"It's great to reminisce about good memories of my past. It was enjoyable when it was today. So learning to enjoy today has two benefits: it gives me happiness right now, and it becomes a good memory later." - George Foreman
It's okay to miss your life before Caregiving. Somewhere out there there is someone who gets this, I know it is because I have spoken to many caregivers who have felt the same but only felt comfortable saying it in very intimate spaces.
How do you start a conversation about hating caregiving? Like who listens without thinking, "what an evil witch, it's not the kids fault they have special needs or what is wrong with him talking about his sick wife that way?" Not many right? We may even find a raised eyebrow when talking to other caregivers at times about how much we hate our cargiving life. It's a hard conversation to have, and if you find someone who you can have it with that is golden! Most of us don't have that luxury.
Conversations about how hard caregiving is are very necessary but many caregivers aren't having them. Some of us are lucky enough to have them with our spouses but I have also heard male caregivers say, "I can't tell my wife how much I hate not being able to go anywhere without all of the stuff we gotta take with us..." There was one male caregiver who said he was "tired of not being able to hold his wife without upsetting my kid". He didn't hate the child, he hated what the illness was doing to he and his wifes intimacy. Once I pointed that out there was a look of relief on his face like someone opened the door to freedom to a captive soul, because that's what having real conversations about the "not so good side" of caregiving.
What strikes me as odd is the audacity of caregivers who live in the fantasy world of, " I wake up every day as unicorns whisper in my ear and encourage me on my path of servitude...I love this life and wouldn't have it any other way!" When secretly they fantasize about getting away and having a "normal life", in fact they were weeping and wailing in a fetal position days earlier, but when you open the floor with some real feelings and emotions about caregiving it's as if someone just dropped the "eff bomb".
Having a "real" discussion about the perils we face daily as caregivers can come off as "weighty", strained, embarrassing, ackward, and uncomfortable for both the caregiver and the person they are talking to about it, especially if they don't understand the obligations and commitments of a caregiver.
Co-workers exchange glances when we make "off-color" jokes about being able to have a full "bowel movement" in the bathroom without rushing to get back to a loved one who can't be left alone too long. It may seem "callous" to them to make such a joke about someone who is ill, they don't understand that is how a caregiver is coping and barley hanging on to thier "ish"!
Somehow the culture of caregiving has been "molded" into martyrdom and those who buck the system are shunned. Newsflash I am going to break the code and say, "Caregiving sucks". It's hard and heavy, burdensome and overwhelming most times. I will not back this statement up with a "...but I would not have it any other way..."
Falling into the trap of denying our negative emotions not only makes us ill it leaves us open to other stress related illnesses. Our physical health, mental health included there, as well as our emotional health are at risk when we are in denial. Anger, guilt, resentment, and fear are some of the negative emotions we "co-habitate" with on a daily basis sometimes depending on the level of chaos we may be facing. Why can't we allow ourselves to own them? Owning our negative feelings. Feeling our negative feelings are very important. If we don't release them we become quiet. Being quiet or "keeping it to yourself" means suffering in silence.
How Would You Handle Your Loved One Suffering In Pain? Do That For You Too.
Would you want to be there with your loved one in great pain and do nothing? Would you look for options to help ease the suffering?
As Caregivers we are always looking for solutions and short cuts to making life more bearable for our loved ones we care for, but when it comes to ourselves there is this belief that "it can wait" or "right now isn't a good time". When will it be a good time?
We cannot continue to care for everyone and everything else and leave ourselves in the dust when it comes to our needs, whatever they may be.
You did not ask for this life and honestly no one deserves to live in a constant state of "what is going to happen next" but life happens that way sometimes. You will get through this but it is going to take some modifications on your behalf to do so.
How To Handle Feeling Like Crap About Your Caregviging Life?
I had to sit down one day and ask myself, "what would you say to a friend that was having this very same issue?" I'm one of those people who loves helping others when they are struggling and suffering. I find comfort in comforting others. I had to find that comfort in comforting myself too.
This is what I came up with and what I say to myself when I'm having a personal "kick my own arse" session:
This hell I feel is real to me. It doesn't matter if its real to anyone else. I give myself persmission to feel it and to feel whatever I'm feeling about it freely, openly and honestly. Yes I know it's going to go away, but right now I feel like crap and I'm going to allow myself to feel like crap about what's going on.
