Health and Caregiving

Where does a child’s anxiety end and a mother’s anxiety begin?

I have never considered myself to be an anxious person.  I’ve always been able to get through things relatively unscathed emotionally.  My daughter’s illness changed all that.  My parents’ illnesses also changed all that.  Now, I feel like I have a certain level of anxiety most of the time.  But, that anxiety is nothing compared to what my relatively tiny 9-year-old holds in her heart on an almost daily basis.

Actually, that may be an overstatement.  Maybe it isn’t an almost daily basis.  Maybe it isn’t even that often but every occurrence seems like a huge ordeal for me.  Or maybe sometimes her being upset about going somewhere or doing something isn’t anxiety but just plain old moodiness or tiredness or too much sugarness.  I don’t really know anymore, but I feel like I should know.  I feel like everytime something happens that could be related to anxiety, I should be doing something about it, making sure that she does not become a statistic.  She has been through so much already.  She doesn’t need to be feeling like she is not on her own side in life.  But, she is 9 years old.  So, how do I talk to her about it without making it something else that gives her anxiety?!?  Please, someone tell me.  Because at this point, I’m a little lost.

My daughter has been exceptional.  She survived an infant heart transplant, severe sleep apnea as a baby which led to a tonsillectomy/adenoidectomy, then a bump during a heart biopsy leaves her with a severely leaking tricuspid valve that requires her chest to be drained of fluid that had backed up and then several bouts of pneumonia and then an attempted repair that failed and probably led to her needing a pacemaker for irregular heartbeat.  She has quarterly cardiac clinic appointments where she has to get poked for blood, examined with gel and a probing device on her chest and abdomen.  So, to my rational mind, after all of that, what could possibly be scary?  What could possibly make you feel threatened?  Well, it seems that it is a lot of things.  Places where she doesn’t know anyone.  Places where she does know someone but for some reason feels like she doesn’t belong.  Math.  Sports that take place on a team.  Someone being late to pick her up from school.  Any change in classes and teachers.  Staying overnight, even with family and friends, without us there.  Sleeping in her own bed up until about six months ago.  Going to bed without someone going with her, even now.

So, what do I do?  I want to “fix” it, but I know that isn’t possible.  I am not a mental health professional.  And anxiety never really gets “fixed” it just is something people learn to deal with in a healthy way.  But, I don’t want to put some other thing on her to be “dealt” with like her chronic condition of being a heart transplant recipient and having a leaky valve and having a pacemaker.  She has to deal with so, damned much.  I just don’t want her to deal with this.  And maybe in some small way (or a large way), I don’t want to have to deal with this.  It is yet another thing on the long list of things to be “concerned” about, to be “aware” of, to know how to properly “deal with” to be sure it is not something we make harder on her in the future.  It is a lot.  For her.  For me.  For us.

I don’t know the answer to the question in the title of this blog post.  I don’t know what is her anxiety and what is my anxiety about her anxiety.  I may never know the answer to the question.  The best I can do is my best.  That is the best I can do in any situation.

DON'T QUIT

Health and Caregiving, Uncategorized

Tired but Wired

This is often my state of mind.  “Tired but Wired.”  I should make t-shirts.

So, what does this mean.  Well, I’m exhausted most of the time.  I work a job and a half (well, really a job and three quarters).  I take care of most of the household chores on a day-to-day basis.  I manage appointments and scheduling because I am the one with the busy schedule.  I don’t want to paint my DH out to be lazy.  He has a couple of jobs, but those jobs are long distance and highly intense for short bursts of time.  They are also jobs that I would say suffer from Parkinson’s Law – so, given deadlines, the work would be done in less time, but because it is often done without near-term deadlines, it expands to fill a lot of his time.  My job is more defined – I have teaching hours, office hours and then hours that I spend doing grading, prep, etc. but those are when I can fit them in.  My job suffers a bit from Parkinson’s Law as well.  So, we’re both working at home quite a bit.  Too much, in fact.

