No Room for Error

I’m just sitting here thinking about the holiday season.  It seems as if every year it gets busier and busier and more frantic and people do stupid things because they have too much on their mind.  In the week before Christmas I was almost run down 3 times by cars that almost went through red lights as I walked across a busy intersection on the green light.  I also almost got run down by a reckless driver who backed out of a parking spot at full speed without looking.  I had to run to avoid getting hit.

When our minds are preoccupied, accidents can happen.  We just don’t think.  Not only is it more evident at the holiday season but I think that we who are caregivers can also be so preoccupied that we don’t think straight.  When I talk to any caregiver the number one complaint is how tired, how exhausted they are.  We all know that exhaustion causes us to not think straight.  We can make mistakes without even realizing and mistakes in caregiving can be deadly.

Where am I going with this??  Well,  I have had two incidents happen in looking after my Mom that could have had very adverse reactions.  Many caregivers are also the ones who dole out the medications for the elderly one in their care.  It’s a daunting job and a very serious one.  I look after ALL my Mom’s medications most of which are in blister packs but she also has insulin for me to manage and to administer, nitro patches to remember to put on and take off, blood sugars to monitor, extra medications which are not in the blister packs to give, eye drops to give, and ointments, sedatives, laxatives etc to give.  Sometimes medications are changed mid-month and that means removing a pill from what she gets in the blister pack or adding a pill.  I find all this extremely overwhelming and scary.  Especially after 2 mistakes.

A few weeks ago I administered a dose of insulin only to discover it was an old pen that I was saving because it had a small dose of insulin in it left that I was going to use if her dose went down.  Unfortunately, the pens are only supposed to be out of the fridge for 28 days.  I had no idea how old this pen was.  I panicked royally.  Was the dose I gave going to be effective or was it no good?  Do I give her another dose to cover in case it is no good??  What if her blood sugars drop severely and she falls during the night?  Thank goodness I am blessed to be part of a program where I can talk to a nurse 24/7.  So at 10pm at night I called very upset.  The nurse assured me it should be OK and not to give her any more.  I was assured but only to a point.  It was basically a sleepless night as I kept a watch on Mom to make sure she was OK.  I have learned my lesson.  I do not keep partial pens anymore.  I dispose of any I am not currently using immediately.  That was incident number one.

Incident number two happened just the other day.  We now have a palliative care nurse who can prescribe medications and she prescribed 2 new medications for Mom.  When I picked them up I was in a hurry ( yes, there it is)  and when the cashier asked if I wanted to talk to the pharmacist about these new drugs I declined, saying I would just read the info that came with the pills.  Well, no info was with the pills.  So I looked them up online but was confused a bit between the two and did not fully realize the dangers of one of the drugs.  It was a drug that was NOT to be stopped once started and only gone off of very slowly.  I neglected to read that.  The one night Mom was having trouble so I asked her if she wanted to take one of her new pills.  She declined.  ( She would rather take 100 different vitamins than a prescription pill)  I thought that she could take this pill just whenever she might need it.  The nurse who came to check on Mom ( one comes every week) took a look at the new medications when I told her about them and warned me severely about stopping this particular drug.  In my exhaustion and rush I failed to get the proper information on a new drug for my Mom which might have had dire consequences had I given it to her.  I shudder to think what might have happened had she not been so stubborn about taking new prescription pills.

I guess what I am trying to say in all this is that we as caregivers have no room for error.  Our elderly loved ones are at our mercy and we have to be so careful in what we do each day.  We have to be on top of things, we have to be alert, we have to be informed.  We can’t second guess things.  As I said before it is a daunting job.  And it scares me half to death.  If I did something to cause my Mom harm even by accident I would be forever upset and it would be hard to forgive myself.

I guess that after these incidents I realize just how important our job is and how important it is for us to take care of ourselves as caregivers.  We need to check, check, double check, triple check.  We need to read up on all the medications, their side effects etc and we need to access the supports in our lives like the doctor, pharmacist, nurses etc to get the full picture of what is going on with our loved one.

Having autism,  can make this a very overwhelming affair but I also find that having autism does have it’s positives.  I run my home like a nursing home.  I have alternate plans for care, I have phone numbers posted everywhere,  I have all mom’s agencies info in one place by the front door for any care person to access.  My strong sense of organization comes in handy and my attention to detail ensures that I go over everything a number of times….. Most of the time!  It’s those blips in the system when I am overwhelmed, preoccupied, distracted that can spell disaster.

