Caregiving: Stress Ending in Magic July 26, 2015
Posted by ijwoods in Blog+.Tags: caregiver burnout, caregiver stress, caregiving, caregiving challenges
6 comments
Kris With Close Family Friends
I recently conducted a focus group with people who are, or have been, non-professional caregivers. The purpose of the group was to get some information to help with the development of a program that I believe will bring a great deal of comfort and strength to the caregiving community.
Getting together with a group like this can be quite an emotional experience. It goes deep. What was most surprising to me was the way we went from looking at what made caregiving so stressful to discussing how positively our lives were affected in the process.
The people in this group were varied in background and situation, but all had experienced caregiving someone dear to them. A few of them were taking care of elderly parents who were well into their 90’s. One had been the caregiver for her parents and 2 siblings losing them all in less than a year, while others were primary caregivers for a spouse who passed away from cancer.
The first thing I asked the group was what they found to be the most stressful part of caregiving. It was as if I had thrown a match into a room filled with gasoline.
For one participant, the biggest stress was battling her own ailments while caregiving. She was so tired from her poor physical condition that she was on the verge of collapse. To make matters worse, when she discussed this with a doctor he chided her and made her feel guilty. Realizing she had to do something she saved herself by taking a break for a few days while her parent was cared for in a hospice facility. This allowed her a chance to rest and regain some sanity. But even so, it was a struggle to allow herself this needed respite because of the guilt associated with not being up to the task of going non-stop.
Another person talked about the emotional drain. Being at the hospital at all hours and working through restlessness and exhaustion often made it a challenge to be at the top of his ability to give. “The hardest part was just trying to get some rest.” He told the group.
One commented, “Don’t ever say ‘It can’t get worse’, because it can and does. When others are asking if you’re eating, sleeping or getting a little time away the answer is ‘No, I’m not. I can’t.’”
And then there’s the coping with the person who’s dying. Many talked about the stress of working around their loved one’s moods, the affects of medication and a stubbornness to stay independent, even if it meant great danger. “These things will scar you. The dying person may hide their pain so as not to burden you. The person’s denial, can cause fights. I had to sneak on the phone to call the nurse and then go through more fighting as a result. But this is how it is.”
Another commented, “It’s like you are putting them through an inquisition – ‘what is your pain level? How much does it hurt?’ They will tell you everything is okay, it’s not so bad. Then you go to the hospital and once they are with the doctor or nurse you find out pain is worse than they were willing to admit.”
“I fear my mom could fall and be by herself.” one caregiver chimed in. “I see she is losing her memory but she doesn’t believe it and continues to do things that she promised she would stop doing. I worry all the time.”
Yet as stressful as all this sounds there was also something profound coming out of the experience. When I asked them what it was they learned about themselves I thought I had walked into a different room altogether. Here are some quotes from the participants:
One person begain with, “I was very strong to begin with but got stronger and stronger based on the strength I had developed while my wife was dying. Another said, “It’s a humbling experience. I learned about life.”
“I had been sitting with my younger sister for sixteen hours or more before she died. I helped put the body in the bag when the funeral home came to pick it up. I helped put her in the van. I felt a sense that I had done everything that I could have done for her and there was a beautiful feeling of relief. Although I’ve been a spiritual person I don’t know what other experience would have taught me that.”
“I have found a sense of humor. I see blessings and I am grateful for that. My mom told me while dying that if she didn’t have so many things wrong with her she’d be in great shape.”
“I came not to care what anyone else thinks, and to enact the decision at the time that I think is right, and to live with it. Just do it, and don’t worry about what everyone else thinks.”
“What an amazing gift to be able to be there for someone, it’s a privilege to do that for someone. It’s also a need, to be able to give of myself in that way.”
I always find there’s something special about having a conversation with other people who are caregivers or went through an end-of-life caregiving process with a loved one. It touches a nerve and everyone has so much to express. Perhaps through caregiving and being part of a loved one passing we become aware of the fact that there’s magic embedded in life that we take for granted. It’s when we see the process of someone close to us leaving this world we witness the magical power of nature that even doctors and our greatest scientists can’t fully explain. Death is uncompromisingly impartial. We see it. We live through it, we don’t understand it – but it’s real. It’s not a movie. And it wakes us up. The only thing I’ve seen comparable, but with it’s own nature, is on the other side of the equation – someone coming into this world. A story that’s waiting to be lived, loved and told.
