart surgery? How many tests should be administered? How many medications given? As the AD patient's intellectual capacity declines, these decisions will become yours alone to make. It is a lonely road.
I highly recommend the book, My Mother, Your Mother, by Dennis McCullough, M.D, (Harper Collins, 2008). Although this book was written for adult children taking on the care of a parent, in its advocacy of slow medicine, it is a useful guide for anyone caring for a patient where there is no possibility of a cure. It is an impassioned call to "preserve the quality of life, even in the fact of difficult and accumulating diseases".
Sometimes I think that the only thing that matches the number of new medical treatments is the growing list of things we don't want done to us when we are older. I appreciate the fact that doctors want to save lives. But, in some cases the patient should be allowed to go peacefully into that good night. That is a decision you and your partner must make, one that only the two of you can make, and you need to do it, while there is still time.
]]>Does Alzheimer's Excuse an Affair?tag:www.huffingtonpost.com,2012:/theblog//3.22409822012-12-05T17:14:30-05:002013-02-04T05:12:01-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/Dr. Ruth's Guide for the Alzheimer's Caregiver.
She understands the nature of our loneliness. Although she is not and never has been a caregiver herself, she draws on her life experiences and the advice of many experts to produce a book that would be of interest to anyone just starting out in the caregiver role. It's a thorough summary of the nature of the disease, its effects on family, various medical and legal issues and she makes some helpful practical suggestions.
However, when she gets around to her speciality -- sex -- I didn't know whether to laugh or cry, so I did both.
First, she gives we caregivers permission to have an affair:
"If you need the companionship, the love, and yes, the sexual gratification of a relationship, then by all means, seek one out."
And, although she is careful to say she is not advocating infidelity, there are instances where she certainly seems to be:
"If your spouse is much older than you, or if your spouse has early onset Alzheimer's, that's an even stronger reason to look for a new partner."
Now, if that's indeed your desire, I don't think you need Dr. Ruth's permission. Or anyone else's. And I will not judge you. It's entirely your business. But I would like you to tell me how you find the time, the energy, and the emotion.
I am not Brooke Astor, who once told me that she put herself to sleep by counting the men she had slept with. But, way back when, before I married this man, I did have an affair. Or two. I didn't count then, and I won't count now.
Perhaps affairs have changed in the intervening 30-odd years. But what I remember is that they took some planning. Phone calls. Notes. Coded glances across dining room tables. The pressure of a knee. Your place or? Certainly not mine. Not now.
Once that is out of the way, there is the matter of pretty lingerie. Body cream. And pedicures. I have never known a woman having an affair who did not put great emphasis on having a pedicure. Not sure why. Do we walk into the bedroom on our hands, waving our feet? I think not. But an affair without a pedicure is unthinkable. And then there is perfume in private places. I am at a loss as to how any of that that will fit into my caregiver's day.
Getting away is always difficult for an adulterer but for the caregiver, it's a special problem. My cellphone is attached to my hip. Do you leave your cell phone on during your intermezzo? What if the aide left in charge needs to call you? Never mind the existential question of how you live with yourself if your partner dies while you are occupied this way -- what about the practical matters? Do you come back smelling musky? Or with wet hair?
Perhaps, if your partner is in a nursing home, the practical stuff is easier. But I don't know any caregiver who is actually giving care who has the energy or the emotion required for an affair. I certainly don't. The idea is laughable.
Dr Ruth also makes finding that new partner sound very easy:
"...no matter what your age, you'll benefit from having some companionship...the fact is, if you want the companionship from a relationship, you probably are going to have to accept the entire package which will include a sexual component."
Step right up to the companion buffet dear friends -- will you have sex as a side? Dr. Ruth should meet some of the widows and divorcees I know. Attractive women who are engaged in the community, meeting people. They're in better, less complicated positions than caregivers, and probably taking better care of themselves. They may even have regular pedicures. But, even using online services, they tell me that finding that "someone" is very difficult. Perhaps it's easier for the men. There are more women available. But for the most part, the men are looking for younger partners. Future caregivers perhaps?
