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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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.