My Grief Stew

Today I played hooky from church.  I wanted to be alone, alone in my grief.  Anonymous actually.  I went to Chapters and sat amongst  a throng of people and was totally alone and anonymous.  For a long time I’ve aired my grief like dirty laundry hanging out to dry.  Every last piece of laundry scrubbed over and over attempting to somehow make it cleaner, nicer smelling.  Well, I found out that airing our grief in all it’s detail gets you nowhere.  At least it got me nowhere.  No, I must clarify – it did get me somewhere – right in the middle of getting very hurt.  So hurt, I have basically shut down.  And I cannot make sense of it.  I have no way to resolve it and I am left to wonder what in the world just happened.  Since I have no way of logically understanding the other person’s viewpoint I must conclude that I am at fault.  And that has turned my world as I know it upside down.  I must not be who I thought I was.  I thought I was a decent person, a kind person, a loving person.  But through my own fears I have turned into a monster, someone to deny that they exist, someone to totally reject.  I look in the mirror and I do not know who I am now.  I do not see who I thought I was, I see a monster.

So on top of the grief of dealing with my dear mother,  I now have another thick layer of grief to contend with. ( and just to make matters more desperate – I now have 2 family members with cancer and a couple friends with possible debilitating conditions.  My friends and family I have grown to count on in my time of desperate need or family that I wanted more than anything to reach out to after years of little contact are in their own twilight zone of grief and heartache.  I am left to wrestle with my grief mostly on my own now.  Promises to be there for me thrown aside amidst their own life struggles and upheavals.

Like the layers of an onion being peeled back one by one I cry and wail and carry on in the privacy of my basement – alone.  From now on, my grief must be expressed alone.  The onion is continually sliced with a very sharp, piercing knife that cuts to the heart of my soul.  The knife continues to cut….chop, chop, chop…   till the onion is in a thousand pieces and thrown into a giant stew – a grief stew.  My life is that stew with all the chunks of onion floating around.  At unexpected moments I bite down on a chunk of onion and the strong taste makes my eyes sting and tears roll down my face.  I never know when I will hit a piece of onion in this stew.  And it is a stew for good reason because I am stewing about all this – my autistic mind perseverates and ruminates on each bite and I can’t get the taste out of my mouth or my heart.  I have a beef with the world.  My world.  I hold no bitter feelings towards others – I have a beef with myself.  How dare I should trust my feelings with someone else.  How dare I should trust that what someone says is true.  How dare I should trust that I am worth being a friend.  How dare I,  how dare I……   I am nothing but a fraud,  a reflection – not the real thing.  Coke – it’s the real thing.  I’m a bloke – a fake, a joke.  I grieve now even for myself.  For what I thought I was and apparently am no longer.  I grieve the loss of who I was.  The peas (peace) in the stew is cruelly missing as my world is stirred up to a frenzy and my grief splashes out all over the place, hitting others and burning them, and just making everything very very messy.    Grief stew.  This may seem corny to you – and yes there is corn in the stew because it is corny – a cruel joke.  But I am not laughing.  My laughter is gone like the steam rising off the stew.  It disappears into the air, invisible, non-existant.  Grief stew.  The food I am living on right now.  And I eat it alone choking on every bite.

Stepping Back

When someone is sick in our society, we do everything in our power to make it better.  Our survival instinct is very strong and our whole health care system is set up to “cure” the sick.  I hurt my back a couple of days ago.  All I wanted to do was to make the pain go away, to be back to full mobility again, to do everything I could including icing, heat, exercises, rest, visiting the Emergency department, medication anything, ANYTHING…. to make it go away.

Looking after someone who is in palliative care is like doing a total 360 degree turn in thinking.  You literally have to rethink everything you believed about health and getting well.  Instead of fighting tooth and nail and forging ahead like a bull with it’s horns ready to fight, fight, fight….  palliative care requires us to step back.  To take off the boxing gloves and don gloves of the softest cashmere to caress and comfort instead of fight.

To my autistic brain this doesn’t make sense.  It’s not logical.  When you love someone you must do everything in your power to keep them, to preserve them.  To me it seems like giving up.  I’ve spent my whole life having to fight to keep going, to survive that to suddenly step back and just let nature take it’s course is as foreign as being on the planet Mars.

