Watching the Process

Well things around here are continuing to get worse.  It’s hard to see it but mom may now be unable to get out of bed anymore.  It’s just getting too dangerous as she feels like her legs are not working and it’s really hard for her to support any of her weight.

It’s so hard when something goes wrong – you want to blame it on just “having a bad day” but then when so many bad days are happening you have to face the fact that things are actually getting worse and that this is part of the process.

Then there are other times when I just hate to see her going through this and I wish it would be over quickly – but then I hate myself for feeling that way.

It’s just so hard.

Help that isn’t so Helpful

So we are lucky enough to have a great amount of help taking care of Mom.  She was a very smart lady and thought ahead and purchased long term care (LTC) insurance so the cost of most of her care is covered by this.  However this still does not make things simple.

We activated Mom’s LTC insurance in Jan ’10.  We should have done it earlier.  Turns out they said she qualified back in Jan ’09. If I had been willing to admit that things were as bad as they were we could have had help for eight hours a day in our home completely free for that entire year.  When we went out of town for vacation we could have even paid a little to have someone stay here instead of all hell breaking loose like it did.  I do regret not activating it sooner.

What we ended up doing was getting home caregiver services to help out for a few hours every other day while we were on vacation because we didn’t know if this would be paid for.  Before that we were doing everything on our own.  Big mistake in that it led to major stress.  The upside was we got to spend A LOT of time with mom – taking her to all the appointments, physical therapy etc.  When we finally did start using caregivers we began to get a taste of what a MESS home care agencies are.  Basically you contact an agency – of which there are a plethora in any large city – and they come out to do an “assessment” to see what your loved one needs/wants help with.  They put together a “care plan” and then you decide how many hours you want help (typically there is a minimum of two hours per time they come out), when and give them a down payment.  You do all of this with a nurse or other administrative person from the agency.  THEN they attempt to find a caregiver to work with your loved one.  This means that essentially they send out their spiffiest people and have you sign up but you don’t know exactly who you are going to have actually helping you in the home.  You don’t know who will be bathing your loved one, wiping their butt, spending all day with them etc.  If it’s a good company they come over a bit early on the first day – the administrator and the actual caregiver you are being assigned – and do an introduction before work.  If they aren’t as great they just send over Helpful Henrietta or whomever to go to work. Sometimes they check up on how things are going, other times they just send you a bill for the services and don’t bug you unless you call them.  Oh yeah and the markup between what they charge you and what they actually pay the caregiver can be huge.  For example in our city a caregiver could make between $9-$13 per hour and the client is being charged $23-$27 per hour.  From what I have seen these agencies are really making some good cash.  If it’s a crummy agency then oftentimes the caregiver will have little experience, may not be able to communicate in understandable English, and may not even be given details of the job beforehand.

Why do I know all of this?  Because since the beginning of Feb we have gone through THREE different home care agencies and at least ELEVEN – yes 11 caregivers.  Granted out of those 11 we have two consistently working for us.

We’ve had caregivers not show up, show up an hour late, forget to take my mom to a blood draw appointment, drop her on the commode causing a huge bruise, say “I’m not a maid” (when part of the job involves housekeeping), ask to leave when they were supposed to be on duty, ask if they could have me sign off on their volunteer hours for diversion and I don’t even know what else.  And that doesn’t even begin to mention how our most current caregiver seems to be getting stressed out because —– my mom is sick.  um yeah.

If you are going to be a caregiver and work with hospice patients please don’t get annoyed and impatient when things get worse with their condition.

That is all.

The Worst Ever

Watching my mother dying from cancer has got to be the worst experience I have gone through in my life.  It was bad having her get diagnosed and going through surgery was terrifying – but this is horrible.

Some days I think I can handle it gracefully but more often than not I feel like I may evaporate or  combust.

At first I thought the experience was actually going to kill me.  Now as the days go on I realize that I will likely make it through but I may just feel like I, myself am the one that’s dying.

I’ve been thinking of blogging about this for quite a while but almost couldn’t face putting the words down.  There is so much to say I don’t know where to start and it’s so awful that I don’t always know if I can get it out.  So far the things that have sucked the most include -

• Buying what I knew was most likely the last Easter basket and greeting card for mom.
• Having my birthday that I am pretty sure is the last one I will spend with her.
• Realizing that I am 99% sure we have already had our last Christmas together.
• Buying what will be the last Mother’s day card I get to give her.
• Debating what else to give her for Mother’s day knowing that she really doesn’t need anything and won’t be around long to use whatever I got her (I settled on a plant, oil room infuser and chocolate)
• The recurrent thought and reality that she will never see or hold her future grandchildren.

