What does the non-caregiving part of caregiving look like?

I get overwhelmed a lot. Sometimes I think I'm being silly. Other times I have documentable evidence of how a day can go in terms of Doing All The Things. This has been one of those days. 

It's 130p. This is what I've done so far today, starting at 8: 

Work: Paola - caseworker call: coordination of work meeting at 5 today

Eric - Txt: hello!

Tanya - txt: care of cats

Laura - txt: backyard maintenance discussion, checking in

Sandy - txt: planning to visit mom, picking up items

Sandy visit

Kathy visit

Work: Trevor - txt: caseworker coordination of meeting at noon today

Work: Zoom meeting (5 people). Created plan, sent plan to participants

Work: printed/responded to teammate's email

Work: documentation of 12p meeting

Work: responded to caseworker email regarding different case

Work: Kate: caseworker calling to update on family situation, different case

Rick - call: checking in (mom accidentally called him) (was on the phone with mom; sent email reply)

John - email: planning in-person meeting this month. emailed updating on current status of things.

Mom - call: discuss therapy, care, future plans, etc. working with tech to make it easier for her to call / answer her cell phone directly

Nurse - call: attempting to talk to mom

Nurse - call: returning call

Lisa: home health boss, asking about July's schedule. Future plans? Is she coming home? is he going somewhere? [I HAVE NO IDEA]

Ezra - talk, txt: going to dentist, need a check, plans for today and tomorrow

Ezra: at the dentist. plans there changed. Payment arrangements. 

Newish aide - talk, advise on meds, food, supplies

Norma: txt: how are you? (in hospital)

Abby - pastoral care call and txt 

Amy - txt: do I need more boxes? 

phone tree - call: trying to get a refill for dad's medication (his neurologist left, practice closed and the pharmacy closed and his script is running out)

UPMC person - call to figure out above

UMPC person 2 - left message to hopefully get something done in THREE DAYS? and to check back with (new) pharmacy to get a refill/new script? Will need to follow up on that 

Dad: random questions about things I don't even have time to brain and sometimes the questions themselves don't make sense but he's trying to make conversation so I try to be patient

I have a rash. 

I haven't eaten yet. I'm still in my jammies.

It's really humid. I need a shower.

I haven't been home in 5 days. 

Graduation is Friday. It may rain. 

That is all. 

(also, that's not all - both my parents' cars are in shops for repairs ($$), Ezra is driving a loaner car around in the meantime. The contractor will be back Friday to finish up some things around here that need to be repaired (we need 2 new fan/lights in the bedroom, new switches around the house), and there's always something else to add to that list (the kitchen drains are acting up), as well as some things at my own home that need to be addressed. I still need to get back to the ortho (appointment had to be rescheduled) to confirm that I don't need to be wearing the boot for my broken ankle. I should do PT for my ankle. That's not going to happen any time soon. Still stiff, still hurts. Yesterday the cable was out, and it took many phone calls (AI and phone trees, yay) and time and such to figure out that it's just that a breaker was off from when the contractor was here working on some electrical things). Mom wants me to call dad's doctor to have him authorize PT and OT come in again to be sure he doesn't "lose" what he has in terms of mobility and such. I've never gotten the chance to clean up my porch following my house being repointed, so the furniture is still covered in red dust. I haven't spoken to a case manager at the hospital to find out what they're thinking in terms of rehab continuing past June 20th, if that would be there or elsewhere, etc. The house here is still filled to the brim with Stuff and Things. I haven't gotten the mail here in a week, so I need to check that to see if there are any bills/whatever that needs to be taken care of. Same for my house, obviously. No idea what mail awaits me there. Mom wants toothpaste tube squeezy caps and a roller thing for the tube. Dad had trouble eating his cake-and-cream whatever cup of dessert. He's out of olive-and-cream cheese spread. 

That's not all, but it's all I'm bothering to type out right now. I think I'll have some cheeseballs.

How’s Your Mom? How’s Your Dad?

Just checking in, really. 

Things are pretty much status quo at the moment. 