There is something about this casual approach that I find offensive all round. First, it short-changes the affair. What you want from such a relationship, dear touch-hungry caregiver, is clear. What do you have to give? And once started, what makes you think you will be able to control where it goes? At my age, a new companion will probably be on the brink of needing caregiving himself. About this, I take my cue from Stephen Sondheim: I am definitely not doing it twice.
But above all, it fails to understand the power of a true marriage. Now I realize that Alzheimer's does not specialize in happy relationships. If you chose to be a caregiver when the relationship was not happy, then I am all the more admiring of your sense of duty. The idea of fidelity, and the dimension it adds may have been erased long before your partner's diagnosis with AD. Each of you may have already been going your separate ways, physically, emotionally.
But that is not always the case. Certainly not mine. Do I miss lovemaking? Yes. Emphatically yes. Even though I now have paid aides, at least twice a week, I give my husband his shower, because I need the physical intimacy of touch. We still sleep together. Sometimes, that means I don't get a good night's sleep. But that is outweighed by the sense of him beside me, the sound of his breathing, the knowledge that I can sometimes quiet his distress with a stroke of my hand on his arm. We are bound together by something greater than sex, greater than love, something so powerful it is beyond words. More now than what it was seven years ago when we entered the parallel universe of Alzheimer's.
Although he slips away from me, bit by bit, I believe that if I had an affair, he would know. He would sense it.
Perhaps, like Justice Sandra Day O'Connor, the day may come when a nursing home is the right place for my husband. And perhaps, like hers, my husband will find another partner in the dementia world. As he will then have entered into the amoral oblivion of amnesia, there would be no question of anger or jealousy or outrage on my part. I would be glad that he had found some pleasure in that foggy universe.
According to Dr. Ruth, that would be my "Get Out Of Jail Free Card." But, I will not have entered into oblivion: I will still have memory. And now that I have experienced this mingling of body, mind and spirit, I am not in the market for anything less.
]]>How Well Do You Know Your Own Mothertag:www.huffingtonpost.com,2012:/theblog//3.21999572012-11-29T08:57:18-05:002013-01-29T05:12:02-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
Let us suppose that I am your mother.
Chances are, when you ask me, "How are you Mom?" I will answer "Fine". Am I?
Or am I in denial, protecting you from the truth, afraid to admit to my physical, mental lapses, covering up?
What do you know about me? Not assume, but really know?
Let's do the factual check first. Have I identified someone as an emergency contact? Have I informed that person, and the rest of the family about this? Is this information, along with my basic medical history, in my wallet? If that person is you, do you know the name and telephone number of my doctor?
Are you up to date with my various diseases, surgeries, illnesses, and meds? Do I have a living will? Have I named a health care proxy? Does the doctor have copies of this? Do you? If you are the health care proxy, are you prepared to say no to an insistent doctor if he wants to perform a procedure I want declined? Can you stand up to that pressure? Do you know your rights as a proxy? Are your siblings on board with my decision, and your obligation to enforce my decision? Have you had a family discussion about my aging process and what it might mean to everyone, not just me?
Depending on where I live, do you know how much my old age care will cost? What insurance do I have? If I want to remain independent, in my own home, do I have the financial resources to support that? For how long? Who would be the caregivers? Have you discussed this with your siblings and/or step-siblings? If I must go into assisted living or a nursing home, what do you know about the available facilities? Do you know what the government program would cover, and what expenses would have to come from my income? Or from you and your siblings? Just when you finish with paying for your childrens' college education, will you have to start paying for your parents' care?
Are you aware of the tests that are labelled ADLs -- Activities of Daily Living -- assessments of the abilities people need to have in order to live by themselves? How do I rank? Can I bathe, dress, use the toilet myself, move without help, eat without assistance? Loss of two or three of those is usually considered to be the qualification for admittance to a nursing home. Do you know my end of life wishes?
