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 hug him 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 advice. 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 difficulty 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 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 trying to get something done that needs to be done. At that moment, I want to make him feel guilty so he stops needing me so much. I tell myself that he doesn’t need that much attention or wants my company so he’s making up reasons to call me, or he’s just being 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 I’m evil and mean at those times. 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 the secret of my desire (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 for a while. That’s why I wanted to hug Patrick and say, “I know.”
To Patrick:
I’m praying for you, Patrick, and wish you the 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.