I have to admit I am having a real hard time with this.  I have had several conversations with the palliative care nurse about her blood sugars or her not exercising or not drinking enough water.  She has to each time gently remind me that this is not about these things any more.  This is about keeping her comfortable, and letting her make her own choices about how she wants things to go.  I listen but in my head I cry out NO, she has to do these things.  I can control what she eats, I can control whether she does her exercises.  You are telling an autistic she has to let go of all control.  Stepping back is a huge NO NO.  An impossibility.  Not logical.

How do you let go of someone you LOVE?  I know, I know, I have heard the saying about if you love something you let it go and something about it will come back to you BUT… Mom is not going to come back.  She will be GONE.  I want to cling to her, hold her so tight and NEVER let go.

Stepping back is like turning your back on all that you care about.  I feel like I am standing high in the air on the very edge of a diving board.  I step back and I spiral down and crash into the water sinking deeper and deeper.  I can’t breathe and I struggle to find my way in a strange watery world to a world that makes sense to me and I can breathe.  But I can’t make it to the surface.  I’m drowning, drowning in sorrow and loss.

Stepping back is the new reality for me now.  I have no choice.  The only choice there is, is to keep Mom comfortable and happy.  So can I somehow, turn my fight into fighting to do this in the very best way possible for her.  I think that will be my new goal.  That is the only way I can see to go through this and not drown in the process.  My mantra will be “comfortable and happy”.  I have to let go of the old way of fighting and embrace this new way of fighting for my Mom.  The only thing that’s different is that there is no winner.  And the grief goes on……

No Longer A Child??

One of the greatest fears I have had over the last number of years as my parents got increasingly older was for them to both pass away and I would be left an orphan – totally alone in the big wide world.

These days I face that fear directly on as I face losing my Mom, my last living parent.  This fear has been so great that 2 years ago I was in a very dark place where I concluded that once Mom died there was nothing left for me on this earth.  I planned on taking my own life after Mom went so I could be with her and Dad in Heaven.  This was a certainty for me.  Being left as an orphan somehow had morphed into a nightmare of the worst kind.

I did not understand these feelings I had.  I just knew they were there full force, staring me in the face and taunting me.  I did not want to be an orphan, alone, alone alone……..

I also did not understand the whys of these feelings until I read a book the other day called “Death of a Parent”.  In it, it talked about the universal loss we all go through.  We all lose our parents and we become the next generation.  Our mortality looms in front of us and our history of being a child disappears.  We are now a full-fledged adult.

I don’t know if it has anything to do with my autism but I have always been scared silly of growing up.  There was comfort in being the child.  Being the child meant that when I was needy and didn’t understand the world, I could seek out help.  Children rely on parents and other adults to care for them, to help them, to guide them.  As an “adult” I still rely heavily on others to help me maneuver through this overwhelming world.  This is hard enough for any normal adult but for an adult with autism the world is a very scary place.  So for me to suddenly lose my “child” status when my Mom dies is earth shattering.  Can I still ask for help when I need it??  Am I supposed to be able to all of a sudden manage everything that at the moment I can’t??  Suddenly becoming ONLY an  adult is a 360 degree change and change and autism DO NOT GET ALONG!  Who will I be??  I have enough trouble understanding who I am now.  How on earth will I ever figure out who I am as an ADULT?  I don’t know if I am making sense to most of you reading this.  I have always coveted the CHILD position in my identity.  Losing Mom will change all that…… or will it??

What if…..what if….. what if losing my identity as a child gives me the FREEDOM to explore my life as an adult?  What if it could actually be a positive thing??  What if it means I no longer need to listen to the tapes of who I have been to my parents ( even though I have loved them both dearly, I have lived with an identity of shame, belittlement at times, neglect and much hurt).  What if I can create NEW tapes of who I am?  What if I can see the future as an adventure of discovery and creativity and new beginnings instead a dead end?  Sure, there will certainly be much grief.  I know that for certain.  But could the grief be transformed into hope, renewal instead of a pit of despair of which I can’t escape from.  I think of the caterpillar and it’s transformation into a butterfly.  It literally has to die to self to be transformed into a new creation.  New life can rise out of death.  Just as Mom can have new life in Heaven, I am sure she would want me to live a life here on earth where I would continue to grow, transform, create and love.

I picked the photo for this blog of the lion with the child for a very special reason.  It may seem like a strange choice but just hear me out.  I may lose my CHILD status here on earth when Mom dies but I am an eternal child of the King, the LION OF JUDAH, my God.  I am eternally HIS child.  When I am scared, lonely, needing comfort or advice I have a Heavenly parent that I can go to anytime of the day or night.  I can climb up into the King of the Universe’s lap and rest in His unconditional love knowing my Abba Father will take the best care of me ever!!!!

