As I’ve written about in previous blog posts, I have a chronically ill husband. It’s not a disease that will go away. It’s progressive and incurable at this point. It can be manageable, but it’s also unpredictable, and some days are good days and some days are bad days. Chronic illness affects families in many different ways. Patients and spouses go through many emotions at different times. An ongoing theme that I’ve noticed affects both my husband and I, and has a ripple effect on the people in our lives, is abandonment. We abandon and we feel abandoned. I can’t speak for my husband, but I can share what it’s like for me. I have always kept this stuff bottled up inside me for many reasons. I feel like I have to be strong and be able to handle everything. But I can’t. I don’t want people who leave me out, to know I feel abandoned because I don’t want them to feel bad. So, I feel bad instead. I feel guilty for having less than stellar emotions. I don’t know why. I’m human and entitled to be negative at times, and feel sadness, and feel upset with people. Mostly, I don’t want other people to worry about me, or have my hard times affect their happy lives. I know in my head that I shouldn’t feel this way, but since when does that matter? We feel what we feel. That is one of the reasons I write. It’s therapeutic for me, and I think it helps other people who are going through the same thing. Writing lets me get out my feelings without having to say them. It’s easier for me.
One of the hardest things that I have gone through over the past 6 ½ years, is the feeling of being abandoned. There are people who I have thought would be there for me who have not. I don’t think it’s necessarily intentional, but nothing hurts more than people you care about becoming scarce when you are left to hold together a family affected by illness. There have been many people who have stepped up and been great supports to us, and for that we will be forever grateful. But there are others who have not. My husband has told me that he feels left out of things, and he says it doesn’t bother him, but I think it does. I know it bothers the hell out of me when I feel left out. It happens frequently. We aren’t sure why. Maybe people think we can’t afford something, or he won’t be up to it, or maybe we just aren’t as fun because we can’t do everything everyone else does. We wish people would invite us to do things and leave it up to us to decide if we can or not. Sometimes we will be able to, and other times not. I need to get out and keep living my life and do fun things. He is still living and he should get out and do things, too.
Abandonment goes in both directions. I work, take care of a household, and I’m busy with three older children who have places to go and activities to do. I’m also looking for a better job. Thankfully, my husband is still at a point where he doesn’t need me to be a caretaker, but there are days he doesn’t feel well and I do take care of him. I spend a large part of my life doing for others, and there are those times when a crisis happens and suddenly there is a trip to the hospital. Out of necessity, I abandon those things that aren’t of vital importance. My house tends to be messy…who wants to spend a free day cleaning the stinkin house? I do whatever amount of laundry needs to be done in order to give us clean clothes for a couple of days. I’ve also abandoned certain dreams…buying a bigger, nicer house…spending my older years traveling with my husband…retiring, in general. There are those times, when I don’t feel like doing anything on the weekends, so I don’t seek people out to do things with. When you spend your weeks always doing, a day off to do nothing is a luxury. A day to myself, doing anything I want to do is almost unheard of. Because of this, I have done my share of abandoning some people. One of the people that I don’t spend nearly enough time with is my Mom. But she is the one person in my life who I know will NEVER abandon me, no matter what. It’s not fair to her. I am going to change that. The irony of all of this is that I feel abandoned, and the one person who has never abandoned me is the one I leave out. Sometimes, I just feel like I have nothing left to give. I’m tired. There are also times I feel like I’ve abandoned my husband, but again, sometimes I feel like I am depleted of whatever I have to give. I have also abandoned some of the people who have stopped bothering with us. That was hard to do, but necessary for my peace of mind. Sometimes, you just have to let people go.
All of these feelings lead to that old cycle of guilt and resentment. There are millions of people who are going through an illness with a family member. We have become a caretaking society…people take care of parents with Alzheimer’s, children with autism and other disabilities, cancer patients, chronically ill family members. It’s not an unusual thing to have someone in your life that needs to be taken care of. Someday, YOU may need to be taken care of. Or you may be taking care of someone. Take a moment to reach out to someone who is going through this. Please understand that a lot of times, the person may say no to an invitation. Keep asking anyway, because it makes a world of difference to know that someone thought of them and took the time to at least ask. It helps people to not feel abandoned and isolated, and that goes a long way.
Reblogged this on "Greatest Generation" Life Lessons and commented:
I’m glad you can express yourself by writing, Renee. It helps you but it may also help others. That’s the beauty of a blog. Keep it up.
Thank you, Judy!
In my work before I retired, I met many couples, in each case one of them was suffering from an incurable disease and the other was a carer. Of course, these were not roles that either would have ever chosen or expected. I found the carers to be the most admirable, long-suffering, loving, hard-working men and women. They had ghastly days and grim experiences, with long years of hard work. They too felt the abandonment you talk of. You are not alone, the professionals in your life are full of admiration for the work you do and so are your friends. They are also scared that they might fail if called on to do what you have to do. Hang in there, there are people who care and there are good days too. People like you are an example to the rest of humanity.
Thank you so much. I do hope some good will come out of my experiences.
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Wish I had the way with words as you do..You described my situation to the letter.
I’m sorry you are going through a similar situation. It’s a really hard thing to cope with on top of everything else. Hang in there, and know you aren’t alone!
It’s amazing how your words have affected me. You described my situation almost to a T. I shared this on my Facebook page, and encouraged my friends to read it. Many have, and said that it has opened their eyes to how I feel. Thank you so much.
You’re welcome, Mary. It’s sad that so many people don’t realize how incredibly hurtful it is to be left out when you are going through such a rough time. It’s when you need people the most that some of them disappear. Hopefully, that will make us better friends and family members to those around us who may go through this someday.
This blog is just brilliant. You capture exactly what me and my family are going through. My husband has been chronically ill for almost all of our 22 years together. Since late 2011 he has been battling a rare terminal cancer, yet this is for obvious reasons, the most significant mountain we have had to climb in our time together. We have an 8 year old son, who also has had his share of health issues. Twice I have had them in the hospital at the same time.
We have experienced great levels from abandonment from all relationships in our life, especially our family. We have no help and are treated like we don’t exist, and here’s the kicker…my husband’s brother and his family live right next door. They ignore us and treat my son as if he was a virus. And I’m considered emotional and they would just rather avoid me.
This journey takes all I have and then when I run out, I crash. Somehow I always get back up, but a piece of who I was before is left on the floor. I keep saying it is not in vane.
Thank you so much for speaking for us caregivers. I can’t wait to read more.
I’m really sorry you are going through this. I have always felt as if I’m the only one who feels the way I do. The emotions and feelings aren’t always “good” ones, and it’s hard to admit how you feel sometimes. I started the blog to express myself and I’ve found that it has helped me tremendously to find other people who are going through the same thing. I really appreciate you reading my post and for taking the time to leave me a comment.