Category Archives: Family

Hospital Duty: Dealing with Nurses (Part 5)

Nurses are the Backbone of Your Loved One's Care

Nurses are the Backbone of Your Loved One’s Care

The nurses serving your loved one can be you ally or enemy. They can work with you or keep you in the dark. It’s always my aim to work with them, to support them in any way I can, and to be as friendly and gracious as I can be. When I arrive I the morning, I check the white board in the room and find out who is staffing my loved one. There is always an RN and one or two other staff. These others vary by facility, but are always lower levels of licensing. In California, you will find Licensed Vocational Nurses (LVNs) and Certified Nursing Assistants (CNAs). As soon as possible, I make contact with each of these people and introduce myself if they don’t know me. I check on what’s happened through the night and any scheduled procedures for that day. I always try to be positive and upbeat. It will pay off when I need something.

Know Who does What in Your Hospital

It’s important to know who does what in your hospital. For example, only an RN can give medications, start an IV, or do certain other procedures like complex dressing changes. If you ask one of the other staff for this, all they can do is give the message to the nurse. Generally bed changes, grooming, and toileting are done by the other staff. Don’t ask the RN.

Show a Little Appreciation

Nurses these days are overworked and under-appreciated. Many work 12 hour shifts. They may or may not have time to review the patient’s full record, especially if things are changing quickly with the patient. This is where my notebook and I shine. I’m often the only person in the room who knows the what’s been done and what the history is. I assume that they know what they’re doing until I see something that concerns me. Then I’ll ask a question. Either, “what” or “why,” or if I’m sure something is not right, “Are you aware…?” The what’s and why’s educate me. For example, one nurse mentioned that my sister should not have an IV because the antibiotic she was on was hard on the veins. There were two IV nurses checking her arms for a good IV site. After a bit I said, “By the way, are you aware she’s on vancomycin?” They obviously hadn’t checked her chart. “Oh, that changes everything!” they said as they rushed out of the room to order a picc line. Incidents like this happened several times per hospitalization.

I always try to check out with the nurses when I’m ready to leave. And I always try you be upbeat and gracious. It usually pays off with both information and suggestions, and better care for the one who often doesn’t feel well enough or alert enough to be gracious. So work with your nurses. Be their asset, not a nuisance. You’ll be glad you did.

Read Part 1 here, Part 2 here, Part 3 here and Part 4 here.

Photo Credit: Christiana Care

Hospital Duty: Dealing With Doctors (Part 4)

Communicate with Your Doctor

Communicate with Your Doctors
Photo Credit: Yuya Tamai

My goal is to talk to every doctor on the case at least one a day. This isn’t as easy as it used to be. In the good old days, your primary care physician or your specialist was in charge of care. You knew her, had interacted with him, and knew where to find her. No more.

In the hospital system Sis and Mom are in, a hospitalist has primary responsibility for inpatients, with specialists being called in as needed. Hospitalists are hired by the hospital and provide the first level of care for all of the patients in the hospital. They usually work 12 or 24 hour shifts, so your loved one won’t have the same doctor throughout his or her stay. But the good news is that there is always a hospitalist available if your loved one needs attention at midnight.

If your hospital uses hospitalists, your job may be more complex. I’ve worked with some who have been fantastic and true advocated for my loved one. But I’ve also worked with those who have clearly missed a serious problem, those who don’t want to “waste” resources on an older or seriously ill patient, and those who were less than caring. I’ve had to fight hard to get a CT scan and once Mom was discharged with a clear blockage in her leg that required readmission the same day after I observed the problem and took her back. I asked for a different hospitalist for the readmission…

I’m often able to get the hospitalists to agree to come while I’m there since they are in the hospital all day, unlike a primary care physician making rounds at a specific time. Specialists, on the other hand, are coming from their practices and they come when they come. However, I would ask them to give me an estimated time or tell each one when I expected to be there and many have accommodated me. I keep a list of questions for each provider so I can use their time efficiently.

By being the constant voice for the patient, I find that most physicians not only work with me, but even appreciate my participation as long as I don’t try to do their jobs for them. Again, the patient is usually too sick to ask good questions or remember what’s said. They need an advocate who is tracking for them.

Read Part 1 here, Part 2 here, and Part 3 here.

