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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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.

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.

Moving on with Ma…

A year ago on  26 June 2015, I started writing my blog, sharing my experiences looking after my Ma. This week, on Monday, I moved my Ma into a nursing home after caring for her full-time since September.  Full-time care became necessary after three anaesthetics in five months left her with delirium which I was told was dementia and that she would never be the same.  They were partially right.  After five months of delirium she got better although she was never the same after.  And after getting better the confusion and hallucinations started to progress.  So much so that I couldn’t leave her for more than an hour at a time.  Prior to this I worked full-time and cared for her.

I was told aged care moves fast.  I received a call on Thursday saying there was a room for Ma at her preferred nursing home, aka the house on the hill.  I picked the paperwork up that afternoon.  After nearly smothering under the pile of forms I managed to fill in most things, with the help of one or two of Ma’s medicinal brandy!  I asked Ma questions while Ma gradually got quieter and quieter until finally she asked me when we were leaving.  I stopped to explain that she wasn’t going anywhere until Monday and that I would be with her every step of the way.  I also asked her to give the place 4 weeks and if she didn’t like it, we’d work something out.

We were there at 10 the next day with paperwork filled in meeting with the Financial Officer. (I was discouraged from bringing Ma even after I explained I had no carer for the time it would take to finalise the paperwork.)  As it was, I wanted her to see the room that was being provided and I also had to fill in paperwork about ‘end of life’ care.  To perform CPR or not; to do everything to save her life and move her to a hospital or just go with palliative care.  Ma and I have discussed her end of life preferences before so I knew the answer to the questions but still felt the need to discuss them again with her.  My head was spinning over the financials with no idea of what we were going to do.

We moved her electric lift chair in on Sunday and were there on Monday moving in.  I was told that usually aged care providers ring the day before for you to be in the next day.  And I thought this was fast!

The view near her room is beautiful with a lovely verandah residents can sit on and enjoy.  Rooms on this side of the facility cost a lot more because of the view!  There is also a lovely little sunroom right next door.

My sisters and I move her in on Monday.  Her brandy is written up by the doctor and she gets her tipple of a night time.  I talk to the registered nurse and staff about her ‘unique’ problems in the hopes that she won’t have the problems of constipation, ulcer infection and skin rashes that have occurred previously with her two periods of respite care.

I don’t sleep well that night waiting on a call to tell me she’s fallen or something else has happened.  My mind won’t shut down!  On Tuesday I start to decorate.  I hang her pictures up and put some other homely touches in place.  I notice her heart patch hasn’t been removed the night before and that the person dispensing the pills doesn’t really know what they’re doing as they are Certificate 4 and not a nurse.  She tells me that she doesn’t have any idea what any of the pills are for… SIGH.  We discover an old friend of hers a couple of doors down who we stop in and see.

Ma sleeps in her chair again as she can’t get into the bed.  The physio isn’t due until Thursday and I’m told that staff aren’t allowed to life patients legs in beds so Ma will probably be sleeping in her chair until Thursday!  I explain that she is used to a handrail beside the bed which she uses to get herself in and out of bed.  I’m told they don’t have them as they can be looked on as a form of restraint… SIGH

I’m finding things out everyday.  Many things I wish I’d been told before.  I will be making a few suggestions in the hopes of improving things.  There is no resident’s information pack that gives family any information.  My life certainly would’ve been made easier if I’d known then what I do now!

 

Ma’s way with words (Part 2)

Ma doesn’t say many of her old sayings any more.  Occasionally she will utter one but more often than not it’s a new turn of phrase.  Some real rip snorters in fact…

I’m a bit of a Queen fan (the rock group).  Whenever there is thunder around I will utter the words from Queen’s Bohemian Rhapsody, “Thunder bolt and lightning”.  A couple of year’s ago Ma started saying, “very very frightening” in response.  I have no idea where she got the words from as she was never a rock and roll aficionado but to this day if I say my line… she will say hers!

