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.
This is the 50th blog I’ve posted on The Caregiver Space this year, and all are in one way or the other, either related to my wife Annie, or she was the inspiration behind them. I lost her to a wretched cancer on November 2nd 2010. And that’s why you will see the words Because of Annie attached to the top of all my blogs.
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 and Stress – HealthDay
consumer.healthday.com/encyclopedia/…/grief-and-stress-646074.html
by C Woolston – Related articles
Mar 11, 2015 – Still, there is one universal component of grief: Almost every loss, no matter how expected, will be accompanied by stress and disorientation.
Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.
I’m stressed…I am blessed to have a wonderful husband, who cares. I’m having a few health issues because of the stress. Some people may have to step it up one day, and adjust their life.
That’s how I was with my dad..
I suffer each day from anticipatory grief. Upon returning from a trip to the store or morning bedroom door opening, I take a very DEEP breath in anticipation of finding him passed. Sometimes I don’t leave the house for a few days so as not to feel the panic
Thank you for sharing
I left a comment on the blog. This is such good article. I don’t know where I’ll be when the four year mark hits. Is forewarned fore armed?
Bob this article is so spot on. And I’m going through it now having lost both of my parents who I cared for full time for years. I feel everything you said.
This is the brutal truth.
Excellent description of the whole experience of losing your love. Thank you….
25 years of caregiving for my partner with M.S. He now wakes me up 3 times a night with my sheet is too heavy, what day is it , where am I. It’s over a month of 3 hours of sleep a night. I am bagged. The doctor says he’s long overdue for the nursing home. He doesn’t want to go and I’ve been 24/ 7 for so long I don’t even have the strength for the next steps. Where to find a home that will take better care of him than I do.
Careing is wasting two lives, so so bored of it all want my life back!
I can’t believe I just turned my Facebook on and read this. My son has a traumatic brain injury and I’m getting sick after 4 years of caregiving. My immune system is inflamed and I have been suffering since sept 2016. My son never sleeps at night and I’m also a full time caregiver for my paying job then I come home and start all over again. I think my inflammation is caused by autoimmune disease. I knew it was from stress but the Drs haven’t said that yet and I need him placed or I won’t be able to do this anymore. Problem is he is refusing to go to a group home and the head injury state program said they can’t force him so if I get sick he will be home less. This doesn’t make sense. We will both die
This story is dear to me. I wish you well.
My sister, a nurse, told me that I’d miss even the most difficult day, and she was right
I was the caregiver for my dad…. the stress was large and I didn’t realize it. I ignored all signs and dr. put me on Xanax during all this. Here’s the real interesting part of my story…. I now work in home care. I deal w patients for 8 hours a day from simple companion needs to hospice care. My employer in my evaluation said, I’ve been marked as too attachable w patients. so, I’ve had to pay close attention to myself, am I under to much stress in my job , can I detach myself for the better good of the patient and myself?
I seem to have the same issue going on with getting attached. How can you not ?
I believe some of us are just meant to do this. Plus I’ve had major loses in my personal life and my husband is now sick with no hope of getting better.
it’s a tough profession. it’s hard to not get attached
Why does it have to be like that. I do feel like no ones done this before. Why do drs and home care nurses and aids have no answers? Seems like this should be in the books somewhere. God has been my only partner in this horrific journey with my beautiful mom
I’m sorry, I thought caregiver is person who provide direct patient care.Basically hit the floor, pull the double, than catch some sleep tipe of work.
❤️❤️
Thank you for all of your articles.
I miss my mama. 9 years of extreme love.
Are you still a caregiver? We are looking for one for my mom. She’s 68years old and very active and good health. DM if you are interested
I miss my boy and every single moment of chaos.
Are you still a caregiver? We are looking for one for my mom. She’s 68years old and very active and good health. DM if you are interested
No I’m not a caregiver anymore.
