Where I've Been

I don't know anyone who actually still checks to see if I've posted here or not.  And this is likely to be my last entry in this space, other than a notice when I relocate.

Two entries ago I was doing a little "10 days" meme, which I never finished... but the question was about who I'd been closest to for the longest.  And I posted a picture of my mom and I.  Little did I know that just a couple months later, she would be gone from my life.

My mom died.

After I wrote that entry, she was actually able to come home from the nursing home.  On March 1st, she came home.  She was so, SO happy.  I was so, SO scared.  I was scared of her ability to take care of herself at home and scared about the physical toll it would take on both her & my Poppy, who nearly died in November & spent a few months in the nursing home himself.  But she wanted to try it... "How will I ever know if I don't try?" she said.  So, she tried it.  I told Eddie, "I don't see it lasting more than a month," and sadly, it didn't.  It lasted just over two weeks before she started falling again.  Three falls in 2 days, and it was time to go back to the nursing home.

She wasn't thrilled, but she was OK with it, because she got to go to a different nursing home, one closer to home and one that her sister was a resident of also.  For a week she spent time getting to know the facility (which was much larger than the last), the staff, the residents, and of course, playing Bingo, her favorite!  Her last week there though, was a different story.

I remember it being a Friday night at about 10pm, I got a call from the nursing home saying they sent her to the ER (in the attached hospital) because she was really weak & out of it.  I dropped what I was doing to be there, as I always did whenever she had to go to the ER--my Poppy is housebound now & he can't be there for her, so I always went.  The did a bunch of tests, we talked about how she'd been like this in the past before & the next day would be OK (she had a lot of diabetic lows, which would make her be kinda goofy & out of it at times), and they sent her back to her room a few hours later.

The next day I tried to call her to check in, but I didn't get an answer--this wasn't abnormal, as she didn't always get to the phone if it was across the room, so Eddie and I went about our errands for the day.  Late in the afternoon that Saturday, I tried calling again, and no answer.  I also had heard from a cousin that she'd been trying to reach her most of the day with no luck.  Something didn't seem right, so I called the nursing home.  The said that she'd still been very out of it all day & spent the day in bed.  They were vague & short.

Then about an hour later, her physician called me.  And if doctors are calling you, it's usually not to chit chat.  He said that he reviewed her labs & tests from the night before, and her kidneys were completely shutting down.  She'd been in renal failure for years, but not to the point of needing dialysis.  Her mental state was being impacted because the toxins of her medication were building up in her body & not being filtered out by her kidneys properly.  The immediate plan was to hold her meds & push fluids so that what had built up in her system could hopefully get out in the next 24 hours or so.  If that wasn't going to work, we were going to have to talk about if dialysis was an option or not.  We were floored.  This seemed so sudden.  Don't get me wrong, my mom had been chronically ill for years--my whole life, practically--but she always bounced back... and to hear that she might not this time, I didn't know what to do.  I immediately called my Poppy, who had also talked to the doctor, and went to his house to discuss the situation.  It was late in the evening, and as I said before, he's housebound, so we decided we'd try to take him to see her the following morning. 

We went the next day, a Sunday, and she was completely out.  She didn't wake up at all while Poppy was there.  He was devastated, kept trying to talk to her to get her to wake up, but she wasn't budging.  He just kept looking at me and saying "I wish she'd just wake up..."  She did eventually wake up, but not until that evening.  She was very confused, and I would spend an hour calming her, only to have something happen that would agitate her again, and then I'd spend another hour calming her.  I was doing my best in a horrible situation. 

The following day we talked to the doctor again--her kidney funtion hadn't improved just by holding meds, and it wasn't looking good.  If we were going to attempt dialysis, we had to do it now.  The risks and benefits were laid out before us.  She would need a surgical procedure to place a shunt--it's likely she wouldn't survive the procedure do to her many comorbidities; if she did survive the procedure, she would have to be able to travel a couple hours three times per week to endure the treatments--several days prior she rode the bus to an appointment and it wiped her out completely, there's no way that she'd have any quality of life having to do that three times a week.  However, my mom was always very clear that if she was in the hospital or something, she wanted them to do what they could do save her.  So we were torn.  As her POA's, my Poppy and I had to make the best decision for her.  Do we try, and more than likely lose her anyway, but cause her to be miserable the whole time we're trying, or do we make the decision to let her go peacefully, without pain?  I couldn't believe I was being faced with this decision.

I went to her room, where most of the time she was out of it.  She'd have moments of clarity, but they were mostly laced with confusion.  She could see I was upset, and I saw in her eyes the mom that I knew was there, beyond the confusion.  She asked me what was wrong with her, and I told her.  "Will I have to do dialysis?" she asked me.  "Well, that's what we have to talk about..." and I explained to her the situation.  She squeezed my hand and shook her head at me and said "No, no, no, I would be miserable, miserable, miserable..." and then the fleeting moment of clarity was gone and she was groggy and mumbling again.  I knew what we had to do, as horrible and difficult as that would be for our family.  Keeping her here would be horrible for HER.

