What Can I Say?

What can I say except that Mom continues to decline.  Each day she reaches a point where I don't think she can possibly get any worse, and yet each day she does.  I'll be honest.  We're nearing the end.

Mom has completely stopped eating and she rarely will accept water.  As of Sunday she refuses to open her eyes on most occasions.  If you ask her a question, she will respond, but I'm not always certain she knows what she's answering.  Comprehension isn't 100%.  She says she's not in any pain, but any sort of movement has her crying, "No, no no."

At some point over the weekend, I started to cope a little better.  I started to come out of the depression phase of things and started to focus more on the 'what needs to be done' side of things.  I was able to talk about it without breaking down or even becoming weepy.  And then last night, just as I was about to head up to bed, I lost it.  I had one thought: I'm going to be motherless.  I ended up spending 45 minutes ugly-crying on the couch with Hans bringing me tissues and just holding me.  And of course, today I'm back to weepy

I cancelled her doctor appointment for today as I'm unable to transport her, and there's not much point in it.  That said, palliative care is sending out a nurse practitioner to meet with me and seriously talk about hospice.

I feel bad for all the people who have asked to visit Mom.  At this point, I'm allowing a few select people in if I'm with them.  Otherwise, please stay away.  She won't realize you're there anyway, and having so many people around is just overwhelming.

Yesterday, I sat with Mom for a while.  I sang songs to her.  I sang the most soothing things I could think of...lullabies.  I had Anna with me, and I snuggled / nursed Anna and sang lullabies to both my child and my mom.  God, that sounds even more depressing when I write about it!  Anna has been a trooper.  She's normally good for a 30 minute visit or so, but I can tell it takes its toll on her.  After each visit, as I take her from her stroller to put her in the car seat, she reaches up and gives me the most wonderful hug.  Maybe she's just tired, maybe she's just grateful to be out of her stroller, but I truly believe that she's hugging me because she's upset to see her grandmama so ill and her mommy so upset.  Most visits now are when Hans can be home to watch Anna.

At this point, I'm just making sure Mom knows how much we love her.  I tell her I will always love her.  I tell her that Anna and I are OK, and we'll be OK.  Yesterday, I thanked her for teaching me how to be such an amazing mom.

And now I wait.  I hold my breath every time a nurse calls.  I get angry when they call me with trivial news.  "Mrs. P, I just wanted to let you know your mom hasn't been eating."  Do they not see me there every single day?  Do they think I don't already know that?  One of these days I'll receive a final phone call from them, and I won't have to hold my breath anymore.  Why must they call over such simple matters?

I know I'm rambling.  It's just how my thoughts are working right now.  Keep us in your thoughts.  Thank you for all the love and support so many people have shown.  If you see me, and I'm smiling, be happy for me.  If you see me and I'm crying, I'm sorry.  Don't run away.  It will pass and I'll smile again soon.

We're Not Doing So Well

First of all, let me apologize to all you wonderful people who have been calling and sending messages.  I'm sorry I have not answered or responded.  It's just to hard to tell each person individually what's going on.  This is my best place for updates.  Know, though, that all those calls and messages are noted and appreciated.

Second, let me apologize for all the depressing posts.  The reality is that I just haven't been able to muster the time or the energy to post everything.  Certain things have been good, great even.  Hans' family came for a visit, Anna had her 1st birthday, and Hans' old roommate and dear friend came to visit.  Things with Mom, however, tend to overshadow everything.  It's all-encompassing and if I'm going to write a blog post at this point, it's most likely going to be about her.

Now, on to point of this post.

Mom isn't doing well.  She has continued to decline over the past week.  She's not eating and she's dropping weight.  Her last weigh in was 128 at the previous doctor appointment (down 14 pounds since her scans).  Now she's too weak to stand on her own, so weighing her is difficult.  She's on a good deal of morphine and often isn't 100% aware of her surroundings.  On Monday, though, we got the worst news of all.

Mom was supposed to start chemo on Monday, but the doctor told us they couldn't do it.  She's too weak.  Chemo would cause more harm than good.  So, at this point, unless there's some miracle, we're really just wondering about time.  We're trying our best to manage the pain and yesterday we gave her IV fluids to see if that would help anything (it didn't).  Mom doesn't really understand.  The doctors tried to bring up Hospice to her yesterday, but she just said she was too tired and didn't want to talk (we'll try again next week).  She told me she was happy that the doctors thought she was doing so well.

How am I doing?  Well, frankly I'm an emotional mess.  When I posted my last post, I got a lot of responses as to how I can get more support, and I feel I need to explain a few things.  First, the closest family Mom has is her half-sister in Arizona.  She's always had a lot of friends, but never a bosom-buddy, so that's out too.  As for the kennel, I'm making changes to make it easier for me and the rest of the staff, and in the mean time I have some really great employees.  Still, though, I miss being there.  When it comes to Anna, she's in part time daycare.  We've talked about moving her to full time, and we have a lot of family encouraging us to do so.  Keeping her home with me a little, though, while sometimes harder, also forces me to take a moment and enjoy life.  I love being with her.  My only regret is that I don't always have the energy to do the things I want to do with her.  But I do try to interact and let her know that I'm always here for her and she comes above anyone else's needs.

