World Gratitude Day – what I am grateful for.

I have so many things and people I am grateful for that I could go on for days but for the purpose of this blog I want to focus on what I am grateful for as a caregiver on this World Gratitude Day (Sept.21).

  1. I am grateful first and foremost for my mother who I have taken into my home these last almost 5 years.  She is my love, my joy, my heartache, and my life.
  2. I am also grateful first and foremost for my faith in God which sustains me daily through this journey of caregiving.  I could not do this job without my beloved Jesus.
  3. I am grateful for the home God has so graciously given me to be able to give a home to my Mom away from the nursing homes.
  4. I am grateful for my few friends who hold me up and give me much love and encouragement and answers when I don’t know what to do.
  5. I am grateful for my church family who surround me with love and support through this caregiving journey.
  6. I am grateful for  the PSW who so gently looks after Mom when giving her her shower twice a week.  She is the BEST!
  7. I am so grateful for our friend Sandra who gives of herself selflessly to help me out with cleaning, doing exercises with Mom, staying overnight when I was in the hospital, and keeping an eye on me to make sure I am doing OK.  She is invaluable to Mom and I.
  8. I am so grateful for the psychiatrist I have who looks after me so well and is such a support and advisor during a very difficult time.  I couldn’t get through a week without her..
  9. I am so grateful for the wonderful people at Hospice Kingston who support me through the caregiving support group and in many other ways.  They give me hope I can get through this in one piece.
  10. I am so grateful for  my two Pastors who put up with me messaging them at all hours and asking frantically to pray.  They also support me with spiritual guidance which i desperately need at times.
  11. I am so grateful that I am connected with a nursing company and I can call them 24/7.  Sometimes it is so lonely late at night and if I am worried about Mom’s condition I can call them and they will send someone out if needed.  What wonderful support.
  12. I am also so grateful for a wonderful nurse, Candace who takes such good care of Mom and shows she reallly cares about her.  It’s not just a job.
  13. I am so grateful for the palliative care nurse I have who, as Mom continues to deteriorate daily, she give me advice, direction and such good care of Mom.
  14. I am so grateful to my family doctor who takes as much time as needed to make sure I am looked after, dealing with constant headaches, exhaustion,  and poor self-care.
  15. I am so grateful for my cats who bring joy and comfort into my life daily.  I couldn’t manage without them.
  16. I am so grateful for my library job which allows me to get out of the house and have a purpose other than as a caregiver.  And I get to be with BOOKS!
  17. I am grateful for tea.  I know that may sound weird but it is when I am sitting in my easy chair or my hammock chair sipping on a cup of tea that I can truly relax and let things go  for a few minutes.
  18. I am grateful for my Facebook friends.  Going on Facebook and seeing what my friends are up to takes my attention away from the worries and cares I constantly live with.  I, whose world is getting smaller and smaller as mom gets sicker, can live vicariously through my friends on their adventures and with their families.
  19. I am grateful for the night when I can turn off the world and just sleep.  I am so tired all the time and so much is on my mind.
  20. I am grateful for laughter.  Mom and I laugh a lot over silly things or something the cats have done.  Laughter does really lighten the load .
  21. I am grateful for my health that for the last 5 years I have been healthy enough to always be able to look after Mom.  Even though it is very hard to practice self-care I am getting better at it and look forward to continuing looking after Mom daily till she rests in peace and I no longer am needed as her caregiver.

I could probably think of many other things I am grateful for as a caregiver.  I am really truly blessed in this journey.  It has been the hardest 5 years of my life but also the absolute best 5 years of my life.

The ABC’s of my caregiving journey

Somehow to me, the alphabet represents something that is changeless, predictable, timeless, and full of patterns.  D always comes before E,   and S always comes after R.    I like that way of thinking.  Maybe it is my autism but I like sameness but at the same time the ability to create within the sameness.  So I got thinking about a Caregiver’s alphabet – specifically for me but of course it would apply to other caregivers as well.  Right now my world feels like it is totally out of control, and spinning downward into a black hole.  Maybe devising an alphabet will bring some order to my outlook on life.  Is it possible to wrap caregiving up into a neat little package??  I guess that is what I am attempting to do with my alphabet.  So here goes.

