I am not one who handles change well. I am better than I used to be, but not much. Yesterday I was thrown from the couch with the early news of a text. I was being informed once again that one of the caregivers would not be here.
I try very hard to understand both sides. Al is not as important to everyone as he is to me. I don’t have a husband nor small children and others do. This can be…
I am not one who handles change well. I am better than I used to be, but not much. Yesterday I was thrown from the couch with the early news of a text. I was being informed once again that one of the caregivers would not be here.
I try very hard to understand both sides. Al is not as important to everyone as he is to me. I don’t have a husband nor small children and others do. This can be considered an easy job, meaning there is no lifting nor transfers from bed to chairs.
This job is very mentally draining and for me very emotional. The changes occur frequently. Sometimes Al’s MSA will change hour to hour. Staff that works in this house have to be or learn to be flexible or it will definitely become a burdensome task.
Also, I can remember when I was a caregiver for other patients, not family. We go, we do our job and then we go home to our own private life. I never gave it too much thought how much time is still left in the day for the primary caregivers.
Now that I am that primary caregiver, it is imperative for my mental and physical health that caregivers be here at all times unless bad snow storms hit. I am responsible 16 hours per day and when a caregiver doesn’t show, I am suddenly thrown into a 24 hour day.
I love my brother, but I need a break. This is why I hired two caregivers. It saddened me yesterday when I was forced to let one of the caregivers go. It just seemed every week there was a day called off.
My friend came here to be with me for emotional support, friendship but I found it disturbing that she was jumping in and doing caregiver work when one did not show up for work. I felt so bad for having to make this decision, but I have to sometimes put me above even Al.
Also yesterday it saddened me deeply to learn that my friend was going home. It is easy to be selfish and want her near me, but alas, she has her own life to live and I must let her live it.
Now I have one caregiver that splits her responsibilities between her job and here with Al. She is picking up some of the other caregiver’s hours, but I have learned today that I will still carry that sole responsibility of caring for Al each weekend and a couple of days a week.
There are no easy answers. I went for six months without any help and I so appreciate any help I can have for Al and me now. I pray daily that God will take Al home and I will gain the rest that I so desperately need.
I am drained, tired, exhausted, sad, frustrated and yet somehow I get through each day and night. Al will always remain the most important person in this home. I have to do what is best for him even if it means I suffer along the way. He is the one laying in the bed, not me.
The house is quiet. The caregiver is here. I look over at the recliner and I do not see my friend knitting the baby blanket. I don’t hear her sweet voice or see her beautiful smile. I don’t see her eating her popsicle. I miss her so much, but I have learned so much in the past seven years. The most important thing I have learned is life moves on whether we want it to or not.
Life has never nor will be a bowl of cherries. Laughter can not always be made to happen. But I still stride to look for the small things each day to help me carry through. I lean heavily on my friends here at WordPress, through numerous comments.
I lean maybe too much on the MSA groups through Facebook. Maybe I do lean on my caregiver and all of my internet friends, but if I don’t, what will happen to me? I do what I have to do, this is what I have learned through my adult life. God will carry me through, because someone out there in this world needs me.
I am sad right now, and I have no reason to be sad, right? I have set the scales on the table, and spread my feelings on them. I am trying to sort my feelings out and get my act together. I have been down and out for about four hours now, and I hate myself for being this way.
On one side of the scales, I have God, many friends here at WordPress, food on the table, roof over my head, bills are paid, health is not too bad, too heavy though, but I could change that and I ignore it.
On the other side of the scales, sits sadness, alone, lonely, mom and dad are in heaven, four hours a week to get out of this house, no job, don’t see my kids enough, but I could change all this, only by making choices.
It all started on Friday. I was feeling so many feelings. Upbeat, nervous, anxious, excited, kiddish. I had these feelings continue all day Friday and Saturday, and until early afternoon today on Saturday.
I had a phone call Friday. Someone from my past, years and years ago in school, was wanting to pay me a visit. I was flabbergasted, I was so excited, but the closer the time came, the more nervous I got until I had butterflies flying in my stomach big time.
The visit came, the talk was picked up like the last time I had seen this person, and before I knew it, the visit was over. Sadness kicked in out of south field, bringing me down to the bottom step of a high-rise.
