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…….

My Motto: Be Prepared!!

Most of us whiz through our days doing all the normal jobs we do each day.  We shower, we prepare meals, we take out the garbage, we go to work, we cuddle our kids, we snuggle down to a night in our comfy bed along with a host of other routine jobs we count on being able to do no problem.

May I take you on a trip where the normal disappeared and in it’s place was chaos, unpredictability and a feeling of helplessness.

A couple of weeks now,  I was chatting on the phone at 9:30 at night just before heading to bed.  Suddenly without warning, I experienced extreme pain in my head.  I’ve had headaches before so I did not think too much of it but when it was a 10 out of 10 doozy of a headache all through the night,  all through the next day and night and into the third day I decided to see my doctor.  After hearing my symptoms, my doctor ordered me ( not advised or suggested) that I go straight to the emergency department at our local hospital and I did just that by ambulance.

Now here is where everything normal in your life suddenly goes out the window and you are in a totally new predicament.  If it were just me to worry about I might have not been too upset but when you have a 90 year old mother sitting alone at home expecting you home to give her supper and later get her ready for bed ( including giving her insulin shot) life just got way more complicated.  Here is where being prepared for anything can really save a bad situation from being a total disaster.  I’m not saying I’m totally prepared for anything.  Noone can do that.  Life is just full of surprises that noone can count on.  In the twinkling of an eye your whole world as you know it can change.  BUT…  we can do things to help us cope in the case of an emergency.  When we are a caregiver it is essential that we have plans in place especially when we are a sole caregiver like myself.  So… here are some of the things that I had already in place on that fateful day a couple of weeks ago:

  1.  I run my house as if I were a nursing home ( which in many ways I am).  I keep ALL Mom’s info on different agencies, her DNR, and all other important papers in a plastic file holder attached to the wall just inside our front cupboard.  It is immediately accessible to anyone coming in.
  2. I keep an updated PLAN OF CARE for Mom which lists in detail ALL the agencies, their contact info, and all other people that deal with Mom like her hair dresser, her foot care person.  It goes into detail what she eats at each meal, where all her meds are, what her routine is like, and also details things like when the garbage goes, what the cats eat, where to get their food, where I buy Mom’s foods she especially likes and where personal items of care can be found.  This document is in the possession of 4 different people, 2 of which have keys to my house.  They are each aware of the others and so can coordinate any care needed if I am unavailable and until my brother from 2 hours away can get there.
  3.  I keep a copy of Mom’s list of pills she takes, a copy of her DNR and a copy of my own pills I take in my purse as well as a 4 page document of phone numbers I may need in an emergency.
  4.  All Mom’s medications are in one place in a special bin in my bedroom so anyone can access them if I am not there.
  5.  I keep a plastic zippered bag with fresh sheets, and a fresh comforter in it.  It sits always in my bedroom in case anyone has to spend the night with Mom ( they would sleep in my room)
  6. I try desperately to keep my phone with me at all times when I am away and have it as fully charged as possible.
  7. Mom also has a lifeline so if something happened she could press it and they would get in touch with me.
  8.  I try to make sure financially I always have some extra in case of emergencies or taking taxis etc.

So basically that is my preparation plan.  It’s not perfect but it’s better than nothing.  So back to my emergency I had 2 weeks ago.  As I was in the ambulance heading for the hospital, all I could think of was what was I going to do about Mom??  It was already late in the day and she is terrified to stay by herself at night.  I had to think quick.  So here’s where my preparation aided this dilemma.  Fortunately,  I had a fully charged phone with me.  Touche #1!   Next, I had my 4 pages of emergency numbers in my purse.  Touche #2!    In between doctors coming in and out, asking me countless questions then sending me for a CT scan and then a lumbar puncture  I began phoning people on my list.  I am so thankful for Sandra, the wonderful lady who helps Mom and I out quite a bit.  She agreed to stay the night ( and then agreed to stay a second night!)  I phoned my good friend who came by to help confer with the doctors as she is a doctor herself and knew me so well and what I was dealing with looking after Mom and having autism.  She mentioned to the doctors to be careful when giving me medications as I can be quite sensitive.  Sure enough I reacted to the morphine and had trouble breathing.   Unfortunately, my list of numbers was not quite complete and did not have the nurse’s company on it and I could get noone to come and give Mom her insulin.  I was terrified I was going to be the cause of killing her somehow.  ( that list has now been updated – that’s one thing about info while caregiving – it’s very fluid.  It changes almost daily and updating info is so important)  Also I was in so much pain that being able to hand the doctors my list of pills was much easier than racking my painful brain for what I was taking daily.  One thing I wish I had that I didn’t was an extra key for my house in my purse to give to my friend so she could stop by before my friend Sandra could get there.  Anyways, no plan is perfect.  I will never say that you can be totally prepared but what I am trying to say in this blog is that there are ways to be somewhat prepared so that some of the strain and stress is alleviated in an emergency.  We as caregivers have such serious responsibilities when caring for another often very sick individual that anything we can do to help with those blips in life is worth it.

