A TRUE "LOVE STORY"
NEVER Ends
There's No Greater Love, Than Sharing The Dying Process With The Dying, Nothing Harder
Henri Nouwen
"
Because of Annie"
If you love someone today, try to love them more tomorrow. "Life Happens."
End of Life Care--"The love"
You Know you've Loved, And Done Enough, When All You Had Left To Fight
With, Was Your Love For Each Other.
This bed was created out of love for my beautiful wife Annie. It is and forever will be the bed where she, "made her last stand" in her battle with a deadly blood cancer, Multiple Myeloma. Annie had a 3 to 4 week prognosis. No one knew of her tenacious will to fight in an effort to live, just one more day. She defied the odds so many times in the first two months, they started calling her their little miracle girl in the hospital and at the cancer center. During the 3rd week of Annie's cancer, she broke both femurs, her right hip, and her spine collapsed. On top of that she had 4 broken ribs. I guess what I'm saying is, if you are fighting the battle, never give up on hope, and love your loved one like there is no tomorrow. I gave Annie 24/7 quality care, and my daughter Melissa was my wing man. We were a formidable caregiver team, with the attitude, you have to live, laugh, and love, to beat back a nasty cancer. Annie survived 30 months, and although it was very traumatic times, we're so glad we fought just as hard for her as, she fought to live. Powerful combination. Of course, Annie had incredible doctor's, specialist's, oncologist's, medical personnel and her newly found Spiritual Awakening on her side too.
With grief, it doesn't matter how hard you worked, how loving you were, in fact it's not relevant. Grief tells you, you should have tried harder, done better, and it's not until later on in your grief that you know for sure, "you gave it all you had, and did enough to pull off that final miracle if, the story had not been written. Peace
The Empty Bed
Article--Added 21 May 2018:
After Annie died, if I were to guess, I’d say grief was entrenched in me for, four long years. It wasn’t ever easy, the ups and downs were continuous, and at times I felt like I was just going around in circles chasing my grief…and perhaps I was.
After I made it through those years and started pulling myself out of the trenches, life didn’t just magically change.
It Became a Process
Life became a complex of mazes–so many ways in, but only one way out. And that’s the process some of us must go through to get well. At first the maze held its secret, with the mystery only being revealed to me as I aimlessly wander through my solitude in the maze, searching for the escape route, trying to exchange my old reality for, the new.
I was on a mission until, the mission became me. I became one with my grief. I had a strong sense I was healing, while watching and waiting for a door to swing open, offering me an exit from all the anxiety and chaos I’d been living. But, it was not over yet.
Nurturing The Spirit Through Memories
After Annie died, life became so damn complicated. I wasn’t really sure of anything. Yet, somehow I knew there had to be more to life than, just death. To me, it just didn’t make any sense. Annie simply lived, to die?
During her illness Annie had a “Spiritual Awakening,” however, for the previous 37 years we were married she believed in the Native American Spirit World. Maybe that’s why folks always said, “Annie is so full of spirit.”
The more my mind wandered, the more I realized that, although Annie was dead, her spirit was shining “Brightly.” Instinctively, I knew where the secret to my well being lies.
In My Memories
It seemed reasonable that, I needed to communicate with her, in spirit. So I devised a plan where, I would take a couple hours out of each and every day, turn off all the devices and distractions, and spend time with Annie. I called it “Annie’s Time.”
As odd as it may seem, spending time with Annie was priceless. Yes, there were tears of joy, sorrow–I talked about the good, the bad, but most of all, I talked about our deep love for each other that was cultivated during the darkest hours and days of our lives. It’s easy to love another, but to find the true meaning of love, I believe you have to touch and be touched, in spirit. It’s like a real deepness, a togetherness, the feeling of being one entity–perhaps, “Soul Mates.”
It may sound strange, talking to a picture while listening to some of our old favorite music, but, the conversation and music release little nuggets of information that lead to some beautiful memories. And that’s where we need to go. We’re trying to reconcile the bad, by incorporating it with the good, our togetherness–in spirit. We need to become one.
Becoming one is important for many reasons. In essence, for the rest of your life you will be carrying their love with you, where ever you go. It’s not a bad thing, not selfish, it’s simply a part of who you’ve become.
