There Will Be No Post-Caregiving Season | Caregiver Action Network

There Will Be No Post-Caregiving Season

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There Will Be No Post-Caregiving Season

My responsibilities are light compared to most, for now. My husband is slightly disabled after a mild stroke, a dear friend is badly disabled after a severe stroke (I'm secondary caregiver there), and my MIL and FIL will need more help as time goes on (I will be primary caregiver for them).

I also expect to do at least some caregiving for at least two additional family members within the next couple of years.

Duration, however, is an issue. If all goes well, I expect caregiving to continue for the rest of my life, or, at least, for as long as I'm able. There may be a "post-caregiving" time, but that's truly the Worst Case Scenario.

My problem? I have some freedom now, even though it's limited and time comes in unpredictable scraps. I'll have less, soon enough. But, right now? I'm scared to try anything new. What if someone needs me? What if I make a non-caregiving commitment, only to get yanked away -- again?

Have anyone of you pulled yourself out of a self-inflicted rut? Or is this exactly where I should be now -- no plans, no movement, just waiting?

KarenS's picture
I tried...

I tried to get myself involved with something I enjoyed, and wanted to learn more about...   art classes.  Yes, I missed some of them due to other caregiving schedules for my husband with unplanned hospital and doctor visits.  I think we have to keep trying to do something for ourself, or we'll lose us in their illness. 

I already feel like I've lost me, lost the him who was, and struggle with my emotions when he ignores my feelings...  as if I have none.  Yet we must keep trying to do little things for us..  get out to the bookstore, or anything just to get away, and lose yourself for awhile.  Take a walk, see a funny movie...  we need to find some laughter. 

It's hard for me, as my husband seems to see only his needs and acts if I haven't any.  Like I'm not human, or I should feel as he does.  Lack of any intimacy...  no conversation unless it's him talking about work.  If I bring anything up he says "And the incessant drum beat goes on".  I think, what a jerk.  I bend over backwards doing so much for him, and he has the nerve to down play my feelings.  Or he'll say "I can find refuge in accomplishing something worthwhile ... plays, reading, work, etc".  As if I'm nothing...  One would think working on your marriage to make it the best with what time you have left would be the greatest accomplishment.  I say, will work be holding your hand when you need them...  when you take your last breathe.  I get so upset, and hurt.  Yet in my case I have to consider the source...  he is one nasty man to live with, especially now. 

Do for you, no one else will.  We must think of ourselves too.  We don't need to be beaten down.  I too have done more caregiving then any person should be expected to.  I hope you're appreciated, because I am not.

I've almost completely given

I've almost completely given up doing naything for myself.  I have a few activities I dearly love and some friends I like doing them with.  But I don't the time or energy for most the activities and I am tired of spending time with friends talking about my situation...but it's all I know now.  So I don't see many of them much any more.  I meet 1 or 2 of them for lunch once in a while when I actually go into work (I usually work from home to stay with my wife) and that's it.  My remaining activities...well...activity is one I can do on the way home from work for a minutes here and there and sometimes while running errands.  I can even sneak in a bit while my wife is in getting some testing or something and I can't accompany her.  I guess what all this comes down to is you have to figure out how to fit in what you can fit in.  But please keep trying to hold on to yourself.  Part of my problem is that I gave up.  I gave in to the guilt I felt at doing something I enjoyed while my wife could not do the things she enjoyed. Now I don't have the energy or hardly any desire to get any of it back.

KarenS's picture
Not good...

That's not good.  I too feel that way at times...  still we shouldn't give up

Glenda108's picture

It sounds to me like either you are suffering from burn out or are very close. You really need something to look forward to doing. Is there anyone who can take over for you for a short period of time? Even just a few hours would help. I understand that you are afraid to make plans for fear that another responsibility may fall upon you. However, you must do some things for yourself. You can make plans and still be flexible. You just have to take that first step.

I have taken care of my husband, my Mom, my Dad, my Mother-in-law and my Father-in-law. I even took care of my husband's grandmother for a short period of time. They are all gone now and guess what I am doing? I am working in home health taking care of another person. This time my period of responisibility is limited to certain hours of the day and the rest of the time is my own. There is joy and purpose in taking care of another person. Just don't lose yourself in the process.