I can’t not end this blog without telling one humorous tale in this whole story where life turned upside down for a while.  I have to admit albeit ashamedly that my bedroom is usually a total disaster!  One can usually not find a path to the bed without stepping on a variety of items.  My bedroom is sort of a catchall for anything that does not fit somewhere else.  In the back of my head I have often had the fear of “what if” someone needed to sleep in my room in an emergency??  They’d never find the bed!!  Well, on the Monday that I came down with this severe headache I was feeling fine most of the day and I just decided that it was the day I was going to clean my room.  I spent most of the day doing it, even getting down to the rug so I could vacuum it!  I was so proud of my accomplishment.  It looked better than it had in at least a year!  So little did I know that that night someone other than me would be sleeping in my bed!!!  I really think my God who knows all things knew that room needed to be cleaned and He just prompted me to do it.  And he made sure I had a fully charged cell phone which I struggle to normally remember to do.  God is all-knowing and I believe He wants us to be prepared in our lives but to also know that in times of chaos, we can rest in Him knowing that he never changes.  He is the same yesterday , today and forever.

So, what was the outcome of my trip to Emerg??  Well, I was diagnosed with viral meningitis and spent 2 nights and 3 days in the hospital.  It is now 2 weeks later and I am still recuperating with constant headaches all day long.  I can’t do more than the bare minimum and I have been off work.  It is something I wouldn’t wish on anyone but my Dr. is confident that in a month’s time I should be free of headaches and back to normal.  Normal???  I don’t put any trust in that word anymore.  I look at the word “normal” with a great deal of suspicion and fear.  Normal doesn’t exist anymore.  I go moment to moment with whatever comes my way and I just hope I am somewhat prepared for what will happen.  That’s my new “NORMAL”.

The Grief of the Orphan

When I lost my Dad 7 years ago,  it was devastating and I was grief-stricken but there was a comfort in knowing I still had my Mom.  She helped me plan the funeral, she was there to share memories with,  we talk about Dad a lot and we share the loss in our lives that his death has brought.

It’s going to be very different when I lose my Mom.  One of my greatest fears is that I will be left alone in the world.  An orphan.   Who will help me plan Mom’s funeral?  Greater still,  who will I be without a parent in my life?

Parents are the constant in our lives.  They have been there since our beginning.  They hold all our history.  They knew when we took our first steps,  said our first words,  they were there when we entered school,  went to our sports practices,  manouvered on egg shells as we went through our teens.  They are our sense of permanence,  like a rock to stand on and look out from to the big world beyond.  When Mom goes,  that rock dissolves into sand that shifts with the tide as it flows in and out of our lives.  Nothing will seem permanent or solid.

