Help Has Several Faces

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Throughout my life I’ve been involved in helping and being helped. In earlier times I tended to take help more for granted. As a child I received help, some I wanted, some I didn’t. As a nursing student and RN I learned to offer purposeful specific health related types of help. It was what nurses did. As a teacher I learned ways to help my students. In familial and social relationships, I learned other approaches. From all of them I learned about the give and take of different helping relationships, somewhat as a matter of course.

Then came the time and experience of aging where my prevailing situation has become more often that of being the one in need of help, with only limited capacities and resources for helping others or even reciprocating to those who help me. Engaging with this helping element of aging led me to start looking at the basics of this helping business.

I began to see helping as consisting of three options: doing to, doing for and doing with. I looked for examples of each in my daily and found them.

I thought of those whose help involved doing to me.

I consult and use professionals to manage my physical health, e.g. the dentist, dental hygienist and physician who diagnose and prescribe and at times do to me, the pedicurist who keeps my (now distant) toes and feet in shape. Since I take the initiative in consulting them and the extent to which I follow up on their proposals, I still have some options. But I can readily foresee situations and institutionalizations in which the doing to will be increasingly extensive and out of my control.

The next “doing to” is less obvious. These examples involve those who knowingly or unknowingly communicate words and behavior that “do to” my mental and emotional status for good or ill.   But thus far, I sense that I do have some choices in how I use that input. (See Data are Neutral, My Reactions are Not 4/24/19, and Words Make a Difference 5/29/19)

Real, but even harder to detect, is the doing to by known and unknown people, businesses and institutions whose way of functioning or business model includes sharing information about me or purposefully invading my privacy with or without privacy forms (whose language is often so arcane and obfuscating that it’s hard to know what one is signing). They do to me without my knowledge.

I see doing for me as involving help that takes the place of what I would/might wish to do for myself.

Usually it occurs after learning what I need or want, but occasionally is based on what the helper thinks might be best for me. Sometimes it has been helping me to look at situations through “fresh eyes”.   And then there are people doing for me in ways that go beyond what I might have wished for, or even thought possible. And such thoughtfulness is as much a gift as the gift itself.

Finally, there is doing with.

This involves mutual engagement.   Here each of us has a sense of gains in the helping activity. The result feels greater than the “sum of the parts”. I’ll have to admit this is the most satisfying kind of helping I experience as helper or helped.

I find that each type of helping has its place.   Being an EWA-ing help recipient demands that I:

seek help appropriately in terms of when each type is most useful and desired

recognize the type of help that is being afford and respond accordingly

provide helpers with data and information to enable them offer help in ways that are most effective, efficient and satisfying to us both.

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Putting One’s Best Foot Forward In a Different Way

From the time my sister and I were very little, mother taught us by word and deed about the need to “put our best foot forward” when we had guests or were guests (though she didn’t use those words). We were taught how to use eating utensils, table manners, greet people and manners in general. As I look back on it, I remember our home as usually neat and clean, but it needed to be especially so when guests were invited. Mother was a good Swedish cook and knew how to prepare a delicious, attractive meal and serve it well. As my sister and I grew up and started families of our own, we tended to continue what we had been taught and enjoyed doing it. It all was unquestionably friendly, but had a certain degree of formality to it.

Fast forward to the present. Aging has not only moved in, but has gradually taken over my capacities to put my best foot forward. My standards and efforts are the same. The friendliness is as present as ever, but formality and execution have flown out the window. I still can set a table, have everything set up and arrange for beverages, but prepare and serve a meal? No way! So guests tend to come bearing food. Once here, everyone pitches in, chaos occasionally reigns.   Service may be buffet style with guests serving themselves from a counter in the kitchen and returning there for “seconds”. And they usually want to help with the cleanup, though I’m still capable of doing the dishes. The casual comradery seems to feel as good to everyone as the genteel service of earlier years.