A – my autism and my Mom’s.  Acceptance   Accountability   Anxiety, advance planning, afraid,

B – books, blanket,

C – compassion, care, compromise, coping, connected, control, committment, comfort, cats, crying, chores, consistent,

D – inevitable death, duty, distress, daily, decline, decisions, disease, days – good and bad, depressed,

E – energy or lack of it, emergencies, exhaustion,

F – faithful, failing, favor, full-time, flowers,

G – grief, giving, God, grab bars,

H – help, hospice, home, an honour, heaven,

I – independent, insecure, insensitive, intrusive, incapacitated, administer insulin,

J – joking, juggling everything, journey, joy

K – keeping well, kleenex, kiss,

L – love, loneliness, loss, laughter, listen, longing,

M – MOM, meals to make, medications to manage, miss, manage everything,

N – naps, never-ending, nurses, dreaded nursing home,

P – patience, PSws, panic, power struggles, perseverence, positive attitude, palliative

Q – quiet, questions,  quest,

R – rest or lack of it,  resilience, reliability, reluctance,  regularity, run errands, rally, retreat,

S – silent screams, sickness, sadness, sorrow, sapping, sleep-deprived, special days and events, stubborness, shortness of breath, sameness,

T – thankful, trust, taxies, total care, tired, treats,

U – unexpected, uncertainty, unable,

V – vulnerable, visitors, no vacation, vitamins,

W – wellness, wisdom, wishes, weather, wistful, water, weak,

X –

Y – yell, say yes,

Z – zzzzz – always tired, zapped,

This is just a partial list.  I plan on revising this particular post as I think of new words to add.  It’s oddly comforting to see this list.  I know it probably doesn’t make sense to most but to see my life as a caregiver laid out in a list of words somehow puts some order into a life that is very disorderly.   Life happens in moments, not days or weeks when you are  a caregiver.  Everything can change in the blink of an eye.  So seeing this list somehow solidifies my life a little bit and even a little bit is a good thing right now.

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.

What – Another Dreaded S-word??

Yep,  that’s right.  And this dreaded S-word is the word SICK!

Everyone dreads being sick but noone more than a caregiver especially if you are the sole caregiver of your loved one.  This is one of my big fears.  That I will get sick and be unable to look after my Mom.

I have been very blessed with good health over the last 4 years that my Mom has lived with me.  I have had my share of colds, odd sick feeling days but no major flu or other bug that has totally forced me to come to a screeching halt.  I came close a couple of weeks ago when I was confined to the couch for several days but I was still able to get up and get Mom her supper, and look after her other needs.  It was touch and go but I did it.  BUT… it scared me.

It really made me think about all the caregivers who are relied upon daily and who often like myself do it mostly alone.  It’s a serious issue.  Someone else’s life is in our hands – their welfare, their well-being hinges on our staying well enough to do what has to be done.

Right now is the time when people are getting their flu shots.  I’m going to get mine in the next couple of days.  I hear the strain of the flu this year is very nasty.  And I ‘ll make sure my Mom get’s hers too.  Not great consolation that I won’t get sick but I will take every precaution I can.

For me it’s not only getting physically sick I worry about.  Being autistic, I deal with anxiety and depression and huge mood swings where my emotions become so intense I don’t know what to do with them.  Then there’s the feelings of being so totally overwhelmed that I just want to run far away.  What if I got too sick emotionally??  I worry about this as the time of being a caregiver stretches on into the future with no end in site and that other dreaded S-word, the word STRESS gets more and more intense.  It’s being in a crazy headspace where you want it to end but then the end means you lose the one you love.  And you can’t escape the craziness of this dilemma. It goes round and round in your head every day, every moment of every day.  I want it to end.  NO, I DON’T!   I want it to end.  NO, I DON’T!  It’s like being in a personal hell.  And you walk around with a smile on your face as you work, shop, meet with friends and noone knows the hell in your head.

I don’t know what I would do if I did get sick.  Well, I do have a plan of care made up of all the details of my Mom’s care.  I do have good friends who would probably come to my aid.  I have PSWs and nurses who could intervene.  The flip side of this is if I get sick will I give it to Mom??  That ‘s my other worry.  She may not be out in public to pick up a bug but I am out nearly every day – in stores, on the bus etc etc.  It only takes one handshake or a hand placed on a germ infested hand rail on the bus to do it’s dastardly business.  I use a lot of hand sanitizer.  Kills 99% of the germs.  I still wonder about the other 1%.

I guess I just keep praying that I won’t get so sick as to not be able to look after Mom.  I have always maintained that God gave me this job to do so He will give me what I need or protect me from what I don’t need to do the job He has given me.  That is my hope tonight and tomorrow and the next day….