On the home front, I continue to clean and clear things, little bits at a time. I don’t mind it, really … there’s just SO MUCH. Bank statements from 2010. Things tucked and stashed and stored in every available space. It’s just a lot. Not much cleaning I’m doing is urgent, but it needs to be done eventually, and right now I’m just chipping away at things with an eye on making more usable space.

Dad: same-same. He spends his entire day in his recliner. To be honest, he doesn’t really mind that (as far as I can tell). If the weather would cooperate, we’d go out and sit on the back deck … but he leans toward cold always, so that can be unpleasant and not worth the effort. A warmer June would be awesome. 

His aides are freaking amazing. Going from 2x day 9-1 and 5-9 to 24-hour coverage has meant shuffling around for the boss, extra shifts for the helpers, and trying to coordinate his care to fill in for what mom was responsible for during the times no one else was here. They keep good notes, they all have great attitudes, and they’ve come to know my parents personally, which I appreciate very much. It’s something that comes over time, and while it’s possible to have at a “facility,” this is a different relationship. It’s special. And that’s not lost on me. 

Mom: tired. Therapy daily (one day off a week). She’s able to do some surprising things - move her legs and feet (she can’t feel it but she can brain and do it), pull toward herself with her arms (cannot push well/at all), drive her motorized chair with her “good” hand (which doesn’t grasp, but does obey commands). The big one - as people know in dealing with quality of life, is “bowel and bladder”. These are not independently handled. So … that’s a thing. 

One of the therapists called last week and said her Discharge Date (dun dun DUN) is slated for June 20. Obviously that’s subject to change, depending on her progress, but perhaps they don’t foresee any more progress after that point? Maybe it’s a hard line for insurance? Anyway … The therapist pointed out that at her current level, she will need 24-hr care. 

So.

There it is. 

Will she improve between now and the 20th? Likely to some degree, albeit a mystery. 

Will she be discharged to a quality facility who will work with her and she will continue to make strides? Possibly? Perhaps? Hopefully? 

Will she ever return home? 

No one knows. 

If you’re reading this and have gone through similar situations (as SO many have), you know that this means Big Decisions Time. 

Is it time for both of them to go somewhere? If she’s able to return home, that doesn’t mean she can go back to things the way they were before … meaning she’s not backup for the caregivers. Does she come home and HE leaves? 

Thankfully, finances aren’t particularly a deciding factor. 

Then again, that might make things easier. 

How are we? In a pickle, really. And so it goes. 

Hope is a Beautiful Thing

Yesterday’s visit went very well.

I had every reason to dread it. It makes sense.

But I shouldn’t have. 

Mom is in good spirits. She is able to maneuver a motorized chair with her semi-good hand. She can’t feed herself, but the staff there is marvelous (of course) and are taking excellent care of her. 

She was very thankful for the lotion, jolly ranchers and chapstick … staples of her daily life! Some comfort from home. Also a stuffed sheep and some blankets and a YipYip I scored from a local artisan.

She’s uncomfortable/has some pain; her left arm hurts (we think she may have fallen on it), she has to wear the Cone of Shame (they take it off for meals - bonus!). 

Her mind is as sharp as ever. She was all about telling me where the backup supplies are in the house, and reminding me about what items were in the fridge downstairs that should be used up. 🙂 

Mose important: she has a great attitude about rehab. She said repeatedly that she is willing to do whatever they tell her to do. A fellow patient, who also fell, arrived at Mercy immobile. He’s now walking. It was a poignant retelling. He said, “I don’t know what your faith is - I’m a Catholic and my wife is Presbyterian.” Mom said, “I’m Presbyterian.” He said, “well trust in God and these folks.” 

She has a lovely view of the South Side, the river, the trains. 

We (of course) still don’t know what the future holds, but I was so encouraged by the visit. I’m glad I went. 

Control, Distraction, and Guilt

I am the coordinator of chaos.

I am the doer, updater, list maker, cleaner, problem-solver, thinker. 

It affords me the opportunity to avoid the most painful role: daughter. 