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.

My Christmas Wish

I haven’t written a post in quite a long time.  Christmas is such a stressful time for me and also so overwhelming and exhausting that I have been just too exhausted to think about writing.

But Christmas Day deserves a post.  What a special day.  Because I have a strong faith Christmas is very important to me.  God came down from Heaven to become a man in order to have a relationship with us.  And what a wonderful relationship it is.  But what does that have to do with this post on grief and my Mom.

Well, Mom is slowly getting worse.  We just got a palliative care nurse to help manage Mom’s care.  She is getting so weak that even signing her name on her few christmas cards was almost more than she could manage and it caused her to have severe shortness of breath.  The last few days I have noticed that when I am with her I can hear her breathe.  It’s like she is lightly snoring or wheezing or something.  Basically her breathing is getting more and  more laboured.

Mom won’t do the exercises that can help her breathing.  She won’t take the medication the palliative care nurse prescribed to help her when she is short of breath.  She wants to do things her way and although it makes me angry I have to respect her desire to do things her way.  It’s so hard to watch her go downhill.  It’s so hard to listen to her complain about all that she can’t do any more and how she feels useless.  It’s so hard to know things are only going to get worse.

I love my Mom so dearly.  I would do just about anything to reverse this aging process so I could have her with me for a long long time to come.  Unfortunately that’s not the way life works.  So this Christmas I made a wish to God.

I asked God that He would take Mom home on Christmas day so she could be with Dad in Heaven on Christmas.  I thought that would be so neat.  She would be free.  No pain, no mobility issues.  She could dance, run, skip and even just walk with no problem.  And her head… her head has caused so much discomfort since her stroke 15 years ago.  She would have no problem any more.  She would be free from her awful head.

I know in past posts I have talked a lot about needing release for me.  I have been at the end of my rope and I needed release but this Christmas wish was more about release for Mom.  I know she is miserable.  It just seemed like such a neat thing if she could be in Heaven on Christmas with her loved ones and her beloved Saviour face to face.  To see Dad again would be so wonderful for her.  I wanted that desperately for her.  But I guess it is not going to happen.  Mom’s doing well today.

Please don’t get me wrong.  I’m not wishing her dead.  As a christian I am wishing her to be in her new body with her loved ones who have gone on before her.  Of course, I will miss her terribly and I will grieve and life is going to be very hard without her.  But at some point you have to lay aside your own fears, your own desires and look beyond your own security and comfort.  I just really wanted Mom to be with Dad.  I know she misses him so much.

I don’t know if this is going into another stage of grief or another acceptance of sorts but I wanted to give Mom a special Christmas gift by asking God to send the angels to take her to Heaven.

It is true I am exhausted, overwhelmed, and burnt out.  I need release too. But I am willing to keep going as long as Mom is on this earth.  I know God will give me the strength.

I guess I will have to tuck my Christmas wish in my pocket and hold on tight to it to maybe next Christmas.  It’s OK to make a christmas wish but if it is not God’s wish then I don’t want that wish at all.  God’s timing is perfect and that is what I want for Mom.  Instead of this Christmas wish I have had the blessed chance to have another christmas with my Mom and that is so special.  When someone is in palliative care you just take each moment as it comes and you treasure each moment as a special gift.  I may  not have gotten my christmas wish but I got a very special christmas gift – my Mom for another christmas.  What more could I possibly ask for?

Did I Happen to mention how Exhausted I Am?

I think one thing that unites all caregivers, whether autistic or not, is the experience of feeling extreme exhaustion.  Being a caregiver to a loved one is very exhausting work both emotionally and physically but especially emotionally.  The daily toll on your body and mind is like a giant vacuum that just sucks all the energy out of you and replaces it with an emptiness, a numbness of emotions and your body goes into auto  pilot.

Being autistic, I am always exhausted.  Dealing with the daily tasks of just living takes just about everything I have in me.  Dealing with people, overload of sensory input of traffic, lights, noise, etc etc puts me in a state of exhaustion so deep each day that it takes hours to recover.  So add in the caring for your elderly mother 24/7 and the exhaustion multiplies tenfold at least.

I feel like most days I am a walking zombie,  I can’t focus, I can’t remember things I should, I can’t get ordinary daily tasks done.  Brushing my hair seems overwhelming,  loading the dishwasher seems overwhelming,  writing this blog seems overwhelming.  And then if you add in a change or a minor crisis or even a major crisis it can be enough to begin screaming in your head.  On the outside,  you gotta keep going.  You are the caretaker,  you are relied on, you are the lifeline of the one you care for.  Without you they would be in dire straits.  Especially like me when I am the sole caretaker.

