Confessions of a Caregiver for a Career Caree

Colleen

Confessions of a Caregiver for a Career Caree

Colleen
candle-685661_640I am a terrible person! At least that is how I feel at times. My husband groans in pain and I roll my eyes. I am impatient at times. He complains that his back hurts, his bottom hurts, his neck hurts, his stomach hurts, and I clinch my teeth so the following words do not exit my mouth: "Man up and stop being such a baby!" And it's not that he is faking it, he is not a hypochondriac. He is honestly in pain but still when he looks to me for comfort many times he receives nothing but annoyance.

I feel heartless. But every dramatic throe of pain send my eyes rolling, I can't help it. I pray diligently, I pray for patience, I pray for kindness, but I always fall short. Perhaps I just have been doing this too long. How long you may ask?

We met and married in 1988, he had asthma problems and drank excessively but for the most part was a hard-working truck driver. I joined him on the road and our love grew. In the summer of '89, he fell in the back of a refrigerated trailer, herniating two discs. He has surgery to repair the disc but cannot go back on the road. He begins to drink heavier to sedate the pain in his back and the loss of his occupation.

By 1990 his excessive drinking is shutting down his body. In April I take him to the hospital, jaundiced, pains in his stomach, rapid heart beat. He is in ICU for three weeks, and he pulls through with a renewed resolve not to drink again, which he has succeeded in to this very day.

From 1990 through 1995, he is in relatively good health. He goes to work as a dispatcher for a towing service and then becomes a woodworker. However, he is hospitalized at least three times a year for asthma-related illness. In 1995 a heart arrhythmia is detected; his heart is enlarged, which they treat it with medications. But still we have yearly bouts of hospitalization due to respiratory issues.

In 2001, after several hospitalization treating him for pneumonia they determine he is suffering from Congestive Heart Failure. Another three weeks in ICU he comes home with more meds than I can count. He can no longer work at all. He helps me with the day care but quickly he becomes sedentary. He starts complaining more about the pain in his lower back where he had the surgery. I try to interest him in a hobby--model plane flying, metal detecting--but he favors the couch and TV.

2005 was nearly the end. His first cardiac arrest! As a child care provider I am required to take CPR, never did I think I would have to use it on my husband. Obviously he survived, with very little after effect but a bit of short-term memory loss. The doctors feel that an implanted defibrulator would be beneficial in case he experience any more irregular arrhythmias. They were so right!

On President's Day 2007 his defibrulator goes off first thing in the morning. By the time the paramedics get to him it has gone off three more times. He is conscience and can feel clearly each shock. In the hospital it continues to go off. The doctors unwittingly decide to do an ablation to detect the cause of the potentially lethal arrhythmias. He flat-lines during the procedure. They work on him for 45 minutes, chest compressions, exterior defibulators, and finally medication they haven't used since the 1950s provides a small life sustaining beat. The hospital keeps him in a medication-induced coma for five days, allowing his body to rest while machines worked his heart and lungs for him. And even through all of this, he suffers no long term mental or disabling physical damage.

2009 comes with the problems with the implanted defibrulator. In April it shocks him three times unnecessarily; the cause is a cracked wire. They decide to install a better device. This one has a screw loose, literally. The noise of the loose screw sends a message to the device that there is an irregularity in the heart and shocks him. They put another one in him; three days after placement, it's recalled. With the third and final defibrulator, they have a hard time closing the incision due to the secession of surgeries. A pus pocket develops around the device. "There is no way we can open him again," the electrocardiac-surgeon says. They keep him in the hospital with heavy antibiotics. We deal with this infection until the end of the year.

For the next few years, Gregg's health issues are minimal. Respiratory and emerging arthritis serve as minor annoyances for 2010 through 2013. The in 2014, Gregg's arthritis worsens, becoming disabling. He is unsteady on his feet, needing a walker or crutches to get around. In November, he falls in the bathroom, breaking his leg in four places and injuring his back. He has pins places in his leg and stays in rehab for three weeks.

2015. This year proves to be my breaking point. The role of caregiver becomes overwhelming. I become resentful. He is totally dependent on me. He is in constant pain, I can't do anything to relieve it. He sedates himself with strong narcotics, I allow it because it gives me a break. I also have to tend to all the household needs and run my daycare. I become tired. No, tired does not even come close to describing my status. Depleted. Worn. Exhausted. No, what I feel needs a whole new word of its own. One that can express the hopeless, drained, self-pitying way that I feel.

In June, Gregg has a Verttioplasty procedure to help ease the pain in his back. It helps, I am hopeful but then there's the hip. There is always something. I lash out at him, he does the same to me. I get resentful about everything. I develop an irregular heart arrthymia. Yeah me! At least I get to relax for awhile. A very short while. We start to press about hip replacement surgery. After three months of struggling with that issue, he has the surgery. Two weeks in rehab, he is walking without crutches or walker. He says he feels great but I am dubious. I feel he need to go through outpatient therapy. I feel I have no faith in him. I know he has a propensity to be lazy about exercise, and I call him out on it several times. He resents that. We fight. A lot! New ailments emerge, they always do. First there is the bed sores from him sitting for long hours. He huffs and complains about theses sores very much equivalent to his complaints about his hip or his back. I roll me eyes. Then there's his stomach, he complains that he feels nauseous. "Well, lets go to the doctor and get it checked out." No is always the answer. "Then shut the *beep* up!" I mutter to myself. He complains but never wants treatment. He barely eats, he is losing weight fast. Then the rancid, sulphuric belches start. No, he says, there is nothing the doctor can do. Plus he is mad at his doctor for cutting back on his pain meds. That is a whole other drama by itself. Yes, my husband is dependent on his pain meds.

