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.

My Pack Rat Legacy

After some quite heavy posts I decided to do a lighter post of something that has been on my mind lately.  We all are left legacies from our parents.  It could be monetary, property, ideologies, ethics etc but let me tell you about one of my parent’s legacies to me.

I’m quite sure you have all heard of pack rats.  I always associated this term with someone who collected all kinds of stuff and had a houseful.    I decided to look up the origin of the term to see where it came from.  There is actually a pack RAT – the furry kind.  It’s often called the wood rat.  And yes, it does have a habit of collecting things.  It apparently has large pouches in its mouth and it will gather all kinds of things it sees as treasures including having a special liking of shiny objects.  It will also drop one object from it’s mouth if it sees something far more interesting and so is in the business of always trading things for other things.

Sounds very familiar doesn’t it. Now I understand how the term “pack rat” got attached to humans.  Many of us are indeed well-established pack rats.  This included both my parents but especially my Dad.  He was a pack rat in the truest form! (except he was not covered in fur!) He saved everything and anything.  Our house was full of files of cut out newspaper articles, books, magazines, pamphlets – including pamphlets to disney world in about 1972 that I discovered in 2011 when we sold their house.  I even am the grand owner of the official guide to the 1967 Expo in Montreal! I found the papers from the day man walked on the moon, and when world war 2 ended.  I even had every person’s registration card who ever stayed at our family’s hotel on the Gaspe – hundreds and hundreds of them.  The hotel was torn down in 1969.   Dad could never throw anything out.  He always imagined a use for it “someday”! I think he lived in fear of what I read in a definition of the word “junk” recently.  It defined junk as something you keep for years and then throw away 2 weeks before you need it!  That was Dad’s worst nightmare!  He worked as a custodian at a public school and as he swept the floors and cleaned the classrooms he would find pencils, erasers, pens, and all sorts of trinkets lost by children.  He brought these all home instead of throwing them out like he was supposed to and they found a home in his desk drawer.  It was pencil heaven.  When we cleaned out his desk my brother and I found enough pencils and erasers to supply a whole school!  Mom and Dad loved garage sales and every Saturday for years we would all pile into the car and with great anticipation hit the road running.  I must admit I am a garage sale junkie too and found many, many treasures I still have to this day.  Mom was not immune to this pack rat mentality ( although she will deny it vehemently).  When we cleaned out their house,  I must have found 60 plastic and glass vases in the downstairs cupboard.  She loved to arrange flowers and so having a collection of vases to choose from was right up her alley.  She also collected curtains and refitted every set of windows in our home on the Gaspe  with new curtains.

The crawl space in Mom and Dad’s house was a pack rat’s delight. It was chock full of old popular mechanics magazines,  old radio parts, books galore, and to top it all off it was the burial place for every appliance that kicked the bucket.  PLUS it was the resting place for every box that every appliance or other item that entered the house came in.  Dad figured you might just have to take it back someday – like maybe 10 years later???  Despite the overwhelming job of cleaning out Mom and Dad’s house ( I still have packed boxes in my garage 8 years later) my brother and I had to chuckle over our apparent legacy.  A lot of it escaped the dumpster sitting in the driveway that became full but much had to be disposed of.  An interesting thing that happened during the selling of their house, was that we had to get the wood fireplace inspected and properly documented.   The stove itself had very little markings on it to help us and we were missing a very important code that the inspector needed.  As we were panicking over how to find this and we could find nothing online, I decided that knowing my Dad, he may have just kept info on it in his files.  So I took to going through his filing cabinet  – and miracle of miracles I found a pamphlet on the stove with all the information we needed.  Now THAT’s where being a pack rat really came in handy.  Dad always believed if he saved things they would come in handy later – even 20 years later!  Although cleaning out their house was a nightmare, I do not resent my pack rat legacy.  In fact I look at it with great fondness.  As we were growing up,  if my brother or I ever needed ANYTHING for a school project or other project Dad would go looking around the house.  Sometimes he had to look for a while but he ALWAYS came up with what we needed.  That was his way of being there for us  and showing his love.