Now, let's consider what I think of as the eyeball/ intuitive check.
If you live far away, how often do you contact me? Do you know me well enough to recognize changes in my voice that might indicate a problem? Do you hear different things in my voice at various times of the day? If I don't answer the telephone for some time, whom would you call to check on me? When you were a teenager, your parents wanted to know who your friends were: You need to know who your parents' friends are.
When you visit me, do you look at me? Closely? Am I as well-groomed and carefully dressed as has been my habit? Can I hear you? If not, has my hearing been checked? Have I had wax removed from my ears? What pills are on my night table and in my medicine cabinet? Do you know that almost a third of all hospitalizations of elders are medication-related?* Have I lost weight? Do I seem frailer? What food is in the refrigerator? Are there new dents in the car? Do I seem to be overloaded with new magazine subscriptions? If so, I am probably the target of telemarketers: You might want to see what else I might have been ordering. Is the checkbook in order? How much alcohol am I drinking? Do familiar objects seem to be missing?
Take a walk with me. How is my balance? My posture? My gait? Am I getting enough exercise? Do I still have a life outside my home, friends, activities? Am I still engaged with life or have I been withdrawing from events, people, I once embraced?
Are you prepared to step in and ask these questions and have this discussion before there is a crisis? I might welcome your taking over some of my responsibilities. And, yes, I might be testy, even angry at the suggestion that I can't manage everything myself. I am the parent, you are the child. I may well resist. But I hope, in my heart, that you will continue to push because I know, in my brain, that if we face the problems of my aging as a family, we will make better, more informed, less pressured decisions, and that when I die, as I must, you will have no regrets, and I will have the good death that each of us prays for.
*source: My Mother, Your Mother, Dennis McCullough, M.D., Harper, 2008.
]]>Alzheimer's: The Rivers of My Memorytag:www.huffingtonpost.com,2012:/theblog//3.21711522012-11-22T17:34:37-05:002013-01-22T05:12:01-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/ Glen Campbell has joined the list of millions diagnosed with Alzheimer's Disease (AD). He has been saying goodbye to his many fans on a farewell tour, and recently issued a new album: Its title, Ghost on the Canvas, will resonate with anyone who understands the nature of Alzheimer's Disease.
And Campbell's family has joined the circle of loving partners, children, and friends who must watch helplessly as AD steals bits and pieces of the brain and identity of a man beloved, not just by them, but by country music lovers all over the world.
Helpless because there is no effective treatment and no cure. Not for Glen Campbell, or anyone else who is in the darkening web of Alzheimer's now. All we who love them and treat them can do -- and that is a lot -- is provide loving care and comfort and try to change the future for the next generation.
In a letter, Campbell's daughter Ashley, one of three of his children accompanying him on this tour, writes:
"I was in high school when my father, Glen Campbell, started having trouble remembering things. Soon after, in early 2011, the doctor told our family that he had Alzheimer's Disease.
"While performing on tour with my dad this past year, I have seen first-hand how this terrible disease slowly creeps in. It is stealing a devoted father from his family and a beloved talent from the world.
"My dad keeps saying to me, 'I love you, I love you so much.' I realize that soon he might not know that he loves me because he won't know who I am. So I do everything I can right now to let him know I love him since there's not much more I can do. There are no drugs available today to prevent, treat, or cure Alzheimer's.
"But there is hope. My family and I are partnering with Leonard A. Lauder and the Alzheimer's Drug Discovery Foundation (ADDF) to help fast track drug research -- if not in time for my father, then for the many others that will follow."
I have not met Ashley Campbell, but I share her heartache, and her determination to bring hope to the next generation. And, like her, I have embraced the work of ADDF. Founded in 1998 by Leonard and Ronald Lauder, ADDF's only mission is to accelerate the discovery of drugs to prevent, treat, and cure AD, related dementias, and cognitive aging. As all administrative costs are covered by a private foundation, every dime given to ADDF goes to drug research and related programs. In explaining his passion for the cause, Leonard Lauder once told me that (unlike a lot of other rich people) he has no interest in having a building or a wing with his name engraved on it. What he wants is a cure and better treatment for AD in his lifetime.
