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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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

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 day I got my mother back

Sometimes it’s hard to remember what Ma used to be like.  The mother of a few years ago asked about what was happening in your life; wanted to know how your day had been; had opinions about world events; worried about you when you were unwell; and handed out valuable culinary advice.  Fast forward to a few months ago and I had to tell her how to cut up a carrot.  Heartbreaking.

I moved Ma into a nursing home 4 July this year.  The hardest thing I’ve ever done and I’ve regretted it many times over.  It doesn’t matter that I was barely coping and that I’d just about reached the end of my rope.  The guilt will stay with me until my dying day.

On Wednesday last week I was gifted with a visit from my Ma of the old days.  It was a day to treasure and hold close to my heart.  We went shopping.  She wanted to go to a jewellery shop more than anything.  We laughed and joked like the old days.  Talking nonsense.  I took her to a jewellery shop where she was determined to buy me a Christmas present.

Ma hasn’t taken an active interest in Christmas or my birthday for a few years now so this gave me quite a glow inside.  She looked at the earrings and kept pointing them out saying, “do you like this?”  I tried to steer her away but she was determined!!  The lady in the shop must have had an inkling and gave Ma a catalogue and I managed to get Ma to leave.  We’d only gone a couple of metres when after some discussion, we turned back and re-entered the store.  I purchased a pair of earrings we’d both decided on.  Angel wings with little hearts.  Ones to treasure.

We continued on our way and Ma chose two dresses, a skirt and top to buy.  Some of it from me for Christmas.  By the time we left the shopping centre she was glowing.  We stopped at her favourite cafe for lunch and she ate the best I’d seen her eat in weeks.  It was one exhausted old lady I took back.  She kept thanking me for what I did for her which never happens anymore.  I kind of didn’t want to leave as I wanted to savour and cherish my time with my Ma of old.

Next morning I arrived to find her sleeping in her bed!  This hasn’t happened for weeks, which is why she now has bad pressure sores on her bottom.  She was sleeping like an angel and when she woke up she smiled at me.  I gave her an early Christmas present of a rug I’d had printed with pictures of the kitties.  A member of staff walked in and stopped to stare at Ma in her bed and told her she could have breakfast in bed like ‘the queen’.

That was the last I saw of my old Ma.  By that afternoon she had regressed back to the Ma of today.  I knew it was coming but couldn’t help but mourn that my Ma was gone once more.  Today she didn’t care whether I was there or not.  As I left, I told her I loved her, as I usually do and she said, “thank you”.

I do miss her.

 

 

 

Basic care or rocket science?

When did we as a society stop caring about our aged?  Why do people work in aged care when they really don’t care about the wants and needs of the people they are caring for?

Since placing Ma in care back on the 4th of July, I have been fighting to get Ma’s medical and hygienic needs met. What I think of as basic human needs.  Somebody to care about whether her incontinence pad is changed or her teeth are clean; that she takes her medications and that her wounds are dressed appropriately; that she is clean and comfortable.  Sounds like something we would all like? Basic care you think?  Unfortunately not.

I get so tired of fighting about whether Ma’s daily needs are met that sometimes I let things slide. Every day I walk into the nursing home not knowing what I will find.  Some days I feel like not going, as just walking through the door fills me with trepidation.  Will she be crying, in pain, staring into space or just the mother I remember?  My love for my mother and the situation I have placed her in weighs heavily on my conscience.  I go every day because I can’t trust the nursing home.  I’ve learnt from experience that I need to be there every day.

A conference with the nursing unit manager and the manager of the facility give me reassurance for 5 minutes until I visit with Ma and watch Ma’s leg being dressed by a nurse who clearly doesn’t know what they are doing.  We talk her through the dressing change and the words of the nursing unit manager ring in my head.  “I will walk all staff through the dressing of your mother’s leg to make sure they’re competent.  I will sign them off.”

Unfortunately the nurse who regularly does her dressings is on holidays.  Two more emails later and I’m still fighting for her dressing to be done correctly.  I’ve even offered to do it myself.  It’s not rocket science, even I can do it!  I dressed Ma’s leg for many years before she went into care.  The nursing unit manager is very good at telling me what I want to hear, but nothing changes and there’s no follow through.

Ma is a high falls risk and has a chair and bed alarm.  I would say that 8 times out of 10, this isn’t switched on.  One day I came in to find not only her chair alarm wasn’t plugged in but her hand buzzer wasn’t either.  Again and again, I report this.

Over half a dozen times now, I have walked in to find some of Ma’s medications on the floor because staff haven’t made sure she has swallowed them.  Three times this was Ma’s Targin, a slow release pain killer.  Ma hates taking her medications.  She can’t swallow very well any more and staff’s attitude sometimes makes her disinclined to obey their commands.  Staff have even given me her medications to give to her.  I’ve had staff complain about how difficult and time consuming Ma is.  Ma thinks she is being poisoned as she doesn’t know what she is being given.  I tell her what the medication is and what it’s for and use her favourite yoghurt to get her to take them.  More rocket science?

One of the things that makes me angry is finding that she still has a stinky disgusting incontinence pad on from the night before, but is dressed and ready for the day.  Thank goodness this has only happened twice.  But in my view, that’s two times too many.

How do you feel when your teeth haven’t been cleaned?  I’ve been told by the nursing unit manager that residents’ teeth are cleaned twice a day and soaked once a week.  Today, as on other occasions, she asked me to clean her teeth.  They were disgusting.  I soaked them first before scrubbing them.  Ma told me that may be she could now taste something.  I took photos and sent it through to the manager and nursing unit manager.   This makes me want to cry.

Ma now has pressure sores on her bottom because she sits in her chair nearly 24 hours a day.  She has only slept in the bed on a couple of occasions. When she sleeps in the bed she has a panic attack when staff don’t answer her calls and goes back to her chair.  I contacted her doctor to check her bottom and he ordered it to be dressed daily.  I am shown the dressing chart by the nursing unit manager but again, nursing staff don’t follow through.  Today her chair pressure pad wasn’t on her chair but leaning against the wall.  Ma was complaining of pain and felt instant release once I’d placed the pressure pad on her chair.

Why is this happening?  Why am I constantly fighting for Ma’s basic needs to be met.? I feel sick every time I think of what she’s going through.  She cries and tells me she wants to leave.  I feel like I’ve let her down.

What do people do without an advocate?  If Ma’s chair alarm isn’t put on; her wounds dressed correctly; her teeth cleaned etc what happens to the others?  How sad that we have forgotten to care for our aged.  How I regret placing her in care.  I feel like I’ve let her down on so many levels and yet I’m so angry that her basic needs aren’t met by the people that are supposed to care for her.

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.