The Secret Life of a Caregiver

 I follow the writings of another caregiver, Patrick, (http://caregivinglyyours.blogspot.com) 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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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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12 Responses to The Secret Life of a Caregiver

  1. Judy says:

    That’s not evil. That’s human.

  2. Robbi says:

    Funny how things work, reading your post gets me through. I hope the replies you get help you in return. I too was just at the Doc. Our family doc for 35 years. He siad “Rob there is nothing abnormal about your test, what you are feeling is simply BURN OUT and stress. If you don’t start thinking about yourself you will die before Tom!”He has no clue how hard that is to do, or at least do without guilt. I did however come home and tell Tom , Doc said I am out of gas and need to stop a little. Well hard as it was, we just last night hired a live-in care giver….I am scard out of my mind that we are not doing the right thing. I feel in my heart that we are and this guy is a good one, but the little monster is reering up and telling me I am being selfish….my kids tell me Mom you are far from that.

  3. Robbi says:

    You are not a monster non of us are. We get burned out, we say things we should not. I do it, I feel the same way you do after I am short with Tom. He gets it , sometime. Last night I was getting the room ready for the caregiver and Tom called and called and called. For some reason the baby monitor did not work. When I did hear him and came running he had a fit! I can understand his anger but he was so upset he just yelled and yelled at me. I kept saying I’m sorry I did not hear you. What do you want me to do? It ended with both us upset. I hate when that happens, I understand his panic, but gosh he knows I would have been up , just like the other 500 times that day if I would have heard him. So I get it , and let me tell you we are nothing like monsters, we are saints. We are blessed with good husbands but….everything has it limits. I always ask myself (which I have never said to anyone) Would he do all this for me? Or would we have had help a long time ago. I know he would have tried but could he do it all, I don’t think so. There are so many times even with all our supportive family and friends I feel so alone. To many decisions to make. To much everything. But I like you keep a smile on my face and love in my heart. My friends say you make it look so easy….Ya. Hang in there my friend you are not alone and neither am I . Hugs to you

    • mscaregiverdonna says:

      Thanks for sharing your experiences. Sounds so similiar. I remember once coming out of an extra long shower where I decided to just take my time. Lynn was frantic when I came out, convinced I had fallen and needed help and he couldn’t get to me. He was about to call LifeAlert to get help sent here. Everything we do has an impact. It really helps to hear from readers that have similiar experiences and to hear that I’m not as evil as I feel. Thanks so much for your support.

      • Robbi says:

        We started a live in caregiver yesterday. Not sure if he is the right one. He said he wanted to work when we needed him , but now he is singing a different tune. Want to have a heart to heart with him, I surely don’t want to train a person an have him leave in a few weeks. This is so hard, wish there was more advie for us out there. Have a great day, sorry to post my troubles but felt like I needed to tell someone.

      • mscaregiverdonna says:

        Robbie: My full time job when I’m not caring for Lynn is working in Human Resources. One of the things I tell managers is to always clarify expectations up front. Think about what you expect to see the person doing during “down” time and what you expect as far as performance and behavior when he’s helping Tom. You don’t have to give every detail but overall what you want to see. Then tell the hired caregiver, “Now that you’ve settled in, I think it’s important for us to have an understanding of job expectations.” Go over what you want to see and then ask him if he has any concerns about being able to meet them. After discussing them, add that you will be considering the next few weeks to be a trial to see, for both of you, if this is a good match. Therefore, it’s important to clarify any concerns or questions as they occur. That “speech” will set the tone that you are the employer and have expectations for him, the employee, and that this is not a “done deal” until he proves he can meet your expectations. Good luck.

      • Robbi says:

        Donna
        Thanks this is not an easy process and very emotional.

      • mscaregiverdonna says:

        I can only imagine. It’s something I may have to do if my employer decides I can no longer work from home or wants me on-site more. I dread it so much but know it’s likely to happen at some point. I’ll be thinking of you.

  4. caregivinglyyours says:

    Donna, thank you for your prayers and this wonderful entry about secrets. Some of which I’ve been doing for so long I take them for granted.

    Caregivingly Yours, Patrick

  5. Donna riley says:

    My husband had a traumatic brain injury 27 years ago from an auto accident. I’ve been taking care of him since then. I retired from teaching. 5 years ago. My parents helped us when our two children were younger now it’s just me. And I’m exhausted.

  6. Donna riley says:

    Not only am I a caregiver. I’m in a constant battle daily. His 1st auto accident resulted in his right side being semi paralyzed, balance problems. And motor skill problems. Resulting. In him falling. Often. And more head lacerations. But he is a very stubborn person and will not use a wheelchair. My heart sinks every time I hear a thump
    Beside head trauma he had a 2nd auto accident. Resulting in rotator cuff surgery knee surgery. Later was diagnosed with prostate cancer underwent prostatectomy.
    I need to help him dress daily. And I have to feed him. I’m exhausted. And he likes to drink. I can’t believe I’m still alive. The emotional pain is unbearable

    • mscaregiverdonna says:

      I totally understand. There is never enough time and never any time for rest or yourself. Lynn was like your husband at first; always falling; very stubburn and he was drinking and smoking all the time. He went into the hospital for three months in the ICU and though it was very traumatic at the time, it was the best thing to happen to him. No more smoking or drinking. I learned though the only way to cope is one minute at a time but I admit to days that I would like to be in the hospital myself….just to rest. God bless you and give you the strength you need. It’s the only way I get through it all.

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