The Final Goodbye

On Friday 17 February at 4:30 in the afternoon, I watched my Ma take her last breaths.  I felt relief that she was no longer in pain.  I was lucky enough to be able to say my goodbyes and to say ‘I love you’ before she slipped away from me.

I’m focusing on the fact she is no longer suffering.  I’ve been saying goodbye to pieces of Ma for the last couple of year’s as bit by bit dementia and other illnesses took their toil. My life has revolved around her care and now it doesn’t.  I’m a bit lost as I shake off the haze of surrealism that clouds your senses when you lose somebody close to you.  I’m in no hurry.

I will write more later.  At the moment it’s raw yet new.

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Playing God

I never expected to have to make life and death decisions for my Ma.  As Ma’s health has deteriorated over the last few years I’ve taken control of all of her medications and medical appointments.  If difficult questions were asked over treatment, Ma would turn and look at me to answer, trusting that I would do the right thing by her.  So much so, that she made me her Enduring Guardian.  This gives me the right to make life and death decisions on her behalf when she is unable to do so.  It allows me to ‘play’ God on her behalf.

When I placed her in the nursing home we had to fill out paperwork for her ‘end of life’ wishes.  Did she want to be resuscitated in the event of heart failure? Did she want to be intubated?  Ma has always said to me that she didn’t want this so I signed the paperwork to say ‘no resuscitation’.  This means that if she is sick and requires antibiotics or anything else, she will be taken care of but if her heart stops, nobody does anything to try and get it going again. Hard core stuff.

Early Monday morning the nursing home rang me to tell me Ma was ill and that she had a high temperature, her oxygen levels were low, her heart was not good and she was incoherent and did I want to send her to hospital.  Of course I said yes and she was taken into Emergency with severe, uncontrollable pain; a raging infection in her newly ulcerated leg in fact. Again I was asked the question of resuscitation and what my wishes were in her care.  Again I had to say to let her go if heart failure occurred.

Ma was crying with pain.  She could barely verbalise as she was in too much pain to do so. I held her hand and tried to take her mind off it.  They pumped three different types of IV antibiotics into her without waiting for test results and gave her three different pain medications.  All without giving her relief.  She cried at me, asking me to knock her on the head so she wouldn’t feel the pain any more.  She called out to God and then told me he wasn’t listening, telling me he didn’t answer her.

I prayed to God to end her pain, to let her die.

A few hours later and she was feeling better.  The pain was more manageable and she’d been moved to a bed.  She was bright.  Later in the day the Dr told me she’d also had a mild heart attack and what did I want to do about it.  I told him I didn’t want any further trauma to ma and he said they would monitor and he would tell me if something had to be done.

I returned to work the next day but told the hospital to ring me if she became distressed. When I arrived in the afternoon they went through her notes with me.  The read out the phase, ‘daughter refused treatment’.  I thought to myself, ‘I wonder whether they think I’m a bad daughter for refusing treatment?’  I hate that I’m making life and death decisions on her care.  She keeps telling me how sick and tired she is of being poked and prodded.

Today I arrived and was stopped by the day nurses who told me that Ma had had a very bad day and was very distressed.  I could hear her yelling and crying from her room.  They’d had to give her an enema and then had to turn her to clean her up.  My sister and I gave her a couple of cappuccinos that made her feel better.  She started to become less distressed and we helped her eat some dinner.  She then developed chest pain and started crying, becoming very distressed, again, praying to God and telling me he doesn’t listen.

The doctor on call came and she told me Ma’s heart had been ‘playing up’ for the last couple of days and that ‘I wanted no intervention’.  I explained that Ma’s heart and blood pressure medications had been changed only in the last week and she decided to place her back on one.

Right decision, wrong decision, I don’t know.  I know in my heart that Ma’s tired and wants to rest.  She doesn’t want to be pushed and pulled and ordered about any more.  She doesn’t want to be in pain anymore. She told me she’d like to go stay on an island somewhere or just sit in her cottage.  She wants peace.  I’m ready to let her go but I still second guess every decision I make.  She’s still giving me cheek, talking about the kitties and discussing day to day things.  This makes my decisions all the harder.

My wish is that she’d just slip away in her sleep. Much as I love her, I want her to have her peace. I want her to be without pain. I want her to have her rest. I want to have done my best by her. I suppose I want forgiveness also.

The list that gets shorter…

For the last few years I’ve written Ma’s Christmas cards for her so all she just has to do is sign.  Every year, the list gets shorter as friends and family die.  This year as I went  through Ma’s address book I had to cross off five people.  Each page had names and addresses with a cross through them and I paused to reflect on each person as I made my way though the book.

There was Joan, a cousin of my Dad’s, who passed away at the beginning of November.  She would have turned 93 this year.  A good innings.  She was a kindred spirit to me and I think of her often.  She loved cricket and the Sea Eagles.  She was as sharp as a tack and would discuss world affairs and the Australian political scene.  We talked often on the phone and she’d always ring on my Dad’s birthday, even when he’d passed.  She didn’t have many relatives left and I became concerned after I couldn’t raise her.  I only found out she’d died after a friend managed to track down the church she went to.