Right now she’s mostly holding her own – not getting out of bed much if at all aside from using the bedside commode, showering (with help) a couple of times a week, and sometimes sitting in her recliner for a bit,  She is still eating and drinking but her appetite isn’t the same as it once was and she has definitely lost weight. Her cognition is getting worse and she often seems confused – but not the kind of confused where she doesn’t know who she is or who I am , etc. The most terrifying times have been when something goes wrong for whatever reason – once it was a bladder infection coupled with constipation, twice it’s been her reaction to morphine and one other time it was what we think is her reaction to having a tad to much of her other pain med on board – during these times she has slipped downhill rapidly – like to the point you think she may die that night/day.  She’s rebounded each time but it also seems like her baseline goes just a tad lower afterwords.

Often I think about the cancer multiplying inside of her.  I wonder where it has spread and what damage it’s doing.  I am not sure if it’s worse to not know and imagine all of the awful possibilities or if it’s better to have discouraging CT scan results telling us definitively what is worse.  For some reason I most fear it spreading to her brain.

Some days I think I can handle whatever is to come – but when we have one of these quick declines I flip out and feel like I can’t handle it at all.  I don’t get the dying process – is it going to be a downward slide where we don’t even notice each difference or will we just wake up one day and she will be totally out of it?  I dread the end lasting a long time.  I don’t want her to suffer and I don’t know how I will handle it if  I have to worry for months or weeks if “this” is “the day”.

The whole experience definitely gives me a deeper understanding of other’s grief and what people have gone through who have lost a parent- especially a mother.  I find myself seeking out those who have also gone through their mother dying – almost like knowing that others making it through this means that I will be able to as well. It’s odd to be facing this knowing that for a good deal of life this was my biggest fear.  When I was a child I used to feel almost paralyzed at times by the worry that my mom would die.  I remember in elementary school thinking how horrible it would be to be left with my father only and how I wouldn’t be able to make it without her.  Sometimes I still feel this way.  I try to remind myself that I can and will make it through and can even flourish when she is gone but I can’t shake the worry that my safety net will be pulled out from under me when she’s gone.  Although I am in my mid thirties I have always known that mom would be there emotionally to support me through anything and even that I could count on her financially.  If money was tight and I couldn’t pay rent all I had to do was ask and she’d be there.  I now worry that I am going to have something awful happen – like I will become ill or lose my job and not be able to find any way to have an income that will support me and she won’t be there to help and I’ll end up in a box on the side of the road.

Overall I feel good about our relationship and I am so glad that mom’s able to do hospice at our home.  Right now the only thing I feel like I will regret is not having asked her more questions about her past and her family.  I have a list of questions I could ask her now but I feel like she’s just not up to it and honestly I don’t know that I am either.  Maybe the anticipation is worse than actually doing it but somehow it feels like it will kill me to sit down and ask her the questions because that just makes it so.final.

I can’t bring myself to proofread this…. but now I am going to hit the Publish button… I just need to get it out there….

Photo Friday – My desk at Work

This one is sort of cheating as it’s WAY cleaner than my desk at home!!

Photo Friday – Beverages

Yummy!

Long Time Gone

I want to be a blogger… oh how I do.  I want to fit in with all the “cool kids” out there.  I think of things to blog… I religiously read other’s blogs… but I just don’t think I’m really blogging material. Blah!

Anyway I was just looking back through some old photos and realized there are a bunch from last year around this time as I was trying to do 365 photos of moi – I didn’t make it!  I came upon some that were actually from a year ago today… photos I had taken when we shaved all mom’s hair off.  They made me sad.  In a way I can’t believe it’s been that long.  That it was a whole year ago we shaved her head for the first time.  It seems like a few months.  But nope – she’s been doing this chemo crap for over a year now (ok so that’s not totally correct… the treatment she has done for about the last three months isn’t chemo but it you know what I mean).  I’m sad it isn’t all better, I’m sad that she has to go through this, I’m sad she lost her hair then – and again (on a stupid chemo that didn’t help even – all that hair loss for NOTHING!),  I’m sad that I don’t know what the future holds and it could be not so good.

I’m also thankful she’s here a year later.  Thankful it wasn’t worse.  Thankful I’ve gotten to spend time with her.  Thankful we made it to 2010 all intact.

The holidays were good – they were also hard too.  The worst part though was when they were over.  Christmas was good and I made it through the following week enjoying some of the things we had rushed to get ready for Christmas.  New Year’s came and went.  It was time to take down the decorations.  I cried.  I wanted to rewind and begin December over.  Part of me thinks I’m sad because of that constant worry that this could have been the last one with her.  There’s no real reason to think that (um aside from the fact that she has CANCER DAMNIT!) but it’s always just this little worry in the back of my mind.  She has another CT scan in late jan or early Feb…. I really hope it’s good news ’cause bad news is wearing me out.

Random sidenote – We watched My Sister’s Keeper tonight  – I don’t think it helped my mood.

Anyway my mood isn’t this bad all the time… just one of those nights.  Plus tomorrow it’s the appointment with the “counselor” at the RE.  ACK!

??????

Today was so good I was shocked that on the ride home I had nothing to report that had even slightly upset my mood.

