Today, as the remaining family members returned home from their visit I was overcome by powerful and heavy feelings of emotion. Sadness, loss, loneliness.
Loneliness was the biggest one. I don’t really consider myself a lonely person. However, I have found recently many emotions washing over me when family and friends come and go while I continue to provide the best care I can for Mom.
Don’t get me wrong. I am not complaining about being a caregiver. No. No. In fact, I am trying to give a voice to the many emotions, frustrations, challenges, hurts, exhaustion that come with caregiving. I am trying to enlighten the non-caregiver, and cheer on the caregivers. I am here to let my caregiving compadres know, you are not alone!
During the last month, Mom has been in & out of the hospital 3 time in the last 4 weeks. It’s a lot. It’s overwhelming, scary, and exhausting. And at this stage of the game I feel like there’s just a level of responsibility for Mom, which to some degree, very few can understand.
My brother came after the first hospital admission. He returned home a week later after Mom was discharged. My son, sister, and her family arrived a week later. Mom was discharged the Friday they arrived. That following Monday she was re-admitted again. My sister and her family were scheduled to fly out early Tuesday morning. Her family kept their flight and my sister stayed with me another week. Mom was released on Saturday. The cousins arrived on Friday, the day before Mom was discharged. With family here, it gave me the opportunity to rest on Sunday. The act of staying in bed past 6:30 am was heavenly. I am indebted to my sister for the time.
When Monday rolled around, the cousins and my sister both left and I had a profound feeling of loneliness. They were returning to their lives, and looking forward to it by the way, returning to their schedules, events, friends, work, activities, you name it. And I. I was returning to caregiving. The doctor’s appointments, medication, conversations about blood pressures & weights, worries about Mom’s appetite; which at this moment is almost non-existent. What “life” is that? I rarely find time to do stuff that is of benefit (that’s not really the right word) to me. It sounds so whinny on my part, despite my intention. I never actually left the caregiving; it’s just the fact family was here & there was some support. Support in which I found time breathe.
It’s so very reminiscent of my daughter’s childhood. In addition to being very young parents – our friends were either off to college, traveling, or working – and we were parenting. Parenting while in the throes of learning about Spina Bifida, hydrocephalus, shunts, signs & symptoms of shunt malfunctions, and clinics that contained 8-10 different specialist for our daughter. No one could understand. Not my parents, not my friends, no one we knew had an inkling of what our life was like.
Caring for a parent parallels caring for a child with special needs. You hope people can relate; but, see most don’t (despite trying). You get tired of sharing the ups and downs because it always sounds so sad, depressing, and negative. I try to keep things lighthearted. It’s beneficial to all of us. But trying to answer questions without all the medical jargon is disheartening so it’s much easier to either not share or instead say things are ok. I often just feel so alone.
Well, chin up my friend! You are not alone. And in return, neither am I. I understand – may be not all the components – but I can relate. I can relate to the exhaustion – physical & emotional. To the frustration when you are trying to help your caree out while they fight you. To the irritation of explaining to medical personnel what you are seeing or experiencing with your – fill in the blank (mom, dad, brother, child, grandparent, friend) as you try to get them help. To the overwhelm that comes with making really hard decisions & praying to God that they are the right ones.
The best – I mean, the absolute BEST, thing I ever did was sign up for a caregiver’s class. The BEST thing I got out of it is seeing and hearing just how many people – mostly women – are in the same boat. You can see it on their faces (obviously, it helps that we are in a class together so you kind of get the hint they’re providing care for someone). It’s like a cloak that is worn; there is such a heaviness to it.
They understand precisely what it means to make plans and why it is you have to back out a the last minute or better yet, why you don’t make plans at all. They are a quiet type. I believe mostly because we are too focused on the task at hand – providing the best care we can for our loved one, while respecting their wishes; ensuring they are not making decisions that would harm them; explaining why it is they can no longer do something they’ve done for decades; all while trying to keep the quality of life they (and we) desire.
If you don’t have a group, find one. I have some listed on my Caregiver Resources page. I am still a work in progress and always will be. I don’t have all the answers. I can listen. I can share my experiences, And, I have you. Those who read my blog. It’s validating knowing someone is reading and hearing my thoughts. And in turn, hopefully creating awareness.
If you are a caregiver, I’m hugging you. Holding your hand when it gets really icky. You are not alone. And, neither am I. ♥️