Uncategorized

Losing a Mother…

Well, my mom has passed away.  Those who follow this blog know that this has been coming for a long time, so it isn’t totally unexpected.  Although, she was doing pretty well up until a few days ago when she fell.  After that, she never really recovered.  They think she may have had a stroke.  She has been pretty non-responsive for the past two days.  We knew it was coming.  But, it doesn’t necessarily make it any easier.  I feel a bit numb.  I am sad about my mom not being here anymore, but I am relieved that she is out of pain and suffering, which made up a lot of her life in the last three or four years.  Sometimes it was dull pain and suffering that was in the background, but sometimes it was overbearing pain and suffering that was tough to watch and I can only imagine how difficult it was to experience.  I am glad that it was relatively quick after she took a downward turn, rather than stretching out for months like with my dad.

I am not driving down to my sister’s tonight.  I would have to load up my 6 yo and my dog and drive down and there wouldn’t be much for me to do.  Hospice will come out and deal with the logistics.  And then, my sister will probably need to sleep, since she probably has not slept much for the past four days.  At least not slept well.  It is a lot to deal with and I’m sure she is exhausted.  But, at least she will now have a bit of a rest.  There will be a lot to do with my parent’s house and such, but that can all wait a bit.

I’m not sure what to do.  My mom, like my dad, did not want any services.  Although I know why she chose that, I do feel that it would be easier with a service.  Some closure would be helpful for those of us still here.  With it being this way, it is left so open…

I think I’ve mourned for my mom as she’s gone through these illnesses and lost a bit of herself here and there.  I also have felt bad for her as she had said repeatedly that she was ready for it to be over, that she was tired.  So, I feel, in a way, this is something to celebrate.  I know that she had been reading the Bible and I think she was comfortable with leaving this earth and her broken body.  I believe that she is in a better place and she is relieved and happy.  I just hope that my sister can also feel relief and happiness.  And I hope that I can find a way to find some closure without services and without any real action of closure.

But, I am glad that we had the time we did with her.  Especially the time we spent this summer.  I don’t have pictures of that recent visit, but here are a few from the past few years:

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Christmas_Eve_puzzle_with_Grandma.

 

 

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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

And so it begins…officially summer.

I know that I’ve talked a lot about summer already but today is what I consider to be my PERSONAL start of summer.  We dropped my husband off at the airport in Reno this morning and he will be in Michigan for seven weeks working a summer camp.  So, I’m officially on my own.  Which is what the summer is usually about for me (since this is his 15th year working the camp – not always seven weeks, but almost always).  In a way, it is a productive time for me, especially when my DD has activities going on.  But, this summer is going to be a bit different.  Since my mom is having to figure out new caregivers (what a long, strange trip this has been) or hopefully will be moving into an Assisted Living facility later in July and I’m trying to help out by saving her some money by staying with her BUT my DD goes a bit stir crazy at my mom’s after a few days (rightfully so – it is hard to do much of anything while staying with her because she can’t walk well anymore and gets tired very easily), I’m trying something over the next few weeks.  So, here is my schedule:

This coming week, we’re doing Vacation Bible Experience at our church.  I say “we” because I volunteer.  It has been, by far, my DD’s favorite week of the summer for the past two summers.  Hopefully that holds up this year.

Then, a week from tomorrow, we will head to my mom’s house to stay with her as it is her caregiver’s last day (she is traveling for the rest of summer and then concentrating on Real Estate selling when she returns).  We are going to stay there that week and then head for Bakersfield that Friday.  My SIL is hosting a Fourth of July BBQ and pool party at her house and we’ll stay the night in a hotel on Friday, hang out with my in-laws on Saturday, go to the party on Saturday night, stay in the hotel again on Saturday, hang out a bit more with my in-laws and then head home WITHOUT my DD.  I’m going to leave her there for that week to hang out with her baby cousin and her Gigi and Papa and Aunt and Uncle!  She seems super excited about it and it will give me a chance to be at my mom’s for another week without the DD guilt.  🙂  We’ll go and pick her up the following Friday and possibly stay another night there if my mom feels up to it.

So, we’ll see how all this works out.  That saying about the “best laid plans” is definitely forefront in my mind right now, but I’m going to go ahead and go for it.  Wish me luck!

 

Five Minute Friday

Five Minute Friday – World

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I am participating in another Five Minute Friday Party this week.  Join us over at Kate Motaung!