I get home to realize bf and mom are arguing. Now he is saying he is moving out an she is saying she is moving into a nursing home. WTF??????

I am trying to maintain my composure.

Up or Down?

It feels a bit like life has been going to hell in a handbasket lately. Let’s just say that I have been so stresses/anxious/upset lately that my back decided to act unhappy (it does that when I feel like this) and I woke up sweating and panicked last night. Even taking a little helpful rx from the doctor didn’t really do the trick. I stayed home from work to try to get my physical and emotional pain under control (thus leading to more stress about lost income). I am feeling a bit hopeful it helped though – I chatted with one of my best buddies, went to an appointment with a new therapist (that I actually think will be helpful), and got some rest. The back is feeling way better (if you have back pain reading Dr. John Sarno’s books are a MUST!!!) and so is my brain. Right now need to get a grip on some more of this before divingfull force into ttc – but I feel like time is ticking away……

Been a long time..

So I fear this is gonna be a long one – thanks in advance for sticking with reading it if you make it to the end.

I’ve been overwhelmed by life and frustrated by my body lately (hah! maybe the story of my life!)  I saw the RE, began acupuncture, had a visit with the nutritionist (that was disappointing and not super useful but not so worth getting into right now) and then spontaneously started bleeding – something that NEVER happens to me.  I was excited!  Thought maybe something was working!  Then… the bleeding lasted…. a month…  just spotting and light flow really… but a month….

This frustrated me and made me more stressed than I was before.  It seems to have stopped now – but possibly still some spotting.  I am minimally anxious as mid-cycle bleeding can be a concern as far as endometrial cancer goes – and that’s what mom’s being treated for.  So that hypochondriac part of my brain is telling me I could have it too.  Blah!

Anyway the bleeding started and stopped – and I got overwhelmed by – taking care of mom, going on a trip for work/pleasure (the first time I have been away without her since she was diagnosed a year ago), having a family member visiting from out-of-town, getting a new dog, having said dog start pooping all over the house when he isn’t supervised, going out-of-town with everyone for the weekend. packing and moving all of mom’s stuff to my house, working, oh and most recently having the bf fall down two stairs and sprain his ankle and needing crutches and everything brought to him.  With all of this I got SUPER bad about taking the supplements, vitamins and even my regular old prescription medication.  My eating habits have also gone to hell and I’ve visited more fast food and other restaurants in the last six weeks than I care to admit.

I just can’t seem to get back on the ball.  The house is a mess – there is literally over ten loads of laundry to do and about five more that are clean and need to be folded/put away.  The garage is full of boxes that need to be unpacked – oh and my car got keyed by some jerk who was pissed about a parking spot and I now have to find time to take it in and get it repaired.

Typing this I feel like a huge drama queen with way too much shit going on!  It now makes sense why I feel so overwhelmed sometimes – but at the moment it’s my life and I have to make it all work.

I also recently found out about two more friends who got knocked up quick and easy.  This stung but I am trying not to focus on it.

Ok I am off for now… this got disjointed but I am glad to have at least provided an update!

Odds and Ends

Well, after choking on the 9 capsules of herbs the acupuncturist gave to me at least twice I finally realized it actually helps if I try to swallow them one at a time and make sure they head down my throat lengthwise instead of width wise! Imagine that! In the past two days I have accomplished taking all of my regular medications plus the prenatal vitamin and the 18 herbal capsules! I was almost going to throw in the towel when I was at the acupuncturist today but I decided to try to stick with the gobs of pills and see how it goes over another week. I am feeling glad I made that decision. Maybe because I think the herbs could be helpful but mostly because it makes me feel like I am doing something.

Speaking of doing something – for some reason I am putting off other ttc things I could be doing to help the process move along such as -  I could schedule that repeat ultrasound to see if they can actually really see my ovaries,  I could also schedule the “educational consultation” or whatever the hell they call the meeting with the social worker at the RE clinic, I could pick and order some sperm.  However, all three make me nervous so I am not doing them.  But I need to!!!!  Why do they make me nervous you ask?  Ok, I’ll tell you – 1) I am worried I will get all freaked and nervous again if they have trouble imaging my ovaries, 2) I am worried the social worker gate keeper lady will find some reason to say “hell no these people shouldn’t have a baby!” 3) Sperm is EXPENSIVE – and I am having a difficult time trying to decide what bank to go with and what traits/qualities/etc are the most important as it seems virtually impossible to find everything we want in one person.  (That’s a post for later!)  So instead I surf the Internet too much, watch reality T.V. and do retail therapy.  Why oh why don’t I want to do laundry therapy instead?!? Blah!

I am feeling pressure to find some cute way to end this post – but at the moment I can’t seem to.  In a way I it reminds me of all the diary writing I heard about when I was a kid – I never liked doing it and didn’t really – but if I did I felt like I should start with “Dear Diary,” and sign off with some cutesy Love, Me.  Well then for tonight – Love to all of you from – me!