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Understand What it Takes To Care January 10, 2013

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OLYMPUS DIGITAL CAMERAWell, I’ve taken quite a bit of time off to regroup, enjoy the holiday and make some great connections.  But I’m feeling more strongly than ever to get the word out to friends and acquaintances about being ahead of the curve on end-of-life and caregiving issues, so it’s time to get back to writing. It may not be practical for some to get too far ahead of the curve, but many people are surprised how quickly they get blindsided finding themselves as a caregiver or being cared for. Almost everyone I’ve spoken with over the holidays is gravitating towards or in the middle of some kind of family caregiving situation. In my own experience, even with adequate time to get well informed,  I still found myself with many seemingly small tasks that were far more worrisome than I anticipated.

One day it reached the point, in K’s cancer evolution, that she needed a hospital bed. We have a nice large king sized bed but she was rolling around in it so much that you wouldn’t know where to find her next. At the end of one day I actually found her pivoted 90 degrees and scrunched against the wall. The hospice nurse recommended we get a hospital bed brought in to make sure she didn’t roll onto the floor and get hurt. Great idea, and something I would never have considered on my own. A hospital bed has bars on both sides, much like a baby crib, with the ability to raise or lower the head or legs. The hospital bed came along with the hospice services, which made it incredibly easy to do.

The bed was brought over and I had it placed in our bedroom. The guys who deliver the bed are fine to set it up but they are not qualified to move anyone onto it. K was not walking around at that time either, so it wasn’t a matter of helping her shuffle over and hop in. They said I needed to call the fire department to have her moved. The fire department!? I just couldn’t imagine having the fire department come roaring into the neighborhood, with a team of big beefy guys stomping into the bedroom to move her. No way I was going to do that, it would have totally freaked her out.

I gave it some thought and decided to move her to the bed myself. I am strong and fit and K was down to a very light 80 pounds. My biggest concern was her neck because she barely had the strength to life her head, if at all. I worried that in her frailness her neck could snap or strain if I did not support it well during the move.  I stood there for a while strategizing how to do it with the utmost care. First I made sure the hospital bed was all set with new sheets, special cushions and a pillow. I let the bars down and took a deep breath. This was a small thing but I can’t tell you how risky it felt.

I went over to K. She was conscious and staring at me. I told her what it was I was about to do and why. Not seeing any any alarm or revolt in her eyes signaled she was game. I took a deep breath and decided to go for it. I got under her carefully with my arms, cradled her head on my chest, so that it wouldn’t flop backwards, and gently put her to rest in the hospital bed. Everything was fine and it took less than five seconds. For such a small thing it was an amazing bonding experience. Well, it may seem like a small thing but not when you are in the middle of it and untrained. Looking back I should waited and called our designated hospice nurse for advice. I was very lucky that it worked out okay. I shudder now when I think about it.Jan 10 13 P2

A few days later, while caring for her, I needed to lower the bars of the bed so I could maneuver more easily. I pulled the latch to let the bars drop down but a little red flag in my head went off stopping me from letting them drop full force. The bars had some serious heft to them so I lowered them gently all the while watching her face. After easing the bars down I saw K’s face take on a disturbed and agitated look. Clearly something was wrong. Then I noticed – I had lowered the bars onto her right wrist!  She had been laying there grasping the bars as if she were holding someone’s hand, but I hadn’t noticed, and so the horizontal support of the bars landed on top of her wrist. After seeing her expression it took a moment to figure out what the problem was and I immediately lifted the bars back up. I was terrified that I may have broken her wrist, but luckily all was well and the scowl went from her face. Thankfully, not only had I lowered the bars slowly but there was tons of soft padding between her hand and the bed. That one moment of being slightly conscious about making abrupt actions may have saved the day. Still, I was totally distraught and emotionally drained about this for days afterwards. K was very lucky to escape the potential harm of my amateurishness.

