People who are not in a caregiving situation, especially those who have never (or more likely not yet) experienced it, want to be sympathetic, want to help. But while you can accept their sympathy, even their help, there is nothing like talking with, being with, and sharing stories and tips with those who are currently in the same boat. Those people who are actively caregiving. Their situations may be slightly different from yours — their loved one has terminal cancer; yours is dealing with advanced Parkinsons disease, for example, or yours has Alzheimer’s while theirs has vascular dementia — they are in the trenches along with you. Seeking out those in similar current situations lets you know in a way that nothing else does: You are not alone!
The article (link below) details how caregivers can help support each other.
It’s sometimes very difficult to step back into a family when you’ve purposely separated yourself from them. When aging parents need help caring for themselves, but the relationship with them has been fraught and you or your siblings face making decisions when what you really want to do is hide from the whole thing to protect yourself, you have a few choices. OK Now What? A Caregiver’s Guide to What Matters (Head to Wind Publishing) offers succinct, practical suggestions for approaching this dilemma. The article ( link below) in caregiver.com offers much the same approach — helpful and practical without sidestepping the difficulties. It’s never easy, but remember: you’re not alone.
See the eight practical guidelines offered in the article.
Gary Barq’s memory of his Hungarian grandfather, who worked as a painting contractor in his own business until 80. When Gary’s grandfather developed Alzheimer’s the family who adored him, figured out a way to take care of him without destroying his dignity or their lives. It’s a touching story and one worth reading. “Ok, We Go Now” – Caregiver.com
You can get copies of OK Now What? A Caregiver’s Guide to What Matters (Head to Wind Publishing) through caregiver.com or through amazon.com.
So often, it’s coulda/shoulda with caregivers. No matter how much they do, they seem to feel as though it’s never enough– perhaps because our loving inclination is to try to heal or solve the problems our loved one is having. Even though we know that we can’t do it, there is always that nagging feeling that you might be able to if only you’d try harder, give up more of yourself, your life, found something — anything — that could do it. What we know in our mind is often at war with what we struggle with in our gut. It’s not healthy for either us or our loved one, and is, ultimately, not helpful to the situation. But even if you can’t completely dominate that nagging guilt, you can, with logic, persistence and support of those who have been there done that, assuage it.
2016 Friendly Caregiver Awarded book, OK Now What? A Caregiver’s Guide to What Matters (Head to Wind Publishing) offers suggestions for balancing guilt with reality.
Today’s supermoon will appear much larger than usual because of its closer proximity to the earth. Full and new moons coincide with higher than usual tides. Research on the moon’s effect on human beings is inconclusive, but police or nurses, who work during a full moon, are convinced it does. One theory is that: since the moon affects the tides, and the human body is 55-70% water, perhaps we’re tidal as well, i.e. the moon’s gravitational pull affects us too. Nurses have noticed changes in a patient’s behavior, unexpected fevers, an increase in births. Some delivery rooms have extra staff on hand in case.
I personally witnessed the separation of a surgical abdominal wound back in the 70’s while working evenings at a hospital during a full moon. As a new nurse that gave me pause but the good news I remembered to soak the area with normal saline pads before calling the on-call surgeon. The wound was repaired without incident. So if caregivers notice any unexpected or unusual situations today, take note. Obviously call the doctor if something serious arises. Also note any subtle changes in yourself as well just for the sake of conscious observation. Regardless of the science it’s a curiosty worth considering; just ask a nurse. By ALL means go outside tonight and enjoy the suppermoon because the next will occur 2034!
What matters most? Enjoy the supermoon and surrender to any changes.
The numbers are staggering. According to an AARP study, the number of people 45-64 who can care for those 80 and older will drop by nearly half in the next fifteen years while the number of those 80 and older will increase by 80%. Today, with the rising cost of long-term and assisted care facilities, many are electing to provide care at home, yet most people go into it blind to the possibilities and pitfalls.
Caregiving can be both physically and emotionally challenging – AND it’s often the responsibility of one person, which can make it isolating as well. In addition to helping a loved one bathe and dress, juggling doctors’ appointments and managing a household, many caregivers must perform more complicated tasks typically completed by health care providers. Caregivers today manage multiple medications, intravenous fluids, wound care, post-surgical dressing changes, ostomy care and home dialysis. As more people are living longer, often with chronic health conditions, more responsibility falls on the caregiver. Stress is a constant.
Ok Now What? A Caregiver’s Guide to What Matters (Head to Wind Publishing, 2014) is an antidote to stress. It provides experience-based practical solutions to problems while offering strategies for self-care for the caregiver, including ways to schedule respite breaks and address issues like maintaining boundaries with family members — a proactive approach that helps prevent living in crisis mode. Who is Caring for the Caregiver? First and foremost, it must be the caregiver. OK Now What? A Caregiver’s Guide to What Matters walks them through it.
Caregiver awareness is still in its infancy, but the need is not. We would love the opportunity to be guests on your show to discuss this very timely topic and answer questions from the audience.
You wouldn’t have automatically assumed Sue and I would team up for anything. Sue’s been an RN for 30-odd years (some very odd), and a hospice nurse for 29 and counting. I’m a writer who was one of the first women in the country to earn a US Coast Guard license to run coastal tugs. I sail, Sue rows. Sue is a Baltimore girl. I was once a Baltimore girl. Oh, wait. There might have been something…
Plus, Sue had been wanting to write a book, and I was looking for my next project. Then one day in early 2013, a mutual friend invited the two of us to join her for lunch to talk about the possibility of collaborating on a book. We laughed. A lot. About death — not your usual topic of hilarity.But we were really laughing about the absurdity of life, the craziness of dysfunctional families (which includes most of us – all happy families are alike, but dysfunctional families are dysfunctional in their own unique, crazy-making, hilarious ways), and the ways we can deal with the really hard bits that keep us from losing our minds.
We realized we were on the same page spiritually. Sue’s original book idea had been to share stories of some of the incredible things she has witnessed over the years that encourage her to believe that this corporal existence, the one we nip, tuck and liposuction so assiduously, is not the last place our real selves inhabit. I’ve always believed that there is more life after the one we have here is extinguished. (If, as I tell friends who are doubters, I’m wrong, I’ll be none the wiser when I go. So there.). We’re both inveterate encouragers, but we’re both also pragmatic. Death is inevitable.
But between life humming along on all cylinders and the screeching halt that is death, there’s a whole load of stuff , including the sometimes difficult last bits of life,the time when most of us will need more help than we expect — or that we thought we’d have to give someone we love. The caregiving and cared-for part. That’s the part that Sue deals with professionally, and it’s a part that I have dealt with non-professionally.
So, Sue and I embarked on writing a book together. The result was: OK Now What? A Caregiver’s Guide to What Matters (Head to Wind Publishing, 2014). Intentionally short (160 pages) since caregivers are already stressed out and don’t have time to read a tome, it’s filled with advice, tips, lists, sources and, importantly, the stories of those who have been there done that. It’s practical, encouraging and has been, we know from readers (see reviews), a huge help to those who have helped, in Ram Dass’s words, ‘to walk someone home.’ Sue says the book is “what I wish the families and friends I deal with every day knew before they got there.”