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.

 

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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.