So, ADDF searches the world for the most promising projects, and has invested more than $54 million to fund nearly 400 drug research programs in 18 countries. Many of these have the potential to make a huge difference in the diagnosis and treatment of AD and, in a future blog, I will talk with Dr. Howard Fillit, Executive Director and Chief Science Officer of ADDF about some of the most promising projects.
ADDF is structured as a venture philanthropy model -- grants are given as investments so that if a project comes to market, ADDF shares in the profits which are then reinvested in new research grants. You can learn more about ADDF on its website, www.alzdiscovery.org. For now, in this season of giving, you might want to thank Glen Campbell for all the moments he shared with you through his music by making a donation in his name. ADDF is a registered charity in both the United States and Canada and contributions should be sent to The Alzheimer's Drug Discovery Foundation, 57 West 57th Street, New York, N.Y., 10019, and marked "Glen Campbell tribute."]]>My Husband and I Now Speak in Silencestag:www.huffingtonpost.com,2012:/theblog//3.21242282012-11-14T12:09:55-05:002013-01-14T05:12:01-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
But I do envy one aspect of being young: It is the only time in your life when you are confident that you know everything.
And I remember when I was young, when I knew everything.
Way back then, when I saw an old couple in a restaurant, sitting throughout a meal without apparently offering a word to each other, I used to think, "How awful," and I would vow to myself that I would never be a partner in a marriage like that, two people with nothing to say to each other. How terrible.
How little I knew.
Now, many of those who know about my husband's Alzheimer's (AD) will ask me, "Do you have any conversation at all with him?" Well, that depends on how you define conversation.
Not like the ones we used to have which began at breakfast with the arrival of three newspapers and started with a discussion of Washington, Ottawa, New York and Toronto politics. My husband set an intellectual pace, with his knowledge of politics and economics and the breakfast talk would be one in which I was challenged to think and re-think.
Then, typically we would part ways and not see each other again until late in the day when we would tell each other about our day, discuss what we had heard, learned, touch on family and finances, and if we were going out to dinner, where and with whom and -- if I had initiated the guest list -- why! If we were staying home, what we were going to eat. The latter could take quite a long time. And so it would go, from breakfast until the lights went out and the last words would be, "Good night, I love you."
I miss all that, beyond mere words. And I have found that words are just that: mere.
Days can go by now when my husband does not say a word, let alone comment on the world outside our doors. But that does not mean that we don't have a conversation. We do. There is a kind of silent communication that is as powerful as any that depended on speech. He can tell me with his eyes that he appreciates what I do for him. He can tell me with a smile that he is pleased to be with me. Without a word, he can let me know that he is not happy that I am going out, leaving him behind.
When it's a really good day, if I ask him if he loves me, he will reply "Yes," and when I ask why, he will answer, as he used to do, "Damned if I know." And, always, if I tell him, " I love you," he will answer, "Thank you, I love you too."
Does anyone really need any more than that?
I have learned to look at that old couple in the restaurant and see them now in a very different way. Perhaps they don't have anything to say to each other anymore. When you have lived a long time, the world around you does tend to repeat itself. Everything that could be said has been said. More than once. There truly isn't very much new under the sun. So, the general had an affair. Remember, so did Ike! Or so it was said.
But it is also very possible that they have moved beyond words. That what pulses between them is so strong, so deeply rooted, so much a matter of fact, that it just is. That they are just truly comfortable with each other.
That when you look at them, what you see is indeed an old married couple. And realize that is not something to pity but a state perhaps to even envy, later, when, with age, you find that you don't know much, let alone everything.
