Being a caregiver is more difficult than one can imagine until it becomes the focus of your life. For many, it entails a commit of years and no matter how hard you try you are unable to alter the outcome.
During my years as a caregiver for my father-in-law, Rodger. I cried a lot. Sometimes I got angry, often I was weighed down with guilt. Many times I turned to prayer. Did I receive instant answers or did a miracle occur? No. But there were occasions when help appeared when I needed it most. What it took me along time to discover is that it’s very important to be specific in what you pray for. Many people pray for strength when what they really need is assistance. Others may pray for patience when they really need an answer now.
Beth doesn’t realize she is already as string as she will ever need to be and asking for added strength will only add to her burden.
Caregivers and those in their care have been tipped over by the gusts of life. Many of our loved ones have fallen and broken bones, many more have had memories break away piece by piece creating razor sharp shards of anger and resentment in their place. They lash out at us in their confusion inadvertently causing us to begin to break as well.
Often those around us fail to see the damage these devastating diseases bring about. Too often others see it and choose to “walk around the pieces, lest they cut themselves upon the scatter.”
Today and every day it is my hope that you have someone in your life to glue you back together. If you are alone in this, know that I understand and I am here for you.
Feel free to reach out to me via the comments section on this blog or privately via email at bcarducci@comcast.net
Caregivers need help. Please join me in continuing the Dr. Phil Challenge and encourage him to use his resources and the Dr. Phil Foundation to create a grant to provide real help to caregivers who need it most. Go http://www.drphil.com and leave a comment on his website supporting my plea.
If I am able to help you understand anything by way of this blog or my book I hope it is this:
I AM NOT PERFECT AND THAT’S OKAY
We are human. We become angry sometimes. We feel resentful when others go off on vacation or simply out to dinner and we can’t. We get sick and tired of hearing the same question over and over. We need sleep and get cranky when we don’t get enough. Our heart breaks when the one we are trying so hard to help accuses us of mistreating them or stealing from them. Or worse yet, don’t remember who we are.
Some days we want to give in, give up, and let go so badly we nearly fall apart. And then we feel terrible. We doubt ourselves and become convinced we are bad people.
We are not. We are the caregivers. We are not perfect. We are human. We give all we have and then give some more. Y
You, like me, are not perfect but no one is. You are a caregiver and because of you the one in your care will have many more good days than he or should would have had otherwise.
But if it does, if someone is driving you crazy with advice on how to do this and telling you things you already know and have heard so often you want to scream. If a family member is more concerned about where the money for care is going than how much you are giving up to be there for the one who needs you. If your loved one is failing fast and your heart is broken, know that I understand and I am here for you.
Sometimes there is no peace for us. Only the next moment and worry about what it will bring. For those minutes, hours, days, years, I send you my prayers every night.
When I was a young mother I often wished I knew what my babies were thinking. I wanted to know what the world looked to them, how it felt to be so dependent. Were there moments when they felt alone and wondered how they had landed in this place so different from what they had come to know? When did they recognize me as someone who loved them and would protect them always?
Caring for Rodger I wished again for that same super power. I never received the ability to read minds but I never stopped trying to figure out how to keep him warm, comfortable, and safe. Some days the things I tried worked, some days they didn’t. There were days many days when my actions confused and frustrated him. But there were also many when he recognized me as someone who loved him and would protect him always. Love and care are the super powers we have and that dear caregiver is everything to them regardless of their age or needs. Be proud of who you are and what you do.
If you have a super power, or wish you did, tell us about it here.
If this is how you feel, it’s okay. Trying harder isn’t always the answer. There may come a day when you have done all you can and it’s time to make the decision to move the person in your care into a facility better equipped to cope with their growing needs.
Please know that if that time comes you are not giving up on them. You are still the most important person in his or her life. What you are doing is making sure this person continues to get the best care you can provide. You will be able to regain the strength to see this through. You will visit. You will continue to be their best advocate. You have not failed. You are a true hero.
Be kind to yourself this day and know you are not alone.
There were days when I felt more like the mean girl than the patient saint some believe caregivers to be. I didn’t want to do it any more. I got mad. I hollered back when he shouted at me. I regretted it the moment it happened but let’s be honest, this is what caregiving is like some days.
I have to admit I never looked that good when going through it. I more closely resembled the image below, right down to the scraggly plumage. But, I couldn’t resist posting this image. I love her attitude.