I must say that not only have I inherited much of their pack rat items, I have inherited the pack rat bug.  I am probably a worse pack rat than my parents.  I am a prolific collector.  This may be due to my autism because I am always collecting things.  I have many collections on the go at the same time and this can make it a bit challenging in the financial department.  Some of my former collections included,  a rubber boot collection, a winnie the pooh collection, a cat in the hat collection, heart collection, rock collection, stamp collection, and of course books, books, books.  Today my collections include shoes, clothes including leggings and fancy tights,  pictures of all sorts, card making supplies, japanese paper, blue and white china, pillows, sheets, fuzzy  blankets, jugs, cats, kettles (I know, I know, you can only use one at a time!) silver rings (would be handy if I were an octupus), and of course books, books, books.  My little townhouse is getting fuller and fuller!

I LOVE my collections but I am getting fed up with the clutter.  I am doing some serious thinking about what I really want to keep and what is time to give away or sell.  I recently purged 100 items from my house but you would never know it.  I think those with autism are particularily fond of things – often more than people.  I think this is true with me ( don’t get me wrong friends, l love you too!!)  I also think that as I go through this time of anticipatory grief while I look after Mom, my collecting and attachment to things has ramped up full force.  It is a distraction from the pain, and it also provides comfort however fleetingly.  My books are my most precious collection as I think it brings fond memories of both my parents who were voracious readers.  My hoarding of books is a legacy from my parents I would not give up for anything.  Each book I have speaks of their love to me.  They did not know always the best way to love me but their love shone through in their sharing of books with me.

So why all this talk on being a pack rat?  Well, I think when you have already lost one parent and am dreading losing the other sooner than later, you get to thinking about what they really meant to you.  What were the things that made them so memorable in your life?  Who are you now because of having been their children?  What do you carry on in your life that they handed down to you?  These are all questions that become front and centre when your parents are no longer around.  You wonder who you are – what qualities you have of your parents and what values of theirs you hold etc.  It’s a bit of a soul searching exercise.

In my case,  being a pack rat has certainly been taken on by me from my parents.  I’m probably worse than they were.  I guess the question we wrestle with is what of our parent’s legacy do we want to keep and what do we want to give lesser importance to.  Funny, because that is also the pack rat’s constant question concerning his things.  So maybe right now I am a pack rat wearing 2 hats – one as an official pack rat and one as a  person deciding what my parent’s legacy will be in my life.  A very interesting place to be.  More on this in my blogging as I do a bit of that soul searching.  One thing for sure though – in the next couple of days I will be searching for 100 more items to get rid of.  My cats and my Mom are safe if you happened to wonder!

Further thoughts on self-care or lack of it…

Yesterday I wrote a blog on “Do I care about self-care?”.  I want to write a bit of a postscript on that blog as I have some new revelations about what may be causing me to not look after myself as I struggle to look after my Mom.

Yes, I do have a history of mental health issues, and issues with self-harm and anxiety/depression and these may possibly play in to the reasons why I find it so hard to self-care but this morning I had an excellent talk with my doctor.  She enlightened me on a cause I had not thought of.  You see, although I have been autistic all my life I only discovered this about myself when I was 50 years old.  I am still exploring how being autistic affects different parts of my life when I thought it was just my anxiety or other issues.

My doctor sees me ( and she has been seeing me for over 20 years) as having very linear thinking, something many autistics have.  This causes me to find it very difficult to manage transitions of any kind.  When I have to switch what my mind is on to something different it can be overwhelming and distressing.

As I look after my Mom, this has become a full time job, one that encompasses my whole life.  Everything that happens in my day is somehow related to my Mom’s care.  So you see, I am so focused on looking after her that to switch back to looking after me is just too overwhelming and frustrating.  It is easier and less distressing to stay focused on her.  Thus my self-care suffers greatly.  When I get Mom’s supper,  I am too tired to think about getting something decent for myself.  I often end up eating something fast and unhealthy.  (like popsicles).  I change Mom’s bed regularily because I want her to have the feeling of nice clean sheets and pillowcases.  I haven’t changed my bed in months.  I crawl in at the end of the day and that is all I can manage.  You might ask, why don’t you wash the sheets from both beds at the same time?  Well, that is a good idea in theory but it doesn’t work so well with a mind that catagorizes things in black and white.  What I do for Mom is separate in my mind to what I do for myself.  In my mind they can’t be mixed.  So… my self-care gets severly lacking at the expense of providing the best possible care I can for my Mom.

I also understand that self-care is integral to my care for Mom because if I am not at my best I cannot be there for my Mom and I am a sole caregiver.  She relies on me.  I am all she has.

