Updates! Things and Stuff!

I can tell I haven't blogged lately by the "what's going on" texts I get :) Thank you all for reaching out/checking in. 

How's mom? Mom is in good spirits, all things considered. She's determined to make the most of therapy and is making progress. The PT/OT people at Mercy are wonderful. She has an adaptive hand device that allows her to feed herself. SHE PAINTED THE OTHER DAY. She still has to wear the Cone of Shame, and hates that very much, but she's able to take it off to eat and bathe. A brief respite. As far as what she's regained ... that's all in question. From what I can gather, she has no torso control/strength, is reliant on the hoyer lift for transfers, and no bowel/bladder independence. But she can drive her motorized chair with her good hand, has been able to make and receive calls on her cell phone, and participates in everything offered in therapy and community events at the hospital. However, she's set to be discharged June 20 ...  

How's dad? Dad had an "episode" of extreme extremity swelling and high blood pressure. Retention of fluids is not cause for immediate concern, however the combination with blood pressure led me to have him admitted to be sure there wasn't something else more serious going on. The doctors seem to think that even if his condition "is/is a result of congestive heart failure", the fact that he has no history means that even if the symptoms are indicative of CHF, he's in no imminent danger (people live with/manage CHF for years). It's one of those things (HEART FAILURE!) that sounds more dire than it actually is? I guess? This is a new area for me, so I'm learning and trusting doctors at this point. 

After an agonizing trip to the local ER, he was transferred to a different hospital with a much shorter wait time, was admitted and received diuretics and BP monitoring. After sorting out his BP medication (he was basically asleep for 3 days) (it's always a conundrum, because he runs LOW - for him, "normal" BP means he's likely to pass out if he's raised), he's alert, chipper, and back to his normal self. He has been discharged to a skilled nursing facility as of last night, and we'll begin the "settling in" process this week. 

How's Ezra? It was a challenging day, Friday, when Ezra's loaner car battery died and the key was stuck in the ignition, I was at The Ranch (my parents' house) and there was no food in the house. But my neighborhood rallied, got him jumped and fed, and in the pouring rain (indoor ceremony), Ezra walked the stage and received his diploma. It was such a blessing to have dad's aides covering him at the hospital so I could celebrate and enjoy my amazing son's big moment. 

How's Audrey? LOVING life and living large in Colombia. She sends me pictures I cherish. It's sometimes hard to explain what she's doing there, but here's my attempt: it's a summer work study project. There is a group of them there. Audrey is interviewing residents of Medellin about their perspective on the drug wars / cartels / Escobar era. Amidst her research, she hikes tall mountains, goes on coffee tours, feeds alpacas ... I'm so thankful she's getting this amazing, immersive experience. (I'll be requiring her to make a comprehensive post about it when she returns, lol). 

How's Rachel? Ah, that depends on the day. The last month has been ridiculously stressful. Most days I'm in "what's next/planning mode", and some days I completely melt down or sleep the entire day. It's been a lot. I'm blessed with an amazing family - parents who have always loved one another deeply, care about MY wellbeing, and cherish their grandchildren. I'm blessed with caring, considerate, do-anything friends, who have covered me and backed me up and encouraged me and expressed their concern. I'm working (blessed with a mobile, work-from-home job), coordinating care for both parents, gradually cleaning/clearing their home, and trying my best to "be there" for my kiddos (although they do make it easy). There's still quite a bit in front of us in terms of decisions and medical issues, but the fact that everyone is pleasant and helpful eases that burden. 

How are we? One day at a time - that's all we can manage. No one, no matter the circumstance, knows what tomorrow holds. All we can do is keep a positive attitude, and as my dad is wont to say, "don't let the turkeys get you down." 

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.