It is critical that we address the realities of caregiving and not sugar coat it.We have to do everything we can to support the over 65,000,000 caregivers in this country and the millions more who will become caregivers very soon.
November is National Caregivers Month.The President has issued a proclamation in support of caregivers. Caregiver conferences are being held across the country. It’s time to talk less and provide more help. Our legislators would do well to read caregiver support sites and hear from the caregivers themselves. Feel free to start by sending them a link to my blog.
We thought we knew what to expect. Having an elderly parent living with us would change our life, we knew that. We also knew that Rodger was quirky and had a number of health issues.
“It will be hard but we can do it.” Mike and I agreed. “He will improve in our care.” Boy oh boy were we mistaken.
As his primary caregiver I soon learned that I had a lot to learn and I had better learn it fast. I needed to understand his medications and their possible side effects and interactions. I had to recognize that often he reacted exactly opposite of the norm. If a medication came with a warning that it caused drowsiness he would be up all night. Add a medication to lower his blood pressure and it would soar. It was weird and frightening.
I had to learn that he was often secretive and hid his symptoms when ill or in pain. Over time his illnesses increased in number and severity. What the heck is sundowning and why was he so aggressive in the evening? What happens when mental illness and dementia combine? Would he harm himself? How could I convince the doctor he had Parkinson’s disease when he stopped shaking and sat up straight and told the man I worry too much and not to pay attention to me?
I had to learn how to convince medical personnel to listen to me, not him, when answering questions about his behavior or the newest setback in his ability to remember or reason. He forgot or he lied, it didn’t matter which. The fact is he tried hard to fool them and often succeeded.
“She’s crazy,” he would tell them. Often it was close to the truth.
I didn’t try the same thing over and over expecting a different result as we know is sign of insanity. I became as creative as I could be when problem solving. I was ever vigilant in watching for unexpected symptoms. Still,many times I was close to losing my mind in frustration. When no matter what I did and no matter how hard I tried he kept getting worse I had to learn I could not stop this process. I had to learn that by giving him more good days then he would have had otherwise was the best I could do and that was enough. That’s a test I could not have studied for. I had to live it. I had to learn that he was unique and while many aspects of caregivning are the same, every person is different.
Caregiving is a test we can’t study for. It’s by sharing our stories and our unique ways of problem solving that we learn and I am grateful for each and every one of you who shares a bit of your journey with the rest of us. I’d love to hear from you.
Caregivers, often do you hear those words from family members trying to justify avoiding your loved one. For refusing to help even long enough to give you a few hours or days of respite? They may feel that upon hearing those reasons we will understand that they would like to help but they simply can’t.
Unfortunately, what they are really saying is:
“It’s too hard and it doesn’t matter how it affects anyone else. It’s not about Mom or Dad. It’s not about our brother or sister. It’s about me and how I feel.”
Some common comments and my responses follow. As the Imperfect Caregiver I speak for you so you know you are not alone.
“Mom doesn’t know me anymore so why bother visiting? When I do come by all she does is repeat the same stories over and over. It’s boring and irritating. I can’t take it.
“I feel that way sometimes too. That’s why I need your help. Why can’t you understand that?”
“She was up all night for the past two weeks and you desperately need sleep? Take a nap during the day when she does. What’s your problem?”
“It’s not safe. If she wakes before I do she could leave the house and wander away or decide to cook something and forget it on the stove causing a fire. Could you nap under those conditions?”
“He’s combative and accuses you of stealing from him? What did you do to set him off? What do expect me to do about it?”
“I didn’t set him off. The disease did. I don’t expect you to fix it. I need you to understand what this terrible disease is doing to him.”
She seemed fine to me the last time I visited.”
“If that’s true and she is fine,why don’t you come more often? Why are you too busy to give me a break?
“My father would never use language like that! Why would you say such things about him? I think you’re the one who has a problem.”
“Yes, I have a problem. It’s trying to deal with all this and you too.Would you like me to tape record him for you?
“A nursing home? Never! I promised Mom we would never do that to her.”
“We also promised to take care of her. When did “we” become only me?”
“If things are so bad put her in a nursing home. What do you mean you need help to pay for it? What about her social security and Medicare?”
“The facilities that would take her for what little she receives are full with long waiting lists and you clearly haven’t seen what goes on in those places. Someone would have to be there every day to make sure she got the care she needs and we know who that would be.”
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Feel free to share some of the comments you hear from family members in the comment section below. It helps us all to know we are not alone.
The Imperfect Caregiver 
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