I started questioning myself. Yep, I sure did. This visit was a reminder of one of my most happiest times of my life, and I wanted it back again. I wanted the desires of being special to someone once more. I wanted someone’s arms wrapped around me once again. I wanted to be held, comforted, I wanted to have the weight lifted from my shoulders of carrying my responsibilities by myself.
I know the words, I have them memorized. God will show you someone when the time is right. Trust God. I have been waiting for five years, and after today, I wondered why I am alone.
Someone mentioned earlier tonight, that they want to see my peacock feathers spread. To tell you the truth, I don’t know how to spread myself. I can spread money and make it last. I can spread myself to bring hope to others. I can spread my heart wide open to anyone needing loved or comfort, but I can’t spread my feathers, because I have no idea who or what it is that I am to spread.
When people ask me about who I am, my first response is a caregiver. I take care of ill people. This is where God has placed me. Other than that, I don’t know.
Right now, even though this sounds like a huge pity party, it is actually going to heal me to be where I was once before. I will go on. I will keep working with my brother. I will place desires of wanting someone to want to spend their life with me, and I will forget about today and the feelings that came to surface. No, not talking about sex, talking about being needed and wanted. To have someone look into my eyes, and see their love for me. Don’t get me wrong, nothing happened today, but wonderful talk, and visits to memory lane, but it brought to surface my hidden desires.
In reality the scales are out of balance, I can see. I have everything I need, just as God hath promised, but my desires and needs of the heart are still empty. Why can’t I just be satisfied with what I have.
Now hopefully, as I read this over and over, I will sit back and laugh at what a fool I was acting like. Loads of people live alone and love it. I just don’t happen to be one of those, but I will survive, right?
Looking out over the ocean, she stands there in awe, as a vast wave comes closer to her, knowing this wave could whisk her away and into the depths of the waters, never to be found again, swimming as a mermaid, running from all problems that were dealt with the prior day.
To have no one to answer to and no one to cause pain is the direction she dreams of following. Work calling her name too often, the telephone ringing too much, she dreams of a paradise of silence, where no one knows her name any longer.
A stranger passes by and with his head nods in her direction, raising a hand in a gesture that shows me he is friendly. What is his name, what does he want? Can it be true that he is just crossing over to the other side of her, not wanting anything, not knowing her reasons for standing at the water’s edge?
He walks by leaving her once again staring and wishing she herself was a wave in this huge body of water. Able to be swiftly taken to other areas unexplored and waiting to be called to, hearing her name being whispered to come with me and you shall never experience pain again.
Thoughts of the past flash before her eyes. Memories of laughter, tears, and joy and sadness wash over her like soft petals dropping from a rose flower. Shivers creep quickly over her entire skin that hides and covers the soul that is meant to carry such heavy loads.
Faces of the past come straight towards her, forcing her to remember past relationships where trusts were once formed but now broken in half. Friendships that were there from years long ago, now disappeared, only being thought of as if seeing a shooting star for the very first time. A smile comes over the face and then fades quickly away, as the truth of her life comes back into focus.
Now being forced to walk along the edges of areas unknown, relying on strangers to direct her path in life.Wanting to believe what is being said, but fears of non trust rise to the surface, once again pulling up the borders of her heart, keeping it protected from those who do not care. Those vultures in the sky that fly in circles ready to sweep down and take the life that you have breathed for so long. One bite from their mouth can send you flipping upside down and sending you into the orbits of space, never quite sure if you will return standing on your feet once again.
Life is hard and yet she knows that so many make it sound so easy. Trust, trust in something, in someone, this is the way you survive living, and each step you walk forward, you look backwards to see if you are still following, or have you lost your way and are nothing but a shadow in your own path.
Can she really think of herself at this point in her life? Can she pretend that it is she that is standing alone out here at the water’s edge, or should she acknowledge that pieces of her past and present are floating like bubbles on the water’s surface.
She walks away from the edge, kicking sand pebbles with her bare feet, feeling the warmth of its surface upon each step taken. The thoughts of the ocean calling her name remain with her, as she goes back into reality, trying once more to make her own mark in this world.
Who I am 