Jody, I wrote an article in 2011 not too long after Annie died. I said it was a privilege and an honor to be the chosen one to care for Annie. Caregivers that love are not victims. We learn so much from our dying loved ones. They are a gift that just keeps on giving. I wish you the best too, always and forever. 🙂
Thank you, Bob! I didn’t intend to wear you out. Smile! I don’t consider myself a “victim”. Yes, I went through a great deal. But I would do it again in a heartbeat to care for Michael. Even knowing what the outcome would be. It was a privilege and an honor to care for him at the end of his life. Thank you for sharing your story. It was very helpful to me. I wish you peace, love, health, and happiness! 🙂
Jody, what a story. Thank you for sharing with me. Your words wore me out. I could feel your frustration and fatigue all through your story. I felt like I wanted to jump in there and help you, but it doesn’t work that way. You have my admiration for taking care of your husband the way you did, and your courage and strength under pressure were remarkable. Hope you find what your looking for and life becomes more kind to you. Be well!
Bob, OMG, you described a different variation of my experience! My husband suffered from his first heart attack in 2007. Michael was my best friend for 32 years. We met at work, became best friends, got married for a few years, divorced while we still liked and loved each other, and continued supporting each other actively (traveled together, talked on the phone 3-4 times/day for most of those years, counseled each other, provided financial support when the other needed it, etc). He mentored me about many of life’s issues. I taught him about unconditional love and the value of relationships. We were soulmates in many ways, but had a very complex relationship. He wasn’t my “former husband”. He was my family. I was closer to him than to anyone else in this world. I always knew that when Michael needed me (he was 22 years older than I), that I would care for him. So when he called me from an ambulance (we lived 3 hours away from each other) and told me that he was being rushed to the hospital, I dropped everything and put my life on hold. His doctors said that he had severe heart issues and kidney failure and that he would be lucky to survive the next few months. They literally expected him to die of a severe heart attack or stroke at any moment. So I went into “extreme caregiver” mode (funny, I’ve used that term myself in the past….good one). I married him again. I was going to do ANYTHING to keep him alive! He loved his retired life in the small town that he returned to where he spent most of his youth. He had a group of close friends, was a partner in a small business, and was living the happiest years of his life. I moved him to the city where I lived. I was still working and needed to be close to my job. Additionally, one of the nation’s best research universities and hospitals provided me with great medical resources for him. He was on peritoneal dialysis (he did dialysis at night, hooked up to a computer while he slept). I found the best specialists that I could for him. I researched and educated myself on his diet, his prescriptions, warning signs to look for, anything and everything that had to do with him. I managed all of the details of his life, tried to work a full-time job, kept my house and his going, trained his dog (a present from his friends), and for the first time in my life, I started experiencing stress-related health issues. I had to help him with his nocturnal dialysis (I was up several times at night, responding to his computer alarms). Every time that I couldn’t reach him on the phone, I was worried that I was dead. Every time that I heard his alarm at night, I worried that he couldn’t respond because he was dead. I repeatedly got up to check on him to make sure that he was still alive (we couldn’t sleep in the same area of the house because of his dialysis configuration, so I had to run up and down stairs all the time). I had to take him to the ER more times than I can count. He was in the hospital several times. I am an empath. I faint at the sight of a needle. I am highly allergic to anything medical. I haven’t been in a hospital since I had my tonsils out as a child (except to visit other people). I experience other people’s pain emotionally. Michael started becoming more and more fragile over time. He had several life-threatening infections. He was in a skilled nursing facility because he couldn’t stand and had to learn to walk again. My biggest challenge was that Michael fought the doctors. He fought me. He couldn’t control his body, so he tried to control the people around him. His first response to anything was “no”. He was suicidally depressed. His doctors kept telling him that they weren’t sure why he was still alive. I had to manage his prescriptions (which changed continually). And I had to manage my own (which were starting to outnumber his). I started going to counseling within months of his heart attack to help me cope with