So, anyways, I am often feeling exhausted from everything I’ve had to do in a day AND staring down the barrel of a to-do list that is far too long to ever complete in the time provided for it.  I feel behind quite a bit of the time.  I often struggle with what I should be doing.  For example, right now, there are three loads of laundry piled up in our living room needing to be folded and put away, a load of dishes to unload from the dishwasher and more dishes waiting to go in, a mess on the dining room table to that needs to be dealt with (thrown away, put away, etc.) AND a pile of grading in my work bag that is late being handed back.  I currently can’t locate my video camera that has some presentations on it I need to grade.  I have an iPad that needs to be restored to make it functional.  And my in-laws are coming for the weekend and their bed in the guest room needs to be made.  I need to clean the bathrooms.  The list goes on and on.  And this is not unique.  This is my daily operating.  And that list of things makes me WIRED.  I feel tense and anxious and like I need to be constantly DOING.  But, I’m also TIRED.  Yesterday was my 13 hour day (with one two hour break in there) and I have a headache and my back hurts and I just want to curl up with a TV show and recover.  But, I teach in three and a half hours and I volunteer in my DD’s classroom in an hour.  And…and…and…

So, yeah, I ‘m both tired and wired.  I’m exhausted but anxious.  And I feel a little stuck.  I do have summer coming in a month.  During summer, I am mostly wired.  I get bored easily and feel like I NEED to be doing things.  But, I also don’t get much done.  It is a strange set of circumstances.  But, this summer, I plan to be more purposeful in REST and in WORK.  So, I’m going to plan times for both. I need to work on a course redesign I got a grant for and I have a few other projects I would like to get done during the summer.  But, I also realize that I need to have some DOWN time.  When I’m not working on anything.  When I can just decompress.  Sleep.  Relax.  Read.  Enjoy.  If I am not purposeful about that, the summer will be gone and I will still feel just tired and wired.  I want to feel rejuvenated and purposeful instead.  It isn’t quite as poetic, but it sure would feel better.

Health and Caregiving, Life Updates, Uncategorized

School Happens

Every semester it is the same thing.  I start out so on top of things, convinced I will be able to keep up with it all.  Then, slowly, things start to spiral out of control.  It usually happens around my house.  Piles start to form.  Papers, mail, clothes that need to be put away, stuff.  Next, grading.  I start to find myself with piles of papers or emails with things to grade.  Oh, and the to-do list.  That starts to pile up as well.  Emails get backed up.  Then, curve balls get thrown at me, but I can’t adjust because of all the piles.

This semester has been a bit better.  I haven’t let the grading pile up too badly yet.  I’m relatively on top of class prep.  But, oh there are piles.  My dining room table.  One of the couches.  Bean’s desk.  Really, any flat surface is fair game for a pile to form.  And they don’t even make sense.  On the dining room table right now is a Sorry game with a magazine on top of it and an envelope on top of that.  There is a ball next to that pile and then another pile mostly of mail items that have been opened, but need to be dealt with in some way.  Then, there is my purse that I’m not currently using because I’m using my work bag instead.  There are some little toys and jewelry from my DD’s birthday party two weeks ago.  On the couch next to me there is a set of “scratch off” cards and little stencils that go with it, my work bag, my DD’s princess bag that she wanted to take to school instead of her backpack today, a stuffed giraffe…

pacing a heart and myself

We found out last week, after a last minute trip to Stanford on Wednesday (my long day at work) that my DD needs a pacemaker.  It was not totally unexpected and the news of how they could do it was better than I thought it would be (no open heart surgery, just a small incision), but it still is a bit of a disappointment.  We will only be in the hospital over night (or at least that is the prediction – last time they said that we were in for four days).  It will mean more doctor’s appointments post-surgery.  It will mean a new thing to deal with.  And it is a new thing in her heart that isn’t working.

I am very happy to have this weekend off to catch up on housekeeping and class prep.  I am very happy to have a lot of weekends off this semester.  I need that.  For sanity.  For the sake of my house and family.

So, life is moving on.  I’m going to try to pick back up with the blogging.  I feel the need to write. Now if I can just MAKE the time!

 

 

Health and Caregiving

A Healthy, Happy Life – What’s it Take?