 

 

The Power of Presence

The Power of Presence: A Love Story by Neil T. Anderson

The Power of Presence: A Love Story by Neil T. Anderson

Neil T. Anderson is well known in the Christian community for his ground-breaking books: The Bondage Breaker, Victory Over the Darkness, Freedom in Christ, and others. So I was intrigued when The Power of Presence: A Love Story was offered for review by Kregel. It was promoted as being a book about his care for his wife of 50 years, now gripped with agitated dementia.

My heart goes out to Dr. Anderson. He has served the community well, and is now serving his wife well. There are few things more draining than the dementia of a loved one, and he is devoting this part of his life to her. I wanted to hear more about that journey.

I’m not sure what I expected. Perhaps something like Henry Nouwen’s later writings as he moved from being a professor to serving in a facility for the physically and mentally handicapped. His books from these years speak to and offer hope to those who have been sidetracked by God. As a person who has been involved in family caregiving for over a decade and “looking forward” to many more years, I hoped that Anderson would have words of wisdom for the weary and confused. I hoped that he would bring alive the ministry of presence—both God’s and the caregiver’s.

I was disappointed. While he used his and Joanne’s shared story as a common thread, the bulk of the book was theological. And I had a hard time finding the unifying theme or purpose of the book. I didn’t gain better ideas of how to be a better caregiver, and I often couldn’t draw the connection between the story of Joanne and the theological ramblings. I’m sure if I had had my theological hat on, I would have found the book interesting. But I had my caregiver hat on, and the book was promoted as a “luminous meditation.” I wasn’t meditating and I wasn’t illuminated…

Hospital Duty: Keep a Notebook (Part 3)

Keep a Notebook

Keep a Notebook

One of the keys to my effectiveness as a patient advocate is the spiral notebook I maintain for each patient. This is simply a chronological record of everything I learn and questions I have. On the inside front cover, I list the names and telephone numbers of each physician. This was particularly important in my sister’s case where she saw at least a dozen docs—maybe more—over a period of a year and a half. I also keep track of the names of office staff I’ve talked to. They appreciate being called by name the next time I call back and I quickly learn who to talk to in each office to get what I need.

Each day I’m at the hospital I note the date and anything of importance that happens that day—tests, physician consults, med changes, allergies, answers to questions, problems, names of helpful staff, … anything. I also log telephone calls both during and between hospitalizations. I use highlighters and different colors of ink as needed to be able to find information quickly.

This binder has been invaluable over time. I’m often the only person in the room with an accessible record of care, especially over multiple hospitalizations. I can’t tell you how many times my notes have prevented duplicate tests or treatments or more important, treatment errors. This not only protects the patient, but also helps the staff do their job better. So as soon as you know you’re in for hospital duty, grab a notebook!

Read Part 1 here and Part 2 here

Hospital Duty: Your Presence is Required (Part 2)

You Need to BE There

You Need to BE There
Photo Credit: Lwp Kommunikáció

You Need to BE There

I know this isn’t always possible for GenSandwichers, but if a loved one is in the hospital, it’s important—no, essential—for them to have an advocate on site at least during the day. It would be ideal to have someone in the room 24/7 but I know that’s almost impossible for most of us. But try to be present as much as possible during the day.

When Sis and Mom were in the hospital, I would arrive as early as possible, which for this night-person was usually 9:30 or 10:00 am (unless I knew a key doctor was coming in at 7:00 am–ugh!), and would stay at least until after dinner. The exact times depended on what was being done that day, how important my presence was, and how far I had to drive. If a procedure was scheduled early, I would be there for that. Otherwise, I would arrive by 10:00.

Why is this important? These days you don’t get to stay in the hospital unless you’re very ill. This usually involves pain meds, painful tests, and even surgery. The result is that the patient is usually in no condition to advocate for herself or understand what is being done for what reason. She’s often sleeping, groggy, in pain, and disoriented. And some, like both Mom and Sis, are afraid to advocate for themselves. They take on even more of a passive victim spirit than usual. They don’t want to offend or inconvenience the staff, so they let things go.

YOU Are the Advocate

So my job is to advocate for them. My job is to not be afraid. Of course I try my best to be polite, innocent, even humorous so as not to offend, but I’m awake and alert when the patient isn’t.

Of course, it helps if you know something about medicine, but that isn’t a requirement. My rule of thumb is to ask questions until I understand. If I can’t get an answer from one person, I ask the next one. I keep asking until I learn the terminology and understand the concept. Then I can explain it to the patient. I find that most staff members are willing to answer questions if I’m sensitive to the timing. And since I try relieve them of some of their more mundane responsibilities like refilling water or calming an anxious patient, they quickly learn to value my presence and work with me.