That got me to thinking about my own mortality.  If you die and nobody mourns your passing does it mean you never existed?

The possessions you’ve amassed, the photos you’ve taken, the music you’ve collected becomes just a pile of stuff that gets divvied up.  Things that held great meaning to you no longer hold any meaning because you’re no longer there to give them meaning. So maybe it’s time to let go of the possessions and focus on relationships and building memories.  Yes, your memories will die with you, but the impact on others will continue to live on through them.

I look at my Ma and know that our time together grows short.  Every time I look at the mess in the house and think of all of the jobs that need doing I think of Ma and about storing memories.  The mess and the jobs will all still be there but Ma may not.

The Little Blue Card

 

Every time somebody dies in Ma’s nursing home a blue card is placed on the door where their name once was.  It’s like nobody existed.  Their rooms are stripped and cleaned ready for the next resident.  In the last week I’ve noticed two blue cards appear in the corridor to Ma’s room.  The lady we used to hear calling, “I know” is now silent.

I feel bad that I didn’t know the names of these residents.  Did they have family?  Did somebody comfort them in their final hours? Did they pass peacefully?  I now find myself walking past resident’s doors, on the way to visit Ma, trying to memorise names and looking for blue cards.

I know that one day, Ma’s door will have a blue card.  That I will be required to strip the room of all of Ma’s personality in order for the next ‘resident’ to move in.  Rooms are in short supply and somebody has to die for somebody else to move in.  That’s how aged care works.

Death.  It’s something a lot of us don’t want to think about.  The loss of a loved one rips a huge piece of your heart out.  It doesn’t matter how prepared you think you are.  How ready you are to let them go.  It still hits you like a Dementor from Harry Potter, sucking all joy and meaning from you.  When a close loved one dies, it’s like you exist in an alternate reality or a bubble.  You just surface dwell while the rest of you exists in a ball of hurt.

I’ve learnt to treasure the moments I share with Ma.  Especially those times when she is at the top of the roller coaster that is dementia.  Special smiles and laughs that we share that I tuck away in my heart so I can remember them in the future.

The long goodbye…

Since Ma was placed in care on 4 July until now, I’ve watched her slowly deteriorate.

Today I visited to find her with her head in her hands confused and unhappy.  She was so happy to see me and told me of ‘people’ in her bed; ‘people’ taking her things and waking up in a place different from where she went to sleep.  She started to cry and told me how she was so unhappy and felt so bad but couldn’t tell me in what way.

The nurse who was giving out her nightly medications gave them to me as she didn’t want to distress Ma further.  I talked to Ma about them and she agreed to take them.  I gave her a hug and we went outside to side in the sun and feel the breeze on our faces.  We sat and talked.  She couldn’t remember me being there yesterday or that she’d slept in the bed the night before.  She was distressed because she couldn’t remember and she felt insecure. She told me I was the only one she trusted.  She broke my heart.

On Wednesday last week she was very confused and weak and she ended up going to hospital to get checked out.  They did scans and x-rays and bloods.  The bloods came back with infection and showing that her kidneys were failing.  The doctors were wonderful and we talked about the need for comfort rather than invasive procedures and opted not to do a urine test.  Sounds easy?  Just wee in a jar.  Not with Ma.  Her legs weren’t working and last time they had to try and get her on a pan on the bed and she screamed.  They were going to put in a catheter but decided against it.  Too much!

In the end they gave her IV antibiotics and arranged transport back to the nursing home.  I arrived to find her tucked up in bed… Ma hasn’t slept in a bed since she entered the nursing home back in July.  She has slept in her chair every night which is why she now has pressure sores on her bottom.  I stayed the night with her and she never settled all night.  She’d drift off to sleep and her legs and arms would twitch and wake her up.  She would call out and talk about things that weren’t there.  She cried and told me she had had enough and wanted to go.  She broke my heart.  I wanted her to be able to go.

Around 5am I told her I would go and she started crying.  I said I’d stay.  My sister relieved me around 9 and I went home and bawled my eyes out.

Saturday morning arrives and my man turns up with flowers for me and for Ma. We went to see Ma and she was sitting there asking to be taken out!  I will never get used to the roller coaster ride.  I’m barely dragging myself around and she’s raring to go.  We pushed her along the path on the common and my man demonstrated his prowess on the exercise equipment and she laughed and laughed and made jokes.  I could hear her joy.  She said how she loved having the sun and breeze on her face.

She doesn’t eat much now and is down to just over 70kg from around 90kg.  She has difficulty swallowing.

Tomorrow we are supposed to go to the Ulcer Clinic.  Do we go or do we not bother any more?  Her legs are now stable.  The doctor has cut back on her medications because she has very low blood pressure now.

When do you say enough is enough?  They talk to me about ‘comfort care’ just managing the symptoms.  I wish I knew how much longer we had.  I want to spend as much time with her as possible but I’m not sure how much time that is.  I know that I’m now ready for her to go.  Seeing her suffer mentally and physically breaks my heart.  In the past, I’ve been selfish in wanting her to stay.  Now I just want her to be free from pain, confusion and suffering.

She breaks my heart. My wish for her is to know that her family loves her.  I hope she gets that wish.