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.

The meaning of no or words that have no meaning

It’s getting harder and harder to understand what Ma’s trying to tell me.  Since being placed on morphine her words have been getting more and more garbled.  I know that she thinks she is talking English but to me it’s a foreign language or as my sister calls it, Elvish.  I kind of like that description.  It conjours up thoughts of another world or an alternate reality.  Because that’s where my Ma seems to mainly exist now; in an alternate reality.

Ma’s weight has dropped dramatically and she doesn’t eat any more than a couple of bites of food if that.  The morphine has played havoc with her appetite making her nauseous. Tonight she got Baked Beans and toast for dinner.  After telling her what it was, she told me she didn’t want it but she wanted Baked Beans. I showed the plate to her and told her it was Baked Beans but she didn’t want it… she wanted Baked Beans.  I was able to feed her a couple of mouth fulls before she again informed me that she didn’t want any more of that, she wanted Baked Beans.  I’ve learnt to keep placing small amounts of food in her mouth telling her what it is so that she’ll (hopefully) eat it.

I got her a cup of coffee and she sipped some through a straw before informing me that she wasn’t allowed coffee any more.  On trying to find out why not and who’d told her she wasn’t allowed to drink it, she told me stories told in words I just couldn’t understand.  English words that had no meaning to me. I’m never sure how to react.  I usually end up either apologising and telling her, “I’m sorry, but I don’ understand” or trying to distract her or pretending I understand what she is trying to tell me.

She interacts with the television like it’s real.  She talks to the moving pictures and sometimes interacts more with them than me.  I suppose it’s something to be grateful for, at least she’s getting some enjoyment. She’ll ask them to do something than ask me to find out what’s going on.  Tonight she wanted me to look for a dog.

Ma likes spitting out anything she doesn’t like.  Texture and smell seems to play a big part in what she’ll eat.  Foods she used to love like scrambled eggs, she will no longer try.  Cake is too crumbly in texture and hard foods are too difficult for her to chew.  She’ll usually make little or no attempt to feed herself and chewing a small morsel of food seems to take an eternity.  I’m running out of ideas on what I can coax her diminishing appetite with. Every mealtime is a challenge.  The kitchen staff bend over backwards trying to get her to eat. I always try to be there for at least one meal a day so I can make sure she’s get a little bit of something, excluding Leo, her snow leopard, in her stomach… more about this later.

Last night was challenging.  Her dinner was delivered, little quiches cut up and hot which looked and smelt delicious.  She didn’t want them.  I then asked her if she wanted raisin toast, she did.  I cooked it and she informed me she didn’t want it… I then offered jelly and she had a couple of mouthfuls before saying, “no”.  I tried yogurt next, then watermelon… halfway through all of this, I discovered she had no bottom teeth and found them in a container in the bathroom. Added to this, she informed me that she wanted to eat Leo.  Leo is her stuffed toy Snow Leopard that I sponsored for her at Christmas.  She picked him up and started gnawing on his tail.  I told her that she wouldn’t have Leo any more if she ate him but she told me that she didn’t care, she was going to eat him and started getting quite angry at me. Luckily she became distracted and Leo lives to fight another day.  She loves him and her stuffed cat she named, Fonzie.  We returned to the watermelon, which is much easier to eat with a set of teeth!  Panna Cotta was spat out.  Corn Relish Dip was acceptable for a couple of biscuits before also being spat out.

I’ve learnt that ‘no’ can actually mean ‘yes’ and patience is required by the bucket load.  I wish I understood what Ma was trying to tell me.  I know she gets angry and frustrated at my lack of comprehension.  Sometimes I can guess what she is trying to tell me but more often than not, I don’t. It’s becoming increasing difficult to share her reality.

Every day I tell her I love her and sometimes she tells me she loves me back.  Other words may have lost their meaning but we can still communicate with love.

 

Quality of life?

