How’d I get here? After

The continuation of https://wordpress.com/post/whichwaysup.blog/1522

This is the second half of a long story. The one that answers, as well as we can, the tough question that comes from my mother periodically – the question we wish we didn’t have to answer because it would be so much easier if we had a better answer – better than, well, that’s a long story. I started writing my thoughts down over the summer, after a visit with my family in Georgia – when I knew without question that things were changing. I just wasn’t aware, at that time, how quickly that change would come. She’s preparing to come home this week after three months in acute rehab and with no clear picture of what’s next. Three months that she hardly remembers – and of which she often asks, How’d I get here?

August 20, 2020:

It’s been four days since you went off in an ambulance and we’ve still got no firm diagnosis. Coupled with a total lack of improvement and the idea that you might not ever be coming home is starting to percolate – a thought that slammed Dad awake in the middle of last night and brought him to his first heavy streams of tears this morning. I think of how that would feel – sleeping side by side with someone for fifty plus years and then having them taken away without warning. Living in an emptier house, trying to carry on while your soulmate lies in silence at a facility somewhere down the road. We (the kids) spent the day wondering how to speed things up – wouldn’t that be better? To get to a new starting point more quickly rather than spending who-knows-how-long in limbo? I can’t believe these are the conversations we are having. Why can’t you just get better?!?

I came to see you today. When I walked into the room I actually thought I’d come through the wrong door. How did four days in the hospital age you so much? I looked closely to make sure I recognized you, yes, yet still expected the nurse to come in and rattle off someone else’s name. No, you’re right, this isn’t Judy, this is someone else fading so quickly to the edge. But it was your name. I made some contact with you – minimal – nothing to get excited about. A doctor appeared with a diagnosis of diverticulitis. What’s that? Is that it? Is that what we fix to fix this? No…this was just…something you had…tacked on to whatever else is (not) going on in your seemingly turned off brain. Oh, okay. The brain MRI finally happened today as well – four days after it was suggested. So, now we wait again, for a morning phone call with news – though no one knows anymore what would be considered ‘good.’

I’m starting to panic as our departure day is now within sight. What do I do? The idea of being separated from my own family and trudging through whatever is next alone is giving me high levels of anxiety. But keeping them here indefinitely is impossible as well. Keeping me here indefinitely is too. I want to wake up tomorrow to something normal. I want to have a plan for something. I want to be able to pick up the phone after dropping Zack at work and talk about our days – a normal Friday. The Friday I had last week – that is the one I want. Why didn’t someone tell me that would be our last lucid conversation? I’m panicking.

August 21, 2020:

A glimmer of hope. Perhaps the antibiotics were all that was needed to turn this ship around. Dad reported back from his morning visit that you were a different person – chipper, joking and eating. I heard the news with a cross between relief and fear – isn’t this what they say happens? A person may rally before calling it a life? I also know his history of reporting a great status and the lessons learned of this week that your partner is grasping at straws for some positivism. He woke up this morning feeling terrific as he’d heard from several people (we don’t know who) that cognitive difficulties and diverticulitis went hand in hand – and his visit proved it. Jeff and I looked at each other knowing that one of us would have to go for a visit as well, just to see.

It was Jeff – he went. And he also said things were much better. You’d been out of bed and into a chair. You’d grumbled at him for not coming sooner. You’d eaten again and been to the bathroom solo. In 24 hours it seemed that we were back to pre-2020 behavior. How long had this infection been living in you? This seemed too easy.

August 22, 2020:

We were sent home by Dad for space purposes – tired of having us stare at him, I suppose. Things were looking up, so it made sense. I stopped in before I left on Saturday – a bit disappointed as I didn’t get to see the wonder of the day before. You’d been sleeping and were groggy for our visit – though again, an adamant “I love you,” before I left. More of the same into Sunday – the disappearance of new-old-Judy – enough so that an MRI was ordered again, this time with no four day wait. I’m trying not to freak out – but when we came home from dinner tonight, the battery powered candles on the mantle were lit up. Randomly – no one was here to push the ‘on’ button. They were the last gift you gave me. I was so scared to turn them off last night – what if it was what was keeping you going? – some random lights five hours away. That’s not weird, right?