I will no longer be someone’s child.  That identity is gone forever as the tide takes it out to sea and beyond and in it’s place it washes in the fact that I am now the adult and the next in line to die. I don’t want to be an adult.  I have never felt like an adult – only acted as one.  This may be part of my autism or my mental health issues but I have never felt grown up, forever a child.  When Mom dies, this feeling will clash violently with my no longer being someone’s child.  How do I make sense of this?  I’ve always felt the need to be protected,  cared for, and “managed”.  How do I suddenly make sense that I no longer have a mother or father to do that for me?  Having autism is extremely difficult, and downright overwhelming.  Who will see that I am alright?  Who will care for me?  Who will see that I am managing alright?  Yes, I have friends but it is somehow not the same as that person who brought you into the world and has been with you since day one and knows all about you.  I know that in the days of late,  the roles have pretty much been reversed in Mom and my relationship.  Not in our mother -daughter essence but the day to day managerial roles.  I look after her meals, her laundry, her pills but it is still not the same as that deep, primal connection that makes up our mother-daughter relationship.  And yes, it can be volitile at times and rocky but the solid rock under us is still there strong and secure.  I am going to lose all that.  I fear this more than almost anything in my life at this time.  It is a fear that sends me into a very dark place and a very alone place.  This profound change in identity is both disorienting and very confusing to someone who is at best confused about who they are.  I will be nobody’s child.  Nobody’s.

So yes, that leaves me an orphan.  An adult orphan.  Like a tree where the roots have died.  Will I topple and crash to the ground?  Will I flounder through life after Mom is gone?  Who will I be?  What will I do?  How will I survive life as an orphan?  Will I truly be alone?  There is no one who can take the place of my mother.  I have friends who can be friends and confidants but not my mother.  They won’t tell me when my slip is showing or when I have food down my front.  They won’t remind me to wear clean underwear everyday and take my umbrella with me –  it looks like rain.  They won’t hand me a 20 dollar bill and tell me  to take a taxi home – it ‘s going to be dark when I am done where I am.  They won’t remind me of the time I drove them crazy with my incessant counting to 100 or when I wandered off to follow a big dog when I was 2.  They won’t be there to hear me talk about my two cats all day long and never complain that I am talking about them too much.  Only my Mom can do all this and so much more I could fill many books.

That’s not altogether true.  There is someone who can be all this to me and so much more.  And that is Jesus Christ.  Jesus loved orphans and there are many verses in the bible about his love and care for orphans.  He even said He would NOT leave us as orphans but he would be with us.  He loves me even more than my mom or dad ever did.  He loves me with an everlasting love as if I were the only person on the earth.  He says he will never leave me nor forsake me. He promises to set my foot upon a rock that will never perish – that rock is himself.  I can trust Him to look after me when Mom is gone.  It won’t be the same as having Mom but it will be so good.  There will be much grief and pain and deep deep darkness but he said to follow him into the darkness and he will light the way.  He is the true light of the world, and the personal light for each step I take.  He will bring me out the other side of the darkness into a new place and my identity will be in Him and I may be an orphan by worldly standards but I will be a beloved orphan, treasured and protected.  And just as wonderful,  I don’t have to give up my being a child because I am God’s child forever.  No death will separate me from being a child of the King.  WOW!  That’s pretty reassuring.  I know there will be times of doubt when I will forget these truths but then my friends will step in to remind me and be there for me to encourage me to believe once again.

It’s gonna be OK.  Not sure I believe it fully right now but if I look deep in my heart and in the heart of God I know it’s gonna be OK.  A little rocky but I like climbing on rocks, a little lonely but like I said before I have 2 wonderful cats – oh, don’t get me started!  If’s gonna be OK.

The Night is Coming…

I used to love when night came because it meant that I could go to bed and say goodnight to the world for a few hours.  I used to love the quiet, the peaceful feeling, the way I could relax now that my work was done for the day.

Mom turned 90 in April.  Since then she has steadily gone downhill.  She often has her worst times at night.  Now I fear the night.  As it starts to get evening I begin to wonder if tonight she will have a hard time.  The dread increases as the evening progresses.  I check on her about 8pm to give her some medication to help with any shortness of breath that may come on.  Some evenings she is just fine.  Other evenings she is so bad I fear I will lose her.

She now sleeps sitting up in her easy chair in her bedroom.  That is the only way she can get comfortable and sleep with the shortness of breath and fullness she feels in her chest.  Sometimes she has chest pain and out comes the nitro spray.  I prop up her pillows,  I put on her fan,  I get her her medication and her insulin shot.  Then she can go to sleep.  But she often can’t sleep.  She just tosses and turns.  I lay on her bed in the dark watching, watching…  Yes, her chest is still rising and falling.  Yes, I hear her breathing.  I keep watching while I sip on a cup of tea.  The minutes tick by.  Soon it is a couple of hours.  I don’t want to leave her till I know she is OK.  Sometimes I phone the nurse on call.  Just to get reassurance I am doing everything I can possibly do.

