Caregivers Need Care Too Quotes

What is it about the ancients,’ Pinker asks at one point, ‘that they couldn’t leave us an interesting corpse without resorting to foul play?’ There is an obvious response to this: doesn’t it rather depend on which corpse you consider interesting in the first place? Yes, a little over 5,000 years ago someone walking through the Alps left the world of the living with an arrow in his side; but there’s no particular reason to treat Ötzi as a poster child for humanity in its original condition, other than, perhaps, Ötzi suiting Pinker’s argument. But if all we’re doing is cherry-picking, we could just as easily have chosen the much earlier burial known to archaeologists as Romito 2 (after the Calabrian rock-shelter where it was found). Let’s take a moment to consider what it would mean if we did this. Romito 2 is the 10,000-year-old burial of a male with a rare genetic disorder (acromesomelic dysplasia): a severe type of dwarfism, which in life would have rendered him both anomalous in his community and unable to participate in the kind of high-altitude hunting that was necessary for their survival. Studies of his pathology show that, despite generally poor levels of health and nutrition, that same community of hunter-gatherers still took pains to support this individual through infancy and into early adulthood, granting him the same share of meat as everyone else, and ultimately according him a careful, sheltered burial.15 Neither is Romito 2 an isolated case. When archaeologists undertake balanced appraisals of hunter-gatherer burials from the Palaeolithic, they find high frequencies of health-related disabilities – but also surprisingly high levels of care until the time of death (and beyond, since some of these funerals were remarkably lavish).16 If we did want to reach a general conclusion about what form human societies originally took, based on statistical frequencies of health indicators from ancient burials, we would have to reach the exact opposite conclusion to Hobbes (and Pinker): in origin, it might be claimed, our species is a nurturing and care-giving species, and there was simply no need for life to be nasty, brutish or short. We’re not suggesting we actually do this. As we’ll see, there is reason to believe that during the Palaeolithic, only rather unusual individuals were buried at all. We just want to point out how easy it would be to play the same game in the other direction – easy, but frankly not too enlightening.

• No matter how open we as a society are about formerly private matters, the stigma around our emotional struggles remains formidable. We will talk about almost anyone about our physical health, even our sex lives, but bring depression, anxiety or grief , and the expression on the other person would probably be "get me out of this conversation" • We can distract our feelings with too much wine, food or surfing the internet, • Therapy is far from one-sided; it happens in a parallel process. Everyday patients are opening up questions that we have to think about for ourselves, • "The only way out is through" the only way to get out of the tunnel is to go through, not around it • Study after study shows that the most important factor in the success of your treatment is your relationship with the therapist, your experience of "feeling felt" • Attachment styles are formed early in childhood based on our interactions with our caregivers. Attachment styles are significant because they play out in peoples relationships too, influencing the kind of partners they pick, (stable or less stable), how they behave in a relationship (needy, distant, or volatile) and how the relationship tend to end (wistfully, amiably, or with an explosion) • The presenting problem, the issue somebody comes with, is often just one aspect of a larger problem, if not a red herring entirely. • "Help me understand more about the relationship" Here, here's trying to establish what’s known as a therapeutic alliance, trust that has to develop before any work can get done. • In early sessions is always more important for patients to feel understood than it is for them to gain any insight or make changes. • We can complain for free with a friend or family member, People make faulty narratives to make themselves feel better or look better in the moment, even thought it makes them feel worse over time, and that sometimes they need somebody else to read between the lines. • Here-and-now, it is when we work on what’s happening in the room, rather than focusing on patient's stories. • She didn't call him on his bullshit, which this makes patients feel unsafe, like children's whose parent's don’t hold them accountable • What is this going to feel like to the person I’m speaking to? • Neuroscientists discovered that humans have brain cells called mirror neurons, that cause them to mimic others, and when people are in a heightened state of emotion, a soothing voice can calm their nervous system and help them stay present • Don’t judge your feelings; notice them. Use them as your map. Don’t be afraid of the truth. • The things we protest against the most are often the very things we need to look at • How easy it is, I thought, to break someone’s heart, even when you take great care not to. • The purpose on inquiring about people's parent s is not to join them in blaming, judging or criticizing their parents. In fact it is not about their parents at all. It is solely about understanding how their early experiences informed who they are as adults so that they can separate the past from the present (and not wear psychological clothing that no longer fits) • But personality disorders lie on a spectrum. People with borderline personality disorder are terrified of abandonment, but for some that might mean feeling anxious when their partners don’t respond to texts right away; for others that may mean choosing to stay in volatile, dysfunctional relationships rather than being alone. • In therapy we aim for self compassion (am I a human?) versus self esteem (Am I good or bad: a judgment) • The techniques we use are a bit like the type of brain surgery in which the patient remains awake throughout the procedure, as the surgeons operate, they keep checking in with the patient: can you feel this? can you say this words? They are constantly calibrating how close they are to sensitive regions of the brain, and if they hit one, they back up so as not to damage it.