August 24, 2020 (1 week):

We’re no closer than before – other than to a rapid form of dementia. Tonight Rich said isn’t this better than something quick and tragic? No. At least I don’t think so. Long and tragic seems worse. I told him our plans through sobs brought on by exhaustion – how you would outlive Dad and move to Virginia the second the house in North Carolina sold. That we’d live near each other, once again, meeting for lunch or girls’ weekends. You said we would do that. And now I’m adding anger to my list. We go from tiny glimmers of hope to reality checks… MRI/CatScan/EEG all show relatively normal – typical aging.  White blood count is normal which means no more infections.  Yet, you think you are in Laurinburg. Sometimes you are super engaged and others you are off in space.

August 27, 2020 (10 days):

The roller coaster continues. Yesterday we were thrilled to hear that you’d be heading to the hospital’s acute rehab wing – it was so exciting to know that someone believed you were well enough to continue getting well. I don’t know if Dad misinterpreted or the Case Manager did – I don’t know – but today we learned that you weren’t well enough for that. It was a big deal that it was at the hospital because it would allow Dad to continue visiting. Without that job, we’re not sure what will become of him. Except now we will have to find out. Instead, we learned, you’d be going to a facility to learn the very basics – though it’s still unclear if those will bring you home. The likelihood is not, but we grasp onto anything. The crushing blow (another? when will they stop coming?) is that the facilities set up for this are private – and during times of pandemics, visitors are not welcome. I don’t know what to do. I don’t know if I should hop in my car and speed to your side. I’m terrified that once you get locked in, that will be it – with no familiar faces, you will completely lose track of who you are. I’m trying to not overreact. But how is that possible?

August 31, 2020 (2 weeks):

I did come down. The nagging in my heart grew to be too much. I’d told Dad I’d be there on Wednesday but couldn’t wait and came down today instead. I prayed the whole way that you’d stay put until I arrived. I think if they’d placed you somewhere and I missed you by minutes, I’d have lost it. I don’t know why it was so important. I made it, though. You knew me right away though still struggled to communicate. Dad was so relieved to see me – his face just lit up and relaxed simultaneously when I came around the corner.

I thought I was just here for you, but maybe I was wrong.

I learned that there is still a huge challenge in getting you to eat and because of that you are often IV’ed for hydration – yet another oh, it could be lack of fluids causing the confusion non-diagnosis. Really? Water for the win?

September 2, 2020:

Whirlwind. Emotional whirlwind. How else to describe the last 24 hours? Dad came to visit with you yesterday morning – when we traded at lunch time, I was greeted by a nurse telling me you were leaving in about thirty minutes. What? Where? What did I miss? The catch up is that once Dad decided that he would rather have you back in NC and close to home, the paperwork became much simpler. I don’t know why – but things moved at rapid speed. Dad came flying back to the hospital, paperwork and a large check in tow (who knew an ambulance ride could cost so much?). The confusion in your face was evident, the stress forming in your brow, as we tried to explain what was happening. We hardly had time to collect your items before the transport stretcher arrived, loaded and left.

Empty.

We watched the ambulance head west over the bridge while we went back to the campground to try to shake out what just happened. Should we rush home? Should we cry? What? We decided to stay another day – take our time packing up. The facility in NC said we’d not be allowed in anyway – that you’d be exhausted and there’d be no point in our own rush. We were instructed to call the next day to set up an outside meeting with intake.

The drive home gave Dad and I way too much time to digest the last two weeks. We arrived at your house separately but both mentally fried – Dad pointing out ‘moments’ when he should have know something was wrong. We unloaded the RV and collected your clothes to deliver at our meeting. I’m so glad I was there – sitting outside in the wind trying to listen to someone in a mask was nearly impossible for me, let alone a stressed out, mostly deaf 81 year old. The facility was surprised at your condition. They weren’t expecting someone with zero skills. Neither were we. The next countdown began – the one where we wouldn’t be able to see you at all.

