Here and representing....

[Shelby]

Hi everybody.  Pull up a chair and let's talk about what extreme caregiving has meant to us, how it's helped and hurt our grief processes, and anything else that comes up related to our caregiving experiences.

 

You are safe, understood, and loved.

 

Shelby

[lcoxwell]

After being an extreme caregiver for so long, I think that the role became a primary part of my identity and who I thought I was.  Being an extreme caregiver was everything to me.  My whole world revolved around my husband, for better or worse, both literally and figuratively.  Because all of my time and energy was on caring for my Kenneth, I missed out on many things over the years.  Many of my friendships fell by the wayside, because I wasn't able to go out for dinner or have people over or plan get-togethers.  Every time I did, he would invariably have to be taken to the ER or would be hospitalized, and plans would have to be cancelled.  I missed out on many of my children's school events, because I was taking care of him, and I feel like I missed out on a part of their growing up, that I regret not being there for.  I was okay with missing all of those things, though, because he was the most important person in my life, and I could make sacrifices, for him.

 

I think being an extreme caregiver was both a blessing and a curse.  Once he was gone, I had a difficult time adjusting to no longer being a caregiver, and I had a hard time finding a place where I felt like I fit in.  Since my family lived across the country, as well as most of my friends, I truly felt isolated and alone, until I started making myself leave the house at least once a week to do something, anything, where I might have to interact with another person.  In some ways, I think the isolation and loss of identity made it harder to deal with the very early stages of grief.

 

On the other hand, because we knew he was dying, we had opportunities that others do not have.  There is a certain intimacy that comes from caregiving that is not present in typical relationships.  I am incredibly thankful that we had those moments of intimacy and feel it made our marriage stronger.  (That doesn't mean the bonding that occurs in other marriages is anything less than what we shared, it simply means other relationships are different).  Knowing he was dying, we had opportunities to discuss his final wishes, to talk about his belongings and who should get certain things, to share our wants and wishes for my life after he was gone, and to say our goodbyes.  I will always cherish those intimate moments and deep discussions, and I think knowing that he wanted me to go on to live a happy life, to find love again, and to not just survive, but thrive, has helped me to pick up the pieces a bit, as I build a new life without him.  Once I made it through those very early days, I think I have moved forward a bit easier than others that might have lost their spouse suddenly and without warning, and much of that can be attributed to having closure.

[SimiRed]

My extreme care-giving has made me have the need to "control" my environment.  All I ever could control was a clean house, organizing, clean, clean, clean, put stupid things in alphabetical order, scrub this... I still struggle with this and don't know how to stop.  It's overwhelming at times, gives me anxiety attacks and it drives the people around me batty! 

 

I don't think I'll ever learn to let go of that behavior, as I just need something that I can "fix"... It's a terrible feeling when I feel trapped and I just want to run away.

[anniegirl]

So many things but the thing that still impacts me is toll it took on me physically.

 

Caregiving broke my body and I am still dealing the the aftereffect that chronic sleep deprivation and stress inflicted.

 

I remember being told after I gave birth to my daughter that it took 10months to put my body where it was and would take as long probably to get back to where it was before. And that was about right.

 

In my opinion, caretaking is the same.

 

It took three years to wear me out and as long to bounce back (and that's factoring out the first year of widowhood, which is another stress on the body).

 

I find that I resent it too. The lingering things. And I really wonder if I could do it again. I am not sure.

[lcoxwell]

Caregiving broke my body and I am still dealing the the aftereffect that chronic sleep deprivation And stress inflicted.

 

This is where I am at, at this point - trying to deal with the after effects and the toll it has taken on my body.  At one year out, I still have so much trouble trying to sleep at night, and my body is suffering from it.  I started using an app on my phone to track my sleep. I average 6.1 hours of sleep on a daily basis, but my average sleep per record is 1.4 hours.  This means, I am waking up about every hour to hour and a half, all night long.  Just in the last few weeks alone, I have racked up 74 hours and 15 minutes of "sleep debt".  This is the same pattern I fell into during all those years of taking care of Kenneth, and it just never went away.

[anniegirl]

Sleep debt. The worst kind of debt, imo. It never can be well and truly paid back.

 

During the first year of widowhood, I didn't sleep more than six hours a night and never without multiple wakings. So not straight through.

 

Even though he was gone and I didn't have to lie awake wondering if he was okay or with half an ear alert for the phone, it took my body forever to come down from red alert.

 

My internal danger sensors are so fine tuned now that it doesn't take much of a crisis to set me off on the insomnia trail though I am much better at squashing it now.

 

That is the hardest thing in the years after, resetting yourself for "normal" as opposed to crisis.

 

What helped me the most (and I have unique circumstances that allow for it that not everyone has) is that I simplified my life so I am not bound overmuch by the clock or a rigid schedule. It was a self-preservation move. I simply couldn't fight who I had become and in accepting and adapting, I have found that I am better. But I was stubborn and it took me a long while to accept that I have different needs and needed a different lifestyle.

[Dahlia]

Once again, anniegirl, you are expressing my life.

 

I had six broken hours of sleep last night, but at this point, that feels really good than the two I was averaging.

 

I was doing yoga last night, and the teacher/whatever said, "Yoga is all about balancing effort and surrender." And I thought that is it. That is what I am being asked to do this year. I can't really move forward all of the time. I have to surrender sometimes. I have to construct my life so it can lay fallow for a little while.

 

It goes against all of my training and education, but it is necessary for my health and well-being to let things go.