Back in October the AARP Public Policy Institute and the United Hospital Fund came out with a study entitled Home Alone: Family Caregivers Providing Complex Chronic Care that had some discomforting findings. In the executive summary it says, “Family caregivers have traditionally provided assistance with bathing, dressing, eating, and household tasks such as shopping and managing finances. While these remain critically important to the well-being of care recipients, the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once provided only in hospitals.” And the report shows that many non-paid caregivers are frightened and overwhelmed with the level of care they end up having to provide these days without training.

I can see great value for today’s family caregiver to get some basic training. It was something that would have given me more confidence and ability to respond more competently. Caregiving someone can be too complex to simply consider winging it. If anything terrible happens to our loved one due to our own inexperience and lack of training we’ll find ourselves haunted by it for quite some time.

I wish I could say there’s a lot of training support available but actually it’s not that easy to find unless you are ready to spend a lot of money. I’d suggest the first place to look for basic training programs would be with your local hospices. From my limited experience, and from speaking to others, you will find they are aware of many resources, offer quite a bit of services and will go the extra mile to help you.  I found that some community colleges offer courses which, although they cost money, look like they are a good value.  Also, check in with any universities or medical schools nearby. For instance I found that the U of Nevada School of Medicine held a free workshop for elder caregiver training specifically for the family caregiver. Programs like this may happen frequently, but you need to be proactive in seeking them out.

If anyone reading this has other ideas as to how a family caregiver can get some basic caregiving training without breaking the bank it would be much appreciated. Please weigh in.

Caregiving in a Digital World December 9, 2012

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goose

Tablets: Just talk your way over to a holiday goose.

With the holiday season in full swing I am receiving enough sales and gift catalogs to fill the Library of Congress. Even Twitter is reaching out to me to buy something. I saw a tweet the other day that said “jeans that tweet.” What?  I couldn’t resist. So I clicked on the link which took me to CIO magazine’s 10 Twitter-Inspired Gift Ideas for the Holiday. Some of the items you can get are things like a Twitter Fail Whale Mug (you have to use Twitter to come even close to understanding that one- but it’s cute), or a “Stop Following Me” license plate. Then, of course, there are the Tweeting Jeans. What the jeans do is monitor your mood and tweet it out via your Twitter account to all your followers. I guess my followers might get a tweet right now that says, “IJ’ is dumbfounded and is in a snarky mood.”  So watch out.

You have to hand it to all the 5 hr energy fueled entrepreneurs out there. As the Cable Guy says in a recent commercial these folks are inventing things we “didn’t even know we needed.” But as one who has always felt comfortable and fluid around technology, I say go for it. As a matter of fact, while we have such new, great technology infiltrating our lives we need to be looking more carefully how to leverage it into the field of caregiving.

When K was winding down and losing energy she was still able to read, but a trip to the book store was a bit much.  Just getting to the computer in her office was becoming too hard for her, so I went out and bought a Galaxy Tab, Samsung’s version of the iPad. It was great for her. She was downloading books and found them very easy to read on the tablet. Right from the comfort of bed or the couch she had access to thousands of books and periodicals, photos, music and so on. The G-Tab has a voice recognition feature as well, so if she wanted to look something up on the browser she just needed to speak to it. For instance if I tell the Tab,  “I want to buy a goose for Christmas” it takes me right to Sassafras Valley Farms who’ll ship out a free range, all natural frozen goose just in time for the holidays. It’s amazingly accurate, fast and no typing is necessary.

When things got worse for K it was hard for her to get out of bed and at times she’d exhaust herself calling for me to come help. Since I was on the other side of the house in my office I couldn’t hear anything. This was frustrating so I went and got a walkie talkie. That was a big waste of money. It was a decent set but you needed the strength of Thor to press the talk button. Also, on occasion someone would find our frequency and start talking through her handset. She’d be laying peacefully in bed and all of a sudden a scratchy loud voice would appear from some truck driver, scaring the hell out of her. A baby monitor was a better idea but K would move from the bedroom to the living room so I figured we needed something portable. Anyway, that was one thing I didn’t get quite right.  I should have gone for the baby monitor.