September 5, 2020 (19 days):

I came back home a back home a hot mess. The tears would not stop. I knew a week of doing-doing-doing would point me directly to an emotional crash the second I set foot on my own carpet. It wasn’t a terrible week (https://wordpress.com/block-editor/post/whichwaysup.blog/1691), it was just so much. The kind of time where you go and go and go and don’t take time to process anything – and then bam, a tidal wave of processing. Dad and I bounced back and forth between reminiscing and pretending we weren’t freaking out. We are freaking out. With no real ‘end date’ to this journey (I literally cannot stand that word anymore), we aren’t sure which direction to drive the processing bus.

September 7, 2020 (29 days):

Weeks seem to last approximately 72 days. I guess the old ‘no news is good news’ saying applies here. There is no news. It is a fairly flat roller coaster – with minimal changes for the better or the worse along the way. Dad continues to visit you regularly – some days you seem to really recognize him and others, you’re exhausted and confused. We know you are working hard – I never even knew there were so many different kinds of therapy (occupational, physical, speech, etc…). We did have a couple family Zooms over the last week, which Dad seems to really like. We tried one with you, but you didn’t understand what was happening. You could see us – reaching out to touch us, but only finding a glass screen. You were so frustrated and sad. You are inching along. Dad said you were able to pick up the phone and hold it for about ten minutes today. You ‘talked,’ though not really as you are still unable to actually speak. There is something within you that you are trying to get out but it’s a bit of a guessing game right now while we wait for the words to form again.

I hope you don’t really know what is happening.

September 23, 2020 (6 weeks):

For the first time in a month and a half, we were able to see you in person – no glass between us – thanks to a doctor’s appointment. I came down for it and to check in on Dad. He’s struggling, adjusting to a solo house while maintaining hope that this will not be his new life. I’m sad for him. I hear his sadness (he thinks I don’t, but his office is right behind the couch wall).

I should have hugged you more – I was just in do it mode – thinking I’d give the time to Dad while I took the paperwork part of the visit. My heart both swelled and broke when he saw you – tears streaming, a cracking voice as he said oh, I can finally touch you again! before a hug and a kiss. It was so sweet. And also awful as I knew it would only be for, what, an hour? The appointment was fine – we all did our best – but the phone call for someone to come get you loomed. I flubbed it. Pretending to make the call, giving Dad more time to sit with you, holding your hand. I’m just so sad for him today. Knowing what is coming, that things have changed forever, another fear of aging clicking into place. I’m not ready. We’re not ready. Can we flub this, too?

Dad is enjoying spicy foods again. He said he stopped eating things spicy because you weren’t a fan. Apologies for the many variations of Sriracha in your fridge.

October 1, 2020 (7 weeks):

Things are changing and not changing as you continue to gain cognitively.  It is wonderful when I can catch a lucid moments and think oh, it’s all going back to normal.  But then, the next moment may be totally not lucid.  We saw you last week and we weren’t even sure you knew us – bring on the panic and sadness.  The next day, you were totally you. We keep praying that you continues moving forward so that Medicare doesn’t evict you. We’re definitely not ready to figure out what’s next.  

October 7, 2020 (8 weeks):

Can I say how much I hate Covid? With an inability to ‘get in,’ we have very little idea of what is going on with you. Being an advocate is a full time job. I sort of shrugged it off when people said oh, if you know someone in a senior center, you’ve got to stay on them ALL DAMN DAY. I didn’t know that was actually completely true. I haven’t heard your voice in two weeks. That fills me with loneliness. I haven’t heard you cheer me on in months. Shit is still hitting the 2020 fan and I can’t pick up the phone and tell you about it. We don’t know what you are doing because no one tells us. The fact that you are unable to pick up a phone seems to bug no one but us. We’ll call if there’s any change… Yes, but in the meantime, does my cognitively impaired mother even know that we are thinking of her? Does she know hard we are trying to reach out to her? Or does she think we just dropped her off and left her? Does she know that we are out here working our butts off? While you are working yours off in the sterile inside.

