Caregivers feel guilty over many things-not doing enough for the care recipient, employer, their own family, themselves, or anyone else.

Put Guilt Back in the Box

There are a multitude of emotions that play into being a caregiver or being the one with the chronic disease that needs the care. Which emotion takes front stage on any given day is affected by how you feel, how the other person feels, how much sleep you got the night before and what else happened that day.  One of the emotions that I have to battle more often than most is guilt. I think I struggle with it the most because I can’t seem to be what I think I should be and I can’t always do what I think I should be able to do. In my own mind, I know that when I say I will do something, I absolutely know that I can do it—I am quite capable; I have the knowledge, the skills and the ability to do what I say I can do.  Then something happens to prevent me from getting to it or doing it as well as I had wanted to do, and the guilt sets in.

I am extremely fortunate that I have a job that can be done from almost anywhere as long as I have a phone, a computer, and access to the internet.  Since I have all three at home, my manager allows me to telework.  I come on site at least once a week usually to attend meetings or to provide training.  I often attend meetings through teleconferencing but sometimes I just need to see a person’s reaction to be able to pick up on how a conversation is really going. On the days I go in, I often set up back to back meetings so I waste no time when I’m there.  To go onsite, it takes a minimum of four hours to get ready to go.  Unfortunately, our morning routine does not always go as planned.  Not to gross anyone out but sometimes the bathroom process doesn’t go as well as we would hope and it puts me way behind schedule.  Other times, I get a text from whoever was supposed to come that day saying they woke up with a runny nose or cough.  We try not to expose Lynn to any infectious or viral conditions because it sets him back so far so I scramble to find a replacement and often, that’s impossible so I have to stay home.  I HATE WHEN THAT HAPPENS.  I feel so guilty when I have to reschedule appointments or even when I have to say that I’ll need to talk to them by phone because I know they would prefer to talk face to face.  Though I still manage (usually) to get the work done, it’s not how I wanted to do it or when I needed to do it so I feel guilty and very critical of myself.
Now, flip that coin.  When I have to cancel going into work because Lynn’s body refuses to do what we need it to do or we can’t get someone to stay with him so he doesn’t have to be alone (note:  he can stay alone for maybe an hour or even two at most but no longer than that because he can’t get food, drink, or empty the urinary drainage bag for himself), Lynn feels so guilty.  He knows that I am jeopardizing my reputation for his sake.  Knowing that if he could just do those things for himself, I would not be under the pressure I live under every day makes him very depressed at times.  I need to be able to share my frustrations with him but I hesitate to do so because I know that guilt will certainly rear its ugly head.    It doesn’t matter that he has no control over what happened and that he absolutely can’t do these necessary things for himself so it’s really not his “fault” but to his way of thinking, it’s entirely his fault because if not for him…..  He is also afraid that one day, I’ll be so overwhelmed with all the responsibility and so tired of the struggles, that I’ll just walk away; so on the one hand he feels guilty and on the other hand he feels afraid. Yuck.
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What Do You Feel Guilty About?

That question was posed to me yesterday during a get-together with several other caregivers.  My first thought when I pondered that question was, “what don’t I feel guilty about?”  I realized in listening to the others share, that I don’t give myself enough credit for doing the best I can.  For example….
I feel guilty that I get annoyed at Lynn when he interrupts me over and over again when I’m trying to do other things.  I hear him call my name less than five minutes after I’ve been in his room helping him for fifteen and my first thought is, “what now?”  Then I go into his room fussing about why he couldn’t have said something while I was still there. Often his issue is something he could not have anticipated and something he really needed.  I realize that in my mind, I’m accusing him of being thoughtless of my time when really all he’s doing is asking me for help with something he really cannot do himself.  More times than not, it’s something I would have wanted done if I was him so I can’t really blame him for asking…Then the guilt comes rolling in…Why can’t I have more patience?  How can I get angry at someone just asking for help when he really can’t do it himself? What kind of caregiver am I to resent helping him? …and other thoughts which I am sure you, too, have experienced at times.
Then there’s the guilt for not doing my job as well as I used to.  I’m not as prompt in answering calls or getting back to emails.  I can’t come into work to meet with people face to face except once a week.  I’m not there to brain-storm resolutions to issues or even just to share concerns.  I don’t turn out as much work as fast as I used to.  Therefore, the guilt piles up and I feel that I’m letting everyone down at work as well.
Of course, there’s also extended and immediate family guilt.  I can’t attend family gatherings unless they are held at my home.  I can’t help out with family needs as much.  I often have  to cut conversations short to go take care of something for Lynn.  I can’t be there to support them and care for them the way I once did…More guilt.
I don’t spend time in worship as I used to.  I was very involved in my church before Lynn’s hospitalization.  I was often at church five out of seven days. We rarely missed attending a Sunday.  I tried to always pitch in to help others.  Now I’m lucky if I  find time to listen to the sermon off the internet from the previous week on Sunday morning. 
When I step back and take a look at what I’m feeling guilty about, I realize I’m ridiculous. I’m feeling guilty about being human! 
If I only had one of those things to do, then I could devote lots of time and energy to perfecting what I do, but that’s not the case.  I have to divide my time among so many needs that it’s impossible to do more. 
Imagine this:
If I was a home-made delicious apple pie that was never cut, then I would look and smell good but either would not bring much joy to anyone or if eaten all at once, I would make them sick.  If I could be cut, instead, into eight pieces, then eight people could share in the joy of my deliciousness or I could bring joy to fewer people more times.  But what if, I’m cut into sixteen pieces?  Does that mean I’m not delicious and I don’t bring joy?  No.  I would still taste just as good, though I could not bring as much immediate joy to those sharing in the pie.  I have not lost my value or the delicious flavor available to those who can sample the taste, I am just spread out to many who share the limited joy of smaller pieces.
Maybe that’s a weird analogy but it sort of works.  I still am me with all I have to offer and share, but I have just so much of me to go around.  The smaller my pieces become, the less joy I have to share with any one person.  If the ingredients were “thinned down” so that the pie would go further then it would not taste as sweet or bring as much joy so I have to allow myself to do the best I can with the pieces I have to offer at that time and not look for ways to thin myself out so much.  That also means I have to give up my way of wanting to be perfect with what I do.  I need to allow myself to let some nonessential things go, buy rather than make things, accept help and ask for more, not promise to turn around projects as fast as I once could, etc.  I need to learn to care for myself in the same way that I care for others and give myself permission to be less than perfect as long as I do the best I can at that moment.  I am still an awesome caregiver, a very skilled worker, a follower of Jesus, and an awesome Mom even though I can’t be all things to everyone I used to be at every moment. It’s time to step off my own pedestal and have a little reality check.  I’m okay and I’m doing a good job with what I have and can physically manage at any given time. 
So, time to kick guilt to the curb.  “Get thee behind me Satan. I’m a child of God and I’m doing just fine so take the guilt knife out of my back and get lost!”