The Era of Aging Caregivers? July 12, 2015
Posted by ijwoods in Blog+.Tags: aging, Atul Gawande, caregiving, caregiving challenges
3 comments
An article caught my attention in the New York Times recently about the aging of non-paid caregivers (More Caregivers are no Spring Chickens) . A study cited in the article claimed there were as many as 7% non-paid caregivers over the age of 75. That doesn’t sound like many people until you learn there are some 50 million non-paid caregivers in the US. That 7% equates to about 3+ million caregivers over the age of 75. That’s astounding.
I’ve been hearing from a lot of friends and acquaintances about their aging parents still living into their late 80’s to late 90’s. I see a lot of them in Facebook photos together celebrating another 90+ birthday and still looking pretty good. One person employed at my business just lost her uncle who was 108. Despite his age he was very clear about choosing his own cremation urn before passing away and managed to do so just days before going.
It’s no illusion; people are living longer. “Life expectancy has been increasing pretty steadily for the last 50 years or so,” said Robert Anderson, chief of the Mortality Statistics Branch at the CDC’s National Center for Health Statistics who released a study on aging in 2014. The question I have to ask after reading that is “what about the quality of life for the elderly?”
Let’s face it, as one gets older things break down. There’s no getting around it. Even though healthy living can slow the process it can’t stop it altogether, ultimately we are overcome. Reports by the National Health Interview Survey and the Health and Retirement Study show that with increased age the quality of health in the aged has not improved. Diabetes alone is now affecting an increasingly greater part of the population especially seniors 65 and older. A whopping 26% have diabetes according to the ADA (diagnosed and undiagnosed). This makes me believe that there’s some serious care giving ahead – if it hasn’t hit us full force already.
With an aging population that’s living longer, it’s logical to conclude that those of us who end up in care giving situations will find ourselves doing it at a more advanced age as well. I can’t help but think of my own experience. I can’t really say it was strenuous for me because I felt as if I were on a mission and was energized in a way I had not experienced before. Plus, I wasn’t really that old (although Millennials may argue that point). It wasn’t until after Kris’ passing that the emotional and physical strain hit me like a sledge hammer.
Still, even though I had been working out regularly and was in reasonable shape for someone in his 60’s, one day I threw my back out when attempting to move Kris. I was simply lifting her legs. At that time she was down to about 90 pounds, so this wasn’t a strenuous move. I did my best to ignore the pain, but it was sharp and persisted right up through her last days. Caregiving can get pretty physical.
I can’t imagine how I could have been as attentive as I was if I had in poor health taking loads of medication of my own. Having hospice services was a major relief in the process, but the nurses don’t come over to your home the entire day. They will come to check in once a day and stay for about an hour. They’ll also come if it’s something important you need help with. Someone will come over several times a week to help clean your loved one, make sure the bed has new sheets and so on. Other services require finding a good person or organization, which costs extra. Outside of the hospice, finding the right people is hard.
For this reason, and many other, some insist that it’s best to put our loved ones into a physical hospice or nursing home where they can receive round the clock care by professionals. But what do you do when the person dying is very clear on how they want to spend their last days – and it’s not in some facility, but at home with family and in familiar surroundings? How much are we going to let go of our normal day to day activities to allow them to fulfill their wishes? Going that route may not be the easiest path, and may even seem impossible, but it is certainly very satisfying in the end.
If you are finding yourself torn by having to decide such a thing you may want to read Being Mortal: Medicine and What Matters in the End, written by Dr. Atul Gawande. It is by far the best book I’ve read on End-Of-Life care. It’s one of those books I wish I had read while Kris was alive. Gawande focuses on the quality of life we can offer our loved ones as they are winding down and presents some inspiring examples and wonderful stories of people and nursing homes who are bravely innovating and developing ways to make a difference in someone’s remaining days.
There are no easy answers to much of what we encounter in caregiving but perspective and understanding help a lot. We live at such a busy and potentially stressful time in history. Families are blown all over the country and globe. The grown up children and even the parents have much to deal with just to keep a roof over their heads and maintain the complexities of our lives. The thought of having to take care of someone for an unknown amount of time can seem overwhelming and inconvenient. Normal living gets turned on its head.
