Below is a message I posted earlier this week. I started my week off in this way. I felt distraught and exhausted by 1 pm on Monday. I put out a plea to my social media friends – and also to let people know – I am not doing very well on the caregiving end. As I sit here typing this today, my right lower back and neck hurt, my left arm feels torn, and I am generally fighting the urge to go back to sleep.
Feedback from friends has been genuine and loving. I got some great suggestions that I will try in tiny increments. The interviews I set up through Medicaid and Home Health Aid Care were rejected by the nurses because Mom’s driver’s license is expired by three years. My aunt went to the DMV to get her a new ID – not as easy as we initially thought. Getting mom a picture ID is proving to be a half dozen hoops that has delayed everything.
Meantime, my aunt, is the other main caregiver who can’t do much now because her wrist seems to be permanently injured. And she has had a heart attack. So it’s up to me. On weekends, about three weekends a month, my elder sister helps. I have seen my little sister three times in nine months (and it might be better that way).
I am not writing this to complain. I am writing this to share what I am going through. If your parents are coming to the age where they need care – make sure their ID is up to date. If you cannot afford a nurse to come to your home or put them in a nursing home, get Medicaid set up early. Know that if they own the home, Medicaid will borrow against the value of the home.
My mother owns nothing.
This may creep into my posts every now and then. My own work has become very slow and I am trying to accept that. I have my moments of acceptance. I celebrate and cherish every time I get to create, find time for a flow state, exercise, walk, meditate. I’m grateful for my friends, most of whom are new in my life since I am new to New England. But oh! I am grateful. Last night I talked to a loving friend who called me and I almost didn’t pick up because I was so tired, so sad, so feeling like I did not care if I lived or died – and by the end of the conversation – we were both laughing in a good and grounded way.
So, this, with a few clarifying edits, is what I put out to the world the other day. I cannot tell you how grateful I am for the all the responses and suggestions and love and generosity I’ve received:
“Today, so far, I have moved my mother more than eight times in five hours – [or 32 times lifting her and placing her down (from the couch to her chair, from the chair to the toilet, from the toilet to the chair, from the chair to the couch). Each time I lift her, I ask her to tap her legs so she connects with her body. Sometimes the lift is smooth, sometimes she tips and I have to catch her – which often torques my neck or shoulder or lower back or arm or any combination of body parts. Always a little bit of a twist or tear. And when she is going to the toilet, that also means pulling her pants up or down, which sounds easy enough until you are dealing with someone who sways and tips and presses and pulls at you – and – you both almost weigh the same.]
[Eight moves. 32 times lifting and lowering. 16 times dressing and undressing.] That’s a little bit less than once every 45 minutes – and each time I move her around it’s ten to fifteen minutes of my time.
I try to connect and be loving whenever I am taking care of her – once I am depleted it is difficult – but still, I try.
Each day there is injury to my back or my arms. I just hurt my back. Again.
I haven’t made it through an hour-long meeting without interruption in weeks – but for when my sis came up to help on the weekend.
Usually at some point in my day I sink into despair. I’m there. I’m there early today. I have tools to pull myself out – when I pull myself up is usually when I share here. Small victories, small joys, gratitudes, etc., but today has been very hard, really freakin’ hard, everyday is hard, and I feel so tired.
The interviews I got for nurses, though I celebrated them, those interviews are spread out to the end of July. I don’t know if I am going to make it. In the meantime, I am more and more exhausted, paying the minimum on my bills because I am barely producing anything – it’s taking ages to finish one painting – so that means I’m going deeper and deeper into debt . . .
Blah blah blah – I know. This is what’s going on. I’m struggling. I try to be honest on this platform, and this is what is happening for me.
I asked the universe for a different perspective. I don’t know what else to do. I feel so very out of sorts and being under-productive is painful for me. Actually terrifying for me.
And I know I will look back at this time someday in the future and I will be astounded by all of this.
If you could send some good vibes my way I would love that. And Mom’s way. And Penny’s way. All the juju please.
i love my mom. i love my aunt. i love my life.
Thank you. Thank you. Thank you.
How can this be easy? Feel, but detach. Sometimes I can do it. Sometimes I just need some #help –
Peace and love everyone. Thank you.”
That is what is going on – daily. And since that post, though the responses have all been – and I do mean all – they have all been so kind and helpful and caring and it very much has me feeling like I am doing something right in the way I connect with people – I am going to step back from social media. It’s so strange that
– oh – I just got a text: Can you take her to the bathroom? 1:40 pm
Hold that thought . . . I will return. The time is 1:42 pm EST
1:57 pm EST: I’m back. Mom was in good shape, not to much wobbling, She managed to put her shoes on herself. The wrong feet, but she was trying to be helpful. I love her. My aunt is reeling – SCOTUS just overturned concealed weapons laws in New York. Of course, we are waiting for Roe v Wade to be overturned, too. Every time I walk through the door, it’s another layer of insane news. Oh, my heart.
Back to social media.
I’m feeling like I need a break – not just for a week or two, but for months. When I get a chance, I will still post my Aham Prema meditations, but otherwise, I’ve got to have a break. I feel like Social Media world in the end has made me more stupid, has made it harder for me to complete a thought, it’s more difficult to pay attention, and it’s a way to be distracted. I don’t have the bandwidth for more distraction. And I want my mind back.
I feel like it’s important to pay attention to what is happening right now. Slow down and pay attention to Mom as her days wind down. It’s the tiniest moments when I look into her eyes that are magical. I see her love, her mischief, her wonder.
As so much of my time is pulled from me daily, why would I give more of it away? I want to experience friends and collaborators, my music and art, yoga and my own body deeply, viscerally, intensely – not distractedly, dissociated, or half-assed.
I don’t have any more to give.
Oh! And, God! I would love to read a good goddamned story. Sink into some fiction, take a good bite and savor it. That feels fucking delicious.
So there! That’s the happening.
June 23rd, 2022
Image: My mom in the living room sitting in her chair.
2 thoughts on “I didn’t realize I was holding my breath”
oh! thank you Sarah – ❤ this virtual doorstep hug message is quite nice. thank you.
Virtual hugs to you. I see you. I have moved closer to home to be near my parents. While still far from the needing full time care 🤞🏻there are challenges and changes that are hard. If I was closer, I would show up on your doorstep with something refreshing and witness whatever stream of consciousness you needed to release. Peace
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