I don’t go out much for meals, but even at home I may need assistance in serving myself and cutting things into bite size pieces. Once I got over my shyness about this and could accept it neutrally as “this is what it is”, no one else seems to mind at all. As someone once told me, “No use getting your knickers in a knot over it.” So I’m learning to accept who and what I am on any given day, and others do too, thank goodness!

I also look back on my days as a nursing student in a hospital based program where much of our learning took place as we cared for patients for hours each day, and later when I worked as a nurse and head nurse on hospital wards. It seemed to me that patients perked up and tended to want to put their best foot forward when the doctors were making their rounds. And I too on my infrequent doctor visits find myself wanting to do the same.

Still, what’s important for both doctor and patient, or any other care provider and recipient is an honest encounter where accurate data on the actual status becomes available. Putting our best foot forward in this situation now would seem to be preparing ourselves (as our capacities permit) to provide/communicate accurate data on our status in relevant areas rather than try to be seen “at our best”.

In my last checkup visit with the doctor, I had written out a list of my current ARCs so I could quickly, sharply present them (and, in case my short term memory lapses kicked in). After he had asked his questions and done his inspection, I asked if he was interested in the status of my age related changes. He was. I brought out my list, explained why I had one, provided data on each ARC’s status. He asked questions and made notations. He had important data he would not have had if I had not prepared and taken the initiative. I felt I’d put my best foot forward in a new way.

So, I’m learning new best-foot-forward lessons. It’s still fine to try to be the best I can be, but it’s in a new way where it’s truly important to be who and what I currently am, warts and all.

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Aging is More than Health

Healthy:   possessing or enjoying good health, a sound and vigorous mind and body; freedom from disease or ailment

Health: a perspective for judging the status of mind and body, or the merits of a presenting situation in terms of being conducive to a sound body and vigorous mind

The way non-aged people view aging and the aged tends to be linked to their background and particular interests. Individuals, relatives, groups, disciplines, professions, businesses, legislators, economists and governmental agencies each view aging and the aged through their own mindsets, value systems and purposes.   Many of them include the health of the aged or their environments in their considerations and actions.

As a nurse, I was taught to view aging from birth to death from the perspective of health, normal versus abnormal.

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I looked at my patients and their environments through the lens of health and I worked for its promotion, maintenance, preservation, treatment and palliation. My viewpoint was wide-ranging even as I aimed for specificity with individual patients. But in my mind (rightly or wrongly), health however applied, tended to involve gradients of healthy and unhealthy.

Now, decades into engaging with my own aging, I find that seeing aging solely, or even primarily, through the lens of health is too confining.

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I sense that it can put blinders and dampers on truly significant facets of my aging experience. That bothers me.

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I don’t question that my health is hugely important to the quality of my life and aging, nor that my behavior and activities are strong influences on my health. I know that my health determines what I can engage with and how I am able to engage.   It’s just that I’m discovering that aging is so much more than health.   For example, nutrition, hydration and exercise are seen as three pillars of healthy aging. Yet the experiences of eating drinking and moving about each day encompass so much more than the health promoting considerations.   I experience the sensory elements, the tastes, textures, aromas.   I recall wonderful associated memories of food-related occasions, both ordinary and grand. The same holds true with movement related experiences. Thinking about the richness of these memories it makes me want to anticipate and enjoy them in present and future activities without having to look at them through the lens of health during the experience.

My aging is filled with intangibles of life and living, with all its richness, its flaws, its details, its marvelous surprises and unexpected pitfalls.   It’s the contemplation of life and death. The experiences of blessed solitude and the warmth of companionship with people who have such wide interests and fresh ideas or different experiences of the past. It’s the seasons and weather in all their dimensions. It’s art and music, comedy and drama.   It’s my vistas of mountains and water; the busy daytime city and the quiet, amber of its nighttime. It’s the ballet and battles of hummingbirds at the feeder and the busyness of mason bees going in and out of their homes outside my kitchen window. It’s the movement in tall evergreens in the invisible winds and their windless stillness. It’s the comfort of a cat on my lap and the warmth of hugs. The aroma of the first cup of coffee and the uncertainty of completing the morning crossword puzzle.   It’s the joy in feeling fulfilled. It’s the mourning with losses. It’s being both needy and yet capable of helping others. It’s knowing and still learning. It’s . . . . . . . . . . . . . . .

