Health and Caregiving

When Life is a Roller Coaster Ride

Everyone’s lives are full of ups and downs, but sometimes I feel like I got on this one:

scary roller coaster

and now I can’t get off.  It is up and down and upside down and no real flat spots to speak of.

I’ll speak below about how I deal with these roller coaster rides, so you can skip the explanation of why I’m feeling this way if you’re just looking for ways to deal with the roller coaster ride.

I had a good last week.  Things were moving along fine (so, perhaps there was a flat spot…or it could have just been the long uphill pull before the drop…when you can enjoy the surrounding view and relax a bit while still anticipating the coming drop).  I called my mom tonight expecting to chat about where we should go to lunch tomorrow for my birthday and my sister answered.  It seems that my mom fell last night, then again this morning.  They called my sister’s cell last night and left a message that it happened, but didn’t bother calling my sister’s home phone or my phone to actually speak with someone.  They did call the paramedics, even though they aren’t supposed to do that – they are supposed to call hospice.  So, the paramedics came and then left when they realized she was a hospice patient.  So, my mom probably was upset and no one stayed with her or checked on her until this morning.  She had fallen again.  This time, she had hit her head on something and had bruises.  My sister went over, was told they had called hospice and so she waited and waited and waited…and almost two hours later she went to check on who they had spoken to and found out they had not actually called hospice.  In addition, when things started to be sorted out, they realized no one had given my mom one of her important drugs in four days because they did not have a “doctor’s order” on it.  There was a note on the bottle to speak with the hospice nurse about getting that order, but no one bothered doing that or telling anyone they weren’t giving the drugs – just didn’t do it.  Cost for one month of them overseeing medications to avoid mistakes – $700.  Per month.  And they not only didn’t give her this one because of doctor’s orders, they also just “made a mistake” and didn’t give her the right amount of Senna, which she takes to deal with chronic constipation.  So, she won’t be going back to this place – $6000 per month doesn’t get you much in care I guess.

So, now I feel guilty.  Because I pushed for this move.  Along with everyone else, but I did push for it.  I really thought it would be better for her.  And she did seem to be doing well.  She had talked to people.  She was eating meals with people.  She seemed happier.  Less stressed.  Less depressed.  But, all that has ended up not being worth this.  Now, she could have easily fallen at home (she had a few times before – once when I was there even).  But, someone would have been there with her for the rest of the night.  She probably would not have fallen again because someone would have been watching her closely.  But, we couldn’t find caregivers who were consistent or who cost less than $200 per day and that was without any consistency (e.g. they could just say, “can’t make it” and there was no backup).  So, what is there to do?  Right now she is at my sister’s in a hospital bed in her living room, basically.  We will revisit board and cares where my sister lives (giving her a lot more attention hopefully). It just sucks that care for the elderly sucks and is so expensive…even the expensive care sucks.

My mom has been relatively non-repsonsive all day.  She slept all day, did not seem to recognize my sister, refused to drink water or take anything.  So, this may all be moot.  Although, my dad had a lot of these episodes.  So, she may wake up tomorrow feeling better.  It may be high doses of morphine they gave her to deal with the pain from the fall.  But, the nurse said it could also be ammonia building up in her system from her liver cancer.  So, right now, I’m planning to head to my sister’s tomorrow for my birthday “celebration” and I have no idea what I’m going to find there.  It is really disconcerting and sad and guilt-inducing.

I also found out that my MIL has to have a lumpectomy (possible mastectomy, but it sounds like a lumpectomy at this point – prior to meeting with surgeon).  She had a tumor that was Stage Zero.  I had never heard of Stage Zero, as my mom’s was always quite a bit more progressed by the time they found it.  So, it looks like it isn’t too threatening at this point, but may be an early indicator.  Just another drop on the roller coaster.  This one, a relatively short drop without any upside down, but still a drop.

So, after a relatively flat ride for the week, I’m back on top of the scary roller coaster, anxious about the drop that is coming and wondering if it will include turning my world upside down or not.

I’ve been here before, many times.  When my DD was sick in the hospital, there were days, sometimes weeks, when I would feel this way.  Anxiously dreading what I would wake up to.  But, you have to go on.  So, here are the ways I deal with riding the roller coaster:

(1) I hope for the best, but prepare for the worst.  It is an old adage, but it stands true.  Hoping for the best allows me to get through the day/night.  Preparing for the worst makes me think ahead about how to deal with things if they don’t go the way I would like them to.  Sometimes it means you have to deal with something you’ve been putting off or you might have to seek out help from someone (so, for example, there were a lot of times we were told we “might” get released from the hospital, but I always had to prepare for it not to happen).  Whatever it is, being prepared allows you to deal with the worst better when it happens.  It is not pessimistic, it is simply realistic.