So if possible, be present as much as you possibly can.

See Part 1 here

 

Hospital Duty: The New Boomer Job Description (Part 1)

hospital duty

Hospital Duty — You are Needed
Photo Credit: wan mohd

 

 

 

 

Welcome to My World

I got another call this week. A friend’s mom had fallen and had been seriously hurt. She spent a few days in the hospital, but as soon as her labs were stabilized, she was summarily discharged. No explanation. No PT. No follow-up care scheduled. Problem is, her mom can’t walk, can’t take care of herself, and is hallucinating. But the bigger problem is that my friend didn’t have much of the information she needed to make decisions or manage her mom’s care. She had not been present at the hospital, didn’t know who her doctor had been, or why her mom had been discharged.

Then I got another call. Another parent had been admitted, but the daughter was questioning what was happening and why. A nasal gastric tube had been placed to removed intestinal fluid, but nothing had happened for many hours. Finally a nurse realized what was happening and dealt with it, but her father had declined in the interim.

Been There, Done That, Bought the Tee Shirt

My friends called because they knew that I’ve  been there. I’ve had a lot of experience with hospitals. Not as much as some, for sure. But a lot. I’ve literally spent months in the hospital overseeing the care of my mom, my sister, and my husband. I’ve been there for surgeries, broken bones, and mysterious problems. Over the years, I’ve gained a lot of experience with hospital duty, and would like to share what I’ve learned with my readers. Especially those of you who are GenSandwichers and beginning to care for aging parents.

So for the next several days, I’ll share what I’ve learned and welcome your comments.

 

So Says Sassy

So Says Sassy by Ann Marie Shields

So Says Sassy by Ann Marie Shields

Ann Marie Shields is sassy. Or so she says. And she says it in her delightful book, So Says Sassy.

So Says Sassy is not the typical book I review. But I agreed to read it as a favor to her daughter, who has been a friend for almost 30 years. We used to be neighbors; our kids played together until Judith and her family moved away. We’ve stayed in touch through Christmas letters and Facebook posts. When Ann Marie passed away last year, Judith decided to compile her blog into a book. And what a book it is! I’m so glad I agreed to read it.

I fell in love with Ann Marie. What a sassy, bold, engaged, and authentic woman. We’re familiar with all the mommy blogs out there, but hers was a senior blog—a slice of the life of a woman in her last years. I haven’t seen another like it. Ann Marie began blogging at the spry age of 75. That alone gives me great admiration for her. I started blogging in my late 50s, and let me tell you, every step was a steep learning curve. I was grateful for the constant tech support of my son, and Ann Marie was grateful for the tech support of her family. She was a hip, techie grandma, often blogging about her new digital camera, new phone, new computer. Like me, she tried very hard to keep up with this technological new world, even though it was hard and often confusing.

But hers wasn’t a technology blog. That was just one little aspect of it. Rather, it was the very well written life and thoughts of an aging woman. A woman who wanted to be a writer, but never seemed to gain the traction she wanted. So she found her outlet in her blog. She writes about her Irish “second and last husband, Des” with all his delights, idiosyncrasies, and maladies. She writes about her family—her kids, grandkids and great grandkids and the family events that added sparkle and delight to her life. She writes about her precious and imperfect parents, about being an only child, and about growing up in the close-knit Italian neighborhood in Chicago. And as she aged, she wrote about the increasing impact of her illnesses and health challenges, and about the last days of her precious Des.

As an aging woman, I appreciated this sneak peek into the life of one who was about 15 years ahead of me. I wondered what I would write if this were a slice of life blog rather than a motivational blog. I gained new insights into the struggles of my mother, now 95 and in the midst of all that Sassy wrote about. If you are aging or know someone who is, this book is an enjoyable and thought-provoking read. I’m missing her sassy attitude now that I’ve finished the book.

Tips for Emotionally Managing Caregiving

Are you one of the 65 million Americans providing care for loved ones needing help due to illness, disabilities, or aging? If so, you no doubt experience a vast array of emotions. You’re busy, untrained, and just plain exhausted—and perhaps managing a boatload of grief in the process.

Bang Head Here

Bang Head Here for Stress Relief
Photo Credit Lynn Hasselberger

Dr. Steve Landers offers simple but important tips for managing four common stressors in family caregiving in his article Family Caregiving Isn’t Easy: Emotional Management Tips.