Many of my friends are finding that not only have their parents lived a long time, but so have they! What can we really handle by ourselves? Will we have the support of the rest of our family when the time comes for caregiving? These are questions that don’t come up for discussions easily, yet it needs to be discussed sooner than later. After reading Gawande’s book I believe there is growing change in the way we approach death that has an elegance and beauty to what might otherwise be the opposite, and much of it has to do with getting into those difficult conversations.
What Role Does Mindset Play? November 9, 2014
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, Ellen Langer
7 comments
I always keep a lookout for good, interesting journalism on end-of-life caregiving and I have to say that the New York Times has really delivered some great articles over the last several years. A few weeks ago another article caught my attention, not about caregiving per se, but about a subject that I believe needs to be part of the caregiving conversation; mindset and health.
The NYT article “What if Age is Nothing But a Mindset?” highlights the work of psychologist Dr. Ellen Langer, a Harvard psychology professor. Back in the early 1980’s Langer ran a psychology experiment with a group of men, in their seventies, who were in good health but manifesting typical old age deterioration; walking with a cane, arthritis, stooped over, weakness, etc. At the conclusion of the experiment, five days later, the men had gone through a transformation. “They were suppler, showed greater manual dexterity and sat taller… Perhaps most improbable, their sight improved. Independent judges said they looked younger.” Today Langer is involved in bringing her work to even more challenging areas such as using her brand of psychology to try and shrink tumors in stage 4 metastatic cancer patients. It was at this point in the article that I started to think about her work in the context of my own caregiving experience.
What Langer did
In her original experiment Langer took this group of aged men, had them live together surrounded with nothing but items and culture from the heyday of their past. For five days they were immersed in the 1950’s, watching and reading the news from that time, TV programs from that period, magazines, music and so on – all from that period of time. Even their conversations remained in this period. The outcome? Reliving that time period impacted the mindset in which they viewed themselves – i.e. they were able to get in touch with their more vibrant and youthful selves.
The physical impact of that change in mindset appeared to have a direct effect as noted above. In a similar fashion Langer is attempting to bring a positive mindset to breast cancer patients by once again creating an environment that will have them think differently about themselves and their condition. As Langer describes it, even the very diagnosis of the illness appears to cause a mindset that brings on the symptoms the patient expects to feel. “You change a word here or there, and you get vastly different results”.
Now, even though I believe there is some truth is all this, I also know that in the long run, no matter what we do, we will not overcome death and disease. Still, the question it brings up for me is twofold: can our mindset actually prevent us from dying prematurely and during that extended period can we maintain a good quality of life? There are a lot of books out there about the power of our words and how those words affect how we view ourselves, resulting in habits, actions and quality (or lack of) of life. But how much of this is anecdotal and how much is scientifically proven? Nonetheless, I like the sound of it. It resonates with my own life experiences and I was consequently happy to learn about Langer’s work.
So what about us caregivers? 
Most of us who end up caregiving are not psychologists, doctors or professionals in the caregiving industry, yet we become involved in a dynamic with another individual that can be highly complex and overwhelming. At times it’s very simple because the love and care we feel comes easily and genuinely. That love guides many of our actions. But there are so many variables caring for someone that it’s easy to feel way out of our depth. To do the smallest thing like roll someone over on the bed, can be terrifying when you don’t know what you are doing. But here is a whole other aspect, namely the psychological side of what’s going on. Add on top of that times when your loved one is delirious or unable to think straight and you’ve got some serious challenges in being assured you are responding in the best way.
But it’s not only us, what about those professionals who interact with our loved ones such as doctors, hospice and hospital nurses and aids? I really loved the hospice nurses who came over to care for Kris but I noticed that their psychology varied. Some were more sensitive to what was said around Kris, others weren’t. Some brought up language in her presence that assumed death, others refrained. Those conversations that assumed death made me very uncomfortable. Not because I couldn’t handle it, but I was worried about how it was affecting Kris.
On one hand I see there is value in being realistic, but on the other hand I wonder how our “realism” affects the recipient? I have met people who have overcome amazing odds. A friend in Florida was diagnosed with cancer and was told she didn’t have long. She mostly ignored it and went on living happily for another 15 years. Yes, this may be an anomaly, but it also makes me wonder about the toll our mindset has on our health and well being.