These days baby monitors are pretty sophisticated and come with an entire suite of features including webcam with infrared so you can see what’s going on in the dark. You can even get them with temperature and humidity readings. Some of the interesting ones are Withings Smart Baby Monitor, BabyPing, Izon and Foscam. I could have used any of these and it would have been a big help, so long I was in the house.

Another way I could have kept an eye on her was with a simple webcam and microphone set up from one of our several computers. Many households have more than one computer these days and one can be used to keep an eye on your loved one. By staying connected to a service like Skype I could have had a visual as to how she was doing. With a microphone attached we could have communicated both ways by voice as well. With Skype there’s no cost. That may have been a good cost effective solution.

If your loved one is having to take medication at various times of day there are multi-alarm pillboxes. You can keep your pills organized just like other pill boxes but this will sound an alarm to remind you or your loved one that it’s meds time. There’s also a highly rated app for the iPhone called Rxmind Me Prescription which is pretty sophisticated. It will track multiple medications and alert you to take them at the appropriate time. It can also track when you’ve taken your meds and even maintain photos of the particular medication so when the reminder pops up you can see what it looks like. Want to find out about one of the meds? It also comes with the entire FDA Drug Database.

Actually there are quite a number of other iPhone apps good for caregiving and healthcare. I just downloaded one for emergencies. If I were to get, let’s say,  a heart attack or end up in an emergency situation, all I need is about 5 seconds to open the iPhone app and press one big button which will alert  people on my contact list by email with a note I’ve already composed (Help! I’m in trouble!) and will call 911, the police, and the hospital. When my messages and calls go out it also includes a GPS location of where I am. This is great to have if you are alone. It’s called Click2BSure. Of course there is always the Life Alert  (help, I’ve fallen and I can’t get up!) system which requires professional set up and a monthly subscription fee. But it’s endorsed by C. Everett Koop and although Click2BSure is only $1.99 and has no subscription fee it’s hard to wear an iPhone around your neck while bathing.

Tracking shoes great for Alzheimer patients who disappear.

Tracking shoes. My uncle, who suffered from Alzheimer’s, was lost for days as he wandered Philadelphia. This could have helped his family tremendously.

A wonderful technology supported service  is provided by an organization called Lotsa Helping Hands. This service helps you to organize a group of people to volunteer their time with caregiving. So let’s say you have a friend who’s battling cancer but is alone, you could use this site to organize friends and family to pitch in.  You get a package of tools on their site to help your team of people manage the caregiving. For instance, there’s a “help” calendar which allows members to schedule and sign up for tasks. Your community has a message board to discuss things, a place for well wishers, notice of events, occasions, a place to store vital information and more. All this is a free service! There are some great stories on their website about how it has helped people deal with difficult caregiving situations. There are already 1.2 million community members on the site.

Helping a loved one to move around when they become very weak can be quite a challenge. A couple of years ago Panasonic announced a new product to help. It’s a hospital type bed that becomes a wheelchair and comes with its own hair washing robot. Sounds a bit like something out of the Transformers.  Here’s a blurb from their brochure: “Panasonic Corporation today announced the development of an electric care assistance bed with an integrated wheelchair and a hair-washing robot that drew on the company’s robotics technology. They are designed to help support safe and comfortable living of the elderly and people with limited mobility while reducing the burden of caregivers. “  It sounds interesting but I don’t know if I would have trusted a hair washing robot with taking care of K’s hair. Still, the Japanese seem to be pushing the boundaries on the kind of technology support we can get as we age or need serious care. I’m going to keep a close eye on their work, even though it’s unlikely such products will retail for under $20.