Now, finally, this week. His butt hurts, his hip hurts, his stomach hurts. He is having issues with his breathing. As am I. In fact the whole household is one mucus coughing swarm of germs. And I have to take care of all of it. So engulfed in self-pity, I am. A true candidate for martyrdom. I really disgust myself sometimes. I want to be that angelic sympathizing face that comforts my husband. But I can't anymore. I have lost that ability somewhere down the line. I pray that it returns, I loath my resentment. But every time I am overburdened, resentment rears its ugly head and I say things like I did Friday night.

I just got back from taking my six daycare children to see Santa. The two infants are crying because they want out of their cars eats and my nearly two-year-old is still crying after being traumatized by sitting on Santa's lap. While I struggle to get them all in, Gregg moans loud to be heard over the squall. Anger and resentment starts to boil. At the same, a parent arrives. "Oh my, you have your hands full with three crying babies!"

"Four!" I say aloud, nodding my head towards my husband. He glares at me. My parent smiles politely.

When they leave he expresses his hurt feelings. "Well, you carry on like you're dying," I defend myself, all the time knowing I am wrong.

"Well, I feel like I am dying!"

"Oh, Jesus Christ!" I roll my eyes.

"Maybe that's what you want so you can be free of me!"

"Dear God! I don't have time for this!" I stomp around the room, getting ready for an evening babysitting job I have. I am in full-blown resentment mode. I give him a quick kiss goodbye. He is shivering, says he is going to bed. I feel his forehead, it is a bit warm. I take his temperature with a new forehead scan I just bought. 99.4 it says. Over dramatizing as usual.

I go to my job, while the kids are playing I call him. He answers, garbles how terrible he feels, "Please come home."

"You know I can't. I will be home after midnight."

An hour later his words start to needle me. "I feel like I'm dying!" "You want me to die."

I don't want him to die. I want him to get better. But I know that will not be possible. I call him again. The phone doesn't ring. It doesn't do anything. Again I call, the same thing. He doesn't answer his cell phone. I contemplate calling the neighbors to check on him. Oh, he is fine! He is probably mad at me and took the phone off the hook, or is blocking my calls. But what if... Naw!

Driving home I pray that he is alright. What if I walk in and he is dead? What if it isn't just dramatics? When I get home he hollers "Hello" from the bedroom. I resolve to be compassionate. I check on him. His butt hurts,  I check his bed sores. Sores that we have struggled with for four months. Frustration bubbles, frustration breeds resentment, I exhale them away. I check his temperature. It still registers a low grade fever. He says he fell out of bed. "Just trying to make me feel guilty for leaving you," an angry little monster whispers in my ear. I shake it away. No! I am going to be kind and patient, for the Bible says that is what love is, and I love my husband. We sleep roughly until 5 a.m. He is shivering, I am coughing. His temperature still says 99ish. He complains about his hip hurting, I struggle to control my eye rolls. I tenderly examine his incision and hip. The incision looks good and fairly completely healed, yet there is redness over the hip. I suggest going to the emergency room. No! He shivers, I don't want to go out. My anger rises. Great! We will just spend our Saturday moaning and crying! I swallow the words before they can be said. "Just let me sleep for an hour, if I still feel bad we will go to emergency." I relent. Breathing away the annoyance.

I go to make coffee. He is heading to bed. And then, BOOM! I run to the bedroom, he is laying on the floor. Without hesitation I grab the phone, while dialing 911 I cannot help but feel a thrill of victory run through me. "You are going to the hospital now!"

At the hospital they say his temperature is over 103. (Tip: Temperal thermometers are inaccurate!) Chest x=rays shows he has signs of pneumonia but not impressive enough to cause such a high fever. I tell them of his stomach issues. They are planning on doing a string of tests.

So this is where we are now. Gregg is in the hospital, again. Not for the last time either. That will never change until. well, the end I am afraid. But my plight can change, I just need to figure out how! How do you exorcise the demons of frustration, resentment and anger? How do I regain the compassionate wife that I was at the beginning of our marriage, when there was hope of total recovery? I want to be hopeful again. Now, hope is something I fear. It always lets me down. Both Gregg and I deserve hope. Hope for health, hope for a stress-free life. We have just been without it too long.

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Goldie

Colleen, I understand the resentment and how difficult it is to get past that. I'm glad the group is here because I also know that when you can't just scream it out, it's so much worse.

jan

Amen and Amen to that, Colleen. You and your husband are not far from our thoughts and hearts.

Denise

Oh, Colleen, it's so hard to keep going when it feels you are just spinning your wheels. \r\n\r\nI hope you felt better writing it out. I know I'm glad you did--I would hate to imagine how today would feel if you had kept this in. \r\n\r\nI just want to echo what others have said: We support you and care about you. Keep writing, keep sharing, keep venting. We understand how much this all hurts.

Hussy

I so admire your honesty, Colleen, not to mention your perseverance. I do a fair amount of eye rolling myself and I've only been in the caregiving racket for two years. I can't even begin to imagine what it takes to be a caregiver for a career caree. I'm in no position to offer you any advice, but, like Sally, hope that knowing that we hear you, that we care about you, makes things even the tiniest bit more bearable.

Teresatalk

How brave of you to address your situation with such honesty. You have been through so much. No human can be expected to handle it better. You have done and are doing the best you can. All caregivers feel these emotions at some time or other. You have just had more than your share of opportunities to see them progress. Things have changed over the years, so my prayer for you is that they will change for the better soon. Prayers are with you, sister!

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