I currently manage care for three people: my 94-year old mother who lives four hours away, my sister who has acute needs requiring me to be with her during hospitalizations (also four hours away), and my husband who has Parkinson’s Disease. The demands and thus the emotions regarding each vary with who they are, what their needs are, and my relationship to them. Personally, I’m great with the medical aspects of their care. I understand and can often diagnose what’s going on even before their physicians do. But I get frustrated when they behave like helpless victims. When they don’t do the things they know to do to take care of themselves. When they complain about things that neither they nor I can change, and let those complaints taint their whole day.

My tip for managing the whiny victim? Become a Pollyanna. When I’m handed a negative – a complaint, a criticism, or an accusation, I come back with a positive. A reason why I believe the sky isn’t falling. A suggestion for making lemonade out of some pretty sour lemons. An action they can take to make things better. I resist doing anything I know they can do for themselves, even while constantly reassessing to make sure they can still do it.

What is your biggest challenge in caregiving, and what do you do about it?

 

 

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Is the Gospel Being Distorted?

This week I’ve had discussions with two moms whose adult sons have lived with non-Christian girls in long-standing relationships. Both parents raised their boys with Christian values, but somewhere along the line, worldly values overtook them. One mom was devastated and prays regularly for her son and his girlfriend. The other mom took a more ho-hum attitude. After all they are in love…

Values are Changing Photo Credit: Flickr/ Parker Knight

Values are Changing                                                                                                         Photo Credit: Flickr/ Parker Knight

These moms aren’t alone. Increasingly we are seeing a dilution of the gospel in the lives of our kids. Faith isn’t as important to most of them as it was and is to us. influenced by their schools, their peers, TV and movies, music and culture, today’s Millennials are more “open,” but often at the expense of the beliefs they were raised with.

We see the same thing with other issues of the day as Millennials buy the cultural lies about homosexuality, Islam, abortion, and the environment. Chelsen Vicari addresses this in her article “How the New Christian Left Is Twisting the Gospel.”  She suggests that faith leaders in many of the “hip” (read: growing) churches are “encouraging young evangelicals to trade in their Christian convictions for a gospel filled with compromise. They’re slowly attempting to give evangelicalism an update,” and the results are leading to a new variation of Christianity that would not be recognized by their grandparents.

Why does this matter? Because the very fiber of orthodoxy is being sacrificed on the altar of cultural relevance. We are sacrificing the gospel of Jesus Christ in an attempt to be relevant, loving, understanding, and compassionate. What we, and our kids, don’t realize is that Jesus wasn’t always these things. He was counter-cultural. He ruffled feathers. He irritated the leaders. But he didn’t compromise. And his steadfastness was attractive.

This year, let’s be very aware of the influences that are wooing our young people and let’s take a stand for orthopraxy (right practice). Let’s be willing to be unpopular as we give our kids good reasons to follow the real Jesus, not the pop-Jesus. It won’t be easy, but then, few worthwhile things are…

 

 

 

Thinking About End-of-life Care

It’s not a popular subject, but you know, we’re getting to the stage of life where we ought to give end-of-life care more than a passing thought. And if not for ourselves, then for our aging parents or siblings.

end of life

Don’t wait until you need to make end-of-life decisions                                                      Photo Credit: Ted Van Pelt

An article in MedPage Today suggests that as advanced as we are with acute and even chronic care, we as a nation don’t do a very good job with end-of-life care. We don’t ask older patients what is important to them. Doctors, trained with w “fix-it” mentality, don’t consider the benefit of diagnostic tests or treatment for something that isn’t lethal. We as consumers – and as advocates – need to think about end-of-life care for ourselves and talk to our loved ones as well.

Obviously, everyone needs an advanced directive and a health care power of attorney. Your physician can provide you with those forms. And think about those in your circle of influence who have no one. We have a friend on disability who has no family. The last time he was in the hospital, no one knew to call us. We learned about it through a church prayer request. We’re visiting his doctor next week to set me up as his DPA (durable power of attorney) for health care and get his advanced directive in order.

But beyond the legal is the emotional and spiritual. What are your goals and dreams? How do you want to die if you have the choice? I have a friend with Alzheimers who absolutely does not want to go into a facility, while another friend with the same disease who told his wife that when he no longer knew her, she should put him in a facility. We can’t always comply with these wishes, but knowing them at least helps in making decisions. What are the spiritual practices that are important to you? What are your greatest fears concerning end-of-life care? These are the conversations to have now, while they are relatively unemotional. Then you’ll be better prepared when the time comes.