When Kris found out that the targeted chemo didn’t work on her secondary liver cancer and that the lesions had doubled in size, it felt like a death sentence was issued. Even the doctors said it wasn’t worth doing anything at that point. We both cried. It was like entering a world where hope was no longer valid. I find it chilling that from that day onward her deterioration seemed to really kick in and escalate. Sure maybe it would have been the same even if she hadn’t received the results of her test, but I’ll never know.
Does caregiving only encompass making the person comfortable? Or is there another aspect to this in which our words and mindsets play a bigger role than we think? I don’t profess to know the definitive answer to this, but I will certainly keep my eye on the work of Dr. Ellen Langer.
What are your thoughts on this subject? I’d love to know.
Here are a couple of Dr. Langer’s books:
Counterclockwise: Mindful Health and the Power of Possibility
Walking the gray lines October 10, 2014
Posted by ijwoods in Blog+.Tags: caregiving, caregiving challenges, going within, meditation
7 comments
It’s a day away from the third anniversary of Kris’ passing and over the last few weeks I find myself again reliving and reconsidering what took place.
One thing I discovered while being a primary care-giver was the unrelenting number of situations for which there were no easy answers, yet decisions needed to be made. Even no decision was a decision. Doctors and nurses have seen quite a bit, are well trained and are confident about what they are doing, but they don’t necessarily have all the answers. Clergy have also experienced quite a bit but many of their answers require belief. As a caregiver I was at times left in gray areas having to make decisions based on my own research (thank you Google), experience and observations.
Growing up I remember hearing quite often that we come into this world alone and we leave alone. Although I could think of instances in which this didn’t seem true (twins for instance) I could understand the essence of this saying. Over the years I have experienced that taking time to go within myself is definitely an individual endeavor (some people may want to call this “meditation”). When I go within no one gets to come along nor has any idea what’s going on for me. I have always enjoyed how this non-activity can make me feel complete despite the lack of any external stimulation. Kris and I shared this passion for going within. It wasn’t something we did as a team, it was an individual undertaking and the experience was individual as well. And though we didn’t discuss it much it was the basis for a deep bond .
I couldn’t help notice that as she was becoming increasingly ill that she spent a lot of time within herself. She never announced it. To anyone looking in, it would have looked like she was sleeping, but I could feel something familiar from her, and it wasn’t sleep. Occasionally I would interrupt her to make sure she was okay. I’d often ask if she wanted something entertaining, like for me to read her a book or play some music, but she almost never wanted anything. She was quite content to just lay there in silence for hours on end. The peace around her was so attractive at times I would quietly join her.
During these times, while lying next to her, I found myself contemplating what it would be like to pass on. What would I be feeling? What might my emotions be? One thing was clear, the feelings and experiences would happen to me alone. Even if someone was holding my hand, I would have to go through this process alone. Whenever my time comes it is going to be my own personal journey, just as this was hers. But, what Kris showed me was that it was going to be okay. It seemed as if some biological and psychological changes were happening to enable her to be accepting and ready. The news around us was no longer of any importance or interest. I remember one morning learning that Steve Jobs died, but it was far too trivial to share with her. She was simply being pulled gently away from me and everything else.
So what’s the proper balance for engagement? On one hand we don’t want a loved one to feel alone and uncared for, on the other hand I felt that Kris needed plenty of space so she could transition comfortably without distractions. This transition, for lack of a better word, felt “holy”. It commanded respect. It was a facing of reality. It was a process that no money, influence or power could overcome indefinitely. It was something I had to bow to and feel my smallness. It was overbearing, mysterious and, in its own way wondrous. Wondrous because it was taking what we might consider frightening and was making it natural and gentle. The journey within may be done alone, but it’s not lonely.
Even though I was often by her side it was unclear if she really had any awareness of me. The body was there, but what I loved most about her was slipping away. Awareness seemed elsewhere with an occasional drift into our world to flash an acknowledgement with an angelic smile. She was going, but was I ready to let her go?