]]>What Sandy Was Like for the Elderlytag:www.huffingtonpost.com,2012:/theblog//3.20904962012-11-08T12:15:13-05:002013-01-08T05:12:01-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
Then Hurricane Sandy came, extinguishing all those lights as well as our own. For 48 hours we had no power, no phone, no water, and for 24 of those, I was marooned in an island of silence, alone with an elderly husband with Alzheimer's, and no elevator.
Our electricity was speedily returned and our life quickly assumed its normal rhythm. But outside the windows now, distance offers not enchantment but perspective. Hurricane Sandy has left behind flooded communities, deaths, homes, hopes, destroyed, hospitals evacuated. It brought out the best of us -- volunteers, by the thousands, many of them would-be Marathon runners making floor to floor, door to door calls, manning distribution centres to give out food, water, blankets, others rolling up their sleeves to wield shovels and rakes, tackling mounds of mud and debris.
And it brought out the worst of us. If there is a Dante-like roster of worst crimes, surely looting your neighbour's home, gouging prices, or pretending to be a caregiver only to be a robber, is close to the top of the list. Fortunately, this group is outnumbered by the good guys, but that there are any is despicable.
I can tell you the numbers -- 48 dead in New York alone, more than half of them on Staten Island. But these are not numbers -- they are two little boys, swept from their mother's arms by a hungry wave; they are a father and daughter, tossed into the marshes still clad in their pajamas; a man who after moving his family to a higher floor drowned in his own basement; a couple who ventured out to walk their dog, only to be killed by a falling tree. On and on, down the list, lives lived and lost. Real people. Real families. Prayers said. Prayers unanswered.
Now, we see pictures of what is called a mountain of debris. Surely it is a mountain of heartache: photo albums, wedding pictures, a christening dress, a baby's mug, a teddy bear, a doll, grandma's favourite cup and saucer, a baseball glove, a precious book, tapes of the bar mitzvah, an heirloom tablecloth, hard-earned furniture and carpets, the sunroom it took years of saving to build. Look around you at what you think is precious and imagine it buried under water, mud and, in Breezy Point, turned to ashes in a fire, all of that now scooped up by the sanitation department to be added to the mountain that is politely called debris, but is, in fact, the essence of your life, all that you have worked for, created, held dear.
Imagine that you are one of the 600 New York Police Department employees whose homes are in the Rockaways, working day and night to save lives when you know your own home and family are in the path of danger but you cannot reach them, do not know their fate.
Distance brings perspective. Our little adventure was nothing compared to all this. But it also brings perspective to the need for society to understand what it is to grow old. They were told to evacuate, implored to evacuate, but many did not. Some are still stranded on higher floors without power, heat, elevators, dependent on volunteers to bring them water, food, warmth, connection with the outside world. And now, with a Nor-Easter roaring into New York, they are being told again to evacuate. From a distance you may ask, why don't they?
Meet them, what they are really like. Yes, you may know someone 90 who is bright as a tack, still drives and lives an independent life. But for everyone like that, there are the others, whose arthritic bones move slowly, who think slowly, process information slowly, make decisions slowly.They move with an array of "stuff." Every aging body carries with it all or a combination of the following: dentures, distance and reading glasses, hearing aids and batteries, medications, some of which have to be taken several times a day, ointment for thin, easily bruised skin, diapers, a cane, walker or wheelchair, oxygen, catheters, injections. The thought of trying to move all that, with help, let alone by yourself, or with an ailing partner, to say nothing of a dog, a cat, a bird, is surely daunting. To go where? To a shelter with hundreds of others, to be in noise and confusion, removed from all that is familiar.
Old age: let me tell you, it is definitely not for sissies. And nature: nature doesn't give a damn. It makes no distinction between babies and grandparents, the frail and the strong, it just sends its waves and its winds. Beware those who do not, or cannot, get out of its way.