As you enter the new world in one spirit, there will always be room for another. The past, and all the nurtured memories will be safely stored with you to share as you please...Spirit love is kind, it will not get in your way.
The transition towards your new chapter in life will now be much easier, and full of wisdom from the nurtured memories.
In the end, what it all boils down too is--to be released from the old world, we have to embrace the new, in the spirit of love. "Because of Annie."
Feb 23rd, 2018: The following blogs were written by me (Bob) and reflect my many phases of grief. If you read them, it may help you better understand how you're feeling. None of us grieve the same, but we will and we must grieve the loss of our loved one. You must grieve to get through grief. In my case I'm getting through it, but doubt I'll ever get over it.
The blogs were written, submitted to the Caregivers Space, Ny, Ny., to be published nationally as well as internationally. They've been well received. They were individually written between Jan 1st, 2015 and July 2017, along with over 50 more. As you can and will see, my grief was driven by a deep love for my wife of 39 years, Annie.
About Bob Harrison
Bob Harrison was raised in the heart of the Redwoods in the far northwest corner of northern California. The little town of Crescent City, California was located near some of the world’s tallest trees, with the west shoreline being the Pacific Ocean. Bob spent most of his time fishing the two local rivers where some of the finest Steelhead and Salmon fishing is located. He was also well known up and down the north coast as an avid motorcycle racer, winning several hundred trophies, and one Oregon State title. Bob graduated from Del Norte High School with the class of 1966, then spent a one year stint at the College of the Redwoods, before having a strong sense of patriotism and joining the United States Air Force. After three years of service, Bob met Annie, the love of his life, and they got married in England in 1972. Bob’s love of country pushed him on to what turned out to be a very successful career, retiring in 1991. Bob’s last military assignment was Wichita, Kansas, a place he and Annie decided to call home. Together they developed and ran two very successful antique businesses until the stranger knocked on their door and changed their lives forever; “Because of Annie.
Grief & Loneliness
On 28 December 2015 I posted Grief: a silent killer. In the article I discussed caregiving, grief, stress and the role they play in our long term well being. After reading over one hundred-fifty comments to the blog on the Caregiver Space Facebook page, I saw an alarming issue that I failed to address, and it’s a key ingredient to the others when caregiving, grieving, or after the grief.
Loneliness
Caregiving can create a strong sense of loneliness, as folks, often friends and family just seem to disappear into thin air. That’s compounded by the fact that sometimes communication with our loved one can be very limited due to the nature of the disease or illness. In other words, there may be no communication for lengthy periods of time.
When I was caring for my wife Annie, due to her low immunity we could go several days without a visitor of any sort. And the fact that she was on high dose narcotics didn’t help matters any as, she slept much of the time.
What made matters even worse, was that Annie, although very ill was lonely too. It’s can be a real oxymoron. People can be a nuisance at times, when they come into your home and all they want to talk about is their problems, especially to a woman that is in her hospital bed dying of cancer. But being desperate, loneliness often wants them there anyway. Company becomes company, and the conversation, no matter what it is, becomes fresh and new, with a new voice. Sometimes the new voice takes the patient or loved ones mind off their own illness, and that’s a good thing.
It seems to me, what it boils down to is communication. I wasn’t very good at communicating to friends and family that we could sure use some company. Instead, I just wondered why not many people stopped by. It’s tough. There were times when people did stop by and Annie had very low immunity, the new rules, as laid down by her oncologist, had changed the rules on the playing field. I wasn’t allowed to let any person, especially children, near her over the fear of her catching a germ which could lead to a very serious, and in-fact fatal infection. So I had to turn them away. So as you can see, loneliness is a big part of caregiveing, and can happen through no fault of anyone, or the fault of everyone and everything. Sometimes, loneliness simply gets lost in translation.
Grief also creates a strong sense of loneliness, and can lead to a lot of solitude. On the other hand we may be surrounded by people, but we’re still lonely over our loss. In essence grief and loneliness go hand in hand. It’s the double edged sword effect.
When one grieves over a loss, there can be a strong sense of isolation, and in that instance the isolation creates the loneliness. And I might add, the loneliness felt from feeling isolated is a real problem and can cause mental health issues.
I saw Dr. Bryant, my psychologist, the evening of 30 December 2015. He said to me, “my biggest concern at the moment is dealing with your loneliness.” He said it can create instability in a person, depression, anxiety and escalate to a whole sundry of other problems, which perpetuates being lonely. Many of the illnesses I went through in 2015, probably used loneliness as a contributing factor.