The decision was made, and she was put on comfort measures until it was time.  I've lost a parent before (bio dad), and it was sudden and shocking and horrible, but watching someone die and knowing that it's coming is a whole different kind of pain.  My husband and I were there pretty much 24/7, right up to the end.  We talked to her, shared old stories, listened to favorite songs.  My Poppy wasn't able to be there the whole time because of his own health, but he did come daily, sometimes several times daily, for several hours at a time.  I knew he'd need to save what energy he could for the days to come. 

On April 1st, only an hour or so before the sun rose, my mom left us.  Part of me left too.

The following day, Eddie and I drove 16 hours round-trip to Arkansas to get my sister so she could come for the services.  While on the way down there, he complained of pain when he sat, that was getting more and more sensitive.  In the days before my mom passed, we'd been doing a lot of sitting on hard chairs, and he'd complained of it before, but on this trip it was getting worse.  The pain grew so severe that he wanted to go to the ER as soon as we returned.  He could hardly walk because of pain in the crease of his leg, like where the elastic in the leg of your underwear would hit.  We went to the ER, and long story short, he had a badly infected hair that had turned into an absess.  Sitting on it in a bumpy car all day had aggrivated it & it was spreading infection throughout his body.  They wanted to keep him overnight, it was such a serious infection.  We informed the staff what had just happened with my mom, and how we really wanted to get this taken care of ASAP so that he could be there as a pall bearer & be by my side at her funeral.  They said he needed to stay overnight & we'd see what the infectious disease doctor had to say the next day.  They also ran some tests & CT scans of the area to see how large it was.

The next day came & Eddie was feeling better.  The cyst had burst on its own the night before & released a ton of pressure, so he was feeling confident that he'd get to go home w/o having to have it surgically taken care of.  He sent me home for a shower (I stayed with him in the hospital that night) and to work on a picture collage for my mom's services.  While I was doing that, he called, very upset, because the infection doc didn't have good news.  The type of infection he had was basically a flesh-eating bacteria (necrotizing fasciitis) that was life threatening if it wasn't aggressively treated and the bad tissue removed.  They wanted to take him in for emergency surgery that afternoon. 

They told him that they werne't sure how far the bacteria had spread & how much dead tissue they would have to cut out, but that if it was a lot, he'd likely be in the SICU, sedated for several days.  We had to sign paperwork... a living will... just in case.  I had just lost my mother, had been faced with making the awful, difficult decision to let her go, and now I might be faced with doing the same for my husband???  This couldn't be happening.

He went into surgery that evening, and it was the longest 3+ hours of my life, not knowing, waiting, worrying.  Was he going to be OK?  Finally the surgeon came to see us, and he had GOOD NEWS!  The infection hadn't spread nearly as far as he had expected; in fact, this was probably the least-severe case of this bacteria that he had operated on!  That said, they still took a lot of tissue, probably about the size of a softball, and his wound had to be left open for several days to help it heal from the inside out.  The surgeon told us that unfortunately a lot of cases of this don't end well because the bacteria silently spreads & has spread so far before it's detected, that it's usually too late.  Too late.  I can't tell you how relieved I was that it wasn't too late. 

I truly believe that if things hadn't transpired exactly as they did, I would have lost Eddie.  If my mom hadn't passed, we wouldn't have driven to AR.  If we hadn't gone on that long drive, it wouldn't have aggrivated the abcess to the point that it would have been as painful... it would have just been spreading, and Eddie probably would have just thought he had an infected hair that would go away, like happens sometimes.  If it hadn't gotten so painful, we wouldn't have gone to the ER.  And if we hadn't gone to the ER, they wouldn't have done tests to know that this was a serious bacteria.  If all of this hadn't happened, I may have been going to my husband's funeral too.

As it turns out, Eddie had to spend 10 days in the hospital recovering, and had to have a second surgery to do a skin graft & close up the wound.  He had to miss my mom's funeral, which was hard for both of us.  Hard for him, because I know he very much wanted to pay his respects, and also be there for me, and hard for me because I had to keep it together for the rest of the family.  I had to be the strong one, so I was.  Eddie's recovery has been a long one.  He's been home for nearly two months, and we're still having to pack and dress his wounds, but they're getting smaller every day.  I'm so thankful for that.

But missing my mom, that has been really really hard.  I've felt alone a lot of the time, even though physically, there are people around me.  It's not something you would ever understand unless you had been there.  I know in time, it will get easier.  I know that, but I also know that I will never--ever--be the same.