I pray and pray some more.  I talk to God in the dark.  I just downloaded a CD by a group called Rend Collective.  They have a song called “True North”.  Part of the words is, ” I will follow you into the dark”.  These words have a profound effect on me because I must face the dark.  It is all around me and I can’t escape it.  As I lay on Mom’s bed in the dark of the night I am following God into the dark of my soul.  The dark of knowing that one of these nights Mom probably won’t wake up in the morning.  But I am comforted by the fact that what is true in the light is also true in the dark and God is my comforter, my protector, my all sufficiency, my enough.  Both in the light and the dark.  It says in the bible that the dark is as light to God so if I follow Him into the dark I do not have to be afraid of the dark cause God is light.

It’s hard not to let my own fears rise up above the comfort of God’s light in the dark.  I have to force myself to rest in God and trust him rather than give in to the fear.

Usually around midnight or 1am,  Mom seems to settle and if she talks to me and she seems lucid I feel I can leave her and go crawl into my own bed.  By this time though I am usually on hyper -alert and I can’t sleep.  I often go downstairs and watch TV for awhile, have a snack, and do a quick check on Mom every once in a while.  Sometimes I fall off to sleep in front of the TV,  sometimes I am awake till the light starts to stream in the window.  I usually can count on 2 days of hyper-alert before i can settle down to normal life again.  Unfortunately, these nights are happening more often.  There is not going to be enough time to regroup between bad nights.

Well, the night is coming….  I had better go give Mom some medication and hope for the best.  Another night is coming…..

Selfish Woes – Further Thoughts

My last post entitled “Selfish Woes” had me a bit worried after I posted it.  Worried because I do not want those who are caring for loved ones to think that caring for ourselves in the midst of our caring for others is selfish.

My post was a lot about my trouble with the word “selfish” because of my connotations it had for me from my growing up.  But that is MY story and should not be the story of caregivers who may read my post.

I want you to know that I do value the fact that we MUST look after ourselves if we are to be the best we can be for our loved ones.  We cannot care for them if we are so burnt out ourselves we can hardly function.

Having said that,  despite the fact that I do feel selfish when I do things for myself I know how important it is to do them anyways regardless of those feelings.  Caregiving is one of the hardest jobs for anyone to take on especially if you have a family you are also trying desperately to take care of.  I don’t have children, only my two crazy cats and I find that the last 4 years of looking after Mom are the hardest years of my life.  For me,  it is essential that I look after myself because there is noone else to do the job if something happens to me.  I am it!  So what am I doing to look after myself??

Well,  here are a few things I do.  I have tea with friends – one of my favourite things to do.  A quick hour with a friend energizes me for a week.  If I am having a particularily hard day, I may go to my safe haven in the basement and cry or even scream and just let out the frustration and exhaustion.  Sometimes I will just sit or snooze down there while Mom is sleeping in the afternoon.  On my days when I have a bit of respite I often go wandering.  It could be shopping, or a walk along the water or working in my beloved little church library I run.  This is my positive wandering.  Many times in my life I have wandered when it was not safe like in the middle of the night.  I run when things are scary or upsetting – perhaps part of my autism.  Wandering is an outlet for me, a way to release pent up feelings.  I just have to make sure I do it safely.  I’m actually taking a wander up to Ottawa soon – my first day away in a few years.  I am going to take in the Lego exhibit and the Impressionists exhibit – positive wandering.  Another thing I do for myself is rocking either in my rocking chair or in my hammock chair with a good cup of tea.  Having a cup of tea is my comfort and rocking eases the stress in my stomach.  One thing that I do find very hard but know I have to do it is to give myself time when I am finished work.  I come home, say hello to Mom and then go and have a cup of tea and rock for about a half an hour.  I know Mom is eager to see me but my autism requires me to have time to recoup from being with people for several hours,  I NEED time alone.  Then once I have had my time alone I can deal with the evening and being with Mom.  I usually make a second cup of tea and go up to Mom and have a chat or watch TV with her for a while.  I do feel really guilty about this but I know it is a necessity to my well-being or I will not function for the evening.  I bury myself in a good book at times, I watch a bit of TV,  I do a craft ( I make my own greeting cards) or I work in my garden. Perhaps the most important thing for me personally is to pray or read my bible or just rest in the presence of God.  God gives me the energy to go on day after day.  This is essential to my personal survival.