I used to chuckle when my father was alive and he would be reading the newspaper – a favourite activity.  Invariably,  the newspaper would start to crumple and Dad’s head would wobble and then droop down.  He was falling asleep.  As I watched suddenly the paper would straighten and his head would whip back up and he would look around sheepishly as I laughed at him.  This would happen over and over and is a favourite funny memory of my Dad.  Well, although I never thought it would happen,  I am beginning to take after my Dad in this area.  I will be in my easy chair and the next thing I am waking up an  hour later!  But I must admit that nothing wakes me up faster than falling asleep with a hot cup of tea in my hand.  When that tea spills over into your lap,  you are alert instantly!!  This has happened to me a number of times over the last year.  I don’t recommend it no matter how much you want to be alert!!

Some evenings I can’t stay awake to get Mom ready for bed at 9:30pm.  I have learned that I need to just set my alarm and then go to sleep for the evening.  Fighting the exhaustion is a losing battle so you just gotta find ways to get around it.

So what do we do with this exhaustion??  It’s a given when you are a caregiver.  It’s not going to go away, in fact, it will probably just keep getting worse.  Well,  I am told I have to take good care of myself ( which I am not very good at).  Eat well, get enough sleep at night, take time for yourself, exercise are a few things you can do.  I personally take lots of cat naps even for just 10 min. or so.  I sit in my chair with my blanket wrapped around me and just veg for an  hour.  I do my art.  I go shopping ( my autistic form of wandering).  I also turn to my faith for strength.  I believe God gave me the job to look after my Mom and when God gives you a job He will provide all that you need to do that job.  I can be so exhausted but I seem to be able to get what needs to be done done.  I have never in the last 4 years my Mom has been living with me not been able to attend to her needs.  I always have some reserve that rises to the top to get me through and I attribute that to my faith.

The other thing we need to do to deal with the exhaustion is rely on others whether they be friends, family or community supports.  I am not very good at this I am told.  I am very independent and like to do things myself.  I have trouble with PSWs coming and going from my home.  I am very particular about the way things are to be done.  Often it is less stressful to do something myself than to allow someone else to do it.  BUT…. in order to keep going in this struggle we have to relinquish some of our determination to handle every thing ourselves and allow others to help.  I think this is one of the most difficult things I have had to learn in this journey and I still have a long way to go.

So I know the exhaustion is here to stay.  It’s just a matter of managing it well enough so we do not lose touch with our job as caregiver and the fact that we are our loved one’s lifeline.   We’ve got to stay afloat and be that lifeline in the best way possible.  It’s a very trusting responsibility, one we can never take lightly.

I think I need to take a tip from my cats.  They cat nap all day long and I need to do the same when I get the chance – just not with a hot cup of tea in my hand!

Success in Caregiving – How do you measure it?

On my Dad’s deathbed, I made a promise to him – I would look after Mom for him.   True to my word, I have been doing that since he died.  I looked after her while she was in the retirement home and then I have looked after her in my own home the last 4 years. ( our 4th anniversary of being together is Nov. 30)

I came to the realization the other day that I see this journey as a sort of race, perhaps more of a marathon!  I am determined to look after Mom till the day of her death and hopefully not have to put her in a nursing home.  I also realized that my determination to see this journey through to the end was not just for Mom’s sake but also to in a sense prove to myself I could do it.  I could win the race set out before me.  That would be my success.  Anything less was unacceptable.  In fact, if for some reason Mom went into a nursing home I would see it as a huge failure on my part.  I would be a failure.  Everything would be in vain.  I would have broken the promise to my Dad.  This would be almost unforgivable.

There are days when this journey is too much.  I want to quit.  I want out.  But my stubborness pushes me on despite my protests.  Thank goodness these days don’t last and for the most part I am in the race with every ounce of energy I have.  On both the good days and the bad days I struggle with severe exhaustion and I turn to my faith – to Jesus Christ who said His grace is sufficient for me, His power is made perfect in weakness. (2 Cor 12:9).  I struggle along even if I am on my knees crawling.