This may be my "forever" life I can't wake up every day hating it but there will be days I will and that's okay.
Sometimes I resent my mate for being able to be positive or to detatch emotionally from the reality of what is going on. This was so difficult for me because my husband was able to shut down during the most intense years of our caregiving journey and I resented him for it, I felt like he checked out emotionally. Only after learning how men cope did I learn how to accept how he greived and respect it.
There are going to be days where I'm confused about how I want to feel because so many things are happening all at once, both good and bad, and that's okay. I can feel both. A good example of this would be a loved one having a breakdown and being hospitalized, and another family member getting the promotion they have been working so hard for or a child wins an award. This happens more times than not trust me. You can be worried and upset about what your loved one is going through and still experience joy and happiness for other events in your life as well. It's a complex range of emotions but it's normal for this life. You can be disappointed, defeated, overwhelmed, encouraged, envigorated, and inspired all in the same moment. You're not losing your mind.
Being afraid your loved one could hurt you while experiencing negative symptoms of thier illness is okay and normal. Mental Illness changes who our loved one is and many times they don't recall incidents that happen when they are having negative symptoms like psychosis, mania, or extreme depressive episodes. I struggled with this guilt, especially at the beginning of my journey when my son was really struggling with addiction and his illness was made worse by it. Caregivers don't like to talk about this out of fear of someone else becoming afraid of their loved one and treating them differently or enforcing the stigmas of mental illness being something you should fear.
It's okay to fear your relationship won't survive this journey, just don't let the fear paralyze you or cause you to check out of your relationship. Talk about your feelings with your mate, they are having them too. The fear is healthy and a sign you still love your mate and don't want to lose them.
Marriages fall apart on this journey because you stop being honest with each other. You don't have the tough conversations about the hard "ish". You tuck it under the rug or you fear what your mate will think if they knew how much you resent having this life. NEVER EVER throw what is dicussed with raw emotion back up in the face of your mate. You both had the conversation at a very vunerable moment and those moments are precious and what will make your union stronger and more resilient. Marriage counseling is an investment in the life you desire together. Sometimes we lack the skills to communicate our disappointments in a way that our may will understand without internalizing, a professional marriage therapist or counselor can help us with that. Your marriage can survive this life but you have to be real about what you are feeling and create an enviorment of support and of acceptance for your mates emotions even if they don't align with what your idea of "normal" or accepted is.
Missing your life when it was simplier is normal. People who don't have half of the amount of responsibility and obligations you do reflect on an easier time in their lives as well, it's human nature to want things to be better. Cargivers have the most difficult time with this. Guilt will drive us crazy if we aren't careful.
Sometimes it's hard to motivate ourselves and to stay encouraged when we are facing so much adversity and turmoil. Not everyone has the gift to stand outside of their situation and be objective about it, that's why support groups are so important. That's why therapists and counselors should be part of your tool kit as a caregiver, whether you are in a relationship or not. Not everyone has a spouse they can confide in or who is rational enough to accept assistance.
Sometimes we are caregivers for our spouse and our children and that creates a very complex set of circumstances because we cannot talk to the "problem about the problem". That is a reality about this caregiving life and the complexitites that surround it. As much as our journey can resemble someone elses our solution can be way "left field" of what works for them, that's why comparison is a thief. Comparison will rob you of the life you can have because you are hell bent on getting the results someone else has but they won't fit your situation because there are different factors that would change the dynamics of the outcome like having a spouse that is willing to go to counseling versus one that "loses it" at the very thought of discussing what is "going on" in the home.
Find an outlet, whatever it may be, so that you can take your life off of pause. Negative emotions are part of our everyday life I don't care who you are. You are going to have disappointments and let downs they are going to be in your "flavor" of drama and that may not be another caregivers "flavor" of drama and you will learn to be okay with that with practice. Mourn your old life when you feel the need to, that's okay, just don't unpack and live there.
Sponsored by: Care-FULLY an online Mental Health Caregiver Support Group and Community at HOMAGI.Org
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