Allow Natural Death

Archive for April, 2011

new good and useful word – carer

If there are “bad” words that are taboo when discussing OldAgeDeathDyingHospice then there are some good and useful ones too. Carers is one of those words. It’s a word that makes so much sense that I wanted to share it.

A carer is the word that is used in the UK, Australia and New Zealand, to describe one who cares for another. Definitions differ in the distinction between family and friend or paid staff carers. Wikipedia defines a carer as, “Someone whose life is in some way restricted by the need to be responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age.” Carers UK defines carers as people who “provide unpaid care by looking after an ill, frail or disabled family member, friend or partner”. It is also possible to find those who care for others as a profession, referred to as a “carer”. But a carer always cares for a person who is in their home, not an institution.

I like it more than our American versions – caregiver or care taker. It sounds nicer just to care. No giving or taking, just a person who cares. It’s that simple. Maybe it’s the other forms of caring that are implied, e.g., “care about” or  “care for”. I have to say that I also like the Wikipedia definition. It makes clear the way a carers life is restricted by their responsibility for the care of another. It is that kind of caring that is different from a paid caregiver who can go home when their shift is done.  For a true carer there is no going home. That may be where the person who is cared about resides. Even if a carer resides at a distance, the act of caring is something that can’t be put aside. Even when the responsibility is removed.

A carer sounds like a person who will always have the cared about person’s needs and wants at the forefront of their consciousness from moment to moment. Even when others say, “you have to take a break” or “let it go.” A carer is often unable to do that. We should all be so lucky as to have a carer.

We should begin to use the word carer to refer to those who cares for another 24/7,  whether they remain with the one who is being cared for or care at a distance.

Leave the caregiver and caretaker title to the ones who can go home and at least pretend to stop caring for awhile.

If Spring’s arrival doesn’t get him going…what will?

My friend’s dad is still not able to be out and about. He wears out so quickly that anything beyond the bare minimum in activities is not an option. Profound sustained debilitating fatigue. Despite the fact that all the snow is melted and all winter’s damage  is now revealed, he is unable to get to the tasks of the season. And to him they are hardly tasks…they are the best stuff of life. The physical work of making an outdoor space beautiful was time happily spent by her father and his efforts were enjoyed by all who could see his gardens. But now sticks are strewn across the yard, laying right where the wind blew them, over this, harder than usual, winter.

She knows that he was able to get into the car and to the post office in order to get the mail. It is actually within walking distance, but walking is clearly not possible these days. Even on those first warm days that we all wait so long for each winter. And when he drives the car up the driveway he can see the sticks in the newly greened grass, but he can’t pick them up. He can see the occasional piece of trash that has snuck into what was once an immaculately kept front yard. Not that the back yard wasn’t immaculate too. It was. And the stone walls were built with care that was beyond the comprehension of my friend’s family, who watched as he made trip after trip to the nearby riverbed to find just the right stone for a particular space in the hand built walls. This was the time when all his hard work was coming to life again. It was spring and he could only look at what needed to be done. Even Spring has thus far not got him going again. But there is still time. It could still happen.

He told his daughter that he was thinking of going to a very prestigious hospital over three hours from home. There may be doctors there who would be able to fix that problem in his stomach. Then he could eat and it wouldn’t go straight through him. Then he could gain some weight before he wasted away to nothing. His heart was strong, maybe  surgery would help. But he told his daughter that he probably couldn’t do that because, “what would  happen to your mother?” My friend wonders if he thinks about the difficult recuperation from such an insult to his system. Shouldn’t he have some meat on his bones before he takes such a risk? Could he even get some meat on his bones? It seems that has been a goal for at least the past year and maybe longer. But so far nothing is working….not milk shakes or casseroles loaded with butter and cheese or any of those horrid junk food sweets that she found in the cupboard. Not working. But there is still time. It could still happen.

new good and useful word – furniture surfing

Furniture surfing. How many of us know what that is or would have reason to? If you know what “furniture surfing” is then you are very close to a person at opposite ends of the life cycle; maybe a toddler or maybe a frail elder. For those who lack the balance, coordination and/or strength to walk with ease, furniture surfing is a way of getting around, where you “surf” from one object to the next to gain support from it. From the back of a chair to a table and then to counter. It is important to keep the furniture (or doorways or walls) close enough to allow “surfing”. Picture the toddler leaning on the coffee table then to the couch then…maybe falling down.