From his words, loneliness is not to be trifled with, and can make you sick over time. Having said that, a full recovery is possible when and if the loneliness dissipates.
Metaphor
When I was 20 years old I joined the Air Force. After basic training and technical school I was sent to England for 3 years. The first six months in England, even though I worked most days and made many new friends, I felt like I was the loneliest guy on the planet. Over time, I think the cycle broke rather naturally as I accepted my fate. I was going to be there for 3 years whether I liked it or not, so I might as well spend my time having some fun. So I did! Eventually, I felt less lonely with my military buddies than, I had at any point in my life.
The truth
In the metaphor the loneliness was real, but there was always going to be a fix. After all, I had a maximum time limit of 3 years to the loneliness, then I’d be going home, and I could always see the light at the end of the tunnel.
Losing a loved one is the real deal. There is no time limit on anything to do with grief or the loneliness, and at the time not much hope either. And there is no magic wand to wave and make things better.
The dynamics of grief is such that we can literally bury ourselves in our own sorrow, cutting ourselves off from the outside world, and our family and friends. In doing so, we inadvertently create circumstances that will fester, and develop into full blown loneliness, during and after the grief.
Understanding that loneliness and stress are bits and pieces of grief, one needs to take grief very seriously. When mixing the three together, the grief can become very intense over a short period of time, and in the case of elderly couples it can lead to extreme grief which develops into the broken heart syndrome. In a research study over a 9 year period of over 373,189 elderly U.S. couples, by Nicholas A. Christakis of Harvard, and Felix Elwert of the University of Wisconsin, it was noted that in 18 percent of surviving male spouses and 13 percent of surviving female spouses died not long after their other half, from sudden death due to all causes. So if you lose and elderly parent, and the other parent is alive, pay attention to them. Help them through their loss if you can.
Personally, I despise being lonely. But it’s my burden to carry and I carry it every day, where ever I go. My life has turned into a 4 step program. First there was Caregiving, then the grief and stress, now loneliness. That’s a lot for me or anyone else to deal with. It’s like being caught in a shadow world where one minute you can see your shadow and the next minute you can’t. Meaning, we walk out of the house with good intentions thinking we have it all figured out, then soon realize, we don’t. It’s just another illusion of happiness. It’s really tough to have anything other than spurts of happiness when your lonely.
Another point I should make is that loneliness is kind of like grief, in that it allows us to make poor decisions. Perhaps, we might do things we wouldn’t normally do for a fleeting moment of self gratification. For example, buying a new expensive feel good toy that elevates our spirits for the moment, but when we get home we think, how silly, I don’t want, or will never use that toy. And the beat goes on.
How do we get out of loneliness
I say we, because I’m stuck in the loneliest period of my life as I write this article. Yes, I could go out and meet someone, but I’m smarter than that. Loneliness is very deceptive. I could one day get over the loneliness, and wake up one morning with someone that I don’t want to be with, or perhaps, I don’t get over the loneliness quick enough, and she decides she’s made a bad decision and leaves me. Either way, someone often gets hurt.
What I think I’m going to do is, get more involved with volunteer work, which will get me out into the community and help me start meeting new people, and doing some things that I might not necessarily want to do, but in order to break the cycle of loneliness, I need to do. I really have no other answers, or options that I know of. I’ve been told, yoga and meditation are helpful, but I’m not that guy. I know this, being around family and grandkids provides some comfort from the storm, but are not the answer. The answer lies from deep within me, and I just have to dive in and pull it out.
This has to be my year, and I’m going to get better and break the cycle of loneliness, no matter what it takes. I know, I’ll stumble, maybe fall a few times, but each time I do I’ll get right back up, dust myself off and try again.
When I was in the 7th grade, and at a school dance, I was so afraid to ask a girl to dance with me, in case she said no. But I did it, and after I got turned down a couple times, I became more determined than ever to get a dance. Then fate intervened, and this cute little popular girl named Bonnie, walked up to me and asked me if I’d dance with her. I couldn’t believe my luck.
One thing I know for sure. Sitting around in this house day after day is not going to break the cycle of loneliness, or change my luck, but it could break me if I don’t get that dance.