These last few months have me pretty pensive.  I was sad for my mom.  She has lived the last few years in a pretty lonely and unsatisfying condition.  And now that her life has ended, I just wanted MORE for her.  More friends.  More fun and enjoyment.  More life.  When we are living, we should be LIVING!  So, it has me thinking.  Because I had my DD so late in life, I will be aging as she ages.  And I want to age well.  I want to be healthy enough to live.  I want to have friends and be social and have fun.  I want to have fun with my family and enjoy doing things with my DD.  But, that will require that I am healthy.  So, what’s it take?  What do we need to do to stay healthy and happy in our late 40s (where I am now), our 50s, our 60s and beyond.  After all, I will be pushing 60 when my DD graduates from high school (good Lord…) and I want to still be active and enjoying my life with her as she goes through college.  I realize I won’t be able to do what the 38 year olds are doing (and let’s be real, I probably won’t want to be doing what the 38 year olds are doing), but I want to be a good mom who is there for her and who can still do what needs/wants to be done.

So, it has me thinking…what do I need to do RIGHT NOW to make this happen?  What can I do EACH DAY to make sure that I am ready for that future life I want to lead?  Let’s see:

Start building a stronger network of friends.  I am working on that.  I have three friends currently who I feel like are THERE for me.  Two have children close to my DD’s age and I’m hoping we can all stay friends throughout their childhoods and on up to see them as grownups.  But, I need more than that.  I want a wide network of friends.  I have friends but I feel like I’m not very good at making time to spend time with them (especially those who don’t live here where I live).  I’m not good at setting aside time to really enjoy them.  So, that is something I need and want to work on.  Girls weekends.  Family trips together. In addition, I want to be more active in my church.  I want to establish better friendships there as well.  I want a community.  So, that is one thing that I need to continue working on as I go through this year and beyond.

Be more healthy.  I am not talking about losing weight (although that would probably be a good idea as well), but just exercising and eating better (more regular meals, less coffee, more water, etc.) and taking better care of myself over all.  I need to make a doctor’s appointment to get an annual exam (which I haven’t had the last couple of annuals – I use my DD as an excuse, but it really is just something I dread…I don’t want/can’t take any more bad news health-wise for anyone, but especially ME, so I avoid it).  I need to get into the dentist and get my broken tooth fixed and my teeth cleaned.  I want to start doing yoga regularly.  I want to do the a 21 Day Fix challenge to get my sugar and carb levels under control and start developing some muscle mass again.  I am currently suffering from what I am pretty sure is a Guttate Psoriasis.  My strep throat a couple of weeks ago must have triggered it.  And I know that not eating healthy is a contributing factor to these maladies.  I also need to model healthier behaviors and habits for my DD.  She is going to need to eat healthy with her heart issues.

Live it up!  I often turn down opportunities to go out and do things and have fun.  I’m not sure why.  I want to spend time with my DH doing fun things.  I want to do fun things as a family.  I want to enjoy each other and our lives to the fullest extent possible.  We have a bad habit of sitting around when we have time with each other.  On our computers or iPad.  When we should be out and about doing fun activities with each other.  So, that is what I want to focus on – making memories.  And lots of them.

Those three will be my main focus to start this focus on the future me by focusing on the present me.  I will do these things in honor of my mom who often said she wished she had done more when she had the chance, who longed to have a community of people around her and who was constantly telling me to take care of myself.  I love you Mamma!

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?

Health and Caregiving

World Ovarian Cancer Day

WOCD_Sharable_Graphic_square_NoYR

Today, I’m doing double duty and posting to spread awareness of ovarian cancer and honor my mom since it is Mother’s Day weekend.  My mom has suffered several bouts of cancer and is currently in hospice because after her eighth or ninth round of chemo, it stopped working on her tumors.  She did a round of radiation, which slowed the progression and has now chosen to let it take its course rather than torture her body with more “treatments”.  But, one of the cancers she got that was particularly bad and probably was the source of some of her current problems, was ovarian cancer.  She didn’t catch it until it had progressed quite a bit and this was after being a 15 year survivor of breast cancer (so it was not being watched, but it is just that insidious).  My mom was lucky as ovarian cancer has the lowest survival rate of all gynecological cancers.

I encourage everyone who is a woman or has a woman in their lives to learn the symptoms of ovarian cancer (which can often be dismissed as something less serious), the risk factors, and how to be an advocate for yourself in the case that you think you or someone you know are at risk.

It isn’t what anyone wants to deal with, but catching these things early on and knowing the realities and options available is important.  So, educate yourselves and spread the word on May 8 – World Ovarian Cancer Day!