Caregiver Stress – It can blindside you when your main focus is on the person you are caring for. I had come to such a low point psychologically in dealing with mother’s myriad problems and “The System” that my health began to decline due to the heavy burden of dealing 24/7 with someone else’s personality. My doctor doubled my low-dose medications – “to prevent a stroke or heart attack,” she said. I was aware of dark changes in my own personality due to my having to be the Warrior Daughter, protector of the one who used to protect me. I realized I was in bad shape but I didn’t know how bad until I decided to write out my feelings, since I had no one to talk to. I sat down at my computer and I spilled my guts. The only way I could control my emotions was to express my comments as a prayer to Almighty God, because when you have no one to tell your troubles to, you can always pray, right?
TODAY MY MOTHER DIED…AND I AM NOT SORRY.
It is said, God, that You don’t give people more trouble than they can bear, but I think that is a lie. You gave my mother’s care to me during the prime of my life and she slowly sucked the life’s blood out of my soul, one day at a time, for 20 years. That’s how we are supposed to live according to the Bible, isn’t it? One day at a time? Well, that’s too long. I learned to count my pleasures in seconds, to take a deep breath because there was only time for one breath, to graze through the day because I had no time to sit down and eat a proper meal. I didn’t always remember when or if I had showered or brushed my teeth or taken my medications. Eventually, when I had some time, I didn’t know what to do with it because if I was not physically in her presence, she was ever-present in my mind.
Her whistle, that shrill sports whistle, which she blew so feebly (“I just don’t have enough breath to make a loud sound,” she said) was a constant in my life, the sound not too dissimilar from the cell phone beeping that I had a message, or the microwave beeping that my tea water was done. Those were sounds I could ignore. But how do you ignore your mother? Just what the world needs – sounds with obligations attached.
“I love you, darling,” she would say as I tucked her into bed at night.
“Yes, mother, I love you, too,” I would answer, not meaning a word of it. But to lie about Love! How awful is that?!
How I longed to say “Why can’t you just die and let me live the remaining years of my life without you in it?!” Mother was very goal-oriented. She would have done it. She often told me that if there was anything she could do for us, just ask and she would do it.
We don’t need your money, I would say. Truth was, she needed our money because she had none. A couple of years in the best privately owned-assisted living facility in our town saw to that. And all those bills associated with rehab and then long-term care – the last month’s bill was for $6000! – that ate into our retirement fund. No, none of this was paid for by Medicare. Every month the costs escalated, often without telling us why. Mother wasn’t rich but she got in because we had the money. (Note the past tense, God. HAD the money.)
Family is supposed to matter. But I don’t consider her my family now, just my obligation. I don’t love her, but I have a duty to her because of a blood tie that I cannot undo.
I have prayed to be released from this duty, God. Actually, I have prayed for her death to release me from this duty, but You don’t seem too big on giving people what they pray for. She’s still here. She’s still alive. And she is thriving under my care.
NO, I am not proud of that. I did not do it out of love for her, or You, or for any reason other than I am tasked with her care. And I have to do it until one of us dies.
And therein lies my problem.
I haven’t had any time to travel, no time to dream or read, uninterrupted. No time to cultivate friends who come over just to talk. No long phone conversations with whomever I want. No time to watch TV without her comments. (“Stress Fat – have you ever heard of such a thing? Your fat surely isn’t from stress. You need to get out more, go to an exercise class. Did you know that belly fat indicates heart trouble? And high blood pressure? And high cholesterol And cancer? And all that runs in our family, so you need to go to a doctor and get yourself tested and get on medication. I could call and make you an appointment, if that would help…)
Thank you, but NO, mother. (The only thing that would help is if you would just drop dead – literally.)
WHY DON’T YOU DIE?!!!
You have affected my husband’s health. In retirement, he tried to shield me from your insidiousness, and for a time he succeeded. But his worry about me, our declining finances and our increasing arguments because I couldn’t go or do things with him because of your care eventually got to him. And I blame you. And I hate you for that and for so many other things. In fact, I cannot find anything that I love you for. I don’t even like you.
Your care is progressive and unrelenting. You drip. You leak. You stink. You suck food off your dentures. You either have diarrhea or constipation and either way I have to clean up after you. I use more rubber gloves than an S&M convention. I have to kneel before you to put on your bedroom shoes, which hurts both my back and my pride. I do not like the symbolism of bowing before you, but you do. You are, after all a LEO, King of the Jungle!