And sometimes, despite all we do to break the cycle of loneliness, we still need a little help. So, as I sort of did at the dance, put yourself out there and just maybe fate will do the rest. It’s not going to be easy, but you can do it, and so can I.
My fear is, if we fail, the consequences could be dire.
I wish you the best!
bob@thecaregiverspace.org
After The Death: grief & dreams
After being my wife Annie’s caregiver for thirty months through her battle with cancer, I lost her. I started out as a novice caregiver, but over time I got my Caregiving PhD through on-the-job training. It didn’t take me long to realize the pain and torment some caregivers go through
is really bad.
It was as if my body was always in motion, relentlessly moving to the beat of a hostile drum. Their wasn’t much time for me to sit and relax, sleep, or do many of the things that would have been good for me.
Within the first month I realized
my body no longer belonged to me,
I was a Caregiver. In my case there was no room for being selfish or of wanting anything that might be good for my well-being. But you know what, for thirty months my body never let me down and I gave everything I had in me to Annie. Never once did I get a cough, a cold, or a fever–I just willed my body onward. So, there I was always moving forward trying to stay one step ahead of the pain and fight off any infections. Annie’s bones were very badly diseased, she had virtually no immunity on a daily basis, and needed to live in a sterilized room as much as possible. A very difficult task!
Grief
Technically,
from the day I heard Annie's prognosis I started grieving. After all, a three week prognosis is not very long. As you already know, Annie survived 30 months fighting a nasty cancer. I was told that I was fortunate, in that when I lost her my grief would not be as bad–I had been grieving for quite some time. Don’t ever buy into that theory, it’s not right.
When Annie died, this body that was always in motion lost it’s purpose. I felt like I hit a brick wall doing one-hundred miles an hour. She was just gone–no more giving her medications to her, tucking her in at night, washing her body and beautiful hair, cutting her finger and toe nails, messaging her legs when they hurt, sitting beside and sleeping in a recliner in the hospital for over one-hundred days, telling her and reassuring her “that this is not it Annie,” you’re gonna get through this event, and simply loving her with all my heart and soul–She was just gone! After the initial shock and knee buckling pain my mind started asking questions. Is she okay? How is she doing? Where is she? My faith told me she was in Heaven and doing just fine–but to me in the initial stages of grief, heaven didn’t have a role to play. I just wanted her back!!
An accidental solution: dreams
Having so many questions without answers was eating away at me from the inside out. I was searching for answers. Then one night I laid my head down on my pillow and looked across the five feet to her empty hospital bed. I noticed the sports bandage on her night stand that she wore after braking her pinkie finger. Eureka! A light bulb went on. Annie would sprinkle “Sweet Pea Jasmine” oil on her sports bandage, get in her wheelchair and move around the room wiping it on our fabric furniture and curtains. It made our house smell lovely. My thoughts were, that if
I go get the oil and sprinkle it on my pillow I might have a sweet dream of her. I quickly checked the internet to see what it had to say. It said, by laying in a bed of rose petals it is sometimes possible to invoke a sweet dream, however, it can’t be targeted. I was very disappointed but at that point I was not going to give up. When I went to the wicker basket where she kept the oil, I noticed her perfume. I got really excited, and felt like great things were going to happen this night.
And they did! When I laid my head back down I said a prayer to my creator asking him to let me see Annie one more time, then sprayed her perfume on the pillow and the blanket up near where my face was. After I fell asleep
I had the most beautiful dream of Annie. She was standing beside her hospital bed, dancing around in a pair of pajamas I bought her, letting me see she was okay. She was turning from side to side, letting me see that her spine was no longer bowed out, and her legs were healed. She was finally free of all the torment and pain she had been suffering. She seemed happy! I couldn’t see her face, but I knew it was Annie.
Isn’t it ironic? Her special perfume was “Angel.” The first four out of five nights I used the perfume I had a pleasant dream of Annie. The stronger the scent the more vivid the dream. And after the first couple of days, I always saw her face. Knowing that greed is a bad thing I didn’t ask to see her or spray the perfume every night, but when I did, the combination worked.