One thing is clear, there are people in the world looking for ways to make caregiving a little less stressful and more efficient through the use of technology. For us non-paid caregivers that is a welcomed thought. I know how easy it is to sneer at technology, but when we are in a caregiving situation having to manage what seems like a million different things, technology may prove to be a way we can more easily juggle it all. We are living at a time when the available technology is still being understood for its capacity to serve us. So, until we lose all electricity I say it is worth looking further in to it. I’d be interested to hear of other technologies you’ve come across that’s helpful. Meanwhile I’m going to try on a pair of those tweeting jeans. Happy Holidays!

Thankfulness and All That Jazz November 27, 2012

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The true story about the start of Thanksgiving is a contentious one and unbearably fuzzy when researched. Food does appear to play a role in it, but that enchanting scene of Native Americans and settlers sharing a turkey around a large rustic dining table may only be a fabrication. Still, I think it’s an incredible idea to have a holiday dedicated to giving thanks. What the heck, right? If we are going to have a holiday, why not have at least one devoted to remembering all the things we can be thankful for? And while we’re at it, lets spend that time with the people we care about and have a feast.

I have to admit that I find taking only one day out of the year for a thankfulness celebration a bit thin, but I’ll take it. And, it’s my opinion that we don’t really need a questionable story as an excuse;  any thankfulness will do. Thankfulness is one of those rare economical pleasures we can indulge in at a time when our budgets may be stretched buying the latest high tech gifts which often have a “thankful” life of a few months at best.

This Thanksgiving I was feeling particularly thankful for all the wonderful people who’ve touched my life and contributed something to my personal evolution. Thanksgiving dinner was not only exceptional food-wise, but was also exceptional in the quality and warmth of my hosts and the endearing nature of their family and guests. It’s a great feeling to not only fill your belly with delicious food, but to feel your heart filled up as well. (more…)

Distracted From Ourselves November 17, 2012

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I was just in Brighton, UK, on business for a week. Winter is not exactly the best season to be there but I do happen to enjoy Brighton anytime of the year. It’s one of those cities where you can live perfectly well without a car. The public transportation is prolific, regular and predictable and many areas of town are pedestrian biased with charming surroundings. I usually leave there feeling more fit and healthy than when I left. The cool, moist sea air cleans out the dust I’ve accumulated in my lungs from desert living and there are enough hills to get one’s heart pounding. Great food abounds. Yet unlike NY or San Francisco, Brighton center is smaller and more manageable. There are many narrow streets filled with one-of-a-kind shops and surprises around every corner or tucked away in some unsuspecting alley way. People fill the streets in the evenings and all day on weekends. Friends sit outside of the pubs or cafés bundled up chatting while families stroll along looking like they are having a great time. Sounds idyllic, doesn’t it?

As is my routine, I went out early each morning when the streets are empty, to have a brisk walk and to get caffeinated at one of the coffee houses I frequent. After six days of gloom and rain the sun finally broke through one morning. When the sun peeks out, even a tiny bit, it’s celebrated as if it were the liberation of a country from years of bitter tyranny. Even in 48 degree weather people will be out in droves wearing shorts. I even saw a couple of people trooping around in nothing more than a T-shirt that day.

After my morning coffee, I left that wonderful section of town, called the Lanes, and made a left turn onto a main road almost colliding with a young woman rushing to get somewhere. She was wearing rather large headphones connected to a device hidden in her pocket; a smart phone I suspect. She seemed decisively cut off from the world. I was barely noticed and not acknowledged. It got me thinking.

My thoughts on such walks are usually all over the place but in their own fascinating way they always seem directed towards working things out or trying to come to greater understandings. For instance, I was planning to bring K along with me this year and while walking around town, every time I’d pass something that I really liked, I would get excited about sharing it with her – that is until I realized it will never be. I kept going through that thought process over and over again understanding a little more deeply each time that it would never come to pass. My thought pattern was part of a greater process of learning to accepting my loss and no direction was needed from me. In the quiet, distraction free periods of my walk the internal work I needed to do happened quite naturally. And it felt so good.

