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My husband of 47 years has mixed dementia and severe white matter disease. He is currently in a memory care facility after 7 years of my being his full time caregiver and I have brought in Hospice Care as we are in the end stage. (Thank God for hospice as he is on pain patches + anxiety patches). He will no longer eat or drink, his eyes are only half opened and he can only pee a little once a day- it has been well over 2 weeks
I have never in my life felt such burning muscle pain in my body.… read more
❤️ @A myALZteam Member… I was reluctant to share those thoughts with you for a few reasons. I’m 3 1/2 years now, on this side. I certainly had different thoughts and feelings when I was where you are at. I didn’t want you to believe that I could so easily cast off the deep sorrow and loss that can be so overwhelming.
I did want to offer hope, a small ray of light in the darkness.
We may never rid ourselves completely the experience we endured, but over time we realize that we really don’t want to ever lose that memory. What we did for our loved ones is the closest we will come to “picking up our cross and following Him.”
Our finite human hearts can’t contain that much love… and it hurts. In my experience too, it physically hurt. I believe the medical field has another name for it. I believe it’s an over abundance of Love that has no place to go.
Like loosening our belt after a big meal… we must loosen our hearts, so it can contain all this love and eventually, when we’re ready, release it back into the world…
that so desperately needs it. ❤️
My wife came down to the Family Room after a nice warm relaxing bath and said "I think I'm having another heart attack." In the past she had had a couple TIAs and one MI, so after a quick discussion, I called 911, and they took her to the ER. The hospital staff did a catheterization and told me that she had slightly elevated Troponin and had a Takotsubo. Having lived in Okinawa for 30 months, I knew that Tako was octopus and tsubo was a land measurement, a strange combination to mean a heart attack. I learned that this kind of MI was given that name by the Japanese because during and MI, the heart assume the shape of a Japanese octopus trap, called a takotsubo. Prior to her takotsubo attack, my wife did not have a typical "heart-breaking experience" that others apparently do. What she was experiencing were physical conditions similar to the time she had her first MI. Those symptoms as best I recall were again in the evening and a pain in the center of her back that she described as a spasm or tightness. So, my point for providing this short story is that you can have physical pain symptom with no pre-takotsubo sorrow or heart-breaking conditions. I think at some point after caring for a sick person for a long time, a caregiver's physical and mental strain just reacts by saying "Wait, I need a break; I need to rest."
My husband was in the hospital for a month before his death, about a week in hospice.
I experienced the physical grief pain after his death. I have found that stretching and regular massage have helped me tremendously. There are times I feel better then something will trigger my pain/grief.
Love and prayers to you, this path is extremely tough!
Thank you so much for explaining that to me, I have heard of Broken Heart Syndrome, however, I did not know it was an actual medical condition. And I thank you @A myALZteam Member as I know you have recently lost your beautiful wife. God Bless.
@A myALZteam Member: My dear friend @A myALZteam Member has asked me to write about my experience with “Broken Heart Syndrome” (or in medical terms: Takotsubo Cardiomyopathy) — so here I am.
I assure you, Caregiving pain is a very real thing and not to be taken lightly.
In my case, I woke up from a sound sleep at about 2:30 in the morning, with crushing chest pain that felt like a vice compressing me, front and back simultaneously. I sat up in bed, thinking that if I was having acid reflux, it would go down. I waited 5 minutes. Nope. Sat up straighter, now on the side of the bed with legs dangling, and gave it another 5 minutes. Still hurt. So I called 911.
I was taken to the hospital, and very thoroughly tested. Over the course of a 6-hour period, I had 3 different 12-lead EKGs; blood work (to look for elevated Troponin levels), and repeat blood work; a chest x-ray (to rule out pleural effusion); an ultrasound of pancreas and gallbladder (to rule out pancreatitis, pancreatic tumor or gallbladder attack); and an MRI of the heart with contrast, viewed in real time by a cardiologist (looking for blood flow and possible blockages).
Nothing. No blockages. No elevated Troponin. A calcium score of Zero.
I had Broken Heart Syndrome and was told to take it easy for the next few months. I walk daily.
Back to your original question: did it hurt? Yes!! Enough to wake me out of a sound sleep, and to call 911!
Is Caregiving pain real? Yes!! The stress of caring for, and losing someone we love is profound. It hurts. We may each feel it differently, in different parts of our bodies, but it’s real.
Be kind to yourself. I always urge all caregivers to speak with a therapist and to go to in-person Support Group meetings, whenever possible.
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