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.

Mother’s Day Every Day

This is one of my most beloved pictures of my Mom from when I was young.  Here we are ( I am on the stool clutching the next book to read), my cousins and me listening intently to Mom read us a story.  I loved when she read to me which was something she did every day.  Today in my life I hold that love in my life by my own love of books and reading and even working in a library.  Books are one of those things I am passionate about and even collect not just to read but to hold, smell, hug and treasure.

It’s Mother’s Day today.  I am going through this day with a lot of mixed feelings.  It’s a happy day of celebrating my Mom but it is mixed with fear, anxiety when I wonder if she will be here next year to celebrate or will she only be here in my memories.  I am treasuring Mom today like she was a precious jewel.  I played hooky from church to be at home with her.  I have given her a gift, a poem and I made her a bouquet from my own garden of spring flowers and put them in my sterling silver baby cup.   I washed her sheets so she will have fresh sheets to crawl into bed tonight.  I am getting her one of her favourite meals from a nearby restaurant for us to enjoy tonight.  I am making her a favourite dessert – coconut cream pie.  I want this day to be not any Mother’s day but one that I can say I did my best to show my love to this amazing woman I call my mother.

You see, it has not always been this way.  There were years when I did not want anything to do with Mother’s Day because I was bitter and angry towards her.  I had deep hurts in me that would fester constantly and I struggled for years with feelings of shame, inferiority and abandonment.  I had a huge hole in me that would not be filled where the security of knowing my Mom loved me and cared about me was empty, dark and engulfing.  This hole overwhelmed me for a good portion of my life.

It was only after Mom came to live with me 3 and a half years ago that healing began to happen as I had to forgive and love this woman in order to take care of her in a way that I had promised my Dad I would when he died.  I had grown up believing it was biblical and right to honour your mother and your father.  I never let my Mom know the deep hurt I had from her. I always kept that inside of me and asked God to take care of it.  I never wanted to hurt Mom and have her know she did not do the job I wished she had done.  I bore the hurt silently in her midst always wanting her to love me.  As I have taken care of Mom these last few years,  washing her clothes, getting her meals, injecting her with insulin and wiping up urine I felt my own desire to be loved slowly be replaced by a great desire to love her.  And as I recognized the autistic traits in her, I came to understand by leaps and bounds why she was the way she was.  She was not out to hurt me ever.  She just always did not know how to love me the way I wanted or needed to be loved.  She did not understand that the words she often said would sting every time she said them and cause bitter tears.  She was just telling family stories, her own recollections.  Living with Mom, I saw her in a whole new light.  A fragile, needy woman who had her own fears, anxieties and depression.  And I just continue to love her more and more each day.  I have a deep compulsion to protect her, to comfort her and to shower her with the best of everything I have to offer.

I want you to know this was not possible in my own strength.  It has been through the grace of God, his love flowing through me to her,  his strength to carry on each day when it felt like all I wanted to do was quit.  I rely on this strength every moment.  This is the hardest job I have ever done in my life.  Although I have healed so much and there is now no longer an empty, gaping wound in my soul, I now strangely enough, have another problem.  Because now I don’t want to lose her now that I have found her and feel loved by her.  I finally for the first time in my life feel accepted by her and now I could lose her any day.  BUT…  I have a precious gift that I now carry with me daily.  When my Mom goes on to Heaven,  I will have no regrets.  I will have no bitterness, no anger.  I have peace, a blessed peace that is beyond understanding.  God’s peace.  These 3 years have been the hardest of my life but they come with the greatest reward ever – the reward of no regrets and the reward of getting to know my Mom as she really is and not as I thought she was.   Life is not easy but life is good.   And today is a GOOD day.  It’s a celebration of a mother and daughter who have come through the fire and have been transformed into a precious pair of diamonds.  We are survivors – Mom and me.   Happy Mother’s Day Mom.  I love you so so much.