Internal Cry of the Caregiver

Internal Cry of the Caregiver

I’ve heard it said that parenting is the hardest job. But, I would say that caregiving is by far the hardest because 1) most caregivers never plan to be caregivers 2) it involves making crucial decisions under duress, and 3) many people do it while parenting at the same time.

I never wanted this job — I can’t do this. Nothing’s any good. I want my old life back. I don’t know who you are anymore! I want my old husband (wife, child, mother, father) back! I want someone to think of MY needs for a change.

These thoughts creep in from time to time, sometimes for days at a time, no matter how much you love the person you are caring for. It’s simply human. These thoughts are confusingly intensified by these thoughts:

How can I think this way? What’s the matter with me? I’m so selfish. I’m a bad caregiver. Other caregivers get through this. Why can’t I?

And to complicate matters further, they run alongside these thoughts:

I love you so much. I miss you. I wish this never happened. It must be really hard for you. I wish I knew how to help.

I remember sometimes looking at Hugh while he was sleeping peacefully and thinking, “I’d love to be able to sleep like that. I have not had a good night’s sleep in months.” I’d be standing there feeling jealous of my brain-injured husband because he could sleep. My emotions made my logic irrational. I’d think to myself: “Can I be brain-injured for a few days and you take care of me now? I need a rest!” I’d actually be angry with him for being able to escape in sleep.

My most rational side came out when I talked to my children and tried to be strong for them by telling them that things would work out in time, that life would get easier, that Dad would heal, but it would take time. Looking back, I know they knew, or felt the anxious vibes I was putting out even with my sensible words, and that they were likely going through the same emotional upheaval. In hindsight, I realize that our daughters, Mary and Anna, were being strong for both of us. They tried hard not to rock the boat (or it might sink completely). They bottled up their own strange emotional cocktail of I love, hate, want my parents back, and swallowed many of the feelings they had that rose in their throats like bile.

There is no perfect caregiving situation, no easy path to follow. Every household will cope in its own way. Every caregiver will feel conflicting emotions, some that are noble, and others that feel shameful. What we all need to accept is that this is part of the experience, and that we are human, but we are trying, and sometimes just hanging in there is the noblest act of all.

Comments (24)

I just want to say THANK YOU to all of you. I suffered a TBI almost three years ago and as a single mom, had no in-house help. Because of that, I had to rely on a friend to get my child back and forth to school for the four months I was bedridden. Another friend brought us dinner each night. I am fortunate in that now, all I experience is phrase and word retrieval issues. That used to frustrate me but I have found ways to work around it. I also use those moments to educate others about TBI. 

Anyway, I want all of you to know you are amazing and valued and loved. I cried reading this because so many people are affected by TBI yet it's still such a silent suffering for us all. Thank you for all you do. 

There are those of us who are taking care of brain injuries that will never get better, never walk, never again hold a job, or who are so cognitively impaired they can't remember what they had for breakfast 10 minutes ago. These are the ones who need help and strength. These are the ones that no one understands. 

The crisis for us never ends or gets better. 