The truth is, I’ve been very busy, attending to things at my parents’ home, making sure my dad is cared for and spending most of my time here decluttering, organizing, cleaning, updating everyone on mom’s condition and dad’s needs. I’ve sorted most of the papers (bills! receipts! recipes! pay stubs! greeting cards! 2010 church committee meeting minutes! owner’s manuals! planners! medical documents! tax records! Oh my!), removed 10+ boxes of books for the library sale, decluttered cabinets and drawers, ordered supplies for dad and the home, stocked the kitchen, cleaned up the laundry room, the bathroom, the dining room, my bedroom … producing countless donation boxes and bags of trash. I’ve hired a contractor to make repairs around the house. 

I’ve been to see mom once. 

I have excuses aplenty - there is so much to be done here; I want to clear the space for both of them, and the caregivers - if mom is returning, she needs to have more access to things than the clutter allows. Pathways need to be more clear for the caregivers to see after dad. If neither of them can stay here for medical reasons, all of this will need to be done anyway. 

And yet: I haven’t sat down to chat with my dad. 

I haven’t been in to see mom since before Audrey left for Colombia and she went along. 

The truth is, I dread it. 

I could blame PTSD with hospitals and vigils therein. I’ve done all this - camping out in a hospital room / waiting room, doing what I can to make the patient comfortable, watching as therapy does its excruciatingly slow work. I could point out that in addition to caring for both parents, I have a son graduating in 2 weeks, and his needs to consider. I could blame my job for keeping me busy during business hours. 

Ah, but the truth is: I dread it. 

I dread seeing my mother in her current state. I’m avoiding the conversations and sadness about how things are at the moment. How we have no idea what she’ll regain, and how her life will look going forward. How I’m so incredibly sad about all of it. How we balance hope with reality. She’s not a complainer. But I KNOW how hard this is going to be, and none of us can predict the outcome. 

I dread it. 

Here, I can busy myself with things that “need” to be done. I can preoccupy myself with administrative duties and zone out with YouTube. 

And feel guilty all the while. 

I love my parents so very much. It’s so incredibly hard to see them both in their current situations. Every time I have a happy thought about the past and their healthy selves, I shudder and bring myself back to the present. 

Because it hurts. 

And I’m tired. 

Tomorrow I’ve resolved to go see mom. I don’t want to.  

The way things are …

 It’s been quite a few days since that dismal update. My apologies. 

How are things? 

I came to dad’s to stay the weekend. He had been having “off” days - lack of interest in eating, Just generally being “down”. The caregivers were concerned. 

Over the weekend, his spirits were improved, he has been eating and transferring well, and all goes relatively smoothly on that front. A blessing. 

Eric and I spent the day Saturday doing some cleaning. When I say cleaning, I really mean decluttering. I’m trying to clear things out so there is more space and things are more easily done on all fronts. So it was all day going through baskets and bins of things … tedious, but in the long run will help a great deal. Anyway, it took all day to get the dining room mostly cleared out.

Unfortunately, Saturday night I came down with the flu.

Sunday I spent feverish and holed up in a bedroom, terrified of spreading cooties. Two of the caregivers already have/had this. Obviously spreading of it would cause a helper shortage, and God forbid DAD gets it. And so I hide.

Today I am feeling much better - still a fever, but I’m hopeful to be out of bed today and move toward “normalcy”.

How is mom?

In short, she’s about the same, in most respects. She’s still in the ICU while they stabilize her BP, but they feel they are getting closer to having that controlled and sending her to a “regular” room.

I spoke with her this morning. She still has pain all over - neck, arms, shoulders, back. Then again, that’s sensation, right? So that’s a bummer but not a bad thing and not unexpected. 

The buried lead: SHE FELT THE PRESSURE OF THEM TOUCHING HER FOOT. She’s been able to make her legs move, albeit slightly. But having sensation is NEW and I find it encouraging, even if it doesn’t mean regaining use. Her upper body is weak and pained, and remembering she is still in a neck brace, she is very limited. She cannot grasp with her hands, although she can move her arms.