We need to be much more vigilant and aware of the risks inherent in touting the importance of family involvement and family care. Too easily, those calls can be reinterpreted to mean that the only care worth supporting is that provided by relatives, inadvertently demonizing and pathologizing the use of paid attendants. This is not to say that family members who provide attendant care for their disabled relatives should not themselves be compensated for their work; indeed, I support consumer-directed attendant services that allow disabled people to hire their own attendants, including family members. But, as Laura Hershey explains, seeing attendant care as something best provided by a family member too easily perpetuates the idea that disability is a private problem concerning the family that has no place in the public sphere. This attitude, in turn, leads to the continued devaluation of caregiving; abysmal wages and working conditions are justified on the basis that family members—almost always women—would be doing this work anyway and therefore any compensation, no matter how meager, is sufficient.

MORE ON THIS TIDY STORY AS IT UNFOLDS “Here are your sheets, Mom, warm from the dryer. I’ll make us some lunch while you fold.” Elsie knew not to do everything for her mother because getting her mother active would help her blood circulation and help dispel the swelling in her feet. She dropped the armload of laundry on the ottoman beside her mother’s lounger. “I can’t fold sheets alone. Help me with these.” Of course. What was she thinking? Elsie turned to grasp a couple corners of her mother’s queen-sized fitted sheet. “I need to relearn how to fold these things, anyway.” Mother and daughter pulled and halved, tucked one corner inside another, and brought the ends together like partners in a square dance. Suddenly, Gail growled, “Oh!” Fed up, she grabbed the sheet from Elsie and wadded the whole thing into a roll. “I don’t remember how to do these things! Just stuff them into the linen closet, will you?” She laughed. “Okay. I was hoping you’d teach me how to do it.” “If you don’t know by sixty, daughter, it’s too late! My mom was always so good with linens. You should’a seen her linen closet. It was like the linen closets at Macy’s, all lined up. Mom took pride in her housekeeping, but I just don’t care anymore.” Elsie was noticing how she no longer cared about much of anything either. The proverbial rug had been pulled out from under her, and though she went through the motions of taking Gail’s vitals, dispensing her meds and massaging her feet, they often had little to say to one another. “Mom, why do you think the Bible says so often to remember this or remember that?” “Does it?” Gail gasped, “—talk about remembering?

As Sullivan and colleagues wrote, “attachment [by such an infant] to the caretaker has evolved to ensure that the infant forms a bond to that caregiver regardless of the quality of care received.” Any kind of mother in a storm. If this applies to humans, it helps explain why individuals abused as kids are as adults prone toward relationships in which they are abused by their partner. Why is it that about 33 percent of adults who were abused as children become abusers themselves? Again, useful psychological insights abound, built around identification with the abuser and rationalizing away the terror: “I love my kids, but I smack them around when they need it. My father did that to me, so he could have loved me too.” But once again something biologically deeper also occurs—infant monkeys abused by their mothers are more likely to become abusive mothers.