So this presents a dilemma.  How do I practice the self-care I need to be able to properly take care of my Mom without discombobulating my brain every time I try to switch back and forth between my mom’s care and mine?  Believe me, the switching back and forth is just as tiring and overwhelming as the regular caregiving is.  Being autistic does put a whole extra spin on the job of caregiving.  I understand better now why I struggle so much and feel like I cannot do this job.

Today, I got a very timely book on self-care.  I don’t know if it will have some answers for me but I hope it does.  The trick is to find ways to self-care without having to transition back and forth so much and find ways to see some grey in my black and white thinking.  I’ve got some work to do because if I do not find some solutions to this I know the job is going to get a  lot harder because I am going to burn out.  And that is the very last thing I want to happen.

My doctor gave me one clue to help and that is to focus on my well-being as a partner with Mom’s well-being.  They go hand in hand instead of being separate entities.  It definitely is worth thinking more about.  My good self-care means Mom’s good care.

I guess I want to say in closing that a caregiver with autism does really have some extra issues when it comes to doing the job of looking intimately after some one else.  There are differences that may not be readily visible but I would hope that if anyone is reading this that deals with caregivers that you keep this in mind.  And those of you reading this who are on the spectrum, be aware that there are issues you may deal with that may not be understood by yourself or by others helping you in the caregiving process.  Our brains are wonderful things but they can also make things a lot harder than they might otherwise be for someone without autism.

Do I Care About Self-Care?

Do I care about self – care?   As a caregiver for the last almost 5 years,  I would definitely say a resounding YES when it comes to looking after ourselves in the best way possible in order to do our job of looking after our loved ones in the best way possible.  If we don’t heed this advice we jeopardize our ability to do a good job because we will be exhausted, overwhelmed, frustrated, depressed and perhaps a whole host of other things.  We may get sick physically if we don’t take care of ourselves by eating right, getting enough rest, taking time out for ourselves etc etc.

I know all this.  I know how important it is.  I have been told over and over and I have read it countless times in caregiver literature how important self-care is.

SO……why don’t I heed this valuable advice for myself??

Good question.  I wish I knew the answer but one thing I do know is that being kind to myself is one of the hardest things for me to think about let alone do.  For me I am more likely to fight against all self-care, practice self-sabotage and outright do things to bring extra hardship on myself.

I eat sporadically, often eating the wrong kinds of food for good health.  I often forget to eat altogether.  But I make sure Mom has the best that I can give her, even making extra trips to the grocery store to get just the thing that suits her fancy that day.  THIS IS NOT SELF-CARE.

After I get Mom ready for bed and we say our good nights, I often make my way downstairs to watch TV, usually the news, and I fight going to sleep till I finally fall asleep in my easy chair and wake up in the wee hours of the morning.  I then stumble up to my bed and awake in the morning groggy and exhausted.  THIS IS NOT SELF-CARE.

I am still getting over my viral meningitis.  I am by doctor’s orders, supposed to rest as much as possible, drink lots of water and stay off TV, computer screens and reading.  So the other day I worked around the house for 7 hours straight.  I spend sometimes 2 hours at a time on the computer,  I have read 2 books in the last week.  I continue to have headaches and exhaustion – the result of my not heeding doctor’s orders.  THIS IS NOT SELF-CARE.

Whn things are especially hard in looking after Mom, I often go out wandering.  Wandering is my go to activity when I am stressed.  Probably from my autism as wandering is often a habit of those with autism.  To make things worse I wander the stores and then open my lean pocketbook to buy all sorts of things I do not need.  Then I have the added stress on top of everything else of being in financial difficulty.  THIS IS NOT SELF-CARE.

I often refuse to look after myself as to washing my hair, wearing clean clothes, and other self-care things people just do on a regular basis.  I just don’t care anymore.  I get by on the minimum so that I am still presentable in public and I don’t smell or turn people off.  I don’t have the energy to look after my self.  THIS IS NOT SELF-CARE.

I often turn down invitations to go out with friends or just don’t contact them to get together because I just don’t have the energy or the interest.  I am too caught up in making sure I get everything done I need to get done for my Mom.  She must come first.  She must be looked after as if she were the Queen of England.  All my life revolves around her and her issues.  THIS IS NOT SELF-CARE.