I could have wrote this myself. This is every feeling I've had since my husband sustained a TBI four years ago. I spent the last hour going through your past blogs and sobbing. I have had a very hard time finding someone in a similar situation. My husband and I have 3 kids and when you said something about your daughters being strong for you, I got chills. Our kids have been my rock through this crazy rollercoaster. Now, I feel as though I have a friend that truely knows what I'm going through. Thank you for sharing your life with us. It helps others so much! :)
Worse is thinking the accident could have been avoided had you let your husband take you to Daytona for the race that weekend like he wanted to instead of worrying about the business. I live with that guilt everyday and now we've lost the business and our home so enjoy life while you can, you just never know.
Finding this blog after reading TBI & PTSD Navigating the Perfect Storm (Brainline Military) on hunt for something to share with my sister n law after long raw in depth conversation sure rocked the core of her whom also informed my husband brother and other brother that brother they knew is struggling w/TBI & PTSD...
People don't understand what we go through. It hard to love and hate your spouse at the same time. It's not my husband's fault, I know that, but I've given up my life for him. I have stop gaps in place for him but there's nothing for me. Scary. But I can't afford to put things in place. You do say what we all think. It's wonderful to hear others feel the same. And I'm trying to keep it all normal for my 20 year old son. He should be a kid and not a caregiver. Let's all hope we can be strong and brave and healthy as we take care of our loved ones.
I have a 27 year old son who received a severe TBI on feb 19, 2011. When he was taken to hospital doctors said there was nothing they could do the injury was too severe with shearing. My son was one of the fortunate ones. When one of the resident trauma surgeons (her best friend) realized after seeing her name on the chart that she was one of the ICU nurses on that night. When they took her down to see him the neurosurgeon on that night decided he "had to try something for her sake". He took him into OR and was able to get the drain and monitoring equipment in. That was the beginning of our nightmare. He spent 1 month in hospital coming out of drug induced coma when drugs were stopped. He spent 1 month only in rehab because he "wasn't making enough progress". I brought him home on April 12th last year requiring total care with teach and feeding tube - well the whole 9 yards. He is progressing very slowly. Reading what you have posted has helped me soo much. I am not the only one with these thoughts occ.
Thank you for your blog. I have an adult daughter with severe memory loss that would be in a nursing home except for the support I provide to her. I've also become more like a mother than a grandmother to her daughter. And now, my 40 year old stepdaughter who recovered from brain surgery 10 years ago is showing signs of more trauma. My husband is a diabetic who won't exercise or watch his diet and is getting more and more obese with the health problems from that. There are days when I do walk away because caretaking is now my life.
It's funny how hearing someone else say the things that are part of your own inner monologue can make you feel better, even if only for a minute or two. Now if only there was a way to get lasting relief. I feel like I'm in a special hell caring for my mother when I'm a single 40-year-old who can now kiss the rest of her own life goodbye. I have no husband to lean on, no kids to comfort me - it's just me - and thanks to being a caregiver now, that's probably all it ever will be. I don't know how to come to terms with that.
To everyone who wrote and everyone out there reading this blog post and these comments, I am in tears over the love, sense of connection, and honesty in these notes. Thank you for responding, and keep building relationships here. We can all help each other little bit by little bit, simply by sharing and understanding. There's more than a little comfort in knowing we are not alone. There's so much we can learn from each other.
And let's not forget although being a mother is a tough job - when you take care of your little ones' "bobo" it will get better, it will heal. We as caregivers care for our loved ones knowing it will not get better (well in my case). But we keep going on, with smiles on our faces. To all fellow caregivers take a minute for yourselves today :-)
Well put. The more of us who speak out, the more we understand we are not "bad" for our "burn outs" and some of these shameful feelings are normal. Thank you for helping to "normalize" in me what could never be seen as "normal" to the world at large.
ive been caregiveing my husband joe for the past 6 yrs..his accident was 8 yrs ago..yeah, im tired, lonely, isolated..all the intangibles most don't give a second thought to, joe has and always will be my best friend..we both have skid marks from life ..but don't we all?? neither one of us gave a thought that this kind of situation would be here..duh!! reality..we've been married for almost 38 years, our sons grown with lives of their own..we thought yes.. now its our time onve again..ive cried for 8 yrs..nothing changeshow joe is..he sustained tbi/stroke, but he is also a nam vet , trust me..its been a long haul..and yea I do have ptsd, not only from his experiences of viet nam, but now also how much I have ptsd..ive learned to accept things because all joe and I have is now!!
i need you ..... you understand.
You must be reading my mind this summer. And I've been feeling so guilty for it all. I want to run away but there's nowhere to go.
My husband\'s head injury was over thirty years ago. I can still recall the feelings of helplessness, frustration, and anger. Personality wise I lost the man I married, and my kids lost the dad they always knew. As he regained some of his memory things got smoother. He slowly began socializing and made his way to recovery. Today, the major things are obsession over things or events. He still leaves decision making to me (continuation of the caregiver role) as it stresses him out too much. My greatest fear now is aging and wondering what impacts TBI will have on him.
I have had all these thoughts at one time or another! I've been caregiver of my daughter for nearly 27 years now. She was hit by a car when she was 12 and sustained a closed head injury. She requires total care. There are days that I am so tired, so frustrated, so depressed and that's when some of these thoughts enter my head. But now I have made it but of course my husband didn't so after 23 years he left. I couldn't just get up and go when I wanted so he found someone that could. I struggle with life sometimes but I'm still here taking care of my daughter and it was nice to see that I'm not the only one who has these thoughts. Thank you!
".., that we are human, but we are trying, and sometimes just hanging in there is the noblest act of all." So true! I remember worrying that I could be a "better parent" and then I read that, as long as you keep trying to do better, you will do better. And maybe the "bad parents" or the "bad caregivers" are the ones who stop questioning and reflecting on this? "Progress not perfection" is a good motto for me - that, and the Serenity Prayer!
I think the hardest of all is when he is in such pain and there's nothing I can do. Often as the one closest to him, sometimes when the pain levels are what he calls off the scale and leading to panic, I am the recipient of his pent up anger (not physically at all ever - just angry rants and misplaced blame - and he hates himself later for lashing out like that). All I can offer him then is an ear, a shoulder and my presence and it's heartbreaking to see how much he's suffering, That helplessness is one of the most difficult parts of being a caretaker for someone you so love. Phil and I have been in love and living together since we were 19 - 44+ years ago. Miranda Paymer P.S. I am on Facebook.
Wow, thank you for putting into words I couldn't express myself. The "cocktail of emotions" is dead on!
It's as if I wrote this myself. There have been days I thought about throwing myself in the floor because I was so frustrated yet so worn out.
Is that how it feels? No one can blame you or your family for any of these feelings. This is how it feels for me. I know my husband is being absolutely wonderful to me. I know he has had trouble with all the aspects of caring. He won't tell anyone-but all of a sudden his health is starting to give way. I yearn to know how to comfort him. I yearn for our old life. I yearn for my Independence. I yearn to be that capable person I once was. Just this morning someone said to me,"But you look alright!" And I am lucky that I do. But if I spend my whole time yearning I don't have time just to be present. Believe me I know that the person you care for is thinking all of these things and also knows how wonderful you are. One day at a time..... Get some time for yourself... and the children.... A rest is what you need. Kind regards Susan
Great article I could not have said it better! I just remind myself it's ok to get some rest we must or we will crash too. I know my husband didn't ask for any of this - no one has. So what makes us good caregivers? It's because someone people do things out of obligation but when you are a caregiver you do it because honestly you hate the situation but you must do something while you are in the midist of it all. It's like you can't stop until you find that new medication to make your love one a little better off- or you will do anything to get a piece of the person you lost. Yes because we miss them so much - but also because we know they miss themselves - For all of us going through this - Stay Strong!
Amen. Emotional cocktail. I love that phrase. However- my biggest take away from our experience has been that the universe provides the right people at the right time for answers. Just have to trust and practice recognizing those resources.