There was an article I came across recently about how, according to one nurse who specializes in caregiving end of life patients, grieving is a process in which a person seeks equilibrium. Normalcy.  She even refers to the bereavement stage as the creation of a “new normal” ; a kind of homeostasis. I really like that word homeostasis. At its Greek root “stasis” means “standing still”. It’s while standing still that one can observe with greater precision what’s going on.

We live at a time when it’s far too easy to distract ourselves, be in constant motion and not allow a natural inner process to happen. The result is that we give up a lot.  With the process I went through being a care-giver and a constant companion to another human being, I certainly could have benefitted from more quiet time with myself. There’s a time for distraction, but the insights that come as a result of “being still” are invaluable. It’s sometimes scary to be silent and alone with one’s self, but maybe it’s because we’ve made it such a foreign part of our lives. I remember times visiting my father and how uncomfortable he would be if we weren’t discussing something or busy. I spent a day with him once and I swear he spoke virtually non-stop from 9:00 am in the morning until I dropped him off at his home later that night. Whenever there was a moment of silence he just had to break it. On his way out of the car he said to me “You talk so little!”

It is so easy with our myriad devices to plug in, turn on and tune out around the clock whenever the discomfort of silence overtakes us. Ha! I not only travel with a laptop and smart phone now, but I also carry a tablet! How nuts is that?

Now that K is gone I find myself spending plenty of time alone and in complete silence. In the quiet I find I can more easily review what happened and see things that I hadn’t noticed before. I don’t try to do this, it’s automatic when not distracted from myself. I am now seeing things that could have made the end of life process and care-giving even more meaningful and warm for K and myself. I could have seen it then if I had given myself the space. Now it does no one any good. I don’t feel I’m beating myself up over this, I’m simply recognzing the value of the time we can spend with our self and how much it can reveal to us.

Our natural internal intelligence is an incredible gift and seems to have an extraordinary ability to take in a wealth of information and, if left alone, will in some mysteriously way make sense of it and show us our next step or reveal what it is we’ve been trying to see all along. It really amazes me. Have a happy Homeostasis.

Facing Mortality Head On October 24, 2012

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Several months ago I became acquainted with Richard Wagner Ph.D and had the pleasure to read his book The Amateur’s Guide to Death and Dying.  His work with people facing end of life issues is inspired and I admire his fearless approach to go into territory most consider taboo and awkward.  Richard Wagner has been working with terminally ill, chronically ill, elder and dying people in hospital, hospice, and home settings for over 30 years. He facilitates support groups for care-providers and clinical personnel, and provides grief counseling for survivors both individually and in group settings.

He founded Paradigm Programs Inc, an innovative nonprofit organization with a mission to be an outreach and resource for terminally ill, chronically ill, elder and dying people. He was honored with the prestigious University of California San Francisco Chancellor’s Award for Public Service in 1999 for his work with sick, elder and dying people. (more…)

How About Leaving Some Surprises? October 13, 2012

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As of Thursday the 11th,  it’s been 1 full year since K passed away. It’s difficult enough to understand she is gone and not returning, no less comprehend what a year means. So much has transpired in between, yet a year seems just impossible.

Over this period I’ve been observing some interesting things about the grieving process; one of those things is the interplay between memory and feeling. Sometimes a feeling will inspire the memories and sometimes the memories will inspire the feelings. The feeling seems to be the key component though. I can at times actually go back to the same feeling I had as when she was in bed and I was caregiving. Once I get to the feeling, the floodgates of memories open up. Everything from that time becomes accessible.

Quite often this year I’d find myself in search of the feeling. This would play out for me by cleaning house and going through all sorts of items such as clothing, files, books, boxes and whatever else may contain some trace of K’s life. Every now and then I would uncover some surprise; something unexpected. Invariably, whatever I found would bring me back to the feeling where I would whole heartedly indulge in the experience. There, I could spend hours sploshing around in the emotion and the memories.