I don’t want to feel hemmed in by obligatory calculations of their effect on my health in the midst of these experiences.   I want to freely, profoundly experience all these and more, unalloyed and unexamined.

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I’m not foolish. I want to retain and use my health lens appropriately and creatively. I want and need to securely keep and use it . . . . in its proper place.

 

Doesn’t? Can’t? Won’t? Is the difference important?

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Doesn’t: is not observed or known to engage in an activity or behavior

Can’t : is unable to or prevented from engaging in the activity or behavior

Won’t: actively refuses or avoids engaging in the activity or behavior

When I was a young, naïve nursing student (and who knows how long afterwards), I think I assumed that the health care system “knew best”. My focus and goals were to enable those I cared for to take part in prescribed activities.

I remember situations of my own and those I’d hear about in change-of-shift report where patients were labeled as being “non-compliant” in one way or another. We nurses had often explained the purpose and reason for what was expected of them, supported them in doing them.   So why didn’t they do it? Were we to blame for not having taught, demonstrated, explained, supported well enough? Were they just being lazy, stubborn or willful? I heard all sorts of reasons in the blame game.

Later I came to wonder why it hadn’t occurred to me to explore how the proposed activity or behavior appeared to patients and their families. Were they afraid to try? Did it conflict with views or values they held?   Were there higher priorities? Constraints coming from others? from the environment? from economics? or?   Was there something I could do to make it easier, more understandable, alter the timing, or ?????? Were there alternatives that might seem more acceptable or possible? Or? Or? Or? But I didn’t even think of those things, much less act on them.

Now, as an aged person living almost-independently, I experience the occasional suggestion or recommendation from my near and dear ones.   I feel so fortunate that they keep a watchful eye on me, but never intrusively. Their rare “suggestions” are carefully proposed and seem reasonable. Their, “Be careful,” “Keep your phone at your side,” “Don’t worry about . . .” are behaviors I totally agree with. I want to carry them out consistently. But, distraction, lapses in short term memory or “just can’t be bothered this time”, intervene and so my compliance is spotty. With some of their ideas I may delay acting on them. If I wasn’t going to agree to something, I’d explain my rationale. We could agree to differ.

But I have my own shoulds and “don’ts”. Thanks to my clinical practice, teaching and writing background in nursing, I pretty much know what I “should” do in the face of my aging. Occasionally, a few of my age-related-changes are causes for “can’t”, e.g. foot care for feet I can no longer reach and, getting in enough protein when meat tastes like cardboard. I haven’t yet come across any situations that really require action that I “won’t” take. But daily I struggle with a lot of shoulds that I just “don’t” do.

When I was growing up, we drank water when we got thirsty. Nobody talked about hydration!   So habit wins out over should and I often fail to hydrate myself to the current suggested standard.

I know I should get up and walk around the house every 20 minutes, but I become engrossed in my writing or a book I’m reading and it may be an hour or two before I get up and purposefully walk or do tasks that require standing and walking.

So, do I still think it’s important for agers to look at ourselves, identify what we don’t, can’t or won’t? I do. And I also think that it’s important to be able to explain it to care providers as they prescribe treatments that will create difficulties, or others who have ideas about what is “best” for us.

Finding a New Doctor, What an Adventure

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Between the internist who became my primary care giver in my 30’s and his son who took over his case load when he retired, I hadn’t had to think about finding a physician in 60 years. The father and I had been professional colleagues for a time, so there was a modicum of trust and credibility from the beginning. He supported my health maintenance style; the years rolled by and his son related to me in the same way. Who knew I’d outlive both their active practice lives!