World.  It is a word that means something big, but our world can also be quite small if we let it shrink.  I’m caring for my mom again this weekend and I see the way her world has shrunk down to almost nothing as of late.  It is hard to watch and hard not to pressure her to see beyond that small world she has shut herself into because of pain, depression and suffering.  I want myself to always see the world beyond my own.  The world of pleasure and joy and enjoyment is still possible, even if only in a small way, but we have to seek it out at times.  It doesn’t always come looking for us.  Sometimes we have to seek it out.  I feel like my mom has given up on that seeking.

So, I try to remind her of the things that brought her joy (we went and got an ice cream cone last night even though she was feeling nauseated, she ate the whole thing).  We will go for a drive today, even though her back may hurt riding in the car, it also hurts at home and she loves to go for drives.  But, she so easily becomes trapped in her smaller world of pain and suffering and forgets there is something out there she enjoys and can still do.

It is important for us all to remember that we have been given the ability to experience joy and we should do that whenever we can.  We too often focus on what we are suffering.  Let’s focus on joy.  Let’s make our world about joy.

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That’s it.  My Five Minutes is up.  Where is your world this week?

Tuesday Truth, Uncategorized

Tuesday Truths

Tuesday TruthWell, this week is my first official week of summer vacation.  I finally have a few hours in my house alone (we’ve had house guests for much of the past two weeks) and I’m in the midst of doing a power clean of our garage because we are getting a freezer (thanks to my in-laws, who gave it to us as a Christmas present, but we didn’t have space for it in December – we decided to take the jump and clean out for it while they were here this time and it is being delivered tomorrow).  I’m almost done with grading for Spring 2015 and I’m already thinking about what I want to do Fall 2015.  My DD gets out of school on Thursday at Noon.  I’m trying to make my backyard look like something other than an empty lot that folks have used as a dumping ground.  If this post does not make it obvious, I am trying really hard to catch up on things I’ve been putting off forever and then settle into summer in a better place – both literally and figuratively.

So, Tuesday Truths this week include:

An empty house is a gift.  I love hosting people in my home.  I love being able to visit, but still be in my own home.  But, an empty house is a real gift.  I get to watch what I want to watch on TV (mostly Hallmark Movies and Mysteries), clean when I want to clean, eat and drink what I want to when I want to, etc., etc.  I realize that I need alone time as much as I need together time.

Summer laid out before me is both bliss and pressure.  I love the start of summer.  So much opportunity.  But, that opportunity also presents pressure to make sure you don’t waste it.  But, I also need down time.  So, my attempt this summer will be to make both memories and time for relaxation.  Right now, I’m trying to figure out how to give myself the gift of time while also giving my mom (who is in hospice) the gift of my time while also giving my DD the gift of my time.  There is only so much time to go around, so I have to try to balance it.

Yards are nice, but a lot of work and cost.  I love our backyard as a concept.  It is big.  Lots of open space.  Not a lot of grass, but a nice little patio and a nice little plot of grass, then a really big area that used to be covered in bark with some nice plants interspersed.  Our landlord provides yard service.  But, we had a pool on the lawn for most of last summer and it killed the grass and it never really came back.  Then we got a puppy who eats everything and takes stuffed animals out there and strews them about.  We aren’t yard care people either, so there are leaves all over on the borders and the bark has decomposed and now its dirt and weeds.  I just talked to the lawn guy and he basically said the lawn is dead and there is too much dog poop back there to deal with it.

I get what he means.  We don’t have a regular schedule for picking up dog poop, which has to end.  So, I’ll put that on my list of things to do each week.  It is easy enough if you do it once a week, right before the trash pick up.  So, I’ve got to put it on my routine chores and just do it.  I’m going to get lawn seed and try to regrow the lawn where it is dead.  They are weed eating for me in that area and I’ll get the leaves picked up that are piled up.  I got string lights to hang back there and moved my bistro set from my front porch to the back patio and got the old BBQ out of the way (my husband got a smoker and basically uses only it now, so we had this big gas BBQ just taking up space on our small patio).  It could be a great place to enjoy the shade (there is a big tree back there) in the summer months and I could set up some fun play things back there.  Maybe a pop-up over in the non-shaded dirt/weed area and I’ve considered getting a plot of fake grass from Costco to put over there as a play place for my DD.  So many ideas.  Not enough money, energy or motivation.  But, as I said above, summer is laid out before me and the possibilities are endless.

