Caregiver Recovery versus Bereavement

Dark sunset painting of the weight of caregiver recoveryI’ve been musing on the process that is caregiver recovery versus bereavement.  Somehow it seemed important to me to separate the two even though there is much overlap.

Take meals for example.  My whole pattern has been disrupted.  Larry’s death means taking out just one set of silverware, one placemat.  I don’t like to eat at the table anymore so where do I eat?  Should I bother to use the dishwasher?

The caregiver recovery part is remembering that I can prepare and eat foods of any texture.  I internalized choosing foods that he could eat so I have a hard time remembering I can eat anything, like rice, for example.  Just like I couldn’t remember it was ok to leave the house at first because I was so used to not wanting to leave him alone.

The biggest change for me is getting used to calm.    No crises, no drama, no emergencies, no adrenalin. I know I don’t have to be on high alert constantly, but my body is anyway.  My shoulders are constantly knotted, hunched, prepared for the next blow.  My belly is still tight, my breathing shallow.  I wake in a sweat, wondering what’s happened I need to deal with.  I carry a nagging dark shadow of worry that I’m not taking care of things.  I have the rushing symptoms of panic attacks at the oddest times.  Some maybe not so odd – like in a doctor’s waiting room for a recent physical.  PTCD – Post Traumatic Caregiver Disorder!

My relationship to time has changed.  Nothing’s urgent.  No problem needs solving ASAP.  If nothing’s urgent, why bother?  Measurements of time have changed, too.  The days and hours used to tick off to the metronome of CNA and nurse visits, breathing treatments and  pill schedules.  Now they ooze out with no structure.

There’s my relationship to the future.  When you live with a progressive degenerative disease, you have to stay in the present.  The present is the best you’ve got!  You can’t plan for the future because the future is completely unknown, in length and in possibilities, filled with things to dread.  Now I’d like to think the present isn’t the best I’ve got.  But my dread of the future is another dark shadow of habit.  And I’ve forgotten how to plan.

I am no longer needed.  No one needs me!  I have no purpose!  My days stretch out with emptiness.  Loneliness, too – but that’s part of the grieving.  Filling the emptiness is part of caregiver recovery versus bereavement. After all, I was abruptly fired from my job.  Sure there were parts of the job I didn’t like, but I really liked my boss – or my co-worker, depending.  In my case, I gave up my consulting practice two years ago for this caregiver job.  Now I have neither job.

The sounds of the house are different, particularly at night.  Yes, I have had to get used to sleeping alone.  But sleeping with quiet is part of caregiver recovery versus bereavement.  There’s no oxygen machine, rhythmically pumping, sort of like a heartbeat.  There’s no CPAP machine, with it’s own rhythm.  The sounds of the day are different too.  I don’t watch much TV, and especially this season, Larry always had sports on, because it was something he could do that he enjoyed doing.  Especially his beloved Red Sox games.  I can’t listen to noises of the game (but that’s because of grief).

Finally, it’s making decisions without the benchmark of the disease.  What house, what climate will work for Larry?  What can Larry do at this stage?  Where can Larry go with his lack of balance, his walker, his wheelchair?   What car is best for this stage of the disease?  I am now parameter-less.  Yes I have unknown freedom. Yes, I have more choice.  But I have no experience of living this way.  I’ve put my own wants and needs aside for so long I’ve forgotten how to have them, never mind how to act on them.

So now that I’ve made this list of what I’m experiencing that’s part of caregiver recovery versus bereavement, what do I do with it?  How do I actually go about recovering?

PS – What runs underneath everything is the need to recover from the residual physical, mental and emotional exhaustion.   Sleepless nights, hospital visits, choking episodes healthcare system failures.  But worst of all, day after day after day, watching your loved one suffer the progress of the disease – the indignities, the ugliness, the messiness, the incapacity.  Death by 1000 little cuts, as they say, for both of us.






10 thoughts on “Caregiver Recovery versus Bereavement”

  1. Thank you Nancy,I could not have been so diligent in counting the
    ways the feeling of helplessness I have been going through for the
    last nine years.Yes. I grieved whilstAlan was living ,but oh the fact my life revolved completely around him.The total loss of not having the lifestyle we had planned for our retirement losing so
    many friends who couldn’t cope with the loss of the man they knew to the man he became.The anger I felt towards God all the hurt and feelings had I done enough?Yes I did more like we all do
    because we totally take care of all his needs and totally forget or
    deal with ours
    The anger at myself has now gone but I still find it hard to mix social occasions where all our couples and I feel like a spare part.
    We all need to learn to move forward and start a new life but oh how hard it is when you have lost the one and only man you have
    ever loved.

  2. Blessings to you, Nancy, for this insightful piece. I think it speaks so eloquently to the challenges that primary caregivers face in the wake of loss, as they struggle with the question, “What now?” I also think it is worthy of a wider audience, and with your permission, I’d love to share it as a guest post on my Grief Healing blog. (I’ve already shared it on Twitter and on my Facebook page.) If you are open to that, please contact me at

  3. Thanks so much for this article–so so true–and so so similar to my husband–REDSOX and all–thanks again–

  4. A beautiful and loving sadness that follows the death of a loved one! These tender emotions expressed in these fragile moments take every ounce of our soul to survive this heartache! God give us healing thoughts and the strength to accept whatever his will!
    Johanna B

    at I read

  5. Thank you so much for this article! It gave me such a feeling of relief. I’ve been a caregiver for my Mom, who has Alzheimer’s, for six years, and it is hard to plan my future! She is still here. Once she passes away, I will lose my job and her income so I’m trying to figure out how to ramp up a new career to pay the bills and stay in the house. I like the way you talked about caregiver recovery. I have worked really hard to do three things per day of self-care. I have a long list of self-care ideas to choose from every day. I set an intention before volunteering for this, that the situation would be good for me AND good for Mom. I still have a lot of guilt when I try to make things good for me. But I’ve sacrificed six years of saving or increasing any retirement income of my own. So I really do need to focus on me and ditch the guilt trip!

  6. Sounds like you are doing a great job balancing the caregiver role and being intentional about taking care of yourself (which you should never ever feel guilty about!) Just like you have to put the oxygen mask on yourself in an airplane before you help put it on anyone else, you can’t take care of someone if you don’t take care of yourself. And it is imperative to be thinking about what next!! Good luck!

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