(2) I try to do what I can to take care of myself.  This is hard sometimes when the roller coaster is going fast and furious.  Who has time to eat meals or go home to sleep.  But, I took to heart what one of the nurses told me when my DD was in the hospital – she told me that leaving the hospital and getting a good night’s sleep and a shower at the Ronald McDonald House would make me a better mom/advocate when I was there.  And the nurses were there to watch her and I was only a few minutes away.  Its like the flight directions – put your own oxygen mask on first, then deal with your caree’s.  Because if you don’t, neither of you will be in any shape to deal with things.

(3) Take precautions.  If you are someone who gets sick on roller coasters, you probably want to take some precautions before going for a ride.  You don’t have the choice to avoid the ride, but you can take some motion sickness meds (which to me is doing the two things above), you can take a barf bag so you don’t throw up on everyone else, and you can make sure you aren’t riding alone (establish a support system and don’t be afraid to ask for help when you need it).  Let people know what is happening instead of “toughing it out” or “not bothering them”.  People like to help.  Let them.  It can help you survive the ride.

(4) Look outside of yourself.  I am a believer, so I pray.  A lot.  Sometimes I feel like I’m not even sure what to ask for, but I just place it in God’s hands and take a rest from carrying the burden.  Sometimes I know exactly what to ask for and I ask for it and sometimes what I ask for isn’t given, but something else that is better or more appropriate is given.  If you aren’t a believer, you might consider meditation or simple breathing techniques.  Anything that allows you to concentrate on something other than the ride itself and what might be coming.

So, there are my three things I try to do when the scary roller coaster starts raging.  It seems that I may need to start working on making sure these things are in place in the upcoming weeks.

What about you?  What do you do when the roller coaster of life starts getting a little out of control and won’t let you off?

Six Word Saturday

Six Word Saturday – Happy Birthday

Birthdays should be celebrated not denied.

As someone who is reaching an age (okay, is probably well past the age) where people want to start “forgetting” their birthdays or lying about the number of birthdays they’ve had or whatever it is we do as we age, I’m going to buck the system.  I’m 47 as of yesterday.  I celebrated with dinner out and then froyo (we’re a wild bunch, us girls).  I’m happy to see my 47th birthday as a relatively healthy individual with a happy marriage, a great little girl, strong family connections, etc.  Not everyone gets 47 birthdays.  None of us are promised a certain number and we don’t know what number will be our last.  But, every year brings something new, something exciting, something fun, something hard, something boring, something old…and I don’t want to miss any of that.

So, I’m celebrating, not denying it.  I had another birthday.  My 47th.  And life is pretty good and hopefully getting better.  And I hope that those around me will have more birthdays to celebrate as well.

Here’s to your next birthday.  May it be celebrated!

Five Minute Friday, Uncategorized

Five Minute Friday – Ten (on a Saturday)

Participating in another Five Minute Friday this Friday.  I’m a bit late because yesterday was my birthday and I went out with friends.  I started this blog two years ago and its been a bit of a chaotic mess of ideas on here, but I think I’ve finally found some focus and hope to get that going in this new year of mine.  But, Five Minute Friday will stay as I love this weekly focused writing exercise and reading other blogger’s posts on the subject matter.  So, without further ado:


 This week’s prompt is a little different.  The number “ten”.  So, here goes:

Ten.  It is probably one of the most popular numbers in the first 100 to be sure.  Everyone loves a good “Top Ten” list.  But, it is also a milestone marker.  Making it to ten years – in a job, in a marriage, past a diagnosis, etc. are all to be celebrated.  But, in the grand scheme of things, ten is not all that big of a number.  Especially when you’re approaching five of them in your lifetime.  Ten years seems like such a significant amount of time, but its only 20% of my life to this point (almost).  It is only 1/5 of all the time I’ve spent on this earth.  That’s a bit striking.

But, ten becomes almost more meaningful at this point because I am approaching an age where every additional 10 years is not a guarantee (not that any of them are guarantees, but at some point, the likelihood starts to diminish from what it used to be).  So, it seems particularly important to make every year count.  Ten years from now, my DD will be sixteen.  With her health history, even at the ripe age of six, there are no guarantees.  So, it has made me only more aware of the importance of time spent in quality and meaningful activity and togetherness and enjoyment.  Not that I want her to feel the pressure, but I feel it.

Ten.  It is a small number in the grand scheme of things, but it can be a big deal when there are no guarantees.