]]>Eight Steps to a Healthy Braintag:www.huffingtonpost.com,2012:/theblog//3.20245782012-10-29T12:28:46-04:002012-12-29T05:12:02-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
Dr. Howard Fillit, the Executive Director of The Alzheimer's Drug Discovery Foundation (ADDF) has written a booklet [available online at their website] called "A Practical Guide to Achieving and Maintaining Cognitive Vitality With Aging." Although there is no guarantee that following the guidelines in this booklet will prevent Alzheimer's, they are not castor oil. Far from tasting bad, they will improve your life as you are living it. If they also turn out to prevent AD, that's a bonus. He tells us that "cognitive impairment with aging is preventable" and that "through lifestyle interventions and effective management of chronic medical conditions, attaining and maintaining cognitive health is possible."
When Dr. Fillit talks or writes, I listen. He is one of my Alzheimer heroes. A geriatrician, neuroscientist, and leading expert in Alzheimer's (AD), Dr. Fillit has a distinguished academic career at the Rockefeller University, and the Mount Sinai School of Medicine, (NY) where he is a clinical professor. The author or co-author of more than 300 scientific and clinical publications he is the senior editor of Textbook of Geriatric Medicine and Gerontology. To all that scientific background, he brings the personal knowledge gained in his private practice. He is one of the rare doctors who combine scientific knowledge with real experience with patients. And he understands the caregiver's burden: His own father recently died from AD.
Dr. Fillit points out that some medical illnesses -- among them, hypertension, high cholesterol, obesity, thyroid, diabetes and, in men, low testosterone -- are associated with diminished cognitive function, so the first of his recommended eight actions is to control those health issues.
The second is to follow a balanced, low-fat, low-calorie diet. He recommends a multi-vitamin every day as well as the clinically-tested DHA, a component of omega-3, which is available online. He adds, "Vitamin D deficiency, very common in older people, is not only bad for the bones, but also the brain. Older people should get their Vitamin D levels checked and, if low, should take supplements."
A B12 deficiency is also common among the elderly and when that is the case, Dr. Fillit recommends supplements, usually in the form of monthly injections. He suggests that alcohol be kept to a maximum of two drinks a day and, if you have already been diagnosed with mild cognitive decline (MCI), that you cut out alcohol completely.
Sleep is a component of his eight-point strategy. He offers some tips on getting a good night's sleep, one of which is to avoid sleeping pills. He recommends instead, a glass of warm milk, and avoiding eating and/or exercising three hours before bedtime. Pointing out that depression may cause memory loss and difficulty paying attention, Dr. Fillit urges family members or friends to encourage those who are depressed, anxious, grieving or lonely to seek help. He suggests that seniors plan a post-retirement life that keeps them involved socially, connected to their community as well as their family.
Dr. Fillit recommends exercise -- for the body, and the brain. He suggests moderate intensity aerobic exercise for at least 30 minutes, three to five days per week. As to the brain, he advises continued use through adult education, particularly learning something new. He writes, "Learning to play a musical instrument, reading books or a new language will all promote cognitive health". He lists mind games as a possible way to promote that, but adds, "they have not been proven to have generalized benefits on daily function".
Dr. Fillit also discusses the effect of stress on the body -- muscle tension, elevated heart rate, higher blood pressure, and the secretion of stress hormones. The result can be fatigue, disturbed sleep, poor concentration and memory lapses. He writes, "Chronically high levels of stress hormones suppress the immune system and kill brain cells. Older adults with a high level of psychological distress have twice the risk of cognitive impairment."
He lists eight ways to cope with stress, one of which is meditation. In an earlier blog, I reported that I have practised Transcendental Meditation (TM) for 35 years. I then recommended deep breathing and following the breath as a method of meditation. If I left the impression that the two are the same, I apologize. They are not. But, knowing that caregivers have difficulty carving out time for taking on something new, I offered, as Dr. Fillit does, a simple way to begin to meditate.
A reader suggests that those who practise TM don't -- possibly won't -- get AD. Amassing the evidence to prove that would be difficult. One would have to have the results of a large study of autopsies, and know whether those people had practised TM, for the same length of time. Or, take a group practising TM now, and follow that through until their death. But there is certainly plenty of evidence that meditation, of any kind, is a good thing to do.