Those are my truths for today.  It is almost time to go pick up my DD from school and I’m a bit sad as I’ve enjoyed the solitary couple of hours since my husband went to work.  But, alas, I can’t be alone forever.  The back lawn is cut down and they even weeded over in the open area.  The garbage and recycling are both completely full to overflowing (my in-laws always produce a lot of garbage and recycling when visiting – its a mystery how it is so much more, but it is), so I’ll have to wait until tomorrow to pick up the dog poop and leaves and pieces of toy strewn about by the puppy.  But, hopefully the yard can be making a comeback by this weekend.

 

 

 

Tuesday Truth

Tuesday Truth

tuesday truth

Well, today’s primary Tuesday Truths are all about sickness and hospitals.

First, it sucks to be sick.  I have some thing going on with my throat that has caused laryngitis and coughing and just misery in general.  Coughing makes me tired and relatively sleepless and laryngitis makes it difficult to teach and talk on the phone or talk to people in your house.  Basically, anything.  So, yeah – that’s where that’s at.  Hopefully my voice will soon return to full strength and this cough takes a hike.

Second, hospitals are exhausting.  I spent all day yesterday in the hospital for my DD’s annual heart biopsy.  She did relatively well, but it is still a long, long day.  We arrived at 7:30 a.m. and didn’t leave until 3:30 p.m. and in between we dealt with pre-op upset, post-op upset and just general frustration on hers and our part.  Trying to keep a six year old laying completely flat for four hours is a bit ridiculous if you ask me, but it is what they want us to do to keep her from bleeding at the access sites.  And she gets super frustrated and we get super frustrated and at some point, I just kind of give up and hope for the best.  Everything went okay.  The sites look fine today.  So, I think we did a good enough job.  Her rejection level was 1A which is a bit of a disappointment after the last few zeroes, but the NP says that is basically the same as a zero (which is obviously not true or they wouldn’t have a zero and a 1A), but we’ll take it.  It means no steroid treatment or change in meds.  So, we’re good.  Everything else looked good as well.  So, hopefully another year before we have to go through that again.

Third, having a sick, aging parent on hospice sucks.  My mom was here all weekend and she was considerably weaker than the prior weekend (just four days later).  And since she went home on Sunday she has gotten progressively worse.  Yesterday she didn’t really get out of bed.  My sister went down there today and says she is not making a lot of sense and seems very disoriented.  She is weak and now they want to get her a hospital bed.  Her caregiver seems to be a little low on the caregiving department since she says she can’t help her get into bed, which I was able to do this weekend.  So, now we may have to look for someone else OR we just need to convince my mom to go into assisted living, which she will hate, but which will probably be good for her.  I’m exhausted after taking care of her the last two weekends not because of having to help her move around, but more because of her emotional state.  I was also getting sick, so I didn’t feel good this weekend, and I think it all caught up to me this week.  Hence, my loss of voice.

So, that’s it – my Tuesday Truths.  Not much positive here, I know.  Its been a rough weekend.  And it has continued into the week.  But, I’m hoping things start to look up.  Maybe my voice will come back, hopefully this weekend will be without a hospital visit AND my mom will get what she needs and be more comfortable.  And, I hope to get some sleep.  And, get some grading done.  And, finish cleaning/organizing my house.  And, go to the fair.  And, read some books.  And, just R-E-L-A-X.  Yeah, right.  What about you?  What’s your Tuesday Truth?

Six Word Saturday

Six Word Saturday

Quality or quantity of life – choice?

My mom is with us again this weekend.  She is having a much worse weekend than last weekend, and that makes things hard.  Both hers and my dad’s older age have not been much in the area of quality and it makes me wonder.  If we had a choice or if there IS a choice.  I mean, I realize that my mom’s cancer wasn’t a choice.  But, her pursuing treatment after treatment over the years, even with very little promise of positive outcome was her choice.  And she did it.  She suffered horrible side effects, painful surgeries, loss of body parts…more than once.  And so she is here with us, but at what cost?

My dad hung on for quite a while through his dementia.  He would NOT have wanted to live the last year of his life the way he did.  He probably would have chosen to end it earlier than that, given a choice.  But, he was not.

There is now a bill moving through the California legislature providing for legal assisted suicide.  I support it.  I think that in our society, we focus too much on quantity of life and not enough on quality of life.  That is true always, not just for those with terminal illness, but it is especially true for those with terminal illness.

No one know the amount of pain and suffering that one will have to go through to make it to the end, but although I support the legislation, I also don’t know if I could ever make that choice for myself.  With my mom, there have been good intervening years that she may have missed given some of her early prognosis.  So, who knows what will happen?  Medical advances are being made all the time.  But, I do think that for older individuals who are satisfied with their lives and are given a prognosis of pain and suffering, whether long or short, this option is a good one to have available.