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May 26th, 2023 – Post #84
When your mom dies, you begin to notice little ways she filled everyday parts of your life.
At least that’s been my limited experience thus far.
Last night, I suddenly realized, “Nobody on the planet really knows where I am right now.”
I’d checked into a hotel to hide away for a few days, hoping to catch up on rest and work.
Yes, I’d told a few people what town I intended to be in, and the guy at the front desk asked my name when I arrived; but as far as somebody (who knows me) knowing my exact whereabouts, there wasn’t a person on the planet.
And that was very strange.
I’ve spent nearly forty-seven years having one lady keep track of me.
Whether I was living under her roof, taking a trip, living halfway across the country, or in another one altogether, my mom generally knew my whereabouts. I tried to tell her where I was, so she wouldn’t worry, knowing all the while, that it would give her some new thing to worry over.
Toward the end of her life, when dementia set in, there were times when she had a better idea of where I was than she did of her own location.
It’s really strange to not be reporting my plans to her – or having her worry that I’m going to be randomly killed, or stuck in bad weather, or run out of money, or not make dinner plans at least ten hours in advance.
There have been several times this week when I’ve instinctively thought, ‘Oh yeah, we should tell mom where we are now.’ Then I remember that she’s gone, and we don’t need to do that anymore.
It was strange to have two funerals for her and not be able to hear her commentary afterwards about how much she enjoyed seeing everyone, and saying that the food was good, and talking about what the weather was like. For us, family and social gatherings were always filled with my mom’s vivacity. There was a void in not having her there, especially in the aftermath, when we normally would have sat around and discussed who said what and where so and so was, etc…
To me, life after caregiving for someone on hospice is kind of like having chewed, and chewed, and chewed a piece of gum until my jaw about gives out; trying and failing to blow a bubble; finally gaining some skill; putting all my air into it; then having it slowly get so big that it blocks out my view of almost everything else; seeing and feeling my very substance being stretched far too thin; then suddenly having what I’ve put all my effort into burst and stick all in my hair and face.
Can anybody relate to that?
There is that feeling of glory – when, after so much effort, the bubble fully inflates; but then it suddenly pops, and nothing seems left, except the reality of trying to clean up the stale and sticky remnants, and having a face that’s too tired to chew anymore.
And people saying things along the lines of, ‘That was a great bubble, you should do that again,’ and offering new pieces of gum to start chewing, and me trying to figure out how to graciously decline, wanting nothing to do with gum – even a fresh, soft piece, with plenty of flavor; but then the scent gets ahold of me as it’s unwrapped, and I think, ‘Maybe…’
And so it goes with caregiving. Internally, I want nothing to do with it for a long time; but then feel my heartstrings pulled with every situation I hear about. There is no shortage of people needing help.
I know there are plenty of opportunities; but I’m hoping for a chance to recover first.
Like the gum that gets stretched too thin when a bubble is blown, a caregiver can get to the point where their whole life seems filled with waiting for somebody else’s final breath – trying to prepare for it and carefully prevent it’s coming, all at the same time.
For me, there’s a sense of guilt sometimes when people say, “I’m sorry about your mom,” because most of what I have felt since she died has been relief.
*Of course, “I’m sorry,” is the same thing I would say, too, to somebody in my shoes.
I am going to miss my mom terribly, and there have been moments when I already have; but ultimately something of a survival instinct kicks in towards the end, and a caregiver can begin to wonder who’s going to wind up dying first. Every time I’ve taken care of somebody on Hospice, I’ve reached at least one moment, if not more, when either empathy or exhaustion felt like it would kill me.
I’ve definitely felt deflated since we finished having my mom’s two funerals.
At this point, I know I need to take some time to clean up the aftermath. I’ve got paperwork to sort through, unpacking and decluttering that needs to be done, and an inflamed colon that has reminded me that rest needs to be right up there at the top of my docket in the coming days.
Feeling Like a Failure as a Caregiver
I think our society does a great job at acknowledging that caregivers need to be taken care of; but sometimes the well-meant mantra, “You need to take care of the caregiver” can actually feel like one more thing the caregiver is failing at.
I wonder how many other people taking care of someone who is sick feel a sense of guilt when their own health issues flare up. I have had ulcerative colitis since I was nineteen, along with several other symptoms. Around June of last year, I pretty much stopped bleeding for the first time in my adult life. This seemed like a miracle to me.
I was elated to feel like a normal person; but around the beginning of this year, my symptoms started to creep in again. Last night, the reality set in that ulcerative colitis is back, and I’d better make a concerted effort to keep it at bay. The best advice I’ve ever read on this auto-immune disease is from a book called, “Fasting Can Save Your Life”, by Herbert Shelton. I remember getting to the chapter on ulcerative colitis, feeling some hope, and then being crestfallen, because his counsel was to basically go to bed for a long time to get rest. That wasn’t what I wanted to hear.
A couple of verses of correction often come to my mind in seasons like this, from Isaiah 30: “Their strength is to sit still,” (part of verse seven) and, “For thus saith the Lord GOD, the Holy One of Israel; In returning and rest shall ye be saved; in quietness and in confidence shall be your strength: and ye would not. But ye said, No…” (v 15, 16a).
Those people wanted to pursue their plans, so God let them, knowing they would get themselves into a mess.
He was waiting for them to learn to wait.
And therefore will the LORD wait, that he may be gracious unto you, and therefore will he be exalted, that he may have mercy upon you: for the LORD is a God of judgement: blessed are all they that wait for him.” – Isaiah 30:18
Is it Lazy to Rest?
I know this is a question a lot of people struggle with. I’ve been in a physical battle these last few months, feeling like there is too much to do to take time to rest; but feeling too exhausted to accomplish anything of significance. I’d either be trying to sleep, with my mind running a hundred miles an hour up and down my To Do List, or trudging along, winding up with more undone messes whenever I tried to finish a task.
I’d hear my mom lamenting, thinking she was being lazy for being so tired, and I’d tell her she needed rest; but I wasn’t quite so gracious with myself.
When Hospice ends, and a loved one dies, all the neglected lists that have been murmuring for months can raise their ugly heads and demand attention at the same time. The feeling can be overwhelming.
My mom died Friday night, May 12th. I got to bed about 3:30 AM, just after the undertakers left our house. The next day we met at noon to start making funeral plans. There were people to contact, arrangements to be made, etc… There was little time for actual grief. Monday and Tuesday consisted of meal planning and turning the house back into a home instead of a hospital ward, along with the awkward task of going through the entire house to list what I wanted, since my dad has been wanting to get started downsizing – by dividing, donating, and selling the contents of the house. Wednesday was the first funeral. Thursday started with a 7:15 AM oil change that had been neglected, along with some unexpected maintenance. Then I packed and loaded as many of my possessions into the car as I could and moved to Indiana, looking forward to the six hour drive, as if that were some sort of respite from having to run around.
There was another round of funerals the following Wednesday. Somehow things fell into place, even if we pretty much forgot about getting pallbearers, and I was trying to remember where my shoes and the guestbook were about twenty minutes before the start of the visitation. Thankfully, the thumb drive for the slide show was with the guestbook, because that had totally slipped my mind as well.
Despite all that, the service and burial were beautiful and went beyond what I’d hoped for. I was so thankful for the way things worked out; but by the next day, exhaustion had definitely set in.
I Hope This Encourages Someone Recovering From Caregiving
I’m saying all of this, not for people to feel sorry for us, but to share my experience, in the hopes that it will help someone else realize their exhaustion is valid. So many times since my mom was diagnosed with cancer, it hasn’t been the medically minded websites that have helped me; but individuals sharing their stories in a candid and real way. I hope I can somehow make it okay for others to feel like they can be honest with their grief and difficulties by sharing what I’ve been going through.
In a society where so many people are instantaneously connected, it can be hard to keep up with everything. I can’t tell you how many of my mom’s friends have told me to stop sending Thank You notes. I have really appreciated that sentiment, because I’ve fallen so far behind, feeling caught in a cultural transition – before it was rude not to acknowledge someone’s kindness; but what now, in the shadow of social media, when more kindness is showered on you than you can possibly keep up with?
I’ve had to let go of returning calls and responding to texts, emails and comments. It feels impolite; but keeping up seems impossible. I’m wondering if there is some sort of current etiquette for our electronically connected world; but who would have time to read it?
Maybe if I blabbed less on my keyboard, I could do a better job; but ironically this actually seems more intimate to me at this point than a couple hundred personalized notes…
What Will This Website Be Now That My Mom is Gone?
I never actually set out to tell stories of my mom here, it just sort of happened. I’d decided to do a web page as a way to try and advertise some of my manuscripts that have pretty much just sat on my desktop for years, doing very little and hoped to publish others I’ve never done anything with.
I’m definitely not a technologically advanced person. I’ve been getting “F’s” on my site speed, so I know I have a lot to learn. In some ways, this failure has been a good thing for me. Perfectionism has often paralyzed me in the past; but feeling the need to keep people posted on my mom’s condition kept pushing me forward to write, even if the photos were fuzzy, and it took longer than it should for pages to load. I kept having to remind myself that it was okay not to have everything fixed at once.
I’m still saying that today – in a multitude of ways.
Thank you for your patience.
I realized in the process of writing, that maybe beyond caregiving for one person at a time, I could also somehow encourage others who are in the thick of looking after someone, or going through the aftermath of grief.
I would like to do that here, and I also want to share more memories of my mom.
Beyond that, I’ve had some other projects on the backburner. One being a cargo trailer I bought this Fall and have been attempting to turn into a tiny house, hoping that having something mobile would make having a routine while caregiving more realistic and also give me a quiet place to write. My main project over the past three and a half years has been a series of books, centering around my grandparent’s barn, which was once in Wabash, Indiana; but was moved to Colorado.
As time, courage, and energy permits, I’d like to add those manuscripts to this site.
At some point, I should probably figure out how to add a contact list, too – so I can let people know when I post something. That’s on my To Do List; but I’m trying to practice self-control and letting that go for now.
Anyway, I just wanted to let you know “Where I Am” with the process of adjusting to life without my mom, and what my plans for this website will be.
I did let somebody know what hotel I’m hiding out in – I know my mom would have wanted me to do that. I’m finally using some of my Hilton Honors points and am very thankful for five free nights. Maybe someday I can also share some of my travel hacking tips here, too. Being able to travel basically for free (at times) has helped a great deal in getting back and forth when somebody needs help with caregiving – and has come in handy when I need rest.
Alright, I’d better stop here and go get a nap. If not, I’m going to need a piece of gum to keep me awake.
Much love, Jody