Starting over with a new doctor at 96 was stress enough, or so I thought.   What I wasn’t prepared for was the “tight” market—only three doctors were accepting new patients in this clinic. One didn’t arrive until weeks after my doctor left and another didn’t accept my kind of insurance.   It wasn’t going to be choosing a doctor who might be a good fit, but one who’d accept a 96 year old woman. Daunted, but still hopeful, I explored a neighborhood clinic affiliated with the large hospital that had been my nursing school and where I’d worked for a decade. I phoned. “So sorry, none of the doctors are accepting new patients.” This was getting serious.

My eldest son (who’d also “lost” the same doctor) decided to go up to the clinic and ask face to face about getting a doctor for himself and his mother. At first he got the same answer, until, he said, “My daughter is a patient here.” Those were apparently the open sesame words. This group believed in caring for families. Within a week both he and I had the same doctor.

My son had an ”intake appointment” within two weeks and I a few days later. He came back quite satisfied with his initial contact. That eased my concerns somewhat, but still I faced my first “intake session” with trepidation. He’d brought home a copy of the 4-page-2 sided health history and information form they wanted filled out. Good thing!   For me it was such ancient history that it took hours to find dates and recover memories. I’d have hated to try to complete it in the clinic.

I was greeted pleasantly and neutrally by a young woman who entered all my information into her computer. But I became a celebrity with her and the others in the area when they figured out how ancient I was. A laughing conversation about being old followed. Good start.   My time sitting and watching the colorful fish in the aquarium was not long. The doctor’s assistant was pleasant and efficient.   The doctor came in, greeted me, sanitized his hands and shook hands.   Then asked me what I wanted to accomplish during this visit.  No doctor had ever asked me what I wanted before. I took a breath, and thought quick thoughts. “I’d like to begin building a working relationship that would stand us in good stead.” Then I handed him my completed/signed “Physician Orders for Life Sustaining Treatment” (POLST). He asked if I’d be willing to talk about end of life care. (The big elephant in the room for doctors and family members with us elderly.)   I was. After I told him my wishes, I asked if this fitted with his practice. It did. The rest of the visit was highly interactive rather than questions and answers.   We set expectations for the next appointment and then it was time to go a few steps down the hall to get some agreed upon lab work done.

On his way back to his office, he spotted my son and told him that I was the healthiest 96 year old he’d encountered and he was happy to have me as a patient. Now who could ask for a better ending to my journey of loss, fear and search; or a more promising point of departure for future care.

Communicating “What Matters”

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The other day, a friend and former nursing colleague sent me material from the Age-Friendly Health Systems. In it I learned about the “4M’s” model for Age-Friendly Health Care. They were: What Matters, Medications, Mentation and Mobility. What struck me was that “What Matters” came first and was seen as separate but then was threaded through as the guiding purpose for managing the other three.

Now if that is the way our caregivers are viewing elderly and our care, it means that it is up to us to know and communicate — not fuzzily or vaguely — but clearly and specifically what it is in us and our approaches to living with our aging that truly “matters” to us. Caregivers are not mind readers, nor are our near and dear ones. They can read the cues we send out, but those can be just blurry reflections of what really is important to us.

I’m a very old person living semi-independently in my own home (family and friends pitch in as needed, thank goodness). So, I’ve really not felt the need to delve into my deepest basic needs, as I age and adapt.   I thought first of what I would hope would be considered and respected by workers in any kind of external support systems that might come into play as I become increasingly dependent.

“What matters” at the most basic level has existed in me, “in spades” the whole time. And it has certainly guided how I play out my daily living and relate to others in the process. But spelled out, it has not been. Now, I’m taking it on, seriously.

In my initial thinking, four “What Matters Most to Me” emerged. They undergird everything else. I need and want to

exert as much control over my life as possible. Linked to that is my desire to be and be seen as reasonably self-sufficient. (Becoming 97 has taught me that it is foolhardy to think in terms of total self-sufficiency, so relative self-sufficiency is my standard.)

have my personal boundaries respected even as I realize that I must allow health care providers and others into my private world. But I would hope that it would be a collaborative approach that involved mutual understanding of the need, rather than presumption that any intrusion was routine, system-based, or in others’ automatic presumption of what is “best” for me.

be seen as credible even as I acknowledge the existence of blind spot and an aging brain.   I want opportunities to demonstrate my degree of credibility as needed rather than be subjected to general presumptions based only on age or diagnosis. I’ll also need to accept that my credibility will need to be tested and verified.

have relationships, both personal and professional, be mutual and collaborative when we agree and when we disagree, have similar or different backgrounds, goals and outlooks.

learn about and respect what others want and need in any interaction or transaction and incorporate that into my responses.