Block said. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical, because after surgery he developed bleeding in the spinal cord. The surgeons told her that in order to save his life they would need to go back in. But the bleeding had already made him nearly quadriplegic, and he would remain severely disabled for many months and likely forever. What did she want to do? “I had three minutes to make this decision, and I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the okay to take him back to the operating room. “If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he was faced with a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided. During the next two years, he regained the ability to walk short distances. He required caregivers to bathe and dress him. He had difficulty swallowing and eating. But his mind was intact and he had partial use of his hands—enough to write two books and more than a dozen scientific articles. He lived for ten years after the operation. Eventually, however, his difficulties with swallowing advanced to the point where he could not eat without aspirating food particles, and he cycled between hospital and rehabilitation facilities with the pneumonias that resulted. He didn’t want a feeding tube. And it became evident that the battle for the dwindling chance of a miraculous recovery was going to leave him unable ever to go home again. So, just a few months before I’d spoken with Block, her father decided to stop the battle and go home. “We started him on hospice care,” Block said. “We treated his choking and kept him comfortable. Eventually, he stopped eating and drinking. He died about five days later.

I’ve heard a lot about robot caregivers, and I know they’re in development all over the place, from MIT to Japan, and to the extent that some of those robots can help minimize injuries, particularly in lifting and transporting the elderly, I see them as an important supplement to what caretakers do,” Poo says. “But I don’t see them as a replacement for people. Too often, technology ends up being about convenience rather than quality of life. And we overmedicalize elder care when what’s really needed is human touch and a more humane set of solutions and choices.

Do recall how you behaved as a child: Maybe your child is just like you once were. (The apple doesn’t fall far from the tree!) Ask yourself what you would have liked to make your childhood easier and more pleasurable. More trips to the playground, free time, or cuddling? Fewer demands? Lower expectations? Try saying, “When I was a kid and life got rough, I liked to climb trees. How about you?” Do respect your child’s needs, even if they seem unusual: “You sure do like a tight tuck-in! There, now you’re as snug as a bug in a rug.” Or, “I’ll stand in front of you while we’re on the escalator. I won’t let you fall.” Do respect your child’s fears, even if they seem senseless: “I see that your ball bounced near those big kids. I’ll go with you. Let’s hold hands.” Your reassurances will help her trust others. Do say “I love you”: Assure your child that you accept and value who she is. You cannot say “I love you” too often! Do follow your instincts: Your instincts will tell you that everyone needs to touch and be touchable, to move and be movable. If your child’s responses seem atypical, ask questions, get information, and follow up with appropriate action. Do listen when others express concerns: When teachers or caregivers suggest that your child’s behavior is unusual, you may react with denial or anger. But remember that they see your child away from home, among many other children. Their perspective is worth considering. Do educate yourself about typical child development: Read. Take parent education classes. Learn about invariable stages of human development, as well as variable temperaments and learning styles. It’s comforting to know that a wide variety of behaviors falls within the normal range. Then, you’ll find it easier to differentiate between typical and atypical behavior. Sometimes a cigar is just a cigar, and a six-year-old is just a six-year-old! Do seek professional help: SPD is a problem that a child can’t overcome alone. Parents and teachers can’t “cure” a child, just as a child can’t cure himself. Early intervention is crucial. Do keep your cool: When your child drives you crazy, collect your thoughts before responding, especially if you are angry, upset, or unpleasantly surprised. A child who is out of control needs the calm reassurance of someone who is in control. She needs a grown-up. Do take care of yourself: When you’re having a hard day, take a break! Hire a babysitter and go for a walk, read a book, take a bath, dine out, make love. Nobody can be expected to give another person undivided attention, and still cope.

I like to remind people that dementia caregiving is a voluntary job. As harsh as it sounds, we always have the right to walk away. Nobody has to do anything. We may feel like we have no choice in the matter. But feelings aren’t facts. The fact is we all have the right to say no. I just want you to remember that there are other options. If it ever becomes too much, you don’t have to sacrifice yourself in the process. What is the value of the rescuer going down with the one in danger? Not to mention that you deserve to survive with a shred of sanity still intact. We caregivers are notorious for ignoring our own needs until we’re forced to take care of them. We go without sleep. We eat too much junk food or forget to eat at all. We don’t have time to exercise. We isolate ourselves because no one understands us anyway. We foster these habits at our own peril—and that of our loved one. The reality is that none of us is superhuman.

Just as importantly, perhaps the "someone" who needs to do more is the one you are caring for. It may be that she or he would benefit from having less done rather than more, for their own strength or self-esteem or integrity. There is a price that goes with being too dependent.