For frail elders, furniture surfing requires higher objects that provide a good leaning or resting spot, when going from one location to another. Add to that manner of getting around, the efforts to prepare a meal or to lean down to pick up something from the floor and maybe you can imagine falls that can and do happen. Furniture surfing is important because the way a person walks is an excellent indicator of how much the effects of advanced aging are effecting the way that person lives each day. Dennis McCollough, a physician who is abundantly wise in the care of frail elders, says that  to learn the most about a frail elder a physician would do well to ask, “would you take a walk with me.”  Does the person become breathless? How fully must they lean in order to be able to remain upright? Much can be learned by closely observing the way an elderly person, physically, moves through their lives. When the ability to safely or easily take care of daily needs to wash up, or do dishes, or go to the bathroom, has gone, then something hugely important has happened. Something that will require more caring and presence for that person to remain at home. Going it alone is no longer working.

If furniture surfing is part of an elderly loved ones necessary life, it is a sign of becoming frail. Enjoy them and watch over them. Babies walk clumsily and fall down as they begin the walk of life; for frail elders it is a walk toward the approaching end of life.

Courage my Love

my friend needs a fact checker

My friend has had to remind herself (once again) that she just can’t trust the correctness of what she hears from her mom. Maybe this time she will get it. After hearing from her mom that her dad’s face was swelling, she assumed that his as-yet- unknown condition of a couple weeks ago, had returned. And he needs to go to a more prestigious, but distant hospital.  She also heard her mom say that she too was getting worse again and would need to go back to her doctor to get more antibiotics. And worst of all ….her dad was too week to shave himself. Well, okay some of these reports had a basis in something like truth. Translation: It was her mom’s son-in-law who had the facial swelling, her mom’s doctor says she hasn’t waited long enough to be sure the antibiotics weren’t going to work, and her dad doesn’t want to shave…he likes the beard, but his wife doesn’t. So the plan going forward will be to clear all info with my friend’s sister who is actually present and able to be a clearinghouse for the truth of all these matters. That way my friend can help to reinforce what is really going on to her mom. And she can relax and wait for the next crisis rather than reacting to one, in advance, that is based on false information.

So while things aren’t anything like good for my friend’s mom and dad…they are not in an emergency phase now. It is true that her dad isn’t eating enough and that the medication that was supposed to help with that is not something he wants to take ( it makes him feel like a zombie). It is true that her mom sounds absolutely horrible on the phone. It is true that life goes on and spring has sprung and the grass will soon need mowing and the weeds will still need pulling and the big and bigger tasks of keeping the big old house going will go undone…until the time when hopefully they will be well enough to do this “stuff of life”…or not.

Being an adult child of frail elders will always be full of uncertainty. Such is life.  But when memory loss, confusion, and confabulation are a part of the picture (and often they are) a new wrinkle is added. My friend is soooo glad to have a sister who is willing and able to watch over her parents. So glad.

just semantics?

As I have talked so much about the words we use and the language that surrounds decision making at the end of life, I am reminded of the opinions of some of the more learned folks that I have met in the realms of health care. When I advocate a change from DNR to Allow Natural Death – a  ban on medical-ese, they say that this is merely semantics. We should leave things as they are now. But we do people a great disservice when we ask them to learn a new language so that they may participate in choosing the care that they would desire. This seems wrong to me. While it is true that some education is necessary, it is also true that health care environments have created a foreign language. Letters are substituted for long words and spoken to families as if they should understand completely. The words and concepts that describe the human body and its complex functioning, are truly foreign to most Americans. So why is it that we have developed this other language?

I know that lingo develops to ease communication between knowledgeable colleagues, but it is not the appropriate standard of communication to use with those outside the field. If  we choose to use a language not understood by the listener, then we have create a barrier. Not just a barrier against effective communication, but a barrier that excludes many from the entire conversation. Is that the hoped-for outcome – “If no one really knows what we are talking about we won’t have to talk for long”?  We all know that time is short in the health care world. So little time is available to discuss goals of care when families are not able to speak the language. Maybe we could change the language just a little?