The other day my friend was over and I was talking about how this journey had to be a success.  I could not fail.  She very gently pointed out that this journey has had many many successes along the way and the end success was only one of many.  This was a new concept for me.  I had not thought of the success of this journey in this way.  As I mulled over this for several days I have come up with some “other” successes that have happened over the last years especially since Mom has come to live with me.  Here are a few of them:

  1.  I think one of the most important successes that has happened has been the enormous amount of healing that has happened with my relationship with Mom.  She is not even aware of these healings as they have just gently come about from me looking after her.  We have not had deep discussions about our relationship and how it has changed.  I just know without a doubt that the burning anger and hurt that was there for most of my life is now basically gone.  Instead there is a new understanding of who she is and perhaps some of her shortfalls that were her problems not a reflection of who I was as a person.  Knowing she is probably on the autism spectrum has greatly helped me to accept her jabs and comments knowing that she is probably unaware of how they may affect me.  I also now understand some of her idiosyncrasies and don’t take them personally like I used to do.  It is very freeing to be able to shed the hurt and anger and instead just love her for who she is.  It is really a miracle that has happened not just a success.
  2. Those of us with autism can get very self- involved and it is hard to see beyond the end of our noses.  It’s not that we are selfish or self-centred.  We almost need to focus on ourselves to manage the difficulties of life with autism.  One thing I have noticed through taking care of Mom these 4 years is that I am much more outward thinking.  I am able to do better at that “Theory of Mind’ stuff that is so difficult.  I take great pride in providing Mom with little treats that she might like such as her favourite cookie or a pot of flowers or a new outfit to wear.  It brings me great joy to bring joy to mom.  And this spills out into other areas of my life with my other friends and people in my life.  My sensitivity to others and desire to help others has grown.  I don’t think this would have happened if I had not had the job of taking care of Mom.
  3. A very practical success is that by living with me Mom’s financial resources have lasted much longer than they would have otherwise. Being with me has given Mom the financial freedom to do some things she has wanted to do that had she stayed in the retirement home she would probably have run out  of money.
  4. Mom being with me these last 4 years has also given me a financial stability that I might not otherwise have had since I always had to rely on students or other roomates to make ends meet.  It was always a worry if they decided to leave or left in May or June and I was left over the summer with no extra income.  It was always hard not knowing if you would get along with the roomate or not but having Mom with me has given me an emotional stability in regards to who is living with me.
  5. A huge success is just having the company of my Mom with me every day.  To just be able to talk with her and share our lives together is such a blessing.  I’ve learned a lot about my childhood and other details of our family’s past that I might not otherwise have known.  I have recorded some of our conversations so I will always have them.
  6. Being together has also brought us closer to some of our family members who were distant before. I think of my cousin Donna who I cherish and who has brought such joy to Mom through her daughters’ children, her grandchildren.  Her one daughter had twins and we are enjoying seeing them grow and flourish and also enjoy little Drew, her other daughter’s son.  I enjoy running off pictures from Facebook to show Mom of the wee ones.
  7. Another success of having my elderly Mom with me is that as she gets frailer and I try to deal with the anticipatory grief and other issues around Mom one day passing I have had the profound pleasure of meeting some wonderful people along this journey who have become very special to me and have helped me to keep running the race and not to give up.  I think especially of my grief counsellor who I meet with each week.  I told her today that she was worth more to me than the most precious jewels.  I heard on the news today that a DaVinci painting was sold for over 400 million dollars – the most ever gotten for a work of art.  I told my grief counselor she was worth more to me than 400 million! And that’s no lie.  Without her and others at Hospice Kingston I most likely would have failed long ago in my quest to keep Mom at home with me.
  8. Another success is that to be a caregiver you have to be organized.  You’ve got pills to give, to renew and pick up at the pharmacy.  You’ve got laundry to do, food to buy, different supplies to get for Mom, doctor’s appointments to organize, foot care, and the list goes on forever!!  I have had to learn to be organized and learn to coordinate Mom’s PSW’s coming and going and be flexible when things change.  All hard things to do on the autism spectrum.
  9. I’m sure I could  think of a number of other successes but my brain is shutting down.  It needs sleep.  But as I look back on what I have written,  I have to conclude that indeed there have been many successes in this journey already.  It all comes down to how we define success in our life.  I know the ultimate success for me will always be to look after Mom till the end at home if possible.  But I realize that if things take a different turn than what I think they should be I can remind myself of what has been gained over the past 4 years.  So much good has happened.  So much good that will last long after Mom is gone.  And so I head off to bed a little lighter in my spirit because I have found a new way to measure the success of this caregiving journey I am on with my Mom.