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.
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.
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.
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.”
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.