One recent study approved by the University of Virginia Review Board, linked meditation and AD. Results of the study, by K.E. Innes, T.k. Selfe, C.J. Brown, K.M. Rose and A. Thompson Heisterman were published in Evidence-Based Complementary and Alternative Medicine, volume 2012. This study was among the first to investigate the effects of meditation in caregivers or AD patients. "Community dwelling adults with a diagnosis of mild cognitive impairment (MCI) or early-stage AD, together with their caregivers were enrolled in the study." They were asked to meditate for 11 minutes twice daily for 8 weeks. The participants "demonstrated improvement in all major outcomes including perceived stress, mood, depression, sleep, retrospective memory function, and blood pressure."
Definitely not castor oil. Definitely worth a try.
]]>Despite the Alzheimer's, I Consider Us Luckytag:www.huffingtonpost.com,2012:/theblog//3.20026582012-10-23T15:26:16-04:002012-12-23T05:12:01-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
One does not usually associate the words lucky and Alzheimer's disease. But within the world of almost six million North American families struggling with the emotional and financial costs of this terrible disease, I am lucky in many ways.
Lucky, in that although my husband can get irritated, he has not exhibited the rage that is sometimes reported. Lucky, in that I don't have to juggle caregiving with a job. Lucky, in that he still recognizes me. Lucky, in that there are resources that permit me to keep him at home with some part-time help -- although it is frightening how fast one runs through those resources! And above all, lucky in that I come to this role from a great marriage, rich with good memories that are a great source of strength.
What, I wonder, would one do if the marriage wasn't good? What if your partner had been abusive, or betrayed you? Where then would you find the grace and generosity of spirit to take on duty? Even with my strong feelings for my husband, I sometimes find myself wondering how long this can go on -- if I didn't still care about him, if we didn't share a foundation of love and laughter, where would I find the patience? If there are saints among the caregivers, the partners who rise to this are surely candidates.
I am also lucky in that by the time Alzheimer's claimed my husband, he was an elder statesman. While one has to regret that his last years on earth are spent in this manner, there is some comfort in knowing that he lived a full life, on his own terms, with nothing left on what Hollywood calls " the bucket list." And I, too, am at an age where, as lonely as it is, I am not sacrificing anything.
I've lived a good, happy, and productive life. I love, and I am loved. This is just another chapter. But, if we had known -- and oh, who knew what a big word "if" could be -- if we had been given advance notice of the disease, we might have taken one last trip, visiting old friends, and old haunts, retracing our own footsteps, consciously celebrating the time we had shared together. But, wishing for that is simply greed, what we had was more than enough.
So I think of the other families, where Alzheimer's has claimed someone still in the midst of life, perhaps before they had reached their potential, before there was time to create some financial stability, let alone forge a memory bank like ours. How do those partners come to terms with such a cruel fate? If there are saints among the caregivers, they can be found here. And what of those where there are absolutely no private financial resources? How do they cope? It is beyond imagining.
And what of the children, asked to take care of their parents? Drafted in mid-life into the role because he or she is an only child, or the one who is geographically the closest, or the only one who doesn't have a job, or the one everyone always looks to? This calls for putting one's life on hold, often for years. This timing of AD causes additional pain in all directions -- no parent would knowingly ask that of their child. I certainly would not want my son or daughter to have their lives interrupted for this. And while it might be ennobling in some way, it is still life, interrupted.
As if that isn't enough, what if there are unresolved issues between parent and child? To be asked to care for a parent whom one does not like, or one who is perceived to have judged us, treated us, unfairly? Abused us, emotionally or physically? Can we care for someone if we don't care about them? These are the very real side affects of Alzheimer's -- reaching out in endless circles to cut off lives beyond those of the patients.
I ask a lot of questions, for which I have no answers. Perhaps some of you do.