Dear Ma,

What kind of life is it to lie in a bed day after day with only the television for company and the occasional visitor?  Your daily highlights consist of dressing changes; personal care and meal delivery and me.  They wanted to place you in a ‘comfort chair’ so you could be wheeled around and get you some social contact but they deemed it unsafe when you tried to get out of bed because you thought you could stand and walk.

What life is it to have no real awareness of what’s going on around you?  Sometimes I understand what you’re trying to tell me but more and more often I can’t translate.  You sometimes see things on the television you think are real and can no longer read your beloved books.  Leo, the snow leopard, your cat blanket, and blue ‘blankey’ are now your biggest comforts.

What kind of life is it when you are given pain every time you are moved and you yell and scream?  The pressure sores on your bottom have nearly healed but they no longer want you to sit in a chair for fear of a reoccurrence.  They also don’t think you can ‘cope’ in a chair.  Your left leg has suffered from another infection but is slowly improving but still looks nasty.  Your right ulcer is holding its own.

What kind of life is it when every pleasure you once enjoyed is taken away from you?  I sit with you and sometimes you cry and I stroke your face telling you everything is alright. But it’s not.  My heart is breaking and I wish you’d find peace.  Sometimes you tell me you want to go.  You tell me you’re tired and I wish you sleep.

Today I broke down with staff after trying to fight battles that have already been lost.  I’ve become close to these people and I know they try their best for you.  I know that you will no longer be able to go out with me.  I know that you probably won’t feel the sun and breeze on your face any more.  I hate that every thing that once gave you pleasure has been taken away from you.  When they started the morphine it was to give you quality of life.  A life without pain.

I will continue to do my best for you and will hold you close to me until your time comes.

Your loving daughter,

Jennifer

A different kind of Christmas

This Christmas was my first by myself, with Ma in care.

Since Dad died, Ma and I have planned the menu and prepared it together.  We would go ham and pork shopping.  Turkey was off the list and chicken was in… only because I pleaded.  The Christmas cake would be made and wrapped in foil until the right moment came to ‘open’ it.  The massive Christmas pudding was no longer an option and we resorted to a recipe that made individual microwave puddings that we froze and ate during the year. We’d cook and prepare way to much food but it never went to waste.

Christmas Eve would find us sitting around the kitchen table preparing the different foods and listening to Christmas music.  Christmas Day would find us doing the finishing touches, with more Christmas music, while having coffee and Kahlua. We then unwrapped presents together while sipping on sparkling wine and nibbling on chocolate coated peanuts and smoked almonds.  Last year Ma attended Christmas Day services with me and my sister which was special… even though she dozed off during the sermon.

Last year I had to show her how to cut things up and how to construct the Trifle.  For years, Ma’s Trifle has been the piece de resistance. Christmas was held at our house and my siblings with their families would all descend for lunch.  After my Dad passed, everyone went their separate ways but the family didn’t miss out on their Trifle fix.  Ma would construct individual Trifles for all the men in the family. For some reason men love Trifle.  This fact belongs with, men don’t know how to hang washing.

This Christmas, everything changed.  I woke to an empty house, except for hungry kitties.  It all felt wrong.  I decided to get out and go to the gym and then took myself to Maccas to pick up some breakfast.  I felt I had to change everything.  I came home, showered and went to church where I cried on the way in; during the service; and when I came out. Everything felt wrong and I felt very ‘off-quilter’.  My sister and her family visited Ma and I arrived around 12 to go to the dining room for lunch with her.

Unfortunately they were still dressing the bad pressure sores on her bottom and I walked in to her crying and struggling, as she’s always convinced she’ll fall off the bed.  Staff then couldn’t work out how to get her out of the bed into her wheelchair.  Asking me whether they should use the lifter or whether she could stand.  The more they discussed, the more agitated Ma became until I told the staff to leave her and I would sit with Ma in her room. They organised a tray for her which was beautifully decorated, unfortunately I didn’t get anything.  She only ate a few bites and gave up.

My sister had left four 200ml bottles of pink ‘champagne’ and Ma sat up like the queen enjoying her treat, with morphine attached, sipping her sparkling while watching David Attenborough DVDs. My man arrived around 4pm and after visiting with Ma we tried to leave.  Ma started to cry and couldn’t understand why I was going.  She wanted to come with us.  We sat some more and I kept saying how hungry I was… She settled down some and we left her watching Carols by Candlelight.