caregiving, as well as the loss that I knew he was going to experience once he was gone. I lived my life in 15-minute increments. I was in fast forward (literally) from the time I woke up in the morning until I went to bed at night for short naps. It was literally 24/7 care. How long did we do this? For 5 years. As you know, the emotional impact of watching someone you love die slowly is excruciating. Like you, when Michael died, I hit the wall. I had the added misfortune of being bullied at work because of the FMLA time I took off to care for Michael. For 3 years (beginning several months before he passed away), I was targeted by my director at work. Even though his doctors were very clear and specific about the caregiving that was required for him. So I had to battle at work to keep my job (I was too stressed to look for another and desperately needed an income) and battle at home to keep my husband alive. I had to get my union and lawyers involved. And more doctors and counselors to assist me. Even after he was gone and I was emotionally fragile and on my knees on the ground, I was kicked at work. And kicked. So on top of the “normal” health issues one experiences as an extreme caregiver, I developed anxiety issues and panic attacks because of my work situation. I started going to the ER with chest pain. I spent a few nights in a hospital with a severe panic attack (disguised as a potential heart attack). I was on 15 prescriptions. More than Michael was when he was live. I was finally forced out of my job last year. My focus now is to regain my health. I’m off my prescriptions (with the help of good specialists). Trying to get my blood pressure and other issues under control without so many pharmaceuticals. I am working with a naturopathic doctor, as well as a chiropractor. Focused on diet, natural medicine, and hoping to incorporate exercise into my life. Like you, my immune system is shot. Then there is the financial stress of incurring extreme debt to keep someone alive. Stress has done so many bad things to my body that it is going to take a great deal of self-discipline and focus to regain health once again. Fortunately, my doctors have said that if one is stressed because of temporary external situational factors, it IS possible to regain your health. I really hope so. My heart is with you. My empathy is with you. My best wishes are with you. Thank you for posting on this blog. It is validating, as well as educating for people who have never been an “extreme” caregiver. Every word that you type resonates with those of us who have been in your shoes. I will follow your blog to keep up with your progress. Be well!
Our experiences were so similar, thank you for sharing! I am now experiencing debilitating health issues myself.
Brenda, what you described to me is exactly some of the things I experienced. When you are a caregiver for a loved one and have to watch them suffer over an extended period of time, it places trauma, pain, and sadness in your heart that is hard to deal with. That was a huge obstacle for me to cross. In the beginning all my memories were mostly of sorrow and pain. But after three years, my sorrow turned more to the fun things we shared in life, and the good memories. Grief will do everything it can to block our good memories. I wrote a blog on the Caregiver Space awhile back and posted it on Annie’s online memorial called Mr. Grief: My Enemy, My Friend. I’m gonna give you the link to her online memorial. I think it will help you. She’s had over 70,000 visitors.
http://www.forevermissed.com/annie-barber-harrison/#about I wish you the best!
Liz, Your grief is still so raw, and what you’re feeling and experiencing is so normal. Being a griever can be very lonely and, the world dark. We simply get buried by the sorrow, and loneliness. But, I will tell you, where there is a beginning there is an ending. One day, you will feel better. I built an online memorial for my wife Annie. You’ll see some blogs I wrote and posted on there this year, on grief. It’ll make you cry, but you need to cry. Let your emotions flow. That’s healing. Link: http://www.forevermissed.com/annie-barber-harrison/#about I wish you the best!
thank you after reading this finding all is truth with me! Caregiving love and the dr’s telling me the same thing my job was to control his pain as I also knew he was going to pass but as long as he was fighting I was there with him health to is compromised being having issues with stomach as well thank you for the read Tm Wilkerson ocular melanoma March 2nd 1964- October 24th 2015
did break my heart to read this . lost my husband this year in febuary he was only 50 i am so alone with him not here it was sudden and such a shock my 2 children have left home and got there own family now so only see people on a weekend i was my husbands carer for 10 years i have now returned to work but it very hard i have a lot of pain in my body and heart now my mum was cancer and not long to live i just think i cant go on no more i dont want to be alone no more think i am going mad talking to my self