What I do know is that we all share in the knowledge that I underlined in an earlier blog -- Alzheimer's is a disease of the brain that is paid for with the currency of the heart.]]>Alzheimer's: Caregivers Must Also Care for Themselvestag:www.huffingtonpost.com,2012:/theblog//3.19871152012-10-19T12:59:16-04:002012-12-19T05:12:01-05:00Joan Suttonhttp://www.huffingtonpost.com/joan-sutton/
Yes, when I write about how a caregiver should take care of him or herself, I am talking to myself as well as to others. When it comes to looking after yourself, as well as the patient, and scheduling the needed breaks away from caregiving, I plead mea culpa. Like so many others, I postponed my own doctor's appointments telling myself I didn't have the time, and turning down invitations from friends, believing that, not only was I "The One," but I was "The Only One."
So, yes, I know how hard it is. For two years, I did not leave my husband. That was partly because I did not want to miss any of the moments of clarity that were left to us, and partly because I felt responsible, and fearful that something would happen to him when I wasn't present. Kindly, but firm words from two doctor friends helped me decide to take the occasional afternoon for myself.
And I will never forget the first time I did. It was early in his staging. I wasn't comfortable about leaving him alone in the house, but he was offended that I had arranged for someone to stay with him. When I told him that this was for me, that I would not be able to go unless I knew that someone was on hand in case he fell, he acquiesced. That he was humouring his over-protective wife made it acceptable to his pride.
I am not likely to forget the betrayed look in his eyes -- and those of our dog! -- when I finally left. And I swear that when I returned they were both standing in the same place by the door, waiting for me, with the same baleful look on their faces. Over the years, my husband has become more forgiving about my leaving from time to time. The dog, however, still gives me that how-could-you-do-this-to-me guilt trip.
My husband did not like the first "sitter" because she insisted on chatting him up and trying to get him to play board games. Next time around, I did a better job of informing the stand-in caregiver about the established routine -- lunch, a nap, and then tea and a movie, preferably Foyle's War. That series speaks to his generation, and he can watch it countless times. (I think I could repeat the scripts backwards.)
I waited too long to take the occasional afternoon off, and far too long -- four years -- to seek or accept regular help, and did that only then because his physical condition had worsened and I could not manage by myself. As a result, I was exhausted, breaking the first and most important rule for the caregiver -- stay healthy, physically and emotionally. I urge you to seek out the resources available -- family, friends, the Visiting Nurse Association or their local equivalent. If you need help to find out what is available, do get in touch with your local branch of the Alzheimer's Association.
I was not The Only One who could take care of my patient: Neither are you. That break doesn't have to be a social occasion. A good walk can help regain perspective. Swimming also does that for me. Exercise can be an excellent anti-depressant.
Our dog, a little King Charles Cavalier called Brewster is our private therapy dog. He provides comfort and cheer to both of us. Yes, I know a dog is extra work. But oh my, it is worth it. On those days when my husband hardly says a word, he will still ask, "Where is Brewster?" Or, if he can't remember the name, "Where is our doggie?" and my daily outings with this little guy, despite the stoop and scoop business, get me out of the house, mixing with other dog owners, and remind me that there is a vibrant world available just outside the door. In the evening -- the loneliest part of my day -- Brewster sits with me, his head against my heart, and we watch television together.
And music -- played at home, listened to in a church or synagogue, in a concert hall -- music offers very real nourishment for my spirit. During the summer, I attended a Mostly Mozart concert with my daughter. As she lives 11 hours away, just being with her was magical. But to be with her in an auditorium with hundreds of others, gathered together for the sole purpose of listening to beautiful music -- I found myself thinking there is hope for the world after all.
And I discovered anew the truth in Congreve's words -- the knots in my neck and shoulders were like the knots in the oak that he describes in this quotation:
"Musick has charms to sooth a savage breast
To soften rocks or bend a knotted oak."
However difficult it may seem, dear fellow caregiver, I do hope that you will take steps to soften the rocks in your path, and bend the knots of frustration and sorrow. Listen to the music of life. It not only plays on, it awaits.]]>