October 21, 2020 (10 weeks):

Still plugging along in rehab (yay!) but Dad really wants you to come home (yikes!). The thought is terrifying – an 81-year-old trying to assist a 77-year-old prone to falls and cognitive break downs. I’m dreading the day when we have to figure out what’s next. I wish you could just tell us. I wish you could see the struggle so I’d know that you understand why we aren’t rushing to pick you up. I wish so many pointless wishes. Our hope (the kids) is that the rehab center will dictate where you go next and that it will be a skilled nursing facility for a pit stop.  One of the issues with Covid is that the rehab center won’t do a home visit – bringing you home for a day with your PT and OT so that they can walk through all the ‘things’ you would need help with and assess Dad’s ability to handle it all.  Issue two is that he cannot go in to spend time with you at the rehab center, so he’s unable to see what all they have help you with. In summary, it sucks.

You continue to be up and down in the land of cognitive-ness – from awesome to confused to your old self to paranoid. The off days are hard, but I’m learning not to correct your odd stories as it seems to add to your confusion. Physically, you are making great progress – and now you’re dangerous…a bit over-confident which has caused several falls in the last weeks, one of which sent you back to the hospital for a (clear) cat scan.  We don’t know if you’re being stubborn (yes), impatient (yes) or just don’t remember that you’re not supposed to go solo (yes).

November 3, 2020 (I’ve lost count):

These Care Team meetings drive me nuts. We all sit on the phone in different states talking over each other while trying to interpret what the facility is recommending. For some reason, they can’t just come out and say Look, here’s what needs to happen now and here’s how you get it done so we have these meetings and then have post-meetings trying to extrapolate what the three of us heard. I know sometimes you feel stuck there with no help – I wish you knew all that we were doing on the outside to figure it out. I’m also glad you don’t know because you’d probably be fairly annoyed. I think it’s being recommended that you go onto a skilled nursing facility. OR that, if you go home, you are provided with 24/7 care. But no one will say for sure. We still have to guess your condition based on 15 minutes visits through a pane of glass.

November 6, 2020:

Apparently you are coming home. Or at least that’s what you’ve told Dad. You gave him the news before your case manager did – although the case manager was much more vague, ‘released,’ not ‘home.’ Dad’s asked for a meeting to discuss – I’m stunned that we had to request it. Were they just going to put you out at the curb with no instructions?

November 9, 2020:

Home it is. Love wins. Dad’s going to work this week to find Companion Care and bring you home. I’m actually very relieved that the decision’s been made and that we can now just move forward. Did I say relieved? I meant nervous. And gutted as this means your progress has plateaued. I’m also petrified that it’s going to be too much and that we’ll have to make yet another round of decisions shortly after this round. I’m petrified that I went through months of grieving and processing and that I’m going to have to do it all again. I’m scared to feel relieved or happy or confident or positive. I’m tired of feeling, period.

November 18, 2020 (three months):

Eviction day! As dictated by Murphy’s Law, you’re coming home on the exact day we all flew to Texas for some relaxation. I knew this was going to happen. I knew it the second the words ‘release date’ started getting thrown around. We’d actually been encouraging Dad to come to Texas with us – he refused, now fate’s shown why. This had caused some panic as both Jeff and I felt that one of us should be in NC for this – but Dad agreed to and acquired Companion Care, so maybe the date collision was actually to our benefit.

November 23, 2020:

In the days that you’ve been home, well, it’s going much better than we’d anticipated. The smell of your own house has evidently injected the medicine you needed to flip your brain further ‘on.’ Reports from the caretakers are positive – that they see a daily change in your abilities and stamina. Because we’ve yet to nail down why this happened – we are a combination of elated and perplexed. Is there a limit to these good days? Have the tweaks in medication resolved the issue? Was it an undetected stroke? What? Of course, our focus now shifts to enjoying what we thought we wouldn’t get back – or who we thought we wouldn’t get back. I’ll apologize now for the microscope you’ll be living under. Yes, we will be sensitive to your energy and mood changes. Yes, we will insist on helping you get around. Yes, this has been a labor of love and we’re a bit traumatized from what we’ve been through and we’re super nervous to wipe our brows and say phew, glad that’s over!

I post this awkwardly, now, knowing that you actually will read it – that you may be reading it at the same time as everyone else – something that even a week ago I could never have imagined. I wonder what you will think. Today you told me you were reading a book and my breath caught. Just two months ago, I was sending you picture books to help with your speech therapy – encouraging friends to send pictures for you to describe and to send cards that would be read to you. And today you were reading a book.

I don’t know how you got here.

But I’m so glad you did.