Several months later I was having problems with a question that kept going around in my head. “I can’t let go of her, until she lets go of me.” I went to see my psychologist, Dr. Bryant, and posed the question to him. He looked at me very seriously and said in a soft voice, “Bob, she is not holding on to you!” I said in a soft voice, “I believe she is.” That night I sprayed the perfume and asked for clarification of my question. What I’m going to tell you was simply amazing. When the dream came, Annie and I were up on a grassy hillside, hand in hand, arms swinging in unison like a couple of kids. When the dream ended, we were standing on a porch. Annie had let go of my hand. There was a lady with dark hair standing in the doorway behind an old-fashioned screen door. I looked at her then turned to Annie who had her hand extended to me. She wanted to slap hands. I reached over and gently slapped my hand against hers. She gave me a beautiful smile, turned and stepped off the porch and disappeared. What did it mean? I believe that Annie was telling me when I’m ready it’s okay to move on. She had just let go of my hand.
Note: After several experience’s with dreams, I went to the store where she purchased it and was able to speak to the Angel representative. She told me that Angel contains the same ingredients used in aroma therapy, but much stronger. If I had to give one warning it would be that some of the dreams were not pleasant, and were deeply troubling. I used her Angel until it ran out and although I still have the bottle, I won’t refill it.
While grieving I believe my mind had opened up to a higher level of consciousness, hence even life felt very vivid. So when I witnessed trauma on a routine basis as I did, sometimes when dreaming I think I triggered the mechanism in our brain that allows psychic trauma to creep in. In other words, re-live a traumatic event through your dreams. It’s not and individual event, but just as traumatic. Annie wore Angel perfume for nineteen years. So that became her trade mark scent and I loved it.
If you’re grieving it’s very important to keep a journal or diary of how you feel and some of the events that take place from day to day. Later on in your grief, it becomes so important to be able to look back and reflect on your journey. In a sense you are tracking your grief and can clearly see if you are getting better or not. The dreams I spoke of and the many more I had were all documented in real time and now I can use them for a reference point, and share some with others. Believe me, in grief that’s a win, win, situation.
Grief A Silent Killer
You know, I could start this article out with a bunch of fancy words and statistics to perhaps prove a point, but I really don’t need to.
Annie’s journey through cancer was very difficult, and the truth is, she was always dying a little more each day. From the moment of her diagnosis/prognosis, which was, “we can’t figure out why she is still alive,” but she may have “three to four weeks.” Imagine trying to wrap your head around that grim news.
And I get it, when someone says, “why would you post this blog during the holiday season when spirits are running so high.” My answer, “why wouldn’t I.” You see, I’m now thankful for what I have, which to me is the gift of having the ability and platform to share stories and events that are happening to caregivers every minute of every day, and don’t magically disappear during the holidays. I say things that many folks are thinking, but don’t want to talk about. I call it “The Truth.”
And the truth is, none of the serious illness we get are discriminatory. I don’t care if you’re a Republican or a Democrat, a lawyer or a doctor, rich or poor, black or white, it just doesn’t matter. Many of the serious diseases will level the playing field for all, and can bring you down no matter who you are. And you will most likely need a caregiver. Someone like me that truly does care for your well-being regardless of your status in life, and willing to share stories or articles with you anytime of the year. Some may just help you get through a rough patch.
Caregiving is like going on a journey where no person has gone before. Why, because if you haven’t been through the experience, you can’t possibly understand the concept of just how difficult being a caregiver can be. It will take you to places where you don’t want to go, and having you doing things that you don’t want to do. Your emotions will get very elevated at times, and your stress level can be at the top of the charts. In essence, stress from being a caregiver can, and if not controllable, create a very unstable and unhealthy lifestyle.
Stress
There are many books floating around out there on how to manage your stress. Well they may be fine when dealing with normal day to day lifetime stressful issues, and we all have them, some worse than others, but if you think a caregiver deals with typical stresses, think again.
Enter the caregiver for a terminally ill loved one, whatever the disease, throw in Alzheimer's or Dementia, then you can honestly say, as did Tom Hanks from Apollo 13, “Houston, we have a problem.” And I don’t care how many books you read on stress, they are words and guidelines that can become meaningless to a caregiver under some very challenging, and tremendously unsettling circumstances. Imagine, under the dire circumstances of Apollo 13, someone handing Tom Hanks a book on how to deal with extreme stress. I wonder what his words would have been. Probably not, “oh, thank you.”