These days Ma’s nights and days are very much mixed up.  There are many times when she thinks night is day and vice versa.  Even though it’s pitch black outside she will still insist it’s daytime and there is something ‘wrong’.  After one such occasion she uttered to me, “I don’t like these 24 hour days”.

Some days I can’t win.  While we were out shopping I showed Ma a dress I thought would suit her.  After looking it up and down she told me she couldn’t wear it because it was a grandma dress!  I reminded her she was a grandma… she just looked at me. Undaunted, in the next shop, I showed her another dress to which she told me she couldn’t wear because she was a grandmother… I gave up.  No dress was bought that day.

Recently I purchased a bottle of wine and mentioned the name of the wine to Ma.  Ma must not have heard me correctly (or I didn’t speak clearly) because Ma responded with, “what?” “You’ve prepared human?” “Since when have you become cannibal?”

I made some waffles recently on Ma’s ancient waffle iron.  The ones that weren’t eaten I put in the freezer for later use.  Ma requested some of the waffles for her dessert which she polished off with ice cream and maple syrup.  After she had finished demolishing them she told me she could still hear them ‘waffling’…

My favourite new saying of Ma’s would have to be this one… The other day I asked Ma if she wanted something to drink to which she replied, “yes”.  When I asked her what she wanted she told me she wanted something, “wet and wild”… I finally worked out she meant brandy.  The new name for brandy in our house is, “wet and wild”.

Every new little saying or quip gives me a giggle.  The mother of my past is slowly diminishing.  This new mother is different but still amusing.

Ma’s way with words (part 1)

Ma’s always had a way with words.  She was a reader and great doer of crosswords.  If she had a spare moment her nose would be stuck in a book.  Growing up she’d have us kids confused or in stitches with her various sayings.

I had curly hair as a kid and whenever I was naughty, which was quite often, Ma would start reciting, “There was a little girl, that had a little curl, right in the middle of her forehead.  When she was good, she was very very good… And when she was bad she was horrid!”.  This would always make me cranky!!!  If we pulled a face we were told if the wind changed our faces would stay like that  (I was always afraid of that one).

One of my favourites was, “up in nanny’s room behind the clock”, which she used whenever we wanted to know the location of something that she didn’t want us to know.  If she didn’t want us to know where she was going… or was just being contrary, she’d respond with “I’m going there and back again to see how far it is.”  There was also the “wigwam for a goose’s bridle” in response to us asking what something was… again used if it was something she didn’t want us to know.

Kids being kids, we were always getting into things we shouldn’t and Ma was always finding us out to our complete astonishment (us thinking we were so clever).  When we asked how she knew, she’d always tell us, “because I’ve got eyes in the back of my head”.  My sister one day decided to find out whether this was true and checked the back of Ma’s head very thoroughly.  I think she was very disappointed when she couldn’t find anything. If we were being particularly painful (which was probably often) and asking why?… but why?… why? She’d respond with, “because ‘Y’ is a crooked letter and you can’t straighten it!”

If Ma was making a phone call to somebody she knew well she’d announce herself with: “It’s only me from over the sea’, said Barnacle Bill the sailor” or “is that you, because this is me” followed by a laugh.  To describe somebody who was very happy, she’d say they were “as happy as Larry”… I never did find out who Larry was or  “Billy Johnson’s black pig” for that matter.

I always remember Ma reciting a rhyme about Thor, “The Thunder God went for a ride, upon his favourite filly.  “I’m Thor!”, he cried. The horse replied, “You forgot your thaddle, thilly!”  This would cause me untold glee.

But my favourite saying of hers would have to be “better an empty house than a bad tenant!” in response to a belch… or we’d get, “beg your pardon Mrs Arden, there’s a chicken in your garden”.

I know this is about Ma but I couldn’t not write about my Aunty, who we always thought was the very epitome of a lady, describing somebody as the ‘town bicycle’! (I’ll let you work it out).

These sayings I treasure because they remind me of Ma and my childhood.  She still uses some of them to this day.  I thought I’d make an attempt to capture them before they get lost.  She has also coined a few new ones in recent times which I’ll cover in Part two.