My last Christmas with Ma? I don’t know.  I treasure the times we had and found this Christmas to be very difficult, the time spent with her was bittersweet.  I’m glad I changed the way I do things.  I’m glad I got up and left the house.  If you can’t have what’s familiar, do something different. I know that got me through.

Another way to break your heart

Ma was delivered back to the nursing home last Thursday afternoon with no pain medication prescribed and a bandage around her arm from an ‘accident’ that occurred on the bed railings at the hospital.  Her bottom was worse with her pressure sores as they didn’t put her on an air mattress.

Every time she is in hospital I inform them of her triggers.  I also let them know that she will panic if she’s turned on her side or if her head is put flat.  She screams and gets very distressed.  Their track record for listening isn’t great.

Her doctor prescribed a morphine pump to deal with her severe pain.  A couple of days later and she is ‘off with the fairies’.  Very happy and docile unless you try to turn her or put her flat.  The nursing home have moved a new air bed into her room and we make sure to positively enforce how comfortable it is.  She lasts in it for a couple of days until she is back insisting on the now very uncomfortable chair.  Her bottom has now badly deteriorated thanks to the ‘care’ she’s received in hospital.  Staff now spend time dressing her bottom, arm and both her legs.  At home we only had to worry about her right leg ulcer.  If only….

Today I turned up to take her to the Ulcer Clinic.  This was a special appointment that was made because of the drastic deterioration of her legs.  She was in morphine land, and she couldn’t understand how to put her bottom onto the car seat once I had her up.  I rang for assistance and the physio aide tried to assist with a belt but we had to give up.  There was no way we could get Ma into the car.Ma kept apologising to me but I could tell she wasn’t really ‘there’.

I get her back inside and we commenced dressing her ‘wounds’.  We can’t get her to stand so we try and succeed in finally getting her on the bed.  We then have to get her onto her side to get to her bottom.  She screams and thrashes but we hold her in place while the nurse works as fast as she can and we try and distract her.  Towards the end of the dressing the aide collapses and I catch her before she hits the deck while Ma asks for a drink of water…

We move onto her arm, which is a large pus sore, and dress that before moving onto her legs.  I try and distract Ma to the best of my ability but she still jumps and shrieks and calls out.  So much so that she pulls the morphine pump out and it has to be reinserted on her other side.  By some miracle her legs are actually looking better.  The nurses started trialling a new dressing on her leg on Friday and it seems to be working.

We finally get all of her dressings finished and she lies there drained.  She doesn’t want her lunch so I feed her corn relish dip and biscuits, a nectarine and some mango from the fridge stash I keep.  She has been very clingy of late and wants to know when I’ll be back.

She rambles a lot and says a lot of things I can’t understand or decode.  People I’ve never heard of; places I’ve never been to; her car; her cottage; her boyfriend; as well as my boyfriend… who isn’t my boyfriend.  Words that are slurred; laughter at I don’t know what.  I should be glad she’s happy.  Again she asks to be released.

She had her hair done yesterday with purple streaks put in.  Staff have now informed me that she struggled getting to the basin and got very distressed and that they don’t think she’ll be able to have her hair done any more.  Another pleasure gone, if I don’t find a way.

I now realise that our going out days are probably over.  Just another thing that gave her pleasure that has now been taken away.  Going out for coffee and lunch was one of her very favourite things.  I will explore wheelchair taxis but I feel defeated.

I need to accept that my Ma of old is gone and adapt to the ‘morphine happy’ Ma that she’s now become.  She doesn’t suffer much pain but she is now lost to me more than ever.  I’m very happy that she isn’t suffering but I miss those glimpses of Ma and the conversations that we captured when pain etc. allowed us.

We always said we’d chose quality over quantity when it came to her life.  I’m now second guessing as to whether a morphine haze offers the quality we so longed for.

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.