I often refuse to leave Mom for fear something might happen to her.  I often pass-up offers of help so I could go out and do something for myself.  I think I don’t need anything.  I just want to be with my Mom.  Sometimes I think I can do this job all by myself.  After all I know my Mom better than anyone else.  I know her every need,  I know her every routine, like and dislike.  Noone else can do it.  If someone else does come in to look after Mom, I worry all the time I am away from her.  What if they do this wrong or forget that she likes her ice  water, or her 2 pillows at her chair or her 2 cookies after her supper.  Everything has to be perfect for my Mom.  Everything does not have to be perfect for me.  THIS IS NOT SELF-CARE.

I guess you could give this an alternate title of ” Don’t do what I do”.  I am a very poor example of someone who is practicing self-care.  Why??  I’m not really sure.  It’s a question I am beginning to ask myself as I struggle along with this caregiving of my Mom.  Why must I put myself down.  Why must I sabotage myself.  My desire to make this caregiving of my Mom is so strong in me,  it is my heart’s desire to do the best for my Mom – so why make the journey so much more difficult?  I wish I had an answer but I don’t.  I just don’t.  I guess I just want people to know that self-care IS SO IMPORTANT and NOT to follow the types of things that I do because what may happen is that the job you want so desperately to do the best may just turn out to burn you to the core and you will be useless.  Totally useless.  I don’t want to go there so I am trying to see this as a real wake up call for me.  I am trying to see this as a warning like you see on bottles with poison in them.  Take heed while you are still managing.  Don’t wait till you are so exhausted and burnt out that all the good you are trying to do is destroyed by your own hands – the hands that gently care for the one you love the most.  Wrap those hands around yourself and hug yourself and say, ” YOU ARE WORTH IT”  “YOU DESERVE TO BE CARED FOR” – just as much as the one you love and are caring for.   THIS IS SELF-CARE!!

 

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.

Fear Rearing It’s Ugly Head

Fear can be a debilitating entity.  It can do strange things with your thinking, twisting it and contorting it into something that just isn’t true or real.  Unfortunately the issues that fear attacks are real, real enough that fear is a natural go-to in coping with all that is going on.

Mom is failing.  Ever so slowly, almost unseen – in fact, the nurse that visits every week seems to think that Mom is doing quite well.  She is doing well but under the surface, seen only by those who know her best, little things are happening like she is not eating her beloved cookies after supper much any more.  Those cookies were a MUST up until a week or so ago.  She’s quieter.  Often the TV is turned off and she is sitting silently in her sitting room with her eyes closed.  She is sleeping more.  She is struggling to get out of her chair.  Little things but very big things in the whole scheme of things.  I see them, I watch her struggle, I watch the changes happen.  I know what they mean.  And the fear creeps in ready to pounce on me and debilitate me.

Last weekend I went out to my friend’s farm for an afternoon break.  She lives about a half hour from my home.  I had been gone all morning attending church while a PSW looked after Mom.  Then a good friend came and spent 2 hours in the afternoon with Mom.  She was really only left alone for an hour and a half all day.  For some reason, perhaps because I was farther away from home,  I panicked out at my friend’s farm.  I started to “shut down”, a term I use when I have extreme anxiety, a term I use to describe my autistic overload and anxiety when I can hardly move and speak.  Thank goodness it started to happen as we were coming back into town.  I was on my way home and I was able to abort an actual shutting down episode.  The fear though, continued rearing it’s ugly head even though I saw that Mom was OK.  Somehow something profound shifted in my psyche.  Every since that afternoon I am now very afraid to leave Mom, or leave the house for that matter.  Not a good thing.  I worked 2 days this week at the  public library doing 4 hours each day.  The anxiety was sky high.  I blamed it on my getting over my viral meningitis but I knew deep down that Mom was the root of my anxiety.  Today at the library,  I started to cry and had to retreat to the staff room.  I thought I was never going to stop crying.  I was going to lose my Mom. It was only a matter of time.  And that time was ticking away, getting closer and closer all the while.  I desperately wanted to go home just to be close to her.  I am terrified something will happen to her while I am away and she is alone.  I am feeling like I need to be with her every moment of the day.  Do other caregivers go through this?  I don’t know.

When my Dad was dying I vowed to not leave his bedside till after he had passed away.  Several days went by.  I slept in his room with mom there too and I only left the room for short quick bathroom breaks etc.  After several days of this my doctor persuaded me to go home to take a quick shower and get a bite to eat and then come back.  As I was in the shower,  I heard the phone ring.  My heart raced.  I knew what that phone call was.  As I ran to the phone and answered it, my worst nightmare came true.  Dad died while I was away.  Some say maybe he didn’t want me to see him die.  I don’t know.  I just know I  want to be with Mom when she passes away.