These address my most basic “what matters”. Health care providers at any level will also need current specific data on elements of my day to day status and adaptations as they relate to their perspective and work at that point in time.   And I need to be prepared to communicate this kind of “what matters” in ways that are relevant and usable to them as they care for me. But that’s gist for another blog post.

The Elephant in the Room

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Everyone admits that someday each of us will die. It is seen as an inevitable occurrence. Bodies, like houses, wear out, so inhabitants move out. Logical and normal in the abstract, it is a subject that is avoided.   In fact health care systems and providers, by ethics, law and training, seek to prevent/delay it. Professional and personal discussions become difficult and avoided. The more recent arrival of the concept of hospice and palliation is the exception, though one must be accepting of and certified as being within 6 months of death to make use of it. And even more recently, the option to choose to die “with dignity” is available to some. It’s no wonder then that talking about the prospect of one’s death and any planning for it is an elephant in the room that most people prefer to pretend isn’t there.

I can see that this is entirely appropriate when one is young and healthy. Though even then, some younger folks are choosing to fill out and register with their physicians their “Physician Orders for Life Sustaining Treatment” (POLST) forms in which they specify their wishes about resuscitation and other measures. Who knows if they might be injured or suddenly ill and unable to communicate? It happens. However when a close young friend of mine sought to discuss her Polst for with her long term primary care giver, he immediately pursued the possibility of clinical depression and recommended a visit to a psychiatrist. (She soon found a different primary care physician who was more comfortable neutrally discussing her wishes.)

Well, I’m still remarkably healthy and my body is comfortably habitable; so I have no reason to think that death is imminent. Yet, at 96. . . . . ? I’ve decided to acknowledge the elephant in my room. With my husband’s death I experienced the demands for quick decisions and subsequent events and requirements. I thought we were well prepared, but one decision was hard and I still don’t know if I made the “right” one.

All the post-death decisions and legal requirements followed. He’d made decisions about care of his body and his wish for no services. I could handle that. I learned about all the bureaucratic demands through the lawyer and in other ways. I knew where to find the required information and how to fill out the forms, provide the documentations in originals or x numbers of copies in a timely way. I could still drive and undertake all the necessary activities. Then, after all that work was done and while it was fresh in my mind, I decided that my family was less familiar with all of my/our documents than I had been.  So I began a labor of love.

I began creating and maintaining an “Estate”. The family knows about it, it’s location and generally its content. I’ve made a typed checklist of people or agencies that need to be notified — along with time lines, account numbers, phone number as well as the type and number of needed documents (original and copies—they too are in the folder). I’ve filled out the death form information and clipped it to the instructions on what to do if I die at home. (It’s hard to think at such a time.)

I’ve also typed a sheet indicating my wishes about notifications (names, phone numbers, email) and post-death activities.

I’ve openly shared with my family and physician, my own wishes for end of life care. I’m quite comfortable talking about my dying and death, if asked. My POLST Form hangs in a plastic sleeve on a kitchen door where family and friends know about it and how it needs to accompany me to health care facilities. I discussed last stages of living with my new physician at the intake visit; he made a copy of my POLST for his record. I wear a bracelet with my instructions. I love my life. I have more things I want to do. But should death arrive today or soon, that’s fine too. I’ve no wish to prolong life. It has far exceeded all my expectations.

I know I’m loved and that my near and dear ones will mourn me. That’s the cost of losing a loved one. But I can make all the surrounding demands of the situation as easy as possible for them. I see this not as ghoulish, but as another form of my loving them and making a difficult situation easier.