Yes, that was a simple metaphor, but in reality many caregivers face that scenario every day. And the truth is, there is no instruction manual or stress guide that can help you in the heat of the moment, which in truth is a moment that can be created many times a day, day after day. Tom Hanks was flying Apollo 13 by the seat of his pants, and so goes the caregiver. We have to adjust and improvise as events unfold. And of course, making the right decisions at the time will determine the outcome of the event. Good or bad. No pressure, huh.
If you don’t know by now, you should know, over and extended period of time, stress is a killer. It’s a fact that, many caregiver’s will get ill and die before the person their caring for dies. And it’s usually form some sort of live or dormant disorder that is triggered by excessive stress.
To prove my point I’m going to tell you what happened to me over the entire year of 2015, and why. It’s scary, and sneaks up on you without warning.
Extreme Caregiver
What is an extreme caregiver? Simply put, in my opinion, it’s a person that takes on the role of being a caregiver for a loved one that needs ongoing 24/7 care, which can lead to severe weight loss over a period of time, many sleepless nights, all while dealing with chaos and confusion from lack of instructions…And does it in a selfless manner, without complaint and with no regard for their own well-being.
That’s the way it was caring for Annie, as her hope for another day rested with me. There was no other choice. Annie had many broken bones from the cancer and was basically wheelchair bound, and in a hospital bed from the third week on. Just rolling her over in a manner that didn’t break another bone was a challenge. Her bones were very badly diseased from the cancer. She was on 200mg of Morphine a day, plus a Fentanyl patch, and Percocet when needed. Her pain medication, which she had to have, was my biggest nightmare.
I knew from day one Annie would not survive her cancer, but I guess I couldn’t accept the facts as they were presented to me. So, I spoke of my fears to her oncologist about all the pain medications she was on. He was brutally honest with me when he said that he was doing everything he could to keep her alive, and my job was to keep her out of pain. Then with strange facial expressions he explained to me the type of pain she was in, and walked away saying, “stay ahead of the pain Bob,” then turning back to say that if I get behind on pain control, playing catch up can be very dangerous as one extra pill can lead to the overdose that kills her. I guess I needed to hear that, and it seemed to make me more determined than ever to fight for her.
It was up to me to make sure that when she took her medications, I kept an eye on her for the first couple of hours watching for shallow breathing. If the breathing were to get too shallow, Annie could stop breathing altogether, and die. That was a huge responsibility for me, especially when trying to rest at night. I found myself continually waking up and looking at her chest to make sure she had positive air flow. Some nights her shallow breathing was so bad I stayed up all night, giving her a head massage and talking to her.
Bottom line is, I loved her and was willing to do whatever it took to keep her alive. Yes I was tired, but I knew I had the rest of my life to sleep and get rest, but in her case the days were numbered, it was not a matter of if, but when.
In a sense, my life was no longer mine. It belonged to everything I put into caring for Annie. And I would not change a thing. I loved her deeply, and whatever part of her that was not my world, became my world. My position in her life was way more than just being a loving husband. I was determined to make sure that when the sun set, even during the dark of night, she had the best possible chance of surviving for sun rise, and the dawning of a new day.
Grief
Thirty months after diagnosis, Annie passed. She died with the same grace she fought cancer with. She took me on an extraordinary 30 month journey, allowing me to see what a precious gift she was to me, while helping me understand love in a way that many people never will. I discovered, that for that moment in time, true love penetrated deep into my soul, there was no anger, no resentment, and I found it to be very spiritual. It seemed that my goal in life while caring for Annie was to share every minute I could with her in happiness. Despite everything cancer had in its arsenal to hurt Annie with, we fought back on a daily basis, and we had some fun.
Annie’s journey through cancer was never about living, it was always about dying, and a caregiver man and his beautiful wife that simply refused to throw in the towel. We literally fought until the end.
When you consider what I just said, when Annie died it was like I hit a brick wall doing one hundred miles an hour. I was totally lost, swallowed up by darkness and despair. I just wanted her back. Nothing else mattered. That went on for about three years, day and night. I didn’t know from one day to the next if I was coming or going and for that matter didn’t really care. Over a period of the 4th year the pain started easing considerably, and I was starting to feel alive again. So I thought.
Stress related illnesses
The year 2015 was the worst year of my life for healthcare issues. I was never a sickly person, and all through Annie’s illness I never even had a sniffle. My four years of grief were not quite uneventful. I was put on heart medication to control heart palpitations that started a few months after Annie died.