So what to do with the fear that threatens to disrupt my life if it won’t let me leave the house?  Everyone I talk to says I MUST FIGHT this fear.  I cannot let it grab hold of me and take me captive.  What will be will be.  I cannot control everything around me and Mom.  I have to let go and let God.  Yes, I need to turn to my strong faith for the strength to fight this fear.  It says in the bible that God did NOT give us a spirit of fear but of power and of love and of a sound mind.  I need to take hold of the power I  have through the authority of Jesus Christ and I need to hold onto the love that Jesus bestows on me and I need to rest in the fact that in christ I have a sound mind not a sick one.  It takes work,  it is a battle,  it is a struggle of major proportions.  But I have to do this.  Otherwise I become no good to myself OR to my Mom.  I cannot help her when I am sick with fear.  I cannot help her when I am immobile with fear and anxiety.  As a sole caregiver of my Mom she needs me to be healthy and able to look after her needs.  That goes above everything else that I may be dealing with.

So when FEAR raises it ‘s ugly head,  I will do what I can to trample it down to size.  I know that fear is always going to be a companion when I am a caregiver to someone who is in palliative care.  We are bed fellows but if it gets too close for comfort I will kick it out of the bed and cut it down to size – a size where I can use the  fear to aid me instead of destroy me.  Fear can be a good thing if it helps you prepare for the unexpected, or helps you plan the end, or helps you gear into action instead of hiding your head in the sand.  I will raise my head high when fear raises it’s ugly head and I will look it straight in the face and tell it to take a long walk off a short  bridge.

I hope you can see I am giving myself a pep talk here.  You gotta do that as you go through this sort of thing.  Caregiving has so many unknowns and twists an turns that fear is easy to turn to.  We caregivers gotta rise above the fear and think of what our purpose is – to look after our loved one to the best of our ability.  Fear can greatly interfere with this purpose.  I sit here tonight writing and thinking and talking to myself that fear cannot interfere with what I so desperately want to do for my Mom.  It is a moment by moment struggle.  But I take on the challenge to make my Mom’s last days the very best they can be.  FEAR BE GONE!

What to do when….

These are questions that roll around in my head at all hours of the day or night.  The sad thing is there are not really any answers that will fix what is going on with my Mom.

  1.  What to do when Mom’s legs and feet are getting more swollen but she won’t keep her feet elevated like we all tell her to.
  2. What to do when Mom’s appetite is getting less and less.
  3. What to do when Mom and I sit now in silence because it’s just too much effort for her to talk much.
  4. What to do when Mom can’t even do up the snaps on her house dresses any more.
  5. What to do when Mom is taking more and more pain killers to help with the shortness of breath.
  6. What to do when Mom can hardly write her name anymore.
  7. What to do when Mom can’t figure out how to work the little recorder I gave her so she could record what she wants to say since she can no longer use the computer or write much.
  8. What to do  when  Mom is sleeping more and more.
  9. What to do when Mom says her heart is perfectly fine even though she is in palliative care for heart failure.
  10. What to do when Mom’s eyes are getting worse and worse.
  11. What to do when Mom says she doesn’t want to live any more.
  12. What to do when the cats are stressed and reacting to my stress because of Mom’s condition.
  13. What to do when Mom can hardly make it down the hall to go to the bathroom.
  14. What to do when Mom cries because she feels useless.
  15. What to do when Mom can’t remember her blood sugar reading in the morning anymore.  Today she told me she must have lost ONE marble ( just one) because she can’t remember her blood sugar readings anymore to tell me.  ( I record them every day).  I told her if I saw I stray marble rolling around I would tell her.  Mom at least hasn’t lost her sense of humor.
  16. What to do when Mom cries out in the night for Lorne ( her late husband) or her Mama.
  17. What to do when my brother is 2 hours away and doesn’t understand any of this.
  18. What to do when I don’t know what to do.

The only thing I can do is LOVE her to bits, LOVE her every moment of the day and night,  LOVE her in the good times and in the bad times,  LOVE her by keeping her as comfortable as possible,  LOVE her when the fear tries to rise above every thing else,  LOVE her by being with her as much as possible, LOVE her even when my bucket is empty ( cause then God’s LOVE will take over),  and put her in God’s hands.  That’s it.  That’s what to do when…….