So, the emotional mess part?  Yeah, there's a lot factoring in to that.  Hormones and sleep deprivation are two factors (yay baby!).  Of course it's hard watching Mom go through all this too.  And then there's the guilt factor.  I often find myself just wishing it to be done.  A month ago I was praying that she would get better faster.  Now I just want her out of pain, however that may happen.  It's kind of hard to admit that, but I know she's miserable, and it's certainly no walk in the park for anyone else. 

In addition, I was surprised when I realized the other day just how lonely I've been the past year.  Hans is wonderful, and he's always there to support me, but he spends his days at work and often times we're both busy at the kennel in the evening.  He also isn't going through the same things I am. He isn't the sole care taker of his mom and she isn't gravely ill.  He isn't the head decision maker at the kennel (although he is a very important adviser and he often does make decisions).  He doesn't hear all the complaints unless they've been filtered through me.  It's very isolating.  When it comes to friends, my new mom friends aren't dealing with the same trials, and let's be honest.  Even if they were, I don't think I'd see it that way.  My childless friends, well, they don't quite understand some of the difficulties in parenthood or the fact that I actually enjoy spending time with my child.  No, I don't want to hire a sitter and go to a party or a club or out for drinks.  Those never really were fun things for me anyway, and now I'd much rather spend it with Anna.

I came to this realization while Hans' old roommate was here.  I've known him for all of 2 days less than I've known Hans (12 years), and  many college days (and nights) were spent with Hans, my old roommate, and his old roommate.  There's a bond there.  I found I felt comfortable talking with him the same way I do with Hans- free of judgement and open to almost any topic- and he was a HUGE help when it came to running quick errands or visiting Mom.  He was a second set of hands for Anna.  (Quick note just in case some of you have bad thoughts: Hans has NOTHING to worry about).  I just came to the stark realization that I really miss having that trusted confidant who's not my husband.  I miss just being able to kick back and remove myself from life a bit.  So, now I'm working on fostering friendships and relationships.  I have plenty of friends, but too often I ignore those friends to focus on other things (kennel, Mom, baby, etc).  So, while I don't always want to go to a party, I will hire a sitter because my friend wants me there.  And while I sometimes just want to stay home and hibernate, it may be better to call a friend for a brief outing.  And then, when I just can't do it anymore on my own I know I'll have friends nearby to call on.  And for the dear, dear friends I do have, whether you're near or far, know how much I appreciate you.  Even though I'm not great at calling or hanging out, your friendship is precious to me.  And someday, when you're in need, I hope you feel comfortable calling on me, and I hope I can take a moment to focus on you the way you have on me.

Alright folks, that's all I have today.  I have a tired baby who wants to nap, and I'm going to take that opportunity to get a little more rest as well!

Mom Update

In short, things have not been going well.  After my last post, Mom had a fall.  I'm not entirely clear what happened, but she'd had a long, exhausting day, and I think she just lost her balance.  The fall combined with the long days left her in A LOT of pain.  She didn't want to do therapy, and the pain often left her befuddled and confused.  There has been more than one time where I've left her in tears simply because it's been difficult to watch her decline.

To put it simply, THIS SUCKS.

The worst part is that I have no idea what to expect.  Will she start to get better, or will she only continue to decline?  This morning she was actually doing a little better, but I can't tell if that's more of a permanent thing or just a brief window of clarity.  Also, how long will everything take? Chemo starts on Monday.  Will she improve like she did last year, or will she merely be additionally weakened from chemo?  I don't know if I should even get my hopes raised.  I'm trying not to, but hope seems to be the only thing I have.

In addition to all that, I'm trying to figure out her financial situation and make sure she has decent care no matter what.  Can I just put out there that long term care insurance would be really helpful right about now?

Yeah, it's been hard.  I could probably handle things if all I had to worry about was Mom, but then I also have Anna and the business.  Thank God things are running fairly smoothly with them!  My point is that I have these terrible emotional tugs.  Anna celebrated her 1st birthday.  YAY!  Mom wasn't feeling well enough to go.  Not yay.  We took the party to Mom and she actually ate quite a bit.  YAY!  Yesterday Mom didn't want to even look at food.  Not yay.  Anna has been really loveable and giving lots of hugs.  YAY!  Taking Anna to even visit Mom is difficult, because Anna wants to crawl, and there's no place for me to set her down.  Not yay.

So, it hasn't been easy.  We're getting through, but it hasn't been easy.

Mom Update: A Week Later

This is a pretty simple update, but I wanted to keep people in the loop.

Mom is currently in a nursing facility for rehab.  The nearly week-long stay in the hospital along with having a drain put in left her week and fairly immobile.  She tired quickly and her legs lost a lot of strength.  That combined with the amount of pain she was in made me realize that I just couldn't take care of her directly from the hospital. 

