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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: End of Life Signs

Caregiver PTSD: Fact or Fiction?

12 Thursday Sep 2013

Posted by Ann Napoletan in Caregivers, End of Life Signs, Grieving, Guilt and Regrets, HomeReach, Hospice, Kobacker House, Life After Caregiving, Mom, Ruminations, Saying Goodbye

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Tags

alzheimers, caregiver ptsd, caregiver stress, death and dying, hospice

 

photo-41Post-traumatic stress disorder (PTSD):  An anxiety disorder that can occur after an individual has undergone extreme emotional trauma. It is most commonly associated with soldiers returning from war or victims of violent crime, but some experts now believe it can also befall caregivers. In fact, when I saw my doctor shortly after my mother died, it was something she mentioned.

Emotional Upheaval

In a way it sounds crazy; how could the impact of caregiving compare to war or violent crime? Obviously, they are very different, and I don’t think anyone is trying to imply they can be compared. But if you unravel what occurs in a caregiver’s life over many years, it’s reasonable to believe some form of PTSD is certainly within the realm of possibility – perhaps to varying degrees depending upon many factors.

Barry Jacobs is a clinical psychologist and author of The Emotional Survival Guide for Caregivers. Dr. Jacobs notes that many caregivers wrestle with uncontrollable disruptive, distressing thoughts months – and sometimes years – after a loved one has died.

It drives me nuts when well-meaning people say, “focus on the good memories.” (And for the record, I’m certain I’ve said the same thing to others a million times over my 47 years on this earth.) We’d all like to remember only the good times, and I imagine most of us constantly work toward that goal. But when you’ve watched someone suffer through years and years of an agonizing chronic illness, it’s tough to just flip it off like the light switch in the kitchen.

bearDr. Jacobs says, “Many people find themselves unable to stop thinking about the suffering they witnessed, which is so powerfully seared into their brains that they cannot push it away.”

Haunting Memories

My mom died almost 9 months ago, and try as I might there are certain moments that regularly haunt me. Some nights, when I lay down and close my eyes at bedtime, the images are more vivid than I can bear. I just can’t shake it, and the only way sleep will come is with television to distract my thoughts and melatonin to help me drift off.

Sometimes, the images pop into my head without warning – no apparent trigger – but there they are. It’s a vicious cycle; the mental pictures tend to bring forth more unpleasant memories, particularly of the last several weeks of her life. Those thoughts lead to unreasonable worry about things that I couldn’t control at the time and certainly can’t control now.

For instance, in her last few days before going into the hospice facility, I had to administer morphine. Of course I was doing so under the direction of hospice nurses, but it was horrible. She was in so much agony; the morphine was the only thing that brought her peace. I know that. Yet, I still struggle and wonder if there was something I should have done differently.

Defying Logic

An image that is burned into my psyche is that frail, almost unrecognizable woman who, for nine days, occupied the bed in room 16 at Kobacker House. Face sunken in and unresponsive; so thin that at one point, I touched the sheet, wondering what the pointy thing was under there – only to realize it was a hip bone jutting out of her tiny body. I can still see her like it was yesterday, and if that’s not painful enough it’s a visual that never fails evoke memories of the moment she took her last breath.

Something that has bothered me for the past nine months; was I holding her hand at the very moment she crossed over or had I let go? Now what a ridiculous thing to obsess over! Even if I knew the answer, I couldn’t change it, yet I have to consciously remind myself how illogical it is to allow that thought to take up residence in my head!

I don’t doubt some people will read this and wonder why in the world I would put myself through reliving such painful memories, but it’s not a choice. I’ll be honest; I wish I understood it. What I do know is that I watched my mother’s gradual decline for almost a decade; it’s nearly impossible to even remember her BA (before Alzheimer’s).

PTSD or Not, Caregiving Takes Its Toll

Symptoms of post-traumatic stress disorder include flashbacks, feelings of anxiety, dread, guilt, apathy, numbness, and depression, but as Dr. Jacobs points out, each of those issues are common in caregivers. It’s really up to a physician to determine whether what you’re experiencing might be a form of PTSD.