So…. I do know I have to override any feelings of being selfish and make sure I take time for myself.  I guess what I was saying in my last post is that it is extremely difficult sometimes to do that overriding.  But it has to be done if we as caregivers are going to survive.  Taking care of ourselves as caregivers is as dear as making sure we drink lots of water on a hot day.  And some days are a lot hotter than others when you are a caregiver!  Drink that water!!!

Selfish Woes

As I think about caregiver issues, the one that comes to mind most often besides being exhausted is the issue of feeling guilty when we take time for ourselves.  Maybe I am wrong but it seems to be in every book I read on caregiving and in a lot of articles, testamonies etc.  I must say it is a HUGE issue with me for a number of reasons.

Growing up with undiagnosed autism,  I often appeared to be selfish or not wanting to be with others, not looking at others, not interested in engaging with others.  My Mom, not understanding my extreme need to be alone at times, and the the exhaustion of engaging with the world, was forever calling me selfish.  I don’t know if she just picked that word to best describe her frustration with  me but I grew up believing I was basically the most selfish person on the face of the earth.

Thus, for most of my life,  I have desperately tried to negate that despised word by trying to help others, give things to others, remember people’s birthdays etc etc.   No matter how hard I try, I still feel the sting of that word and still feel I am selfish.

Enter stage left –  my job as a care giver.  No job is more selfless than being your all for a loved one.  I have taken on the job of looking after Mom 180%.  My whole life now, revolves around my Mom.  Every aspect of her life I manage and I do it as if she were the Queen of England.  I want only the very best for my Mom – nothing less will do. I go to great lengths to do the best for Mom including ignoring the advise of a number of people in my life who feel she should be in a Nursing Home.  She IS in a Nursing Home – Lorna-Jean’s Nursing Home – the best one around!!  I go to great lengths to get her exactly what she wants to eat,  I bring her flowers from my garden or from a store.  I will do ANYTHING to make my Mom’s end of life the best it can be.

So here is the question.  Have I beat the selfish label by taking such good care of my Mom?  Have I cured myself of this despicable title?  Am I trying to prove to my Mom that I am NOT selfish like she has told me all my life??  Am I trying to prove it to her at the extreme cost to my own health and well-being?

Well, if I am honest with myself,  I still feel very selfish.  And here is the conundrum that faces every care giver.  When is enough enough?  When is it OK to take time for yourself?  And take it without feeling guilty?  I don’t know the answer to that because I feel guilty everytime I leave the house to do an errand or to do something for myself.  I feel guilty if I am too tired to watch Lawrence Welk with her.  What happens if she dies and I missed the chance to have that last time with her?  There is always that fear.  What if I miss an important moment with her.

BUT…  what if I secretly desperately wish to just go away for a day and not have to worry about her?  What if I want to go shopping and stay a little later than I maybe should?  What if I wish I could visit a friend in another city?  What if I secretly wish I could be released from this job of care giving?  Oh Dear…. selfishness raises it’s ugly head.  What if I wish I didn’t have to make her supper every night?  What if I wish I could go out to my friend’s farm and not have to worry about staying a little longer than I should.  What if I wish I could take a course in the evening or join the knitting club on Friday nights but Mom doesn’t like me out at night?  What if I wish I didn’t have to see her decline in front of my eyes?  What if….what if….  what if….  I feel so, so…so… selfish.  There I said it.  Maybe Mom has been right all along.  Maybe selfishness is built right into my character and I’ll never get rid of it.  There’s nothing like care giving to put a spotlight on feeling selfish.   The most selfless job creates the most perceived selfish thoughts.

I struggle every day with this.  The more tired I get, the longer the care giving goes on, the harder it gets, the worse Mom  gets, the more selfish I feel.  That old song “Please release me” ( just those three words) goes round in my head more and more and I feel guilty more and more.  A never ending circle of selfish woes.