The good news is that rehab has been going VERY well.  I no longer worry if she just has to use the bathroom, and I've noticed a HUGE improvement in her walking.  She's getting occupational therapy, speech therapy (for memory), and physical therapy every day.  It's leaving her completely wiped, but it's good.

The other good news is that after the original draining and the one after it, they haven't gotten much fluid out.  The slower the fluid reproduces the better, so that's all great.

Mom and I are now having some harder discussions.  They're hard for two reasons: 1) They're kind of complicated and in-depth, and Mom's exhausted. 2) The subject matter.  We're talking about things like long-term care as we progress forward.  What do we do if she gets better?  What do we do if she gets worse?  And then we're talking about things in case she doesn't get better.  What happens with her dogs? (I'll keep them, of course.)  What paperwork is there to be done?

At this point, I'm just looking at the positive side of things.  It's all very hard.  Mom will be home soon, and I'm excited to have her back, but I'm also terrified.  It's hard living with my Mom, and this past year certainly hasn't been easy.  I want her to know I love her and care for her, but I'm also worried about my family and my sanity.  So, I have to stay positive.  Here's to staying sane!

Mom Update

Mom is still in the hospital.  It was just supposed to be a one night stay to ensure she got her tests and whatnot in a timely manner, but she was in so much pain after her drain was put in they decided to keep her another night.  She's most likely going to stay tonight as well since the pain hasn't diminished.  She's on three different pain meds and is still asking for more.  At this point, I'm working with the doctor and other hospital staff to figure out the next steps.  She's really not strong enough to come home, but we don't want her to stay in the hospital forever.  Ideally, I'd like to see her go to a rehab facility to regain some of her strength.  She was already having some issues with walking, and these past few days have caused her to greatly decline in that area.

Frankly, I'm not quite sure where we stand at this point.  One moment, I'll be fine thinking about how well Mom is doing given the situation, and the next moment I'll break down crying because I'm scared of losing her.  This round of things has all been so sudden and things have progressed so quickly.  Just a month ago there were just a few concerning spots, but Mom was acting and eating normally.  Now today, she's just getting some appetite back, but she's exhausted after a shuffle down the hall. 

Things to know medically: They removed 1300ccs of fluid from her left lung yesterday.  For comparison, most people normally have about 4 tsp.  The brain MRI came back, and that was clear, which is good, but her chest CT showed more activity (which is kind of a well-duh).  I can't help but wonder what another bone scan would show.

So, for now, I'm back off to the hospital.  I'm hoping I get to see the doctors again and maybe we can figure things out.

I've had better days...

I'll keep this short, as I'm currently sitting in the waiting room at the hospital.  Mom is being admitted for the night.  Fluid in her lungs as increased causing,her significant pain and discomfort.  The doctors decided to admit her for scans and then for a drain to be placed.  Can I just say it's really hard to go through this?  It's not fair!  The end.

Mom Update

Mom had more scans a few weeks ago.  I'll just cut to the chase.  They weren't great.  Of course, we were hoping for completely clear scans like we'd seen before.  Heck, we were kind of expecting it.  Unfortunately, the scans showed a few new nodules and some "suspicious activity."  Everything is fairly small (the largest is only about 10 mm), but it's still not great news.  Our original reaction after hearing the news was to start chemo as soon as possible.  You know, let's kill this while it's small.  However, after chatting with a few different doctors we decided to wait.  The more we find out about how it's going to progress, the better we'll be able to treat it.  Plus, Mom's body kind of needs a rest from all we've put it through.

So, those are the facts that we know.  Where things get difficult is in all the unknown.  Mom hasn't been feeling well, but it's difficult to pinpoint why.  It could be due to the cancer, it could be depression, it could be the pain meds, it could be chemo/radiation, or it could be all of the above.  No matter what the cause, it's still horribly difficult to watch.  She's nauseous and lacking appetite, she's tired, she's hurting.  It's hard to watch this woman who once helped me move an entire apartment up 3 flights of stairs to now have difficulty getting up out of bed.

It's also hard not knowing what comes next.  What will the next scans say?  Will there be more chemo?  More radiation?  Mom is so happy that her hair is starting to come back.  Will she end up losing it again?  If there is more chemo, will it work?  I have moments where I think, "If this is what does her in, then let it be swift", and then I feel instantly guilty because I want to spend as much time with her as possible.  So then I think, "Let us just be over and done with this quickly and hope for the absolute best."

To add to all the stress, Anna's 1st birthday is at the end of the month.  I'm thrilled and excited about it, but it often leaves me feeling like two different people.  When I'm focusing on Anna I'm the happy mom, but then I'll be hit with this overwhelming wave of sadness.  I'm never quite sure how to feel.

I won't ramble on any longer.  I'm utterly exhausted, but I thought y'all should know what's happening right now.

Thanks for listening.