Kris
It’s only in retrospect that I wonder about this. At the time it was very clear that I had to give her room to be alone and develop legs to walk into a new world. Where is the balance? I’ll never really know and it’s impossible to ask anyone who’s made the transition. But as I walked that fine line it felt right to give her plenty of time alone so she could build momentum in the right direction. This seemed like the most helpful and respectful approach I could take. I believe from observing Kris that this aided in her own preparations for the final transition while providing enough love and support so she felt physically and emotionally safe to do what she needed.
This particular consideration probably doesn’t come up in the majority of caregiving situations. For me it did. But this was just one of many challenges that appeared each day and required my involvement. What makes these decisions so hard is that we don’t want to cause our loved one to suffer any more than they might already be. Yet while caregiving for someone dying we are often faced with things that are not exactly black and white.
Well, Okay Then… February 24, 2013
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, dying at home, preparations, support
11 comments
A good friend of mine mentioned Conscious Departures on Facebook last week and it generated quite a bit more activity than usual. It’s a little ironic because I have held back from posting anything on Facebook since I first published this blog site last March. For most bloggers this might be heresy especially since I have somewhere over 700 Facebook friends.
The reason for my reluctance has been mostly due to the purpose behind this blog, not because I am unclear about it, but because of my own discomfort to encourage people to spend any time focusing on death except as a very good way to put things into perspective. As I explain on the “about” page, I am attempting to get people to think about end-of-life (EOL) caregiving issues before they are smack in the middle of them. Why? Because that’s a horrible time to get up to speed. That’s what happened to me and I don’t want to see that happen to others.
Still, I am more inclined and comfortable to encourage people to think about life, so to get people to think about the dying process has been a challenge and the reason I haven’t broadcast this site too widely. Thankfully I have connected with some wonderfully dedicated and talented “caregiver” bloggers who’ve provided camaraderie and tons of encouragement to keep me going.
But now that the cat is out of the bag among my friends, it has forced me to come to grips with my discomfort. My conclusion is a non-deterred one; that I am not taking people away from focusing on life but just prompting them to take some time to prepare for what is inevitable. After all, when we go on a long vacation we always take the time to prepare without any philosophical fanfare. We hold the mail, maybe unplug all electrical items, call our neighbors to let them know to keep an eye out for the unusual, postpone our newspaper subscription and so on. A couple of major differences is that we don’t know when this vacation will occur and it’s permanent.
To quote Rosalynn Carter, “There are only four kinds of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.” With caregiving being such a certainty, where is the much needed education? It’s out there but the encouragement… no, encouragement is too weak – the shouting out about the importance of it hardly exists – and I can totally understand. It’s just plain uncomfortable to verbalize urgency for people to focus on the implications of dying. It reminds me of the last segment of Monty Python’s The Meaning of Life when the Grim Reaper pays a visit to people having a dinner party. Everyone around the table is attempting to include the Reaper in their banal conversations, offer him drinks and so on until the Reaper gets frustrated and tells them he’s there to take them and declares “I am death!”. One of the guests turns to everyone else and says in a very understated way, “Well that rather casts a bit of gloom over the evening, doesn’t it?”
In a paper entitled Families and Elder Care in the Twenty-First Century, the authors note that, “For most of the nation’s history, caring for the elderly was a family affair carried out largely by women in the home. As the twenty-first century unfolds, however, elder care in the United States is an increasingly complex enterprise, with much personal care outsourced to paid, non-family caregivers.”
The way our society has evolved families are not as tight, women are making careers and families are smaller. When you combine that with a massive increase in the number older people (in the USA an increase of 11 times in just the last century), who are living longer and who’s number continue to grow, you don’t need to be a sociologist to figure out that we are in the midst of a wave in which either professional healthcare services are going to have to expand enormously, or families are going to end up taking up some of the slack – and they already are. Even an amazingly high number of young children are finding themselves as primary family caregivers today.
I was taught nothing about caregiving. My impressions made it appear messy, complicated and something I was not hoping to ever do. In my own imagination, and based on my experience, when a person became extremely sick they simply ended up in the hospital. There they could get around the clock attention and would eventually live or die. That’s the way my parents went – in the hospital. Caregiving for my parents meant showing up at the hospital, hanging out with them, talking with the doctors, running a few errands and hoping everything worked out okay. Both my mom and dad seemed comfortable enough. But things are shifting; more people than ever want to die at home. They want to go peacefully, if possible, in a familiar and warm environment.