My stomach is in knots. I am bleeding rectally. I have headaches. I have nightmares. I have cut myself off from all contact with people. All I think about or dream about or plan about or look forward to is your death. If I didn’t take anti-depressants, I would die first.
Mother, I have spent 20 years trying to spare you pain and suffering. But now, I just want you gone. I know you will go to Heaven. You have been president of your Sunday School Class for over 50 years and you have been connected with every good cause there is either through donating your time or money. You pray many times a day. I have to read your daily devotions to you because you can no longer read them yourself. You definitely are a good person, and I am sure God will welcome you into Heaven, won’t You, God?
I have heard that when people are dying, their mothers come and show them the way to God’s presence. So that is why I am choosing to go to Hell. I don’t want to spend Eternity with my mother even if You are there, God. Why don’t you just send the ones we loved to greet the incoming? Then my husband and I could be together, probably along with our dog Jack, if dogs do go to Heaven…
And so, God – Thank You for listening, and please forgive me, for I have sinned. I do love You. I just couldn’t pull this off – loving her, I mean. And I am so, so sorry…
Today, my mother died, and I am glad…
When I read this, I was horrified! This wasn’t ME! This was some evil, negative, deranged person whom I did not recognize and did not want to become.
Thankfully, my mother never knew the depth of these feelings against her. I buried my feelings as best I could and continued to provide the best care I could for her. During the last two years of her life, mother’s situation continued to deteriorate. Her condition was such that she really needed access to skilled nursing care for some of her more serious ailments. The last year she was in our house, we had to take her to the emergency room 9 times in that 12-month period. Most of the things that prompted the ER visits could have been handled by a trained nurse. At one point she suggested that it might be time for her to consider moving to a nursing facility, and she told us that she had found such a place through her hairdresser.
One of the last times she was in the ER, they had to keep her in the hospital. The Social Workers there looked into the nursing facility and found out that they were full. (The only way to get in was directly from the hospital.) A month later she was back in the hospital, and this time there was an opening and she was allowed to enter the nursing facility that she had picked out.
For the first few weeks, I was at the facility every day and sometimes twice a day. Finally the nurses told me that in order for mother to “bond” with the staff, I really should stay at home more often than coming out there.
So I stopped going every day to the Medicaid funded facility that she chose to spend her last days in. Of the 5 facilities she had been in for rehab during her last 6 years, it was the best one – but it still had room for improvement. I continued to go to see mother several times a week (never at the same time) – and I continued my downward spiral.
Some people suggested therapy, but that was not an option for me. I know it works for many people, but I did not think it was right for me. Friends and family members can be a great resource. Just talking to someone who already knows you – like you used to be – and who had faith that you could be yourself again, was helpful for many people I knew. But I had cut myself off from all friends, many family members, and other contacts at work. In fact, I was working from home in order to be available to mother.
The ME that I had become had shut down every feeling and every thought so that I could focus with laser sharpness on the crisis at hand. When mother died, that should have relieved my vigilance, but it left me just as vigilant without a crisis to focus on. I couldn’t relax, or sleep, or work, or do housework. I just WAS… The one thing I had in my favor – other than a wonderfully supportive husband – was that I had a writer’s mindset, seeing every day as a new day “on the set”, observing myself and the people around me as I “play-acted” my way through the days. Reality became negotiable.
Who did I want to be? Oddly enough, I didn’t want to end my life; I wanted to CHANGE it. I didn’t want to go back to any period of my life. I wanted to go forward. So I took myself on as a client and asked the telling question: What do you want to do for the rest of your life? I had already found out that my life made no sense at all except as a writer, where all my disparate experiences and jobs and associates finally had meaning within the covers of a book. So I began to construct a new life for the ME I wanted to be, until I began to feel again, to think again, to plan again, and yes, – to write again.
The things I missed most during my self-imposed years of exile were things of beauty- the arts (music, dance, plays, painting), the seasons (celebrations), and the ability to find and express the simple Joy of Being Alive. I knew I had to construct a life for myself that let me share what Life had given me with other people. I am just now beginning to interact with other people without “assuming the position” of challenger or defender. It is still very difficult for me to relax in the presence of others. But writing out my feelings still helps.
I wrote a book in 2011 and self-published it, and that was the springboard for this blog. I have 10 more books which I have been doing the research on for years. As I finish the research for one book I put it in a bag, and it sits – along with the other ready-to-write books – in a row of overflowing bags facing my desk. An Agreeable Man is the second book in my new life, and I can hardly wait to see how it turns out!