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The Secret Life of a Caregiver

 I follow the writings of another caregiver, Patrick, ( who has been caring for his wife who has MS for 22 years.  Patrick recently discovered he had cancer and one of the comments he made in his blog struck home with me.  Patrick described how he hid the truth of his illness from his wife so that she would not become upset over the news. When I read that, I wanted to reach out and give him a hug and say, “I know.”
Who, as a caregiver, has not been in the position of putting on a smile to hide the true emotions they are feeling?  I have been very fortunate (so far) that I have not had any serious illness to hide, but I have learned that I must be careful what I share. I remember coming home from a medical appointment where my healthcare provider warned me that if I didn’t get some sleep, I was likely to become very ill…and then who would care for Lynn?  More than a concern about my own health, I started taking measures to address the warning so that I would be around to care for him. 
I admit though, I told Lynn what the doctor said.  He initially took it in and encouraged me to follow the doctor’s advise.  Then I started noticing that depression was setting in for him.  He would be on the verge of tears and he was constantly asking me how I was feeling.  I realized that while I felt responsible for him, he felt guilty for the potential harm he was causing me and he was having a very difficult time dealing with it.
In the spirit of full disclosure, I will share that I am sometimes evil.  Sometimes I am so tired of being tired and I’m hurting all over from muscle strain and the burden of doing everything, and I just want to escape…then he calls, “hey, sweetie!” to scratch an itch for the 10th time in an hour or to adjust his clothing…AGAIN… or something else he needs when I’m in the middle of trying to get something done that REALLY needs to be done.  I admit in that moment, I want to make him feel guilty so that he stops needing me so much.  I tell myself that he doesn’t really need that much attention or that he just wants my company so he’s making up reasons to call me, or he’s just being plan unreasonable and impatient…. I’m angry and resentful of the situation so I say something that I think will make him feel sorry for me.  I hope you all will not think too badly of me but at those times, I’m evil and mean.  I don’t like myself after that and when I see I stuck home with what I said to him and he’s feeling guilty then I feel awful and try to make it up to him…but I admit, it happens…especially at night when I’m tired.  It’s embarrassing and I feel guilty that I’m so petty but it’s true unfortunately.
I’ve found that I have many secrets as a caregiver.  I keep my fears a secret (when will he get worse, what do I do about a caregiver, how can I manage repairs, etc.)  I keep my desires secret (I want to escape, I don’t want our life to be this hard, I don’t want to move one day)  I keep concerns about my health a secret (are those just stress palpitations? do I need surgery on my thumb joints?) I keep my “bad” self secret–my grouchiness, my frustrations, my resentment at times.  
I keep all these things secret because I don’t want to hurt Lynn.  Some of it he knows by observation and experience anyway (especially my grouchy nature)  and sometimes I share just enough to prepare him for what may come but not so much as to drive him into a depression.  It’s tough being the strong one though.  Sometimes you just want someone else to carry the burden awhile.  That’s why I wanted to give Patrick a hug and say, “I know.” 
To Patrick:
I’m praying for you, Patrick and wish you the very best. I’m so glad the surgery was successful and you dodged the bullet, but right now, it’s time for someone else to care for the caregiver.  God Bless.

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