A few months after Annie passed I went to see my general practitioner for a physical. The only problem he found was low vitamin D. Still, his lingering words, “Bob, there will be consequences for your extreme caregiving, they just haven’t reared their ugly head yet,” still ring in my head. I think his thoughts at the time, followed by 3 years of intense grief, and the 4th year spend coming down from grief, created the perfect storm in 2015. My immune system broke down from all the stress.
In January of 2015 I had my annual physical. All my red blood cell counts were abnormally low. The low blood counts were later on diagnosed as being caused by moderate to severe Gastritis with anemia. Also, I had two separate lung infections with inflammation, requiring steroid treatment, followed by shingles. Then out of nowhere, came a high level of full body inflammation which triggered a search for tumors in my body. The inflammation in my body cause me to have what I called the perpetual flu, every day for 6 weeks. My general practitioner asked me if there was any place in or on my body where I didn’t hurt, I said, “my feet.” He kind of laughed as he left the room.
It’s been a long year for me. The low blood counts and inflammation triggered so many tests, I felt like a pin cushion. I’ve had a heart catheter, colonoscopy, gastroscopy, x-rays, and a sundry of other tests. Plenty of antibiotics, steroids, pain pills for shingles and so on. It was simply one thing after the other spread out over the year.
It seems like I’ve weathered the storm for now, but I have some more testing in January. The good news is, I don’t have auto immune disease, the bad news is, my full body inflammation can return at any time triggering another round of shingles and other illnesses.
I’ve climbed a mountain of health issues this year, but caring for Annie taught me how to fight through illnesses that to her would have been commonplace.
The answer, Caregiver=stress, Love=stress, Pain=stress
Under the circumstances as I presented them above, I don’t believe there is an answer to stress relief. Problem is, if you really love someone, when they hurt, physically you can’t feel their pain, but in your heart you certainly can and will feel their pain.
When my wife Annie was standing beside me and I heard her right femur snap and her hip break, and the audible sound of pain, all I could do was catch her as she was falling. Where do I put that! When she was put on the ventilator for 5 days fighting double pneumonia, sepsis (blood poisoning), and swine flu, I was told the odds of her surviving this event were incalculable. Where do I put that! The 4 or 5 times the doctors told me that Annie would probably not survive the night, where does that go. These types of events were a main stay of Annie’s illness. They happened often.
Looking back, it’s obvious I was living in anticipatory grief. Not knowing from one day to the next if she was going to survive or not. So in essence, the stress was not going anywhere. It was interlocked with the anticipatory grief and went with me where ever I went. You can’t make the feeling of doom and gloom go away and you can’t relax or read it out of your head. It’s there, and there it will stay. You’re gradually getting sick, and you don’t even know it. You think you are just sad.
Then, over time Annie passed. The anticipatory grief turned to full blown grief and from that point on, the stress was firmly entrenched in the grief cycle.
Three months after Annie passed I started seeing Dr. Bryant, Psychologist. The first six months I saw him twice a week, one hour a session. Five years later I still see him on a weekly basis for an hour each session.
I can look back on the many times, when I got back into my vehicle for the drive home after leaving his office, feeling okay, then I’d see something that reminded me of Annie and all the dark emotions came flooding back. Like I said, stress and grief are sort of intertwined, and stress seems to piggybacks off of grief.
When I first found out I was not well in 2015, the damage to my immune system had been occurring over a period of the previous six and one-half years. How was I to know that? And what could I have done to fix it, if I had of known? There is no magic potion or pill to take away ones pain. Yes, the pain can be masked through medication, but when the mask comes off, guess what, the grief that you haven’t dealt with is right there waiting for you with all its glory and stress.
Bottom line, if you love deeply, you will grieve deeply, the stress will be strong and right there with you too. Stress can be, and sometimes is, “the silent killer.”
Grief: Time Stands Still
One of the most painful experiences a loving caregiver will ever witness, is the dreaded moment when time stands still, and a loved one slips away in front of your eyes. Sadly, there’s nothing you can do to comfort the burden of your pain. It’s there, it’s real, and the grieving process that’s already firmly entrenched in your mind, will begin in earnest. Grief’s arrow will pierce your heart.
