Sometimes I Feel Like a Piece of Bologna

Wednesday, May 16, 2012

Taking Care of the Caregiver

I've been writing about being a caregiver on hospital duty. On Monday, I wrote about taking care of yourself when your loved one is in the hospital. Today I saw a great article called How to Unwind: 4 Tips for Caregivers which offers even more ideas for taking care of yourself, whether you are at the hospital or caring for a loved one at home.

Today I spent most of the day on the phone trying to manage Mom’s care in a rehab facility that’s four hours away. I had hoped she would be discharged when I'm there next week, but it doesn’t look like that will happen then, and her therapists want her to go from rehab to assisted living before going home. So, tomorrow I get to spend the day on the phone arranging for assisted living. This puts me way behind on my own work, and leaves “fun” somewhere in the “in between” moments. I need reminders like this to enjoy the moments when I can. Otherwise, life becomes very barren...

What do you do to take care of yourself in the midst of caregiving? Share your strategies with us.

Photo Courtesy of Flickr Creative Commons/Joost J. Bakker IJmuiden 

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Monday, May 14, 2012

Hospital Duty – Part 6 Taking Care of Yourself

Since my primary goal when I'm on hospital duty is to be available to talk to the caregivers, I try to not leave the room for long. This is especially true if I'm waiting to see a particular doctor. I tell you, those docs are like phantoms. They can be in and out before you know it, and with my luck, my lunch break will be the 35 seconds they decide to come and look in on the patient. So I arrive in the morning as self-sufficient as possible.  For me, that means food and activities.

Food is the most important thing in my bag. I bring anything I can eat without leaving the room. This might include power bars, cut up fresh fruit, dried fruit, crackers and cheese, a sandwich, …  and of course, chocolate. And water. What I have available is somewhat dependent on where I'm staying. If the hospital is near my home, I have more flexibility. For my sister’s last hospitalization, I stayed with a friend in Sacramento. Before leaving home, I filled a plastic tub (yep, the big ones!) with enough food to feed an army. Every day I would select what I thought I might need during the day and pack it in my tote bag. If I know I have a time when no one will want to talk to me, like during surgery or a procedure, I might go to the cafeteria. But if that isn’t possible, this girl isn’t going to starve.

I’m not one to just sit idly by while the patient sleeps. While I need to be alert, the reality is, the patient will spend a lot of time sleeping. Conversation is minimal and there are big and small blocks of time that need to be filled. This, of course, depends on your personality. I always bring a book or magazine, but I also have to watch the amount of weight I carry. In the first few hospitalizations I was able to use my iPod Touch and then my iPhone to check email. Thankfully, all of the hospitals we’ve used offer free wifi – a wonderful perk for family members. When it became apparent that I was in for more long days of another hospitalization, I gave in and bought an iPad. With that, I can write, update a blog, type longer emails, and generally try to keep my business on life support. I also have many books on my Kindle app, so that eliminated the weight of the book or magazine. It was expensive, but for me, my personality type, and my business needs, it was worth it.

If you’re spending days in the hospital, usually in a not-too-comfortable chair, it’s important to get exercise. You won’t be able to do aerobics or cardio in the room, but be sure to take time to walk the halls when you can. I would usually stay within eyesight of the patient’s room, but would make sure to walk briskly for 15 or 20 minutes a couple of times per day. Between that and the sometimes VERY long trek to the parking lot, I managed to at least keep the blood flowing.

One more area of self-care has to do with the sights you see. I'm pretty good with blood, surgical wounds, etc. I was even good with my sister’s huge open sores. I was able to be a great support during the tortuous dressing changes. I thought I was doing fine. But after a week or so into her third hospitalization, I found myself getting very irritable and not sleeping well. After awhile, I realized that I was experiencing secondary PSTD from watching her be “tortured” every day. I needed to do some self-care to be able to continue supporting her. With a bit of refocus, I was able to continue caring for her while also caring for me.

You generally won’t know how long you need to be on duty. You may have an idea, but things change. Remember that for you, this is a marathon, not a sprint. You need to put on your own mask before helping your loved one.

Photo Courtesy of FlickrCreativeCommons/RhettSutphin

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Wednesday, May 09, 2012

Hospital Duty -- Part 5 Dealing with Nurses

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.

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.

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 and proceeded 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.

Photo Courtesy of Flickr Creative Commons/Christiana Care 

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Tuesday, May 08, 2012

Hospital Duty -- Part 4 Dealing with Doctors

My goal is to talk to every doctor on the case at least one a day. In the hospital system Sis and Mom are in, a hospitalist has primary responsibility for inpatients, with specialists being called in as needed. I’m usually able to get the hospitalists to agree to come while I'm there since they are in the hospital all day. Specialists, on the other hand, are coming from their practices and they come when they come. However, I would 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.

Photo Courtesy of Flickr Creative Commons/Yuya Tamai

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Monday, May 07, 2012

Hospital Duty -- Part 3 Take Good Notes

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 is particularly important as in my sister’s case where she’s seen at least a dozen docs over the past 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.

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. This binder has been invaluable over time. I'm usually 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 even 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!

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Friday, May 04, 2012

Hospital Duty -- Part 2 -- Your Presence is Required

I know this isn't always possible for GenSandwichers, but if a loved one is in the hospital, it's important 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, 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.

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 and 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 is willing to answer questions if I'm sensitive to the timing. And since I relieve them of some of their more mundane responsibilities, they quickly learn to value my presence and work with me.

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

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Tuesday, May 01, 2012

Hospital Duty -- Again!

Back in October I wrote a series of four posts chronicling the saga of my sister’s hospitalizations. After she was discharged to home in September, she seemed to live in limbo for the next several months. I would visit once a month and watch the wounds get worse. Things looked pretty hopeless. She saw another wound doctor, who refused to do anything until she had the vascular surgery. But no one would touch her.

Then in March she got a referral to a vascular surgeon in Sacramento who was willing to attempt the surgery. In fact, she seemed pretty confident. Sis was admitted on March 27 and thus began round two of my hospital duty. The surgery was March 30, and it was successful! She was discharged April 4. I spent the whole 10 days with her at the hospital, all day, every day. She was discharged to a nursing home and I drove home, arriving a full two hours before my kids arrived for Easter.

We had a wonderful five days together. I cooked Easter dinner for 12 (with lots of help from my guests). Meanwhile, Sis’s hubby checked her out of the nursing home and took her home. He felt he could provide better care and I think he was right.

When the kids left, I had three days to finalize prep for a training conference I was doing on Saturday. In my exhausted condition, that one about did me in. I kept telling my body that it just had to make it through Saturday evening. It did – barely. I hurt all over. Sunday I slept.

Then the other shoe dropped. Sunday evening, about 9:00 pm, Mom called. She had fallen and thought she had broken her hip. Why she called me rather than pressing her lifeline button I don’t know. But she did. I told her to press her button and wait for the paramedics. I called the hospital an hour later and sure enough – broken hip. I repacked my suitcase and was on the road again Monday morning.

Mom had surgery Monday night. All went well. I stayed with her through Friday, when I drove home for my Saturday class. Mom was discharged on Thursday and moved to rehab. I went to my all-day class Saturday, slept Sunday, and headed back on Monday. Spent the week with her at the rehab facility. Drove home Thursday to celebrate our anniversary on Saturday. I think I'm home for awhile…

So, for the next several posts, I'm going to share what I've learned about hospital duty. And I've learned a lot.

Photo Courtesy of Flickr Creative Commons/Boliston 

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