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Four Years On October 20, 2015

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kris markerWhen it reaches this time of year the air is chilly and the sun rises much later than the summer months. The dark, cold mornings sends me back four years as if it were yesterday. I can feel the heightened sense of awareness I had and the anticipation that something so profound is taking place that it is forever irreversible. The exact emotions from those four year old mornings still come back. They are intimate friends who visit the same time each year, and unlike me, they don’t seem to age.

It’s hard to believe that last Sunday was four years since Kris’ departure. Time goes so quickly and comprehension takes so long. On this “passing” anniversary I took the day to be alone, to reflect, visit the site where we buried part of her ashes and read the journal which I began writing the morning she left. Believe it or not, I had a great day.

On one hand, what’s to understand other than we are all coming and going? This “coming and going” cycle has been happening for quite a long time and it’s absolutely nothing new or surprising. We see it all around us. Yet it is surprising when it hits home. It is an abrupt ceasing of a continuum with no reset or rewind button. Even old acquaintances who I don’t particularly like, and have no interest in seeing, can be reached through Facebook. Not Kris. There’s something terribly ironic about that for me.

I saw an article recently about a young woman, overcome by cancer, who was going to have her brain preserved through cryogenics with the hope they could bring her back one day. I know that’s an unusual enough story to grab a lot of attention. But what really got to me was the photo of her and her husband on a mattress laid out on the floor.  She is on her back covered to above the waist with a blanket and dressed in pj’s. The picture caption says it was taken during the last days of her existence.

She seems to be very withdrawn and in a state I recognize from having watched Kris. He is slightly curled up fetal style next to her with his head resting on, or next to, her covered legs. He is looking up towards her face and clutches the blanket by her waist as if trying to hold her back from going somewhere. There is a sad beauty to this photo. The caregiver husband is helpless except to be there, be loving and execute his wife’s wishes. He has to witness it all and remain behind to remember what he saw and how he participated. I just loved how he managed to stay close to her during this winding down phase.

What most people in an end-of-life caregiving situation don’t realize (unless they’ve been through it before) is that as hard as the caregiving may be, something more difficult is just down the road – the aftermath. I remember the hospice nurse telling me many times, “Ira, be ready for when this is over. It will come as a jolt.” Though this didn’t resonate for me at the time, she was right. The hardest part has been afterwards. Why? Oh man, there are just so many reasons. But what makes these reasons particularly tough is they go on and on. Unlike us humans, these reasons die hard. I’m sure some can persist for the rest of a person’s life.

The American Cancer Society’s Behavioral Research Center conducted an 8-year study called the American Cancer Society National Quality of Life Survey for Caregivers. They began the study in 2002. It is the largest nationwide, long-term study of its kind. I recommend reading about the results. One of the findings said that, “caregivers may have unrealistic expectations: Some cancer caregivers feel they should be doing more than is realistic, creating a sense of guilt, which is linked to an overall poorer quality of life.”

I’m sure we all know this but it’s great to hear it coming out of such an extensive survey. It’s very easy when caregiving to lose sight of ourselves and get overwhelmed. We can ourselves get sick, irritable and maybe find ourselves not be able to do anything at all. Still, it’s hard to consider taking time away and regrouping, especially if you are taking care of someone at home. But the guilt doesn’t go away when all is finished, it just morphs into something new; “Oh, only if I had….”.

Another finding in the study I found interesting was the difference between husband caregivers and wife caregivers. Rachel Cannady, one of the lead research scientists on the study, commented that, “Men tend to be ‘fixers’ when things aren’t right, so when a husband sees his wife struggling with cancer, he might try to fix the situation rather than help her adjust to it. Husband caregivers would benefit from interventions that educate them on how to cope with their wife’s distress around having cancer.”

Wow, I wish I had read that early on. There was probably a lot more ground to cover than I was comfortable to venture in to with Kris. As a matter of fact, I’m certain there was – and that continues to be a sore point for me. It’s one thing to feel some guilt while caregiving, but it doesn’t stop there. I can think of so many things now I could have done to make her existence better, like talking to her more. But at the time I could only see the obvious day to day needs like making sure the meds were taken, she was free from pain and that I had a big supply of mashed potatoes (she loved eating mashed potatoes during her final weeks). The less obvious was harder to get to.  So, though I am having such great ideas now, there is nothing to do with them. Maybe I’ll end up in another caregiving situation and will be that much wiser.

There is a lot of great material out there for caregivers about this. As I’ve mentioned before, I’m currently quite fond of the work of Atul Gawande. He takes the business of elder care and dying to a level of humanity that is so valuable not only for the person being cared for but also for the caregiver. It’s a lot better to be conscious during the entire episode and not have to live with reviewing what happened over and over again. It’s far better to be well informed and have some insights as to what our loved ones may be going through not only physically, but mentally and emotionally. For them it would translate into a  better transition. And for those of us who remain behind we might remember the natural beauty of how a loved one left our world and the small but important part we played in it.

Caregiving: Stress Ending in Magic July 26, 2015

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OLYMPUS DIGITAL CAMERA

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

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Elderly CaregiversAn 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.

Walking the gray lines October 10, 2014

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fall leavesIt’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

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.