A few months ago I was cleaning out my office closet and came across several discs. On these discs were about 30 short videos that my then business partner and I and created. The videos were part of a training simulator we developed for sales people. In producing the videos we used K and another friend of ours to play the role of executives in a fictitious company. I had forgotten about this disc and now, almost ten years later, there it was. And what a fantastic surprise! (more…)

Leave No Room for Doubt October 6, 2012

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From the The New York Times, Oct. 6, 2012: “An appeals court panel on Friday ruled that a hospital could remove life support from a terminally ill Queens woman, but now there appears to be some doubt about what the patient, a 28-year-old bank manager with brain cancer, really wants.”

I created the section “Some things you need to be considering” to help non-paid caregivers, entering a caregiving situation, be aware of several key issues they may face caring for someone with a terminal (or potentially terminal) illness.

Taking care of someone in their final days is a great responsibility and an amazing gift as well if you can approach it right. Taking time to consider the various aspects of such caregiving is critical for both the person being cared for and the caregiver. The list of considerations I created comes strictly from what I experienced and so may not be complete for your situation, but there’s enough there to give you a heads up and a good, if not nearly complete overview of what to prepare for. Because of the list’s importance I decided to give each item a separate post to elaborate on the issue and also provide some resources as a springboard for further research.

The first item seems like a simple one: where do you want the caregiving to take place and where would the person like to die? It sounds simple, but it’s not always an easy decision and one that can be influenced by many variables. Not only that, it becomes part of a bigger discussion; one about the law. Before your eyes glaze over and the temptation to click away overtakes you, bear with me because although you may luck out and find you can go through an end of life caregiving situation without hassle, don’t count on it unless you prepare ahead of time. Oh, and that “time” can be any time. It’s not exactly something we control. (more…)

The Challenges of Uncertainty September 19, 2012

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Note: I took a bit of a break. I’ve been in Australia at a most wonderful retreat, camping out and laying off all electronic communications. I went through about one minute worth of withdrawal, but once I saw the nature and breathed the cool outback air I was home free. During that time I did no blogging or tweeting; I simply enjoyed the experience of life. K and I had gone to this spot several times together over the years and she loved it dearly. The photo is from there.

It always fascinates me that a baby, without any prior training, knows how to feed off its mother and knows how to smile. Without speaking our language it is expert at communicating effectively when it needs something.  Seeing this helps me understand that there’s a lot built in to us at birth. It’s nothing I would categorize as “mystical” or “spiritual”, it’s just there. (more…)

“The Conversation Project” Breaks Ground August 28, 2012

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Some of you know that the purpose of this blog site is to get people talking with their loved ones about preparations for an end of life situation. After my caregiving experience with someone very dear to me I became keenly aware of the importance of having such a conversation and how much it can help the non-professional caregiver as well as the one being taken care of.

The reality is that almost all of us will enter into a caregiving situation once or multiple times in our life. I recently saw a quote by Rosalyn Carter that says it very well, “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers”. Caregiving is not something we will be exempted from unless, I suppose, we are living alone in a remote cave in the jungle.

As our population continues to age, many Boomers are now finding themselves caregiving for their parents. Increasingly, the Boomers will need to be taken care of as well. K was a Boomer, as am I, giving me some insight to what lies ahead for many of us; and with the huge population of boomers, caregiving will become massive. As ominous as that might sound I happen to see something exciting about it. (more…)

Hope; A Standard Feature of LIfe? August 21, 2012

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This past week I had lunch with a couple from my neighborhood. I got to know them about a year ago while I was out for a walk and immediately liked their company. They met K only once, on a day I took her out in a wheel chair to get some fresh air and take in the wonderful landscape of our community.

Over lunch the husband, H, told me about a fight he waged, a number of years ago, with a large cancerous tumor in his throat. His tales of having to suffer through chemotherapy and radiation were frightening and heartbreaking. The upside was that it all worked. He actually beat back the cancer and is still living, and I have to say looking quite healthy. At 70 plus years he looks younger than me. (more…)