Metaphor
This is not how it happened to me, but in a sense it is. And if I didn’t know the truth, I couldn’t speak it.
Internally or vocally you’re screaming out in pain, but no one knows the depth of your sorrow, but you. Everything around you becomes an illusion, where it becomes difficult to process the real from the unreal. You know you saw your loved one pass, but in your mind it’s a case of, “maybe it just a dream.” It didn’t really happen, did it?
You find yourself standing on the edge of a cliff, not sure which way you’re going to fall. You become frightened, you’re lost and don’t know what to do, and then it hits you, this is real, as you fall back into a chair mumbling the words, “I just want my loved one back.”
The pain is excruciating, the fog of death is thick, and you’re slowly coming to terms with the fact that “life as you knew it has, changed forever.” There’s no going back, the care giving for your loved one is now over, and I can honestly tell you from experience, you’ve just traded one nightmare for another.
In my case, being a caregiver for my dying wife Annie was a nightmare. My anticipatory grief was always present, and in the forefront of my thoughts. She so wanted to live, but was not afraid to die. I guess I just wanted her to live, and having to let her go at the end, was beyond my understanding of how life was supposed to be. The emotional drag put on my life by viewing her death has not been good, and doesn’t create a good last memory. The medical personnel telling me how peaceful her death was, by noting the lack of stress on her face, meant nothing. She was just gone!
Oh sure, all her pain and suffering from the cancer was gone, and her nightmare was over, but for me, my nightmare was just beginning. And that may sound a bit selfish, but grievers know, “it’s the truth.”
There’s no second chance to say I love you, fix her a nice meal, or to do the special things for her that sometimes made her day. This body that was continually in motion for thirty months, was now at a standstill. It was like being on a merry-go-round for thirty months, going round and round, never stopping. Then it happens! The merry-go-round stops, and you can no longer stand, so you fall to your knees, head still spinning from all that you went through. And when you finally raise your head and look up, what do you see. In my case it was darkness, laced with a lot of chaos from fear of the unknown. Which is the same fear I, and most likely you felt when care giving and battling for your loved ones life. You are now back on the merry-go-round, but this time it’s different, it’s the merry-go-round of grief!
This is my fifth year post grief and I’ve written thousands upon thousands of words on the subject, but this post was truly meant to be about that moment in time, “When time stands still.”
Still, I need to say this: If your new to the world of grief, or been a griever for awhile, the most important advice I can give you is to not hold back your emotions. You must let them flow. Your tears are your best friend, and if you’re like me, you may cry a thousand tears, think you’re getting better, and cry a thousand more. You’re a griever, where logic is simply a state of mind, which may or may not play a role in your healing process. If you’re feeling locked up, get the photo albums out and start browsing through your pictures. That will allow you to revisit old memories which may get your tears flowing again. I’ve said this before, you have to grieve to get through grief.
Journal your thoughts, or simply jot them down on a piece of scrap paper with a date. That’s how I tracked my grief. I could look back over a year or two and proclaim, “wow, you were really messed up dude!” Not realizing I was still messed up, just not as bad. I was healing. And I knew it based on old notes I’d written. And the photo albums, well, when you can look back on the old memories, and the emotional rush doesn’t hit you so hard, or the tears fall in more of a random pattern, you are healing.
I’d like to share something with you, that a stranger recently posted as a tribute on Annie online memorial.
As you read the tribute, think how important “Your Story” would be to others. All grievers have their own unique story to tell, and think of the people you could touch, and perhaps help by sharing your journey through grief. And believe it or not, over time it becomes refreshingly healing.
Tribute
“I can never thank you enough for sharing your journey with us. The help you have extended goes way beyond the readers and posters here. So much to say, but for now, adding what Henri Nouwen said in OUR GREATEST GIFT, our “fruitfulness” lives on way beyond our passing; it is then at its greatest.. There is no greater love than sharing the dying process with the dying. Nothing harder. Should Nouwen be alive today, you and Annie would be added to an updated version of Our Greatest Gift. What a gift that you have given to us, especially me.
God’s peace always..”
Henri Nouwen, was considered one of the great writers of our time. A Dutch Catholic priest, professor, writer and theologian. His interests were rooted primarily in psychology, pastoral ministry, spirituality, social justice and community. Henri passed away in 1996. Wikipedia