Do I think I have it? Probably not. The thoughts and images I’ve described aren’t constantly present; they come and go. But at the end of the day we have to realize that years of witnessing the unthinkable, being forced to make life’s most troubling decisions, never being able to completely settle our racing minds, constantly facing wildly fluctuating ups and downs – all while confronting life’s “normal” daily challenges… it takes a toll.

I remind caregivers all the time they must be gentle with themselves, but the truth is, it’s still something I have to work at everyday. It’s only since my mom’s passing that I’ve realized the need extends well into life after caregiving…

I would love to hear your thoughts on caregiver PTSD, as well as how you’ve dealt with the unwelcome images and memories that come calling at the most unexpected moments.

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Remembering…

02 Monday Sep 2013

Posted by Ann Napoletan in 4M, Advocacy and Awareness, Behaviors, Eason House, End of Life Signs, Expectations, Heartland, Hospice, Mom, Ruminations, Uncategorized, Weight Loss

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Tags

alzheimers, dementia, end of life signs, hospice

mom angelsIt’s nearly impossible to believe a year has passed since Mom began her sharp and unexpectedly rapid decline at the hand of Alzheimer’s.  It was about this time in 2012 that I realized scheduling a big vacation months in advance was a bad idea. At the time, though, things were “okay”… who knew what a difference one summer could make.

Praying for Comfort

There were fewer and fewer good days; she wasn’t eating – beginning to even turn her nose up at some of her favorite sweets – and was losing weight quickly. From that point on, her diet consisted primarily of Ensure until the end. Oh how excited we felt when she would eat a cracker or a couple of grapes; more than that and it was as though we’d hit the lottery, we were downright joyous!

photo-58In those weeks, it was indescribably painful to see her so distraught; screaming, hitting her head, and often inconsolable. In the few rare peaceful moments she had, she would stare at the ceiling, entranced, with a soft smile on her face and eyes almost sparkling. There’s not a doubt in my mind it was the very beginning of her transition. As upsetting as it was, seeing her at peace like that was also an incredible relief, but those moments of respite never lasted long.  All too soon, the terror she was obviously feeling would return.

Time For Hospice?

Finally, the time came where I knew I needed to make a decision. I called hospice to have them come out and do an assessment; unfortunately, we had a mind blowing, horrific experience with the intake nurse. I ended up asking her to leave before the process had been completed. On Monday, I called the office and told them to destroy the paperwork – I had changed my mind (there’s more to the story…).

It was the beginning of the final dizzying, nausea-inducing rollercoaster ride that lasted for the next 3 or so months. I thought I had seen it all, but I hadn’t seen anything yet…

Hopelessly Unpredictable Progression

So crazy to think earlier that same year I truly thought that she could easily live another 10 years or more. Physically, she was strong. But things can – and often do – change very rapidly where this disease is concerned.

Mom wasn’t done fighting, though. While she never bounced back to where she had been, she did turn things around one more time – for a short spell – before that final downward spiral. I went from being certain she only had weeks left to believing she might actually rebound; however, that was not the case. Amazing how your mind plays games, but with this disease, “rebound” is a very relative term…

_____

If you would like to help us raise awareness, research dollars, and funds to help families on this journey right now, visit Marilyn’s Mighty Memory Makers’ page to join the team or make a monetary donation. In just two weeks, we’ll be walking to #ENDALZ.

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(((Sigh)))

14 Friday Dec 2012

Posted by Ann Napoletan in End of Life Signs, HomeReach, Hospice, Kobacker House, Mom, Weight Loss

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It was a pretty quiet day. I went home to shower around 6pm while Jess stayed here. At shift change the tech came in for vitals. Her BP and pulse have dropped significantly and she’s running a slight fever. The nurse hasn’t been in to talk yet…

Earlier today, when I said “I love you,” she blinked. I asked, “Are you blinking to tell me you love me?” and she blinked again. I felt something in her eyes. I believe that yes, she was letting me know that everything is going to be okay and she loves me. I’ll hold that experience close to my heart – I think it may be a long night…

Earlier today, after they repositioned her, I was rubbing her tummy and felt a huge protrusion. It felt like her knee, but was located much too high. I pulled down the covers and realized it was her hip bone. There’s nothing left to her…

One minute at a time… with many prayers for strength…

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Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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