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.

Going beyond my comfort zone…

We all love to be comfortable.  We love comfortable clothes, comfortable chairs, comfortable beds, and overall just really comfortable lives.  Lives where things go smoothly, we’re not too stressed, things go our way, no obstacles block our path.

For me living with autism,  being comfortable is something I search for after I have dealt with all the stress and overwhelming feelings that are just a normal part of each and every day.  I come home from running errands so frazzled that I curl up in my favourite blanket and rock in my favourite chair and I strain to find that elusive “comfort”.  I go to bed at night fearing that Mom won’t be alive in the morning and “comfort” only comes when I say goodnight to the world. ( if I don’t have bad dreams).  I absolutely love going to church but attending a service often requires ear plugs, leaving when things get too much and a headache for the rest of the day from all the noise, commotion and interactions with so many people.  Would I stay home?? NO, not on your life.  My life, like this cup that I found does begin each and every day at the end of my comfort zone.  I live in the zone of discombobulation, confusion, being overwhelmed, being stressed to the hilt, and extreme exhaustion.

My comfort comes in the fact that I made it through the day.  My comfort comes in the fact that I stretched myself just a bit further than was “comfortable” and in the process I gained success.  The success of overcoming, the success of knowing that I can do a bit more than I was able to do the day or week or year before.  The success of knowing I am becoming a better person – a more patient person, a more self-less person, a more loving person.

I take for example looking after my elderly Mom.  When she moved in with me 3 years ago, I at first found it very difficult.  I was impatient, I was critical, I was self-centred, I was angry.  As these years have progressed and I have daily supported my mother through all her activities, worries, medical issues.  Every day I have been living beyond my comfort zone.  I have had to deal with strange people coming into my home to help care for my Mom,  I have had to deal with bathroom issues no one would want to deal with, I have had to deal with fears, worries, anxieties every day of whether she will fall, have a heart attack, or worst of all die.  All far beyond my comfort zone.  But I can honestly say that as time has gone on I was surprised to see that I have become much much more patient with Mom,  I am not near so critical, I forget about my own wants, needs to do whatever I can to give Mom the best, and I am no longer angry.  I have a new much deeper love for my Mom than I ever have in my life.  She is like a delicate, fragile flower I must care for and cultivate and nurture.  It doesn’t mean I am no longer living beyond my comfort zone.  I am still there every day.  I am so exhausted I think I could fall asleep standing up.  I am so emotionally exhausted my brain feels like mush but when I think of what I have learned by being beyond my comfort zone – I would not go back to a “comfortable” life for an instant.

Life really can begin at the end of your comfort zone.  And for those of us with autism,  I encourage you to keep stepping beyond your comfort zone.  Retreat when you need to  but don’t shy away from doing those things that just stretch you a little but further.  You’d be surprised at what might be waiting for you out there in the world.  I have been stepping out into the world my whole life and I believe that it is only in doing that, that I have found “life” and success and yes, a bit of comfort.  Life is not easy but it is worthwhile.

I found this quote that I think is fitting.  “Embrace uncertainty.  Some of the most beautiful chapters in our lives won’t have a title until much later.”  BG.    And another one – “The cave you fear to enter holds the treasure you seek” Joseph Campbell.

I must say I have entered a lot of scary caves in my lifetime and I have found nothing but the most beautiful treasures that have enriched my life today.  Be brave!  Step out and experience something new.