Caregivers,  look after yourselves.  Look after yourselves well.  Get all the help you can.  And always double check.  And if you’re still not sure – triple check.  As I said we have no room for error.

The Decision I Dread to Face

Yesterday evening as I sat  at the computer in my room, I heard a faint cry from my Mom calling my name.  I went to see what was up and found her down – halfway down on the floor of her bedroom and hanging onto the bed unable to get up.  My brain says, ” Time for hyper -vigilance again”.

As I see her struggle more and more with her mobility I know I must face THE DECISION.  Do I put her in a nursing home or do I continue to look after her at home? ( hopefully with added support).  We put Mom’s name on a list for a nursing home here in town almost a year ago.  They told us then it would probably be about 18 months until a bed was available.  Time is ticking.  I know one of these days I am going to get a phone call from the nursing home telling me they have a bed.  They don’t give you much time to make a decision and if I choose to say no to the bed I am penalized big time.  I go to the bottom of the list and that is after a 6 month waiting time when I can not apply to put her on a list.  What to do?  What to do?  I desperately want to look after her at home.  She desperately wants to stay here at home, her home.

As a kid, your parents have all the power.  They are the ones that make the decisions concerning your life.  Suddenly, I am in a position where I am no longer Mom’s kid.  I am her caregiver making crucial decisions about her life. The details of her life are in my hands.  I am suddenly the parent.

Me and decision-making don’t get along.  My autistic brain struggles terribly with decisions of any kind.  My brain hurts when I have to make a decision.  My brain often shuts down when I have to make a decision and then I go into procrastination mode.  When I think about it, it’s like a thousand mosquitoes buzzing around my head, each with a separate facet of the decision to be made.  They don’t stay still, they continually swoop around my head making it impossible to focus on the right decision to make.  Too many details swooping around,  too many options.  Why can’t it be something at least a bit simpler like do I have regular tea or decaf tea??

This is where my friends, family, church family come in.  I have to admit I need the help of others to sort out many of the decisions of my life.  And of course, in my case, my faith in my God helps me in my decision -making.  I have been praying passionately about this decision.  So far I have had no word except to have her stay at home with me.  So that is where I am at the moment.  But that moment is changing dramatically as her mobility continues to go downhill.

Today I sat down beside her in her sitting room and had a “Mom” to Mom talk with her.   “Mom”, I said, “I am doing everything in my power to keep you here at home with me”. You need to do your part too.  You need to do your exercises when the worker comes.  You need to get up out of your chair more than once in the morning and once in the afternoon to go to the bathroom.  You need to fight to keep your mobility because I don’t know what to do if you can’t get out of your chair or you can’t get to the bathroom.  I know the nursing home will be calling soon with a bed available.  What do I tell them??”

She listens, a demure look on her face.  Oh, how I love that face!  I love my Mom so much.  I want her here with me.  How do I do this?  She starts to get up out of her chair, commenting, “Well, I guess I had better go to the bathroom.”  Did she get what I was trying to tell her?   Does she understand the severity of it?  I think she does – at least for today.  By next week – not so sure.  Later in the day she asks for more water with ice cubes this time.  She never asks for water because she doesn’t like to drink – makes her pee and then that is another exhausting trip down the short hall to the bathroom and back to her beloved chair.  I know she is trying.

Shortly after having the mom talk with my mother, I went downstairs struggling with holding back the tears that wanted to come.  What am I going to do if I get that call?  Suddenly the phone rang and I panicked thinking what if that was the nursing home right now??  Instead it was God reaching down out of Heaven, aware of my anxiety and fear, and sending me his care.  On the phone was a dear worker from Hospice Kingston.  I have talked with her before and she is so kind and seems to just know what I am going through.  She was just making a monthly checkup call but what timing!!  I poured out my heart, my fears and she listened.  And she assured me that if I wanted to keep Mom at home even after she could no longer get to the bathroom etc.  there were ways to do it.  I would have to advocate for myself to secure more help.  I didn’t tell her how hard that is for me.  I didn’t tell her how nervous I am to talk to the coordinator on Mom’s case.  Another huge step out of my comfort zone but I will do anything for Mom.  I said I would make the call.  Another challenge.  This is so hard.  But I have to do it for Mom.

Decisions.  Advocating.  Not easy topics when you are autistic.  Just gotta try to focus on the one element that is the same in all this.  MOM.  And just continue to breathe…… as a dear friend keeps telling me.