So that’s about where we are. The next few weeks will see her moved to a new room and possibly then transferred to rehab. It will see Ezra graduate high school! and take a trip to Belize. Audrey returning from Colombia. It will have me hopping locations from Hookstown to Beaver to Pittsburgh. It will mean being an emotional support to … well, all the people. 

There are so many bright spots and blessings throughout this hardship. 

The aides who come to dad’s place, caring for him so well and maintaining the home as best they can by “winging it” to cover what mom always took care of. 

The ICU nursing staff, who are taking good care of mom. She has no complaints. 

My boyfriend, who has bravely entered into Support Staff role for his “new-ish” “adopted” family.

My son, who is the most empathetic, steadfast, helpful, mature young man. He’s made countless trips and done so much work here for them and for me … we could NOT have done this without him. 

Lastly - all of you. Asking how you can help, checking in, helping me cover things and take care of tasks to get a little off my mother-of-all plates. If you’ve messaged and I haven’t responded, know that I have seen it and appreciate it and when I get the chance hope to personally respond to everyone. 

What can you do at the moment? 

Pray for mom’s recovery, however that looks. 

Visit them both; mom is fine with visitors, and when she’s moved to a regular room she’ll have her phone and will be happy to take calls. I won’t be able to see her daily, even when she’s moved to rehab, given dad’s situation and having my own home and things to attend to … so any contact from people she knows will be very much appreciated by both of us. 

Every now and then I may put a call out for help with something … I guess just stay tuned. I don’t know what the future holds (isn’t that an understatement?!) but having gone through “things” before, I know that “stuff” comes up. That’s about all I can predict. 

Much love to you all.

No, Really. No Sugar

That's the name of this blog, right? and for a good reason, right? 

I'm sitting here, Thursday night, a few glasses of wine into the evening. 

Yep, you read that right - the very demon that has a hand in all this mess is prompting me to write:  unabashed, unvarnished truth:

This sucks. All of it sucks. 

Dad has Parkinson's. It causes all kinds of problems. Those problems have plagued my parents for years. Sometimes he's fine. Sometimes, he's terrible. The day-to-day never changes, and yet the edge remains: will he pass out and need the smelling salts, smacking, cold washcloths, more meds, time ... to get him up off the bedpan and into his "brief" and into the recliner where he spends his life? 

Will the aide be able to manipulate him into the wheelchair/recliner without incident? or will his body betray him and cause chaos? 

Will he be cogent, when awake, and speak freely and friendly-ly about all things past and present? or will he think there's a chapel at the end of the house, an iron-wrought train track into the fairgrounds with a projection of our living room, or an extra apartment beside the house, where other people live? Will he obsess about the donuts that are downstairs that he retrieved on his way from work (he hasn't left the house in 5 years), or will he talk to whomever listens about photography, work experiences, college life, etc.? Will she be aloof, trying to just "be" in her current circumstance, or will she be angry, frustrated and resentful? Will the Food Network distract and ease her inner pain, or will it amplify the tediousness that is her life? Will she text her daughter with the truth about how she's feeling, or will she Sheraw it up and say things are "fine"? 

I haven't been to the hospital in a few days. I haven't been to the house since "The Incident". I've been doing things here, sure, and seeing my daughter off on a grand adventure, but should I have been in those other places instead? I spent quite a few weeks away from my kids while their dad withered in the hospital ... they're older now, with more understanding ... what is my role, as the only child of ailing parents and the only parent to two young adults? 

He's sad, he's depressed, he blames himself. For her injury? for her despair? for his own illness? All understandable. 

I don't want to face the inevitable. The thing I've been saying for years: if something happens to her (as it does, often, with caregivers), I'll be in an impossible position of caring for them both, in different arenas.

And yet here we are. The foreseen has come to pass. 

Today Ian's mom (whom I will always refer to as my mother-in-law, btw) and her husband spent the afternoon with him where a shift of aide workers could not be filled. He's not been eating today -- depressed? frustrated with his shakiness when attempting to eat? who knows -- but they have been a positive influence to his day. Yet upon the daily attending to his biological needs, my son was needed to hoist him from his chair. 

It's becoming untenable. 

I know this. 

When do I send him away to a "senior storage facility" (his words)? How long do I allow him to stay in the home he built, with my mother, while waiting for her (possible) return? What do the next months hold? How do I encourage her rehabilitation and improvement while dealing with his decline and immobility? 

I have no answers. It's all questions. It's all jumbled. It's all so hard. And that is all I have. 

Monday Morning Update

It's been a busy weekend of coordinating. 

Dad's 24-hour coverage at home has been organized, with only a few gaps. 

I have a good understanding, I believe, of all bills and such. 

I'm working on getting in touch with doctors, etc. 

The buried lead: Mom's okay. 

Define okay? I got to see her. She was miles better in appearance and spirits than when I left her in the ER early Saturday morning. Her pain is being managed. The ICU staff is excellent and careful and attending to her every need. 

She was able to FaceTime with dad. 

What else? The burning questions - what are her physical limitations? what might she regain? How does the future look? 

I know better than to allow us to get ahead of ourselves, so here's what we DO know, at this very moment: 

Her breathing tube was removed and she's breathing fine on her own. She does have some added oxygen (nose tubes, yay!), but all of that is stable. She is not sedated.

They are keeping her blood pressure HIGH, to increase blood flow to the spine, so that's being carefully monitored in the ICU. 

On Sunday morning, the PT crew came in, and according to mom, she was able to either push or kick against their hands with her leg. I was shocked to hear this. She said she can't FEEL her legs, but she was able to move one? Astounding. 

While I was there to visit, her legs moved, unbeknownst to her. I brought it to her attention, and asked her to move one of them on purpose - and there WAS movement.

She's able to move her arms freely. Her hands are very swollen, from just general nerves/injury and/or medications/fluids onboard. It is unclear her ability to grasp or feel with her hands at this point, but I didn't press to determine any of that, given their current state. 

Yesterday her brother, Audrey and I were able to visit with her. She is 100% cogent. She is even gaining a bit of memory of what happened Saturday morning ... bits anyway. She remembers standing and tripping over the blanket that was in her lap when it fell to the floor. I have yet to be at the house to recreate the scene in my mind, but a picture is becoming clearer. Not that it matters, much.

Yesterday Ian's mother, Carol, came over anyway, and we ate the food I had ordered and admired the flowers. Then she and Ezra went over to be with my dad while Audrey and I went to the city. It was a blessing to have the company, and I was finally able to eat something. 

Today: there is more coordination to be done. More boxes to check, things to confirm, things to schedule. Ezra took the day off of school to "hold down the Ranch" (their home) while I work to coordinate more things from home. Mom has visitors scheduled for today, for which I'm sure she will be grateful. The nurse said they would be putting her in The Chair later today - it's a stretcher chair, and I am very familiar with it. I have a horrible photo of Ian in that same chair, but it's necessary for blood flow and healing for patients to be upright for some time during the day. It will be good for her, even though it may cause additional pain/discomfort. 

She's not eating yet - she will have to be "checked off" to do that by the Speech/OT folks and the doctor. But she's not hungry, either, so she's not stressing the not eating thing. 

I would say her spirits are average; she's not wallowing, but she's not cheerful. She did have good conversation with all of us, covering non-serious topics of the past, present and future. I will say that at some point in the conversation, she noted that she was wearing The Cone of Shame 😆.

She is able to receive guests. She is not sedated, but she is on some pain medication. The nurse said they like to keep patients awake for most of the day when possible, so if anyone wants to visit, please let me know and I will be sure you have the information needed. 

How am I? I've had my pity party, my bouts of sadness, and now I'm in caregiver mode. It was very good to see her yesterday and to have a better picture of her in my mind than I had in the ER. I am very, very busy, coordinating and such, and that's probably a good thing. We have no idea what the future holds, but we do know some of the decisions that will need to be made, and none of them are pleasant. 

If you've made it this far, here's your reward: a mother's day selfie: 

I don't think her nose is broken;
the mark is from her glasses.