a carer… seen + witnessed
c a r e r : a person who has accepted responsibility for looking after a vulnerable neighbour or family member
When Brian was in his accident I dropped everything, left work, + drove straight to SF after packing a light travel bag. There was no question about it. I NEEDED to be there with him.
When he left rehab, I was right there to pick him up. His social worker said he would need someone with him for the next 2 weeks as he adjusted to being home. I took time off work + stayed in SF with him in his apartment.
The second time he was admitted to the hospital was when we got news that his disease would be progressing over weeks to months. I told him I wanted to get married. He said he thought that since he was 14. I moved him to Reno, we found a home together, + got married.
I have been reached out to inquiring if I had applied for pay for being a carer. Family or friends that are caregivers can apply and get paid for caretaking, however, this does not apply if you are a spouse.
I also work from home full-time (30-40 hours a week). It’s not “hard” work, but can be toxic at times. I find that it is not the best for my mental health. I try my best to take deep breaths. To take breaks. To cleanse + sage + not allow other peoples negative energy affect mine… but it’s hard.
My typical day starts with work. I work on EST time. I chose this because I wanted to work when Brian sleeps so I can support him more when he is awake. I am typically done with no no later than my 2pm pst. Brian will normally wake up a round 11/12ish.
Typically a carer with support with anything their person needs.
Cooking, cleaning, feeding, shopping for essentials (groceries, clothes, home supplies), changing, bathing, assisting with using the restroom, medications, bills, etc.
Currently, Brian needs support with pretty much all of the above. Since he stopped taking his medicine there has been a bit of a decline that I am noticing. He is having a hard time standing up on his own. He has not walked to the bathroom in over a month. When I do assist him to stand his knees remain bent + he is weary. I feel he does not feel stable or supported by his legs anymore. I can tell he is nervous to let me help him up. I try my best to tell him I got him. That I won’t let him fall. + if he does fall, it’ll just be right on to the bed. I see the grief in his face when it takes him 90 min to move from the bed to the wheel chair. I can see the sadness in his eyes from the loss of mobility. The loss of his independence. It whole heartedly breaks by heart….
Chucks + incontinance sheets have been my best friend + favorite purchase off of amazon lately. I do laundry almost every day. I never would have thought that this would be a purchase I needed, but it is my saving grace. I feel my time spent working in spas + doing body treatments have really supported my need with quick + safe sheet changes while he is still in the bed.
I recently blew my back out + it took an entire week to recover. That was HELL. It was so painful to crave rest for my back but needing to support Brian at the same time. I HAD to get up + down. I had to work through the pain. No one was able to take my place. Which is fine, I got threw it, but I think… what if it was worse. What if something happens to me… what would happen to B?
There are many challenges to being a caretaker. One of the biggest challenges for me has been the isolation + feeling alone. I have really missed the in person sense of village, sisterhood, + brotherhood. Most of the time it is.. just us. I had been craving the idea of being seen + witnessed.
This past weekend we had two lovely angels visit from California. One driving in from the south one coming from nor cal. I can honestly say that we haven’t been seen in this way… for a very long time. We spent hours together. These sisters sat in the bedroom with us, carried on conversations, cooked for us, cleaned. We cried. We laughed. We embraced. They saw us in our true rawness in its purest form.
I am so happy that they got to experience this with us. They will carry memories of this time + I hope they will remind me of these moments later on.
I can honestly say my cup has been filled up. I feel seen. I feel witnessed. I feel carried. I feel loved. WE feel all of these.
Yes, being a carer is the hardest thing I have ever done… but there is much beauty in it as well.
I see beauty in the way he looks at me. I am blessed with the intimate moments. We are within the most vulnerable times with each other. The trust. The grief. I get to witness his journey + he gets to see mine. We are both in such raw-ness. We are walking this journey together. We are figuring out this together. We work through what works + learn what doesn’t work.
I am happy we have an apartment + a roof over our heads. I am happy I am able to afford food for our bellies. I am grateful for a hospice nurse that pops in once a week or whenever we request. What most people don’t know is that is is pretty much just US 95% of the time.
The other day I asked Brian if he felt comfortable. He said yes. I asked if he felt clean. He said yes. I asked if he felt safe. He said yes. I asked if he felt loved… he said yes. I told him I felt the same.