There’s a free online caregiving course called “End of Life” offered by Stanford University in which they refer to studies showing that approximately 80% of Americans would prefer to die at home. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home. A minority of dying patients use hospice care and even those patients are often referred to hospice only in the last 3-4 weeks of life.
So who’s going to do all this “caring at home” when we are all so busy and so few? It’s no surprise that only 20% of the people get to pass away comfortably at home, our system and culture (at least in the West) tends to push us in that direction. And for those who do I wonder what the experience is for the caregiver. I’ve noticed that most of the news articles you will find on caregiving, day after day, have to do with caregiver burnout. That should be telling us something.
Since having had my own EOL caregiving experience I have spoken to so many people who went through the same thing but with their own twist. Nonetheless, like me, they were unprepared and now, many years later, are still deeply affected by the experience. The grief that follows is understandable, but the experience of caregiving for us non-professionals is so often unexpected containing the sublime as well as unyielding strain and daily surprises. Afterwards you carry around powerful and indelible memories. The lack of knowing and preparedness manages to compound the difficulty and takes away from the entire experience being one of magic. Sounds surprising to use that word “magic”, doesn’t it? But EOL caregiving is just that – magical, and those who have been through it, and go through it daily, know what I mean.
So, though it’s far more comfortable keeping the topic of death under wraps, the situation is that we are all going to have to face a caregiving situation or be cared for. As a potential caregiver it is to our advantage to know what we are going to be dealing with not only physically, but emotionally and “spiritually” as well.
There’s a fear that focusing on death or talking about it may bring it on sooner. I also feared this. I never wanted to give K the feeling that she was terminal, and in my own denial I actually believed that she’d turn things around. Thankfully K was far more pragmatic. Even if it’s true that our mentality can make a difference, at some point it no longer does. And though preparing for caregiving may seem like something we can put off indefinitely, getting educated is important and something we must do. There’s little choice. It’s either sooner or later, and later means under duress.
So, I want to thank my friend Joan for posting a link to Conscious Departures on Facebook. I created this blog because I was thinking of my friends and family anyway. Since I am feeling quite passionate about being prepared early for an EOL situation I may as well be out in the open about it. And for those who are already in the middle of it I hope you are finding valuable support in your community and out in the virtual community as well. With hospice care and the growing wealth of on-line resources you can go about your task with greater ease. You can always check out my resources page for more.
Caregiving in a Digital World December 9, 2012
Posted by ijwoods in Blog+.Tags: caregiving, digital caregiving gadgets, technology for caregiving
4 comments
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. 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
Posted by ijwoods in Blog+.Tags: caregiving, life, thankfulness
11 comments
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
Posted by ijwoods in Blog+.Tags: Brighton, caregiver, caregiving, providing comfort, silence
6 comments
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.
The Challenges of Uncertainty September 19, 2012
Posted by ijwoods in Blog+.Tags: caregiving, dying at home, spirituality, uncertainty
5 comments
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…)
Something to Learn From Michael Phelps August 5, 2012
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, preparations, young caregivers
2 comments
I’ve been tuning in to the Olympics this past week and enjoying it quite a bit. One person who will be in Olympic history books for some time is Michael Phelps, now the considered to be the top Olympian ever. When you think of all the competition there is from all over the world it’s really a super human achievement.
I like this one story of a race he swam in the 2008 Olympics when he ran into some serious trouble. During that competition his goggles filled with water so that he couldn’t see anything. Most of us would think “So what? He’s swimming. Not seeing doesn’t seem that bad.” Think about running a race, on a straight track, back and forth and being blindfolded without warning while your competition can see perfectly well. Not only would it be nearly impossible to stay in your lane but you’d be seriously disoriented and freaked out to boot. That may help to understand the immense challenge. Well, not only did Phelps finish out the race blind, but he took gold!
How did he manage to do this? Preparation. His coach prepared him for such an eventuality knowing that he had to be ready for any surprise. He had Michael do things like swim in the dark or race mentally, imagining his goggles were filled with water. They even calculated the number of strokes he was supposed to take in a lap in case this ever happened. So during that race, once he lost all vision, he mentally played the imaginary “blind” race he had swum many times before, counted his strokes and followed his training to touch the wall perfectly and